The Disability Experience - Book of Short Works and Poetry related to Disability,   Author Debbie Johnson
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Debbie's Friends
Mentall Illness
Primary Immune Defiency
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Can One Person Make a Difference

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11/8/2012
Free Children's Book
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Making a Difference
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Debbie's Friends



New Children's Book about Disabilities available free


In Debbie’s Friends, Debbie Johnson starts by introducing herself and the fact that she is an amputee. In the following chapters, two children she befriends, Jenny and Johnny, meet her friends with other disabilities, including physical, mental, and developmental ones.  They talk to Debbie’s friends and see them in their environment to understand how they cope with their limitations while remaining functional people.
 
The goals of the thirty-four page book are to: demystify disability, promote acceptance of the disabled, and to show how similar the disabled and non-disabled are. The author hopes that by introducing these concepts to children at a young age, the next generation will demonstrate increasing acceptance.
 
Debbie Johnson plans to distribute Debbie’s Friends free of charge to schools, libraries, churches, and other settings where it may be useful. By emailing, debbiesfriends1@gmail.com, a copy-ready version may be obtained. The user may make additional copies. Please help spread the word to others that by sending an email, they can receive Debbie’s Friends and see if they would like to use it. That’s it. That’s all they have to do.
 
Debbie has been networking over the past year with those who may be interested in this, and will be notifying them of the book’s availability. She would love for the book’s email box to be overflowing and take months to clean out. That would give her less time to write, but this is a project she truly believes in.
 
Debbie Johnson is author of The Disability Experience, The Disability Experience II, and now, Debbie’s Friends.
 
Please repost this on social media and other locations to help spread the word


































Mentall Illness

Mental Illness
      Minds malfunction due to chemical                                 or physical deformity
      Effective medications are available for most through         psychiatry
      Not usually dangerous to themselves or others in the community
      Therapy effective in learning how to cope for the majority
      An occasional hospitalization might be required for stability
      Let others give help and support during times of adversity
      In most cases, remain able to work and participate in the community
      Learning to cope with symptoms and medication side-effects a necessity
      Living a healthy lifestyle; eating, sleeping, and exercise is a priority
      New research and effective medications are under development constantly
      Enjoyable activities and relaxation give happiness the greatest opportunity
      Support of family, friends and groups may provide with new possibility
      Stand–up against stigma, shame, and keep hope and dignity
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Primary Immune Defiency

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Learn all you can about your condition.  Your doctor may only spend a few minutes explaining your diagnosis.  Do online research, order free publications from the Immune Deficiency Foundation, or attend a conference.  Knowledge is power - to be the healthiest you can be.

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Join foundations and support groups.  You can never have too much support or information.

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Arrive to your doctors appointments early.  Most doctors book several patients for 1 time slot so if you are the first one to arrive you will also be the first one to go home.

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Bring a list of questions and/or concerns with you to each doctors visit.  It is too easy to forget something otherwise.

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Think positive.  Prepare, but don’t expect to have every negative side effect or experience.  Remember, as you get to know other patients with your condition, that we are all different and may have different reactions and outcomes.  Go into everything with an open mind and just take one day at a time.  Always doing your best to stay well.

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Fear makes everything worse.  Practice relaxation techniques to cope with the fear and anxiety that can come with medical tests and treatments.

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Do everything in your power to be well.  Not many people do; this can make a difference even to those of us who are genetically challenged.

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Weigh risk versus benefit in making your decisions.  It is important to lead a life of meaning, especially when facing a serious chronic condition.  At the same time, not every trip, party or experience is worth risking your health for, so weigh what each means to you.  Be sure to try to do what you can from the top of your priority list.  Don’t let others force their priorities on you.  Healthy people don’t have to make the same choices, so don’t expect them to understand.

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Reward yourself, you deserve it.  Give yourself things to look forward to.  Being happy and having goals, dreams and plans can carry you through so much.

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Take one day at a time.  It is too overwhelming to look at each chronic condition as forever.  Keep in mind that the longer each one of us lives, the better treatments will get, so there is much reason to have hope.

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Take notes and find ways to remember important information about your condition and your infusions. For example, bring a good listener to doctor’s visits and use the IDF eHealthRecord to keep track of your medical history and infusions.

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Don’t compare yourself to others.  We are all on a different path in life.  It is easy to feel terrible when we compare ourselves with healthy friends or relatives.  Each one of us has something special & unique to offer the world.  Just work at being your best self.

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Living with PI can be hard but it can also help you develop some positive traits.  You will also have experiences you wouldn’t otherwise have.  Try to find the good that has come from your journey.

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Try not to lose patience when teaching others about your condition.  It can take time for those around you to take it all in and some may never get it.

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Stay on schedule with your infusions and all other medical treatments.  We all get busy but remember your treatments are giving you a healthier life.

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Always get copies of all your lab and test results.  You would be surprised at how often abnormal results are not mentioned when you are called back with results.  Also, if you need to visit an emergency room or another doctor, be sure you have recent results to show them.

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Try to schedule all routine tests & appointments when its not flu season.  Its hard when you have a number of specialists to see but it will lessen your chance of catching something from a waiting room.

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When traveling with your SCIG supplies by plane get to the airport early in case you are delayed by the TSA.  You do have to declare any medical supplies over 3 ounces. Be sure to have your medical supplies in one bag, with a doctors note.  You are allowed a medical bag AND a carry on bag.

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Know and respect your limitations but know that they may also change over time or with improved treatments.

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Don’t expect a whole lot of support or understanding outside the primary immune deficiency community.  We are raising awareness of PI one small step at a time, but the general public still knows very little about our conditions or how exactly to deal with us.  Some lucky patients are surrounded by people who are brilliant and have lots of empathy, but most of us remain overlooked or misunderstood by many.  Try not to let this make you bitter.  Instead try to be a model of how to treat others.
 
Joanna Tierno RMS, RMS Medical Products Bolg

Seeking Submissions


A New Years’ Resolution

  In looking at what I can do next to promote equality for the disabled, I decided rather than just my story, others also have their stories. That thought led me to the decision to put together an anthology of poems on disability written by the disabled. The only one I can find is an anthology of stories written many years ago.   If you would like to contribute a poem, please email me at disabilityanthology@gmail.com.

If you would please send a short biography of five lines or so I would like to include it. If you feel comfortable in doing so, share your disability, but this is not required.

  I will put the anthology on Amazon/Kindle.

Any proceeds will be used to donate books on disability to libraries.

  Disabilities can be mental or physical.

  Poetry may be any type or style.

   I am planning to put it together in February so would like submissions by the end of January.  

 The tone can be positive or negative. We all have both feelings at some time.

  I am thinking of the title “Our Disability Experiences” with the subtitle ‘A Poetic Anthology’.

  Poems can be previously published, just cite original source. Those on blogs, Facebook and other social media do not need to have a citation

.   I am looking forward to reading many wonderful poems. Please send just one poem. If I need more, I will let you know.

  One of my first disability poems:  

  The Real Me

  If you look past my disability
, the real me you will see.
I have goals just like you,
and yes, I have my dreams too.
Look past my broken outer shell,
and who I am you can tell
 My wheelchair
doesn’t define the real me in there
 Look deep inside, you will see
my feelings and creativity.
Look for who I am you will see
, I am not just my disability.

Can One Person Make a Difference

Attending a conference on disability advocacy this past week has given me hope that, yes, one person taking action can make a difference in whatever causes he or she supports. I will write more on this later, but a little food for thought for tonight. As I am generally on my soapbox for one cause or another while sometimes it seems fruitless, a speaker this morning left me with an encouraging thought.
 
One person can change the opinion of a few others. If these people pass it on to a few more, and so on and so on, yes, one person can start a wave that could ultimately lead to a change in social thinking. Merely sitting at home emailing others can be the fodder of a beneficial overhaul of societal norms.
After the workshop, I had a couple minutes to speak with the speaker privately. I told him about my work and especially my latest endeavor of a children’s book on disabilities. He wisely pointed out that children are not born prejudiced, but it is a learned behavior. Catching children young, before discriminatory behaviors are learned is an idea he fully embraced and supported.
Just a short update, but will write more on this subject, soon.

Dust if You Must

Remember, a house becomes a home when
you can write “I love you” on the furniture....

Dust If You Must
by Kathy Powers

Dust if you must but wouldn’t it be better
To paint a picture or write a letter,
Bake a cake or plant a seed.
Ponder the difference between want and need.

Dust if you must but there’s not much time,
With rivers to swim and mountains to climb!
Music to hear and books to read,
Friends to cherish and life to lead.

Dust if you must but the world’s out there
With the sun in your eyes, the wind in your hair,
A flutter of snow, a shower of rain.
This day will not come around again.

Dust if you must but bear in mind,
Old age will come and it is not kind.
And when you go and go you must,
You, at last, become the dust.

Extracted from my EBook, Barcelona, a Wheelchair Users Guide.


Extracted from my EBook, Barcelona, a Wheelchair Users Guide.
"Barcelona Hotels
Hotels with rooms that are adapted can be found in most locations within Barcelona city centre and surrounding localities, most with roll-in showers, a big plus for the majority of wheelchair users. A common grumble about roll-in showers in Barcelona hotels (and elsewhere I’m sure) is the positioning of the showerhead (almost always too high for comfort) and position of a shelf for shampoo bottles and soap (awkward to reach or turn to from a shower chair). Adjustable beds are a rarity and standards vary across the city in respect to access, one major hotel for instance has four rooms suitable for wheelchair users (as do most 4 star hotels) however there's a few niggles to deal with such as a pole with a hook that has to be used to hang clothes in the wardrobe (standard fittings are used), mirrors are too high to be of any use for wheelchair users in the bathroom, in all other respects its a great hotel, ramped access everywhere, Braille on all access points, lift numbers etc. and some of the most helpful staff you will find in Barcelona. I've yet to find a hotel that has the concept of 'access' for wheelchair users buttoned down to a tee but overall the standards are good. USA visitors sometimes comment on how small rooms are but this can be said of all rooms in general where Europe is concerned in comparison with many USA hotel rooms. One point to note if using a power chair, check with the hotel before confirming and paying for a reservation that your chair can fit into the lift if required as many hotels don’t have what might be termed full sized lifts, and don’t forget to check that you have a charger that can be used in Europe.

Following on from the above comments it is nice to be able to comment that after visiting more than 50 hotels in Barcelona many have taken steps to introduce more user friendly facilities and the SB Hotel Group is one of them so do check their website for room prices as I do highly recommend them to you.

A downside in booking hotel rooms is that few hotels or chains offer accessible room reservation facilities on-line and the use of the wheelchair friendly symbol can basically mean anything from ramp access into the hotel only, to a fully disabled friendly hotel that’s suitable for all kinds of disabilities. A call to the hotel reservation service is generally required, itself not an easy process when trying to describe what a roll-in shower is, but fun if you have a sense of humour and lots of patience! In reality its always best to contact a hotels reception directly and ask to speak to the reception manager if possible, firstly because the staff always speak English and secondly reception staff generally know what you're talking about! When asking about a roll-in shower it is imperative that you ask if a shower chair is available as standard as many hotels charge for the hire of a chair and if you don't ask for one when booking you will have the hassle of trying to get one upon arrival.

Apartments
Buyers beware has been the mantra in retail for decades and it certainly applies in Barcelona when reserving accessible apartments for as many visitors have discovered for themselves these ‘accessible’ apartments are anything but accessible. It is wise to check all access claims by asking for photographic evidence starting with access from the street. The majority of buildings in the centre of Barcelona have high entrance steps which is an immediate barrier to access. Next ask for the opening width of the lift if the apartment is on the ground level, the minimum opening should be 80 cm, most old style lifts are rarely more than 74 cm which will impede access for most wheelchair users. The rest is standard, photos of the roll-in shower, bedrooms, etc making sure that internal doors are a minimum of 80 cm wide. Check also where household rubbish has to go as even if by luck an apartment is accessible where the rubbish has to go may well not be!

From 2014 you need have no fear of falling foul of spurious claims by apartment owners in regards to accessibility as there are now two apartment services available in Barcelona with apartments fitted and adapted to extremely high standards, the first is Mic Sant Jordi. Essentially a rehabilitation centre Mic Sant Jordi offers more than 30 apartments for short term lets (location may be an issue for many as it is not located in the City centre), the second is MH Apartments who opened a new centrally located apartment block in January 2014 that includes a two bedroom fully accessible apartment with roll-in shower.
More details from

Bright Spark Speaking

Bright Spark Speaking
Lynda Leigh

Lynda Leigh is a professional speaker with a unique insight to enhance customer service. She is passionate about communication and has experienced first-hand the consequences of EEO/diversity at work. 

++++++++++++++

 Can you name one leader -- a CEO, CFO, MP or anyone you view as a leader - who's blind, deaf, a paraplegic, an amputee or has Down's Syndrome? Most Australians would be hard- pressed to name a friend of a friend or a celebrity, let alone a 'leader', with this criterion.

Believe this is a good thing. As my mentor explained to me: "Get that chip off your shoulder and join the majority". He's correct. I would rather be known for my ability.

I've read a lot of management books, especially those aimed at women who often
state I should 'quit being a girl' and be more masculine in my business persona. In meetings I am often over the top, talk with my hands and take up space. I speak loudly,

I'm not invisible and I will often act as the chairperson to intervene when the committee starts talking over the top of each other. In meetings I physically sit right in the middle of the table or at the head and will lean in towards the speaker and watch their every move. With my work colleagues I'm extremely forward when I don't hear or understand what's going on or will request that I have the correct 'tools' necessary so I can discharge my tasks.

I 'fake it 'til I make it I have the office corner or the desirable quiet area in an open-plan office by necessity, rather than reward. I often close the door too so I can work more effectively. Good leaders should have to walk the floor instead of picking up the phone. I will seek my colleagues out to speak with them directly as I prefer face to face communication.

I enjoy networking and I'm seen as confident because I approach the wallflower and start a conversation with them rather than joining the large group discussion. I am visible within the market place.

In fact, I have been asked to provide a talk on 'thinking outside the box on customer service' for a business support group. I am often asked to write about my situation for the in-house staff bulletin. I don't hear gossip because I don't actually hear the gossip! Be warned though,

 I can lip read and I read body language better than most and will pick up on cues when you are being untruthful. I am a master of silence. I wait patiently for you to say something and I appear confident when you have spoken because I pause and reflect on what you've just said.

I request emails or completed forms from customers/clients rather than a phone call and this provides accountability and avoids the "You said, I said ..." enabling me to get the task/request right the first time. If I haven't understood what was being said, YOU haven't been the effective communicator. If I ask you to repeat yourself, you will not waste my time and will simplify the message rather than repeat word for word the long-winded waffle you said beforehand.

Isn't it a sign of my 'lack of communication skills' that I don't use the telephone. I can use the National Relay Service if I need to make an outgoing call and I can save the conversation as text for a record of conversation. It's like dictating to my own personal assistant.

I know of an Australian leader -- a prime minister -- who was hearing impaired as we shared the same audiologist. Sadly he refused to wear his hearing aids and didn't have Medicare amended to include hearing tests, like eye tests are, when in office.

A disability isn't an excuse for being an ineffective leader. In fact it should be seen as an asset because you empathise with people better, you make an effort to communicate better and know how to bring out the best of your colleagues/clients by thinking outside the box when it comes to providing better customer service.

I am profoundly deaf and wear two hearing aids. When potential employers or clients ask about my 'needs', I tell them they need me in this modern world of equal opportunity and diversity!

Saving to Drive - Move to:

Life’s Surprises: An unfolding Story!

Life’s Surprises: An unfolding Story!
By Dan Dougherty

It is late spring of 1972 and I am in my mother’s dreams.  On June 8th that dream was fulfilled as I came into the world, but gave my parents an unexpected shock of a lifetime by seizing the moment.  I went into fetal distress and the doctors took their good old time in taking me by C-section.  For four days straight, I was in the hospital with all these crazy tubes and wires connected to keep me going while I decided to have non-stop convulsions.  It was my stuborness and the grace of God that allowed me to survive.

For the first ten years I was a relatively healthy boy who loved to play!  When I was ten years old, I contracted viral meningitis.  A few months later I was sledding in the park and had a seizure at the bottom off the hill.  The seizure was scary. The world was spinning, I was throwing up and screaming scared.  After many tests, I was diagnosed with epilepsy. 

I continued with seizures and the experience of the trial and error of medications.  Dilantin gave me a rash. Phenobarbital made me very, very irritable.  The years of trial and error of medications had been very frustrating, but a stubborn part of me never allowed this demon to knock me down totally.  This internal strength and a supportive family allowed me to get through school until I finally graduated from Cheltenham High School in 1991!!  A lifetime milestone that will never be forgotten!!!
I went on to take a few part time jobs until I landed a job at my church for seven years in 1995.  During this whole period up to and including 2001 I lived a life of constant Grand Mal seizures.  The medication mixes never could help the seizures to be milder until I was put on Trileptal along with two other anti-convulsive medications.  Only then was I able to live with less severe seizures. 

Now with the less severe seizures, I had the opportunity to go onto college.  I entered Philadelphia Community College.  I only lasted a week.  My sensitive nervous system could not handle the stress of higher education.  At the same time I was taking a medication for seizures that had a side effect that put me emotionally out of control and I landed in the psych unit!  This experience forced me to start a journey of individual therapy and antidepressant.

I would like to begin by saying I was not happy making the decision to get therapy.  I walked out of the therapist office a couple times.  It is very hard to admit I need help from another person!!  I used to say to Marianne (my therapist):  “I am paying you to listen to what I can tell a friend. “  As years went by my weekly meeting with Marianne progressed to help deal with living with epilepsy, especially getting out all the crap to the point of crying a few times.  


Here I am, forty – two years later in mid-2014, fully accepting uncontrolled epilepsy as part of my life.  What a peaceful feeling!!  This could not have happened without Marianne’s help.  The bonus of my past experience of thirty years: I am now an advocate and public speaker for epilepsy!!  Only God knows what is next as my life’s story continues to unfold!!

After 30 Years It's You

After 30 Years It's You

While growing up, getting older and wiser, have you ever wonder whatever happened to your childhood friend? A schoolmate? Your first school romance? A special teacher? Anyone who left a lasting impression on your spirit?

I've been on the hunt for this one particular person for the last twenty years. In total, I haven't seen this person in thirty years. When I was in the hospital from a spinal cord injury only two of my former high school teachers came to visit. One teacher was my baseball coach. The other teacher who visited was a huge surprise to me. Even though I respected her as my teacher, during my tour of duty in her English class we had fun. She knew and obviously I knew I didn't put forth my best in class. Now I'm not saying I didn't apply my best in just her class but I didn't give my best in any of my classes.

This teacher was my Sophomore English instructor who I failed half the year. So my Senior year I had to take half of year of Sophomore English as well as my Senior English. When I signed up to have her as my English teacher I remembered her saying to me. "James, are you sure you want to have me for your Senior English? You remember what happened your Sophomore year? You want to graduate don't you?" Then she giggled.

"Don't worry about me. You're going to be a breeze." I replied while laughing. After recording a strong C average, O.K., I barely made a C, it was time to graduate.

The next time I saw her I was laying in a hospital bed unable to move from my neck down. She came in with a surprising and definitely an unexpected visit. She was encouraging, positive, and full of life. She told me there is a purpose for all that has happened and a future for me. At that time, I listened and agree but was skeptic. After about an hour, she was gone and I thought I would never see her again.

Again, I've been thinking about her for about twenty years. Last year, passing through Hartsville I decided to stop at a bank and try to get a hold of her. Little did I know she had moved out of Trousdale County.

A woman overheard me talking with the teller and she followed me outside. She knew who I was looking for and she could get her phone number. I gave my cell number and my teacher who I haven't seen in thirty years gave me a call.

We meet for lunch and traded life stories. I know, if you have read this far - who is the teacher! Her name is Judy Bacon. Back in high school I called her Ms. Sizzlean. She was still positive and encouraging as I remembered.

Ms. Bacon told me about the phone call that she received from the woman at the bank.

Bank woman said, "Judy, one of your students came by looking for you. I'll give you three guesses to see if you can figure out who it was."

"James Perdue!" she replied. She said I was the first name who popped in her head.

If there is someone who keeps running through your mind, maybe you need to look them up. With technology it's easier than before.

People, don't be bashful, say hello to Ms. Bacon.

Let me know what you think. What is your comment?

I am now a motivational/Inspirational Speaker. If you need a speaker for your next event contact me by E-mail: JamesPerdueSpeaks@comcast.net and visit my Website at: http://www.JamesPerdueSpeaks.com

Go to Facebook and LIKE click here https://www.facebook.com/JamesPerdueSpeaks?ref=hl


My Community Care Team


  • Independent Individual & Family Services Professional
    We are very interested in being guest bloggers. Following is a position paper our team replied to and expressed a similar but very different point of you. To fully appreciate both the position papers of The New American Movement and our reply. It is submitted both as an example of our writing but more importantly to advocate for community inclusion for all

  • New American Movement for People With Disabilities
    But First, Do No Harm
    By Ed Heaton

  • Twice in the last month, Wendy English has been in the news. Articles in both The Record and The Star-Ledger have detailed Ms. English’s struggle as she prepares to change developmental centers from Woodbridge to New Lisbon. Ms. English is a highly-functional person with both physical and psychological disabilities. In many ways, her story is an advocate’s nightmare.

  • For well over fifty years, advocates for the disabled have campaigned to close institutions. And, replace them with what? Prisons, that’s what. It’s the law of unintentional consequences run amok. USA Today recently ran a four-part series about how persons with mental illness are overwhelming police departments around the country (see link at end of column). As institutions around the country have closed, community resources for those with mental illness have not matched the number of persons with mental illness released into society. Without proper funding of community-based alternatives, the needs of these people are often shifted to the criminal justice system.

  • Since the Olmstead decision of 1999, advocates for people with disabilities have continued to push for the elimination of institutions. Governments have eliminated the institutions without shifting the funding of the institutions to community-based services. Another example: in a recent New York Times article, it was stated that the inmates in New York City’s Riker’s Island prison most assaulted by guards and put into solitary confinement are those with mental illness.

  • Finally, there’s Wendy, who while not in prison, is being forced to make hard choices by New Jersey’s closures of its remaining developmental disability centers. Totowa closed this past June, and Woodbridge is scheduled to close by the end of the year, leaving people like Wendy with multiple needs to be forced to change living situations that have served them well for years.

  • Independent Individual & Family Services Professional Advocates have written that Wendy never knew of life outside of an institution, so therefore, how can she know the benefits of living in a group home or non-institutionalized setting? Wendy had a life at Woodbridge, and was comfortable there. She had many friends and also a job working at Woodbridge. All of the things that Wendy had going for her, friends, a job, a comfortable environment, are things that we, the advocates, would support, were she in a community-based setting. Does being in an institution make Wendy’s decisions about her life any less valid? More importantly, are any of us, either as agencies or advocates, willing to take on the cost of providing care for Wendy without government support? Until we are, we should step very lightly as to our criticisms of her views.

  • In no way does this mean that I am against the closing of institutions. I am all for it, provided that those who function well there are given suitable alternatives. Any advocate who argues against Wendy English risks being seen as unkind and uncaring by the non-disabled world. If they are seen that way it will make their advocacy for other issues less effective.
    How should we approach this problem? First, we should realize that this is probably the last generation that will want institutionalized care in any form. As advocates, we have done a great job of diverting new cases from mental institutions. This then becomes a generational issue. As the older generation, who prefers – and yes, needs – institutionalized care ages out and dies, the younger generations of people with disabilities will either be cared for by their families and/or, hopefully, diverted to community-based services.
    Just because there is a law saying that states have to provide services in a community-based setting, doesn’t make it so. As advocates, our responsibilities to both current and future generations, are to continue fighting for full Olmstead funding, not the half-assed hodge-podge that state and federal governments have created since 1999.

  • By accomplishing that, we will truly begin to guarantee a complete life in their communities for people with both physical and psychiatric disabilities. If we do not achieve this goal, then those of us who need help the most will be helped the least. They are already imprisoned by their mental illness. Let’s not make it worse by consigning them to the societal dustbin of actual prison.
    --------------------------------------------------------------------------------------------------------------------------------

    Independent Individual & Family Services Professional
    My Community Care Team is in favor of closing institutions. I know they will
    close and the sooner they close the better. The question we need to ask is why
    Wendy is entitled to institutional supports and many thousands of
    individuals with disabilities and their families are not entitled to in-home and
    community supports at even a quarter of what NJ taxpayers and federal
    taxpayers contribute to Wendy's level of care.

  • One possible answer is that change may be upsetting to Wendy. Change,
    however, is part of life. Staff quits or is fired. A new administration institutes
    new policies and procedures. Family members and friends become ill.
    A storm like Sandy or Katrina or an earthquake may require a transfer of all
    residents to an emergency center. People become ill and are hospitalized.
    CHANGE IS INEVITABLE. CHANGE IS PART OF LIFE.

  • The lack of change, the lack of opportunities for personal autonomy and
    increased personal choices, and the lack of opportunity for diverse interaction
    and individuals in diverse communities and settings are just a few of the
    reasons institutions must close now, not two decades from now.

  • There is also empirical evidence that the majority of individuals and families
    including families who opposed and feared the closing of institutions,
    when interviewed as a follow-up on quality of life, safety, and increased
    independence reported the move to in-home and community supports was
    very positive for both the loved one with a disability and the family.
    In my own experience in the late 70's working as a houseparent in a group
    home, I never encountered an individual who wished to return to an
    institutional setting. I have a daughter who in all likelihood has more physical
    challenges and similar cognitive challenges than Wendy.

  • Why do families who have a loved one with a disability at home need
    to fight for as little as even 10% of the support Wendy and less than
    1% of the total DDD population receives in a developmental center?
    Why do these families have to wait for decades for needed supports?
    Who speaks for these families in their golden years and their adult child
    with a disability?

  • Why does CMS have and approve institutional waivers?
    Why is a community waiver needed to live in the natural and empowering
    environments of family, home, and community?
    As to Wendy and other individuals who desire to continue to live in institutions,
    I believe NJ and other states should request CMS to abolish all community
    waivers and if CMS objects or stonewalls, Protection and Advocacy
    organizations together with advocacy and pro-bono law firms should file suit
    to have the existing CMS community waivers, which include some, exclude
    many and too often have decade long waiting lists meet the Constitutional
    protections in The US Constitution, and the protections of the historic ADA
    Legislation? The supreme court Dred Scott decision was nullified by
    legislation years later. CMS Community waivers will be abolished either
    through the courts or by legislative action. We welcome anyone to explain
    why a waiver is needed to live in the community or she wishes to live? Why
    must any individual, who needs supports to live independently give up his
    constitutional rights to freedom, liberty, and personal autonomy to receive
    basic human service supports? ( Continued) Independent Individual & Family Services Professional My Community Care Team is in favor of closing institutions. I know they will close and the sooner they close the better. The question we need to ask is why Wendy is entitled to institutional supports and many thousands of individuals with disabilities and their families are not entitled to in-home and community supports at even a quarter of what NJ taxpayers and federal taxpayers contribute to Wendy's level of care.
    One possible answer is that change may be upsetting to Wendy. Change,
    however, is part of life. Staff quits or is fired. A new administration institutes
    new policies and procedures. Family members and friends become ill.
    A storm like Sandy or Katrina or an earthquake may require a transfer of all
    residents to an emergency center. People become ill and are hospitalized.
    CHANGE IS INEVITABLE. CHANGE IS PART OF LIFE.

  • The lack of change, the lack of opportunities for personal autonomy and
    increased personal choices, and the lack of opportunity for diverse interaction
    and individuals in diverse communities and settings are just a few of the
    reasons institutions must close now, not two decades from now.
    There is also empirical evidence that the majority of individuals and families
    including families who opposed and feared the closing of institutions,
    when interviewed as a follow-up on quality of life, safety, and increased
    independence reported the move to in-home and community supports was
    very positive for both the loved one with a disability and the family.
    In my own experience in the late 70's working as a houseparent in a group
    home, I never encountered an individual who wished to return to an
    institutional setting. I have a daughter who in all likelihood has more physical
    challenges and similar cognitive challenges than Wendy.

  • Why do families who have a loved one with a disability at home need
    to fight for as little as even 10% of the support Wendy and less than
    1% of the total DDD population receives in a developmental center?
    Why do these families have to wait for decades for needed supports?
    Who speaks for these families in their golden years and their adult child
    with a disability?

  • Why does CMS have and approve institutional waivers?
    Why is a community waiver needed to live in the natural and empowering
    environments of family, home, and community?
    As to Wendy and other individuals who desire to continue to live in institutions,

  • I believe NJ and other states should request CMS to abolish all community
    waivers and if CMS objects or stonewalls, Protection and Advocacy
    organizations together with advocacy and pro-bono law firms should file suit
    to have the existing CMS community waivers, which include some, exclude
    many and too often have decade long waiting lists meet the Constitutional
    protections in The US Constitution, and the protections of the historic ADA
    Legislation? The supreme court Dred Scott decision was nullified by
    legislation years later. CMS Community waivers will be abolished either
    through the courts or by legislative action. We welcome anyone to explain
    why a waiver is needed to live in the community or she wishes to live? Why
    must any individual, who needs supports to live independently give up his
    constitutional rights to freedom, liberty, and personal autonomy to receive
    basic human service supports? 

  • Independent Individual & Family Services Professional
    My Community Care Team proposes that if CMS wants to remain in the
    waiver business, an institutional waiver must be established to permit individuals and families apply for the right to live in an institution. The waiver must allow for rights of appeal and must protect the wishes and aspirations as well as the best interests of the individual with disability and not the wishes and desires of family or guardians. Just recently, a family objected to their adult child getting married. The adult child went to court and won the right to marry.

  • Guardians of persons with disabilities including the state all too often forget
    guardianship requires a fiduciary duty to act in the best interest for whom
    they are guardians. Guardianship does not give anyone to control someone's
    life like a puppet on a string.

  • Please answer these questions: Why do a few families who have received
    the greatest amount of dollars in the DDD budget to support their son,
    daughter,sibling in an institution, for decades, believe their family member is
    entitled to the level of support he or she currently receives? Why do a few
    legislators support the continued isolation and segregation of people, in freedom limiting segregated facilities? I suggest NJ legislators pass legislation to end the NJ waiting list for services. The wait list for adult services is decades long and children with disabilities living with family receive few if any supports, irrespective of need. Where is the concern and compassion for the struggles that these families and individuals face.

  • MCCT further suggests, the Family Support Budget be increased to meet the
    increased inflation adjusted costs of Family Support. I challenge DDD
    and The Department of Children and Families and our Legislators to increase
    funding for family support on a per person basis to an amount plus inflation adjustments since family support was initiated in 1993.
  • On a related matter, people with disabilities in out of state institutions
    should return to NJ or apply for residency in the state they live.
    How does one maintain NJ residency and live in another state for decades?
    Someone please explain!!!!
  • MCCT disagrees with many public policy decisions of Governor Christie's
    administration. MCCT, however, applauds our governor's decisions on
    two related actions. 1) The closure of two state institutions. (MCCT favors
    closing all state and private institutions and requiring current residents of
    institutions to apply for a waiver or a reasonable accommodation, as provided
    in the Americans with Disability Act to continue to live in an institution.
    If individuals with disabilities and their families and or guardians believe it is
    in the best interest of someone to continue to experience only a small
    part of all life has to offer, the individuals and families ought to apply for a
    reasonable accommodation as provided under the ADA in order to continue to live in freedom limiting and segregated communities. 2) In closing and consolidating DDD and mental health institutions, our governor is taking on powerful unions and vested interests that previous administrations failed to address. MCCT applauds our governor to placing the best interests of our most vulnerable citizens above the politics.

  • Maria Tetto and Frank Tetto - Co-Founder My Community Care Team
    Advocates for Family, Home and Community Inclusion
    www.mycommunitycareteam.com///973-691-8619



When a Caregiver Dies

New post on ilikebeingsickanddisabledWHEN A CAREGIVER DIES by Kathe Skinner, M.A., L.M.F.T.

    First published on Disability.gov

For 70 years she put up with his (sometimes volcanic) rumblings.  He doted on her with diamonds, and was a poorer father for it.

The youngest of 5 much older siblings, she was babied into being passive and timid.  He was a blustering bad boy who loved control; a lifelong natural at most things mechanical.  He took seriously his duties as a man, a spouse, and head of the household.  He didn't brook anything that deviated from his definitions of right and wrong, a bigot in many ways.   A mother and military wife who could fend for herself and children when she needed to, she preferred being cared for . . .  and he liked it that way.

Both were fortunate:  for much of their lifetimes, neither was chronically ill or disabled.  Unless you count legal blindness, which he didn't (though most who drove with him did).  And even though she developed macular degeneration, a disease of the eye that usually leads to blindness, she could sometimes see the world better than he did.

Several years ago her macular degeneration began to impact both of them.  By then, her hearing had deteriorated, too, and her world shrank.  Although she rarely admitted fears (not to us, anyway) he expressed his the only way he knew how:  he fixed as much as he could.  He cut her food, gently guided her through the dimly-lit places they avoided more and more, lent her his arm, and searched out gizmos and gadgets he found in catalogues.  He took care of her.

Last year, George left Kate.

True to his role, George had organized everything, including who his wife's legal caregiver was to be -- my husband. Now, almost a year later, Kate no longer plans on joining George in death right away and doesn't cry for hours each night.  Not that she tells us, anyway.  As her vision deteriorates Kate, not surprisingly, adapts. David and his sisters do what they can from a distance of a thousand miles, mostly via phone calls and the occasional visit.  Immediate support comes from close friends and a kind and caring nursing home staff.

Today, it takes a dozen people to do what George did.  Even so, he can never be replaced.

None of us could live well if we spent too much time dwelling on the eventuality of death.  But some of us -- the visibly or invisibly disabled or chronically ill -- need to spend more time thinking about the profound changes a caregiver's death brings.  Like David's parents, my husband and I are fused by years, experiences, commitment and love.  Though I'm the one diagnosed with multiple sclerosis, in truth MS is something we both carry.

As we age and tire, slow and re-prioritize, both of us have to remember that though we plan to go out holding hands as star-crossed lovers, the truth is more mundane . . . and likely.  Whoever is left to mourn, cared-for or caregiver, what needs to happen is the same:

1.  Plan now.  The outcomes might look different, but the grief will be the same.

2.  Get your house in order.   You don't have to be a survivalist in order to be prepared with legal, medical, financial, and personal concerns.

3.  Create your own family.  Gather together people who care, no matter what the will says.

4.  Get outside each other.  Get perspective from someone trustworthy and caring who's outside the mix -- minister, counselor, or therapist.

5.  Express yourself and your needs clearly, often, and appropriately.  Consider what to say and who you say it to.  Sometimes being blunt can be hurtful; at other times necessary.  Some people are better prepared to bring a casserole or help with housekeeping than to see you cry.  Try out your voice to a journal, or pay a therapist or counselor . . . they can be skilled and trustworthy allies.

6.  Keep in touch with others.  It's unfair (and shortsighted) to place the burden only in one place -- like with your son.

7.  Have someone to talk to, starting now.  Clergy, therapist, physician, friend, partner, family can help you sort out what to say and how to say it.  Think of yourself as a nuclear reactor.  Keeping it to you guarantees one of two outcomes:  shutting down or exploding.

8.  Join a group of those experiencing what you are.  There's no substitute for having someone "get it".  Don't believe me?  Try talking to someone who doesn't.

Kathe Skinner is a Marriage & Family Therapist and Certified Relationship Specialist     specializing working with couples, especially those for whom invisible disability is part of the mix.  She has been diagnosed with multiple sclerosis for over 35 years.  Kathe and her husband David hold Communication Workshops in Colorado Springs and are both Certified Instructors for Interpersonal Communication Systems.  Along with their two hooligan cats, Petey and Lucy, they live along Colorado’s Front Range. 

Find out more about Kathe and David at http://www.beingheardnow.com and read Kathe’s blogs, ilikebeingsickanddisabled.com and couplesbeingheardnow.com.
© 2014, BeingHeard LLC

New post on ilikebeingsickanddisabled

New post on ilikebeingsickanddisabledWHEN A CAREGIVER DIES by Kathe Skinner, M.A., L.M.F.T.

    First published on Disability.gov For 70 years she put up with his (sometimes volcanic) rumblings.  He doted on her with diamonds, and was a poorer father for it. The youngest of 5 much older siblings, she was babied into being passive and timid.  He was a blustering bad boy who loved control; a lifelong natural at most things mechanical.  He took seriously his duties as a man, a spouse, and head of the household.  He didn't brook anything that deviated from his definitions of right and wrong, a bigot in many ways.   A mother and military wife who could fend for herself and children when she needed to, she preferred being cared for . . .  and he liked it that way. Both were fortunate:  for much of their lifetimes, neither was chronically ill or disabled.  Unless you count legal blindness, which he didn't (though most who drove with him did).  And even though she developed macular degeneration, a disease of the eye that usually leads to blindness, she could sometimes see the world better than he did.

Several years ago her macular degeneration began to impact both of them.  By then, her hearing had deteriorated, too, and her world shrank.  Although she rarely admitted fears (not to us, anyway) he expressed his the only way he knew how:  he fixed as much as he could.  He cut her food, gently guided her through the dimly-lit places they avoided more and more, lent her his arm, and searched out gizmos and gadgets he found in catalogues.  He took care of her.

Last year, George left Kate. True to his role, George had organized everything, including who his wife's legal caregiver was to be -- my husband. Now, almost a year later, Kate no longer plans on joining George in death right away and doesn't cry for hours each night.  Not that she tells us, anyway.  As her vision deteriorates Kate, not surprisingly, adapts. David and his sisters do what they can from a distance of a thousand miles, mostly via phone calls and the occasional visit.  Immediate support comes from close friends and a kind and caring nursing home staff. Today, it takes a dozen people to do what George did.  Even so, he can never be replaced. None of us could live well if we spent too much time dwelling on the eventuality of death.

 But some of us -- the visibly or invisibly disabled or chronically ill -- need to spend more time thinking about the profound changes a caregiver's death brings.  Like David's parents, my husband and I are fused by years, experiences, commitment and love.  Though I'm the one diagnosed with multiple sclerosis, in truth MS is something we both carry. As we age and tire, slow and re-prioritize, both of us have to remember that though we plan to go out holding hands as star-crossed lovers, the truth is more mundane . . . and likely.  Whoever is left to mourn, cared-for or caregiver, what needs to happen is the same:

1.  Plan now.  The outcomes might look different, but the grief will be the same.

2.  Get your house in order.   You don't have to be a survivalist in order to be prepared with legal, medical, financial, and personal concerns.

3.  Create your own family.  Gather together people who care, no matter what the will says.

4.  Get outside each other.  Get perspective from someone trustworthy and caring who's outside the mix -- minister, counselor, or therapist.

5.  Express yourself and your needs clearly, often, and appropriately.  Consider what to say and who you say it to.  Sometimes being blunt can be hurtful; at other times necessary.  Some people are better prepared to bring a casserole or help with housekeeping than to see you cry.  Try out your voice to a journal, or pay a therapist or counselor . . . they can be skilled and trustworthy allies.

 6.  Keep in touch with others.  It's unfair (and shortsighted) to place the burden only in one place -- like with your son.

7.  Have someone to talk to, starting now.  Clergy, therapist, physician, friend, partner, family can help you sort out what to say and how to say it.  Think of yourself as a nuclear reactor.  Keeping it to you guarantees one of two outcomes:  shutting down or exploding.

 8.  Join a group of those experiencing what you are.  There's no substitute for having someone "get it".  Don't believe me?  Try talking to someone who doesn't.

Kathe Skinner is a Marriage & Family Therapist and Certified Relationship Specialist     specializing working with couples, especially those for whom invisible disability is part of the mix.  She has been diagnosed with multiple sclerosis for over 35 years.  Kathe and her husband David hold Communication Workshops in Colorado Springs and are both Certified Instructors for Interpersonal Communication Systems.  Along with their two hooligan cats, Petey and Lucy, they live along Colorado’s Front Range. 

Find out more about Kathe and David at http://www.beingheardnow.com and read Kathe’s blogs, ilikebeingsickanddisabled.com and couplesbeingheardnow.com. © 2014, BeingHeard LLC

My Disability Poem

8/9/2014       Comment   My Disability Poem

I could not see tomorrow when my disabilities took hold of me.

 Life was supposed to be easier than that but it never seemed that way to me.

 I always wondered what 'normal' meant but never really knew.

It always seemed outside my reach, just hidden from my view
.
 With age, my hidden disabilities aren't so hidden anymore, Disorganization,

forgetfulness and memory loss make every task a chore.

And try not to judge me if I come across as dumb. It's due to years of seizures, that's left my brain cells numb.

I think of days gone by, surrounded by my fears.

 And finally come to realize I was empowered all those years.

 Creativity. A common characteristic of bipolar disorder, seizure disorder and ADHD.

But I try not to let them get the best of me.

Sins Invalid

Sins Invalid

I recently interviewed Patty Berne for the radio program Pushing Limits.  Berne is part of the performance group, "Sins Invalid" which makes “an unshamed claim to beauty in the face of invisibility.”  They are also leaders in the burgeoning disability justice movement.

"Sins Invalid" brings entertainers with disabilities together with a focus on performers of color, and queer and gender-variant artists.  Their paradigm-breaking work is thoughtful, sexy and gorgeous.  They bust though assumptions and stereotypes about sexuality and disability.

Patty Berne has made a 32 minute film documentary about Sins Invalid.   It highlights some of the best performances the group has done and comments on them in the way of a Director's Cut.  It's almost unheard of for disabled performers to control the stage when they perform.  Watching these performers gave me the privilege of seeing how simple and human the lives of other disabled people are -- even as they focus the spot light and break new ground.
Written by Adrienne Lauby

Pushing Limits:

Sins Invalid

Traveling with a disability in 2014

Traveling with a disability in 2014: the good the bad and the headaches
Posted on June 14, 2014 by Adrienne
By Kathleen Riel & Jacob Lesner-Buxton*
Jacob Lesner-Buxton (L) at Capital Action Day

In May the Independent Living Resource Center in Santa Barbara organized a trip to Disability Capitol Action Day in Sacramento with a group of 8 consumers, (2 in power wheelchairs.) While two consumers flew due to medical needs, the rest of us (6 disability community members plus two staff members), took the train and got there at midnight the night of the event.

Before the trip, we called Yellow Cab and were told that they had accessible cabs and we had to call the day before to reserve them. We did that and they told us they would be at the train station at midnight. The next night we called from the train to say we would be a half hour late and was told that they had no one to drive the accessible cabs and they were not coming to pick us up. So the two ambulatory members of our group and the two power wheelchairs users had to walk and roll 17 blocks to our hotel at 1:00 AM. Four of us who could not make the walk took a regular cab to meet the others at our hotel. The hotel, which was said to be wheelchair accessible by our booking agent with Amtrak, was not. We could get in the door but not the bathrooms.

The next day we had a reservation with Yellow Cab made two days previously to go to capital at 8:30 am. The dispatcher called saying the cabs were overbooked and they would be there ASAP. We had to wait an hour although we had made a reservation 48 hours before.

On the way home we transferred from the Amtrak train to a Thruway coach in Emeryville. This bus was contracted by Amtrak through a coach company and was accessible but it did not have the wheelchair seating set up yet. Oh they had a lift, but the seats covering the wheelchair spaces still had the bolted down factory setting. Fortunately the Manager at the train station had the required tools. It took the driver, an Amtrak station worker and one of our group an hour to unbolt the chairs and remove the pins so the seats could be pushed back to operate the lift. Worse yet, the driver was not notified he had wheelchair passengers even though we checked in early at every point with Amtrak during the trip and always emphasized the wheelchair access needs.

Given the situation, the driver and all involved did a stellar job getting us on the road. We all had a very anxious hour wondering if we were going to be left behind. One of our members volunteered to station her power chair in front of the bus if it tried to leave without us. The group was ready take action but, not only did we get home safely, we arrived back home in Santa Barbara a few minutes early. Our trip only served to illustrate the whole purpose of Disability Capitol Action Day. If all access were smooth, we wouldn’t need to come together in the largest assemblage of persons with disabilities in the state, to advocate for our access rights.
6-13-14

Remnants of History


Remnants in History 

If you could only understand the pain entrenched inside. 
Not desiring to leave this world but questioning at times
whether lingering  on is the solution to the pain.  

Relief comes with help from others
but they don’t realize this life of disability
is not what I had planned.

They say ‘get it together’ which only demonstrates
how little of my world they understand.  
My closest friends are virtual.
How would that make you feel?

Those who knew and loved me are simply remnants in history.
Please life, go easy on me I just long to be free hoping what lies ahead
is nothing I should dread.  

I live amidst misunderstandings and words which shouldn’t be said
At times life seems to be a farce but I will pull
myself together, and bravely forge ahead where
it’s not just an illusion, where with respect my words are read.    


The Disability Experience ll (forward)


 Forward


Four years ago, I stumbled into therapeutic writing. I joined a writing class for those with disabilities, and enjoyed it immensely. When I look back at that work, I note that my writing was at a beginner’s level, but even so, it served a therapeutic purpose. It is not how well you write, but rather that you explore life through the written word that makes it therapeutic.  

I have had depression for twenty-five years. In 2004, I was involved in a serious accident which resulted in permanent disability. The notebook and pen have helped rebuild a meaningful life and led to joy and success I had never imagined. A powerful therapeutic tool, writing allows a look at the past, evaluation of the present, and dreams of the future. 

Prior to discovering writing’s therapeutic value, the last writing course I had taken was Basic Composition in college twenty-five years ago. I had not written since college, and had never studied poetry, but as I began to read that of others, I fell in love with it. 

When I started writing, my friends quickly tired of me asking them to read my work. I found an online writing community where I not only learned much about writing, but have also found support and friendship with writers across the country and around the world.   

I have taken a few online poetry classes and belong to a weekly writing group. In the past year, I have had several poems published in literary journals. Some of those published are about disability while others are not. Recently, I have developed a particular interest in Japanese poetic forms. 

Writing is a wonderful way to explore self, and to communicate and learn from others. Writing also shows that I am still here, and my thoughts do matter. Writing, like any art, is a challenge and there is always more to learn. 

My first book, ‘The Disability Experience,’ (2011) includes work from the first two years after I discovered therapeutic writing, and has both poetry and short non-fiction works about disability.  ‘The Disability Experience II’ focuses mostly on the first three years after surviving the accident, a period of time I call ‘The Aftermath’. This was a time of profound change in lifestyle as I worked through the stages of grief to slowly reach some degree of acceptance. Nearly every aspect of my life was impacted by physical disability.  Learning to cope was a difficult and not always graceful process.  

Writing has helped me continue to work through these issues as well as others in my life. I write primarily poetry, so have also included a selection of poems I’ve written since my first book.  My three goals for this book are:

1) To let others with disabilities know they are not alone.
2) To give the non-disabled a chance to see into our world.
3) To show the therapeutic value of writing in dealing with illness.
 
 

The Aftermath: Epilogue

The Aftermath:

Epilogue

No matter what happens to us, life continues on. Whether staying stuck in the darkness, or striving to live a good life is a choice. Some pain and grief always will be there. How we choose to deal with it is what is important.

We all have our ups and downs, some worse than others. I have learned much about life since becoming disabled:

There are many wonderful and caring people in the world.
There are some who think those of us with disabilities aren’t equals.

The small joys in life are important. We spend too much time obsessing over our difficulties, and too little enjoying what we have.

Being disabled does not make you immune to other health problems. It means recovery from illness may take longer and require more work and energy than it would someone who isn’t disabled.

There will be difficulties, but there are also some positives in living with a disability in a primarily non-disabled world.

Spirituality does enhance one’s ability to adapt to a new lifestyle as do supportive family and friends.

Resources for the disabled are seriously underfunded and plagued by shortages and lengthy waiting lists. We, as a society, do not put enough effort into programs that could improve our lives. There needs to be one place to call that can help arrange what is needed to live life as a disabled person. Our services are provided by too many programs, each with different forms, eligibility requirements and regulations. Working your way through the maze is overwhelming, especially when trying to adjust to all the changes required with a new disability

The disabled need to make their needs known and their voices heard. Problems won’t be solved if we don’t stand up for our rights.
Twenty-five years after passage of the Americans with Disabilities Act, we continue to have a long way to go to achieve equality.
It is possible to find a fulfilling life with a disability.

The greatest gifts that my disability has offered are appreciation, gratitude and the discovery of  writing, which has been so therapeutic in my recovery.



Never Give up Hope.

~~~~~~~~*~~~~~~~~

The Aftermath Part 17: And So it Slows…



The Aftermath Part 17:

 And So it Slows…

I pushed myself as hard as I could through July when the therapist thought I had developed the strength and agility to discharge and continue to work on my balance at home.

My balance never did return, and I continued to fall nearly every day. I kept on until the day before Thanksgiving when I fell and tore my rotator cuff. This left my right arm too weak to properly use my walker and thus ended my ambulation using a prosthesis. I could have had it surgically repaired, waited for it to heal and started over, but there was such a high chance I could fall and be injured again, we agreed that it was not safe to do so.

The next year, I spent trying to get used to life in a manual wheelchair which was very difficult as it takes two arms to propel the chair and none left to carry anything. Again, I was very depressed and felt that I had failed. I really felt dependent on others which went against my independent nature.

Another year spent struggling and feeling inadequate. I stopped going out as much and began to withdraw again. This went on until the next Thanksgiving, when out of the blue, my mother called me to ask if I wanted a power chair. Her neighbor had just received a new one, and was willing to give me her old one, free of charge.
This began my striving to be independent again. The use of a power chair made life much easier and helped conserve my limited amount of energy.

A year later, I found I was eligible for a new chair, completely free of charge courtesy of Medicare and Medicaid. Since I was given my first one, I passed it along free to someone else in need.
An electric wheelchair does present a few difficulties. It requires daily charging and periodic maintenance. It is far too heavy to place in a car, necessitating the use of bus with a wheelchair lift; our bus system is far from user friendly, so I still have my manual wheelchair to use when I have to travel by car.

I have never even considered trying to drive again, although I know amputees who do. I don’t have the courage, and even get nervous when riding with others near semi-trucks.

Almost to the end...


The Aftermath Part 16: A Fresh Start

The Aftermath Part 16:

A Fresh Start

I took a couple of weeks off during the holidays. With the New Year came a new therapist. During my initial assessment, he was horrified I was trying to walk with a cane. My strength and balance weren't adequate for that. He wasn't sure using a cane was even a realistic goal. He wanted to essentially start over, beginning with the parallel bars.

Motivation was not a problem. I worked hard, sometimes too hard, and he would tell me to quit. I went early, stayed late and even went in on my days off if the equipment was available. I worked so hard my clothes were soaked with sweat when I finished. This therapist was kind and encouraging.

After a month or so, he felt my prosthesis was not right for me, so I began the process of getting a new one. I went to a different prosthetist this time. He was also very kind and worked hard to design a user-friendly version for me. We got rid of the huge, hot and bulky Velcro and used a pin system instead. With this, the rubber sleeve I wore had a pin at the bottom which securely locked into the prosthesis providing much greater safety and stability. The knee had a spring system and was much easier to use than the first one. He tried to make it as light as possible.

Once I was used to this leg, I was allowed to venture out of the parallel bars with the use of a walker. Standard walkers aren't very strong, and mine was bent from all of the times I had fallen on it. The therapist suggested I purchase a larger, more stable one. It wouldn't be paid for by Medicare as they not cover durable medical equipment if you are getting better. I had a wheelchair already, so I couldn't move up to a walker.

I found it ironic that Medicare only paid for equipment if you were declining. Apparently the government does not expect the disabled to improve. I did scrape together enough to buy a good one; after all, I figured I would be using it forever. I chose one with a basket to transport things. Tying a bag on the front of the walker as most people do to carry items in destabilizes it as the walker is then front-heavy and easier to tip over.

I continued to work hard, but due to my impaired balance, I also continued to fall nearly every day. I had a few bumps and bruises, but no serious injury.

My attitude and outlook on life began to improve. When the opportunity came around to take a class which would then allow me to work with the disabled in a group home setting, I felt I was ready to start having a life again. After the class, I discovered they require a driver who has a car for all of the positions in this area.

Disappointed yes, but I was still thankful I had taken it because through the class I found a wonderful volunteer position doing crafts at an adult daycare. I also found a support group for those with mental illness. I was meeting people and participating in the community.

To be continued...

The Aftermath Part 15: The First Steps

The Aftermath Part 15:

                                      The First Steps


The next six months I look at as rehabilitation hell. The physical therapist had treated me prior to my amputation. At that time I had been resistant to doing the exercises he prescribed as they were too painful. Based on this history, he assumed that I was unmotivated.

 He quickly became frustrated with me and made it well known during each visit. I felt that he was pushing me much too hard, so I was frustrated too. My leg was amputated above the knee leaving about half of my thigh left to lift the heavy prosthesis. Learning to use the knee and ankle joints was very difficult. The ankle joint was in a fixed position making it impossible to walk heel to toe as we normally do. The knee joint had two positions locked/straight and unlocked/bent. Putting any weight on it when not locked would precipitate a fall. There are newer and more user-friendly prosthesis available today.

The Department of Defense spent millions on improving prosthetics due the large number of veterans returning with missing limbs. The Department of Health has limited funds for such research.

Computer assisted knees were just being developed at that time, and certainly weren’t something Medicaid would pay for. Research into healthcare was, and still is seriously underfunded. I worked as hard as I could, but progress was very slow. I finally learned how to apply the prosthesis and to stand while holding onto the parallel bars. Eventually, I could take a few steps between the bars. Next, I advanced to taking a few steps with a walker, but after a few steps, I would fall. My balance was very poor and remains so today.

Although I continued to have problem walking with the walker, the therapist insisted I try a cane. That wasn’t successful at all. With a cane in each hand, I did master a few steps, but continued to fall at least once a day. We tried stairs which were much easier as the handrails are firmly attached. I went to therapy three days a week and it tired me so that I spent most of time in bed, trying to rest up for the next appointment. One afternoon I fell walking with the canes. One of them hit the therapy assistant and made a small bruise on her ankle. The next time I saw the therapist, he was angry and said they wouldn’t see me if I injured anyone else.

After four months, he made a goal for me to obtain my driver’s license. This was entirely his goal, not mine. I had no intention of getting my license. I didn’t have a car and was too afraid to drive. He argued about this for a couple of weeks, and at the same time, he kept telling me I wasn’t making sufficient progress to warrant continuing therapy. In the progress note he sent to my doctor he made these same suggestions.

At my December checkup, the surgeon and I discussed these goals. He strongly encouraged me to change to a new physical therapist and to not give up. It was Christmas week, and my Christmas gift was telling the therapist that I would not be returning.

To be continued...

The Aftermath 14: Not as Easy as it Sounds

The Aftermath 14:

Not as Easy as it Sounds



A couple weeks after finishing the six weeks of IV antibiotics, my wound healed. There were no signs of infection. I felt tired and depressed. During the day, I didn’t notice the pain as much if I kept busy. Nights remained tortuous though.

Now, medically, it was time to wait and see what happened. Despite the amputation being healed, it would take quite some time for the nerve endings and the bone to heal. The surgeon told me it would take from eighteen months to two years to regain my strength and energy. Prolonged infection and too many surgeries had taken a toll on my body.

I started to notice my whole body ached. After some testing, I was diagnosed as having fibromyalgia which was brought on by all of the physical and emotional stress. That spring, I did little more than try to make it through the day. I continued to spend much of the time in bed. Doing anything else was too tiring.

In June, six months after the amputation, the surgeon thought I was ready for a prosthetic leg. I scheduled an appointment. Six weeks later we began the process of making one. On the first visit, the prosthetist did some measuring and made a cast of my stump. After several visits, the prosthetic was finished. The first time I put my new leg on it was cold, hard and heavy. I couldn’t stand up, let alone walk. My muscles were very weak as I had hadn’t walked for over two years. My balance was poor to non-existent. The prosthetist sent the leg home with me after saying he didn’t know how I could put it on myself.

When I got home, I literally threw it in the corner of the dining room where it was out of sight. I couldn’t imagine how the cold, hard and heavy leg would ever feel like part of my body. I spent ten days in deep depression and the prosthesis stayed in the corner. The tenth day, I finally scheduled an appointment with physical therapy to learn to walk again.

To wear the prosthesis, I had to wear a heavy rubber sleeve followed by several layers of thick socks.  Next, I had to slide my leg into the socket and try to balance while I fastened a huge Velcro waistband to hold it on. I tried to put it on a few times without any success. It went back to the corner until the time came for physical therapy. As I was unable to wear it, I had to carry my new leg onto the handicapped bus and then into therapy.

I was assigned to the same physical therapist as I had previously worked with. The first appointment was spent trying to figure out how to put it on. After a long struggle, I finally had it on and attempted to stand. I immediately fell and the prosthesis came off. Frustrated and angry, I carried it home and waited for the next appointment.

To be continued...

The Aftermath 13: Not Yet the Final Chapter

The Aftermath 13:
Not Yet the Final Chapter

After arranging transportation, I went to see my surgeon the next morning. He said it was likely infected, but to wait a few days to see what developed since I was already on antibiotics. He would be gone the next week, but assured me his colleague was perfectly capable of treating the infection during his absence.

I spent  four days at home before returning to see this capable doctor. He saw the redness, fever and altered lab values consistent with a major infection. I was scheduled for surgery to drain the apparent abscess the next morning.

They no longer keep patients in the hospital the night before surgery, I was supposed to go home and return the next day. A friend of a friend had driven me down for this appointment.  He needed to return home that evening and I had no way to return for surgery the next day. Somehow, the doctor worked it out that I could spend the night in the hospital.

I was already awake when they once again wheeled me down to the pre-operative area, went through the pre-op assessment, and wheeled me to the operating room. At this point, it was so routine that I would just close my eyes and breathe deeply as they started the anesthesia. Having a different doctor worried me a bit, but my surgeon had assured me he was capable of performing this surgery. I was ready to get this over with. It had to be the last time, what else could happen?

When I came to, I was in recovery, another quite familiar place. They gave me a couple of doses of pain medicine and sent me to my hospital room, where I was again hungry. After eating, I floated in and out of consciousness for a couple of days. I remember during that time, they had moved me to private room, explaining I was in isolation due to having MRSA infection.**

The morning my surgeon returned, he took one look at what the other doctor had done and told me that was not what he wanted and he would  redo the surgery the next day.

This last surgery left me with a four inch deep, two inch wide hole, not an incision, but a hole in my leg. It was so large they would pack it with a whole roll of gauze soaked in saline twice a day. The next few days, they taught me how to do that, administer the six weeks of IV antibiotics I would need and also administer a syringe full of blood thinners in my stomach each day.

As always, I wanted to go home. Three days after the last surgery, a friend did pick me up and take me home to my very spoiled beagle.

To be continued…

** MRSA often called methicillin resistant staphylococcus, hospital acquired infection, the superbug or antibiotic resistant staph. Once you have had it, you are always assumed to still have it as there is no truly effective cure. Almost eight years later, I still am put on special precautions when receiving medical care as it is assumed that somewhere in my body, the bacteria might currently be dormant, but could become active again at any time.

The Aftermath Part 12 Ready to Heal

The Aftermath Part 12:

Ready to Heal


Glad this long ordeal will soon be over. That was what I thought as I deeply inhaled the now, all too familiar, scent of anesthesia, while I drifted off to sleep.

Nine hours later, I floated in and out of consciousness as the anesthesia began to wear off. I was surprised  there was less pain than I had imagined at the fracture/surgical site. Mostly, I felt numb, which was a relief from the continuous pain I had been living with. That seemed like a positive sign to me.

After a short stay in recovery, I was wheeled up to a regular hospital room, where I requested something to eat. The staff seemed surprised I felt like eating. They called the surgeon to make sure it was alright, as they generally waited until the morning after surgery to start solid food. He approved, and soon I was eating dinner. As I ate, I thought about recovery and wondered what it would feel like to be ‘normal’ again, whatever that was.

Later that evening, the surgeon stopped in my room and apologized for not being able to effectively treat the osteomyelitis. He was truly a caring and gentle man. We were the same age. As he spoke, I saw him try to blink away tears. Empathy is rare in doctors, but he certainly had it.

After twenty-four hours, the spinal block was removed, and the pain began to return. Fortunately, they were quite generous with the pain medications. The next three days were spent in a maze of recovery, dressing changes, and physical therapy.

Everyone there thought I should stay in the hospital until after Christmas, or at least go to a nursing home. But, I was determined to go home on the fifth day, the day before Christmas Eve.
That afternoon, the transportation department loaded me on a stretcher and put me in the back of a station wagon facing backwards for the two hour ride.

I had never been so glad to be home. I could start putting my life back together and go on. This time, a nurse, nurse’s aide and physical therapist were ordered to treat me at home.

That night, I started to feel an intense pain, a terrible burning feeling which kept me from sleeping. After an amputation, the nerves remain, so it continues to feel is if the limb is still there. My whole leg hurt, hip to toe, even the part that was no longer there.
Christmas Eve, my friend brought Zoey home. My beagle and I spent Christmas Eve and Christmas Day together, cuddling, and recovering.

I was not prepared for the type and severity the of pain I experienced. There were times it hurt so bad I couldn’t hold still, but I was too tired to move. I was on a large dose of pain medication but was still very uncomfortable.

I wasn’t prepared for a lot of things, For example, I had trouble sitting up straight. My center of balance had changed, since one side of me was heavier than the other. Gradually, as my muscles strengthened, I learned how to cope with the changes in my body.
I was still confined to my living and dining rooms.

My next appointment scheduled with the surgeon was one week away when my home health nurse noted an area of redness along the incision. She marked the area to determine if it was getting better or worse. It was worse the next day. She informed the surgeon, and he wanted to see me.

To be continued

The Aftermath: Part 11: The Long Wait

The Aftermath: Part 11

The Long Wait

Nine days, a mere nine days, usually passes quickly without much thought—especially at Christmastime when there is always more to do than there are hours in a day. I started the longest nine days of my life. I was at home alone with very little support, and counted down the hours until it would be over. I wasn’t looking forward to the amputation, but I was glad this whole ordeal would be finished, just another chapter in my life, completed. I was unaware of how this would completely overhaul the rest of my years, so profoundly, in so many ways.

Being the holidays, everyone was busy with their usual holiday plans, while I was at home, alone. I struggled to make it minute by minute, hour by hour. I finally turned off the clocks as I was so focused on time it was making me insane.

The other concern I had was how to get to the medical center to have the surgery. It was a busy time of the year and everyone I knew had used up all their vacation days taking me so many times before. I made phone call after phone call trying to arrange transportation. Finally I decided the Greyhound Bus was the only solution. I would leave early the day before surgery and arrive at the bus station at 2:00 AM the morning of surgery. I could take a taxi from the bus station to the hospital and sleep in their lobby until time for surgery. This meant it would take close to twenty hours to make a trip that was normally two hours. I was ready to do it though as postponing the surgery seemed like a much worse option.

Four days before surgery, a woman I went to college with found out I needed a ride and said she could take me down on Saturday, before the amputation scheduled for Monday. I accepted and planned to stay in a nice hotel and order carry-out food for the time I was there. The night before she took me was a sleepless one and I finally ordered a pay-per-view movie, “Million Dollar Baby” to try and quiet my incessant visualizations that I was headed to the slaughterhouse.

The ride down was long with my friend telling me she and her husband of twenty years were getting a divorce. There were financial issues as well as custody issues about her three children. It gave us something to talk about, and for a while the slaughterhouse visualizations quieted down.

We arrived in Iowa City and I had a room in a hotel I had stayed at before and felt comfortable in. I had a really nice handicapped room and found there were numerous restaurants that delivered. I was down to less than forty-eight hours of waiting. I watched television and read some, but concentration was difficult. I really didn’t sleep, but continued to countdown the hours. The morning before surgery, the medical center called and said my surgery would be at noon rather than 5:00 AM. This added a few more hours to wait and worry.

I had arranged to take the hotel shuttle to the hospital. It seemed like a good idea until I tried to board the shuttle, an extra-large van using my one good leg. I finally managed to get in and laid on the floor in the back as I didn’t have the strength to pull myself up into the seat.

I arrived at the hospital on time only to be told the surgeon was running a couple of hours late. More time was spent waiting alone in the waiting room. I was anxious, shaking and in tears. They finally called me back to the surgical preparation area. I changed into a lovely hospital gown and sat alone in a little room with no window.

The anxiety continued to build. The nurse finally came back to take me for a spinal block which would help manage the pain after surgery. She noticed the state I was in and said she could give me something for anxiety. She looked at my chart and noted the doctor had not signed admission orders, so she couldn’t give me anything until one of the residents came to explain possible complications and have me sign that I had been informed of these. I waited another hour for that to happen.

Finally an injection calmed me down as I underwent the spinal tap necessary for the spinal block. After that, I was taken to the pre-surgical area for the routine questions and warnings.
The surgeon was finally arrived and I was wheeled into the operating room, strapped down to the table and while staring up at the bright ceiling lights, inhaled the anesthesia that put me to sleep.

To be continued…


The Aftermath 10: The Will to Live

The Aftermath 10:

The Will to Live
 
The waiting and worrying took its toll on me fast. After two weeks, I was not eating and pretty much spent all of my time in bed. The only things I got up for were going to the bathroom and putting the dog out.

I felt so very sick, and was running a fever of 102 degrees. Night sweats became the norm. My UHIC surgeon was gone all of July and August, on loan to another university. Calling UHIC didn’t get me anywhere. They would just tell me recovery was a long process.

I eventually had my son take me to the emergency room on a day I was feeling particularly bad. The ER doctor diagnosed anxiety and put me on medication for that. No one seemed concerned about the symptoms of infection I continued to have.

These two weeks, I felt as hopeless and helpless as I ever had. The depression was unbearable and I contemplated suicide. There seemed to be no reason to live. The harassment by creditors continued.

I spent every Monday with the phone and phonebook, making calls to every agency I could find trying to get some help. These consistently yielded nothing but tears. I was literally someone slipping between the cracks. At my age,  with my previous income, no children younger than eighteen, and owning my home, there was nothing I would qualify for.

The middle of July, I made the decision to decide what to do, go on or give up. I suddenly felt a power, a spiritual awakening happen. I grabbed my notebook and began to write. First, I wrote, “Don’t worry. God is in charge.” I taped this to the small refrigerator I had by the bed. This simple thought was such a relief. Whatever was going to happen would not be my fault.

I assessed my situation and how I was living. Again, in my notebook, I began to write out a list of rules I would live by:

I would get up by 10 AM

I would eat at least two meals a day, a meal consisting of at least three different foods

I would sit in my chair for two hours every afternoon

I would complete one word search puzzle daily to stimulate my mind

Between five and six PM, I would work on the foot-high stack of paperwork and forms I needed to complete for my medical bills, regular bills and to apply for some sort of assistance

There were more, but these are the most important ones. I had to start making the effort to take care of myself. These rules were not shared with anyone else. I was accountable only to myself. If I was going to live, I needed to follow them.

I muddled through the next six weeks using these, waiting for my surgeon to return September first.

To be continued…

The Aftermath: Part 9 The Aftermath: Part 9

The Aftermath: Part 9

On a Downhill Slide

Armed with my x-rays and progress notes, I headed off to see the trauma specialist at the University of Iowa Hospitals and Clinics (UHIC) on April 1, 2005. He was a very compassionate doctor, who after talking with me and looking at the x-rays done by the previous surgeon the day before, determined I continued to have osteomyelitis, a bone infection, at the fracture site. To verify this, he ordered a bone scan, a two day procedure, to be done the next week.

The bone scan confirmed his diagnosis, and he recommended surgical removal of the infected bone. This would leave my leg with an approximately one inch section missing, which he would fill in with a spacer impregnated with antibiotics.  During this time, I wouldn’t be able to bear weight. Once the infection cleared, he planned to remove the spacer and reconstruct the bone. He was optimistic that I would eventually be able to walk again.

Two weeks later, I had the surgery performed. When the surgeon talked to me afterward, he said the infection was much worse than he expected, and he had removed eight inches of my thigh-bone. An x-ray done the next morning showed the spacer had broken, and I was scheduled for another surgery to replace it three days later.

Following the second surgery, I was started on six weeks of IV antibiotics along with hyperbaric oxygen treatments (HBO) five days a week. HBO is a procedure where intensive oxygen is administered in a high pressure chamber for two hours a day to stimulate circulation and healing. This required I be kept in the hospital for the entire six weeks. I was very depressed and in a great deal of pain. Two hours away from home, no one visited me. I was fortunate to have a couple of nice roommates during this time which helped some. 

By that time, it had been over a year since I had worked, and all my financial resources were gone. Even in the hospital, the bill collectors harassed me, and I was very close to mortgage foreclosure. A decision on my disability was pending, and the hospital social worker was trying to speed along that process. All I could do was wait, hope, and cry.

I was notified a couple of weeks before discharge that my disability was approved, but it would take some time before I actually would receive a payment. I was very afraid that I would end up homeless and disabled.

I left the hospital the last week of June 2005 in poor shape both emotionally and physically to return home where I had no help, no money and a very dirty house that was days away from foreclosure. I was homebound, in pain, unable to walk, very ill and weak from the ongoing infection and surgeries.

I was in a rapidly deepening depression and really questioning whether life was worth living.

June 30th, I received my disability payment, just in time to prevent the mortgage company from filing foreclosure on July first. It was nowhere near enough to pay my other bills, but at least I wouldn’t be homeless for the time being.

I had been doing some research on osteomyelitis, and realized the prognosis was grim. I was to return to UHIC in two months with the hope of the infection being resolved and reconstructing my leg bone could begin. Two months of waiting and worrying.

To be continued…

The Aftermath 8: A Turn of Events



I returned for my nine month checkup with the surgeon in January, 2005, and left the visit totally bewildered and thinking that either I, or the rest of the world, was insane. I was expecting a pre-operative visit to get my leg fixed properly. I could still bear no weight on that leg at all and was in unbearable pain.

As usual, x-rays were obtained, and I went in to see the surgeon. He looked like the same surgeon, but had a totally different take on what to do about my leg than he had given me the previous month. He said, 'yes there was ‘some settling,’ at the fracture site, but he did not feel it was important and as usual he recommended, “staying the course.”

I confronted him with what he had told me the previous month, and he appeared to have no clue as to what I was talking about.
As I left the room sobbing, I was met in the hallway be a representative of the billing office. In her sugary sweet voice, she discussed with me “my payment” for the services I had already received, and that if I was unable to pay, which I wasn’t, I would not be seen again. It finally occurred to me that the surgeon was thinking of his bank account, not my health, when he saw me. I was not getting the proper treatment because I had been unable to obtain insurance due to pre-existing conditions. She did grant me one more visit, if I would pay out of pocket for services received. That appointment was set for March 1, 2005.

I was left with no hope, in pain, growing more angry, and depressed each day. Not knowing what to do, I contacted my doctor from the rehabilitation center. She was short on ideas, but did put me on an adequate dose of pain medication until I could figure out what to do.
I struggled through until my March 1st appointment. I again tried to tell the surgeon how bad it was, but he just mumbled something to the effect that everyone does not have a good outcome after a severe fracture. Again, he stated, “Stay the course,” and if I wasn’t feeling better, to return in a year.

I found my voice and told him I was very unhappy with his care,  didn’t feel comfortable waiting when I couldn’t bear weight, and knew the hardware in my femur was broken. He did offer to contact a trauma surgeon for a second opinion. Fortunately, the trauma surgeon could see me the next day. I left the surgeons office with copies of my medical records and x-rays for my appointment the next day.

I couldn’t resist reading through his monthly progress notes noting that each month, he had recorded that I was having normal healing. There was no mention of pain, no mention of my being in tears every time I saw him, no mention of suggesting to me I would need more surgery, and no mention of anything abnormal at all. The records had clearly been sanitized and all incriminating evidence deleted. The x-rays did clearly show the broken screws with the heads floating around my knee. Tomorrow will bring another perspective altogether.

Tha Aftermath:Part 7 Trial of therapy

The Aftermath, Part 7

Trial of Therapy

The infectious disease doctor decided after six months I could discontinue the antibiotic pills as the osteomylitis had healed. The surgeon felt it was safe to begin weight-bearing with the use of a walker and sent me to physical therapy.

Therapy sessions were extremely painful and unproductive. I was able to move a slight bit better, but the pain was excruciating. By that time, the surgeon had taken me off of my pain pills thinking I was just drug-seeking. Three times a week for a couple of months I struggled though these therapy sessions, often in tears. The therapist felt I was not motivated and that I could do better if I would just try harder. He told me that frequently, too.

 I felt absolutely broken and defeated. I still was not able to work. I was sick all the time with an unexplained fever, night sweats and chills. Others in my life felt I just enjoyed the dependency of being disabled, and what little help they had provided, dried up quickly. I was sick, alone and in poverty. Depression had always been a problem for me, and I was feeling its full force. I couldn’t afford to see my psychiatrist or to take my medications on a regular basis. I would take half a dose or take it every other day depending on which medication it was.

It was a few days after Thanksgiving, when I heard something in my leg snap, and was immediately in excruciating pain. I couldn’t bear weight at all, even with the assistance of a walker. I tried to get an appointment with my surgeon, but he was overbooked due to the holidays. I did try to go to physical therapy, but with these new symptoms, they wouldn’t see me.

When I finally was able to be seen by the surgeon the next week, he did the usual x-ray. He brought it in and showed to me that two of the screws holding my fracture site in place had broken and the heads of the screws were floating around my knee.

He explained to me that the osteomyelitis had likely returned and I would need further surgery to reset the bone and remove the infected area. He told me to come back after Christmas for what I assumed would be a preoperative consultation.

I actually felt relieved that there was something truly wrong, and there was hope to fix it. So I hunkered down for a month of pain and waited for the surgery. Christmas came and went, and all I wished for was this nightmare to end. That wouldn’t happen for quite some time. I stayed in bed, my computer had quit working and the only reason I had to get up was to care for my very special beagle, Zoey, who kept me company and gave me reason to live.


                                To be continued…

The Aftermath:Part 6 Outpatient Surgery

Outpatient Surgery
The Aftermath, Part 6

Five days after discharge, I was crammed into a car (my leg would not bend to allow me to sit up). We made it to the surgical center where, because of an emergency surgery being performed, I had to wait about three hours as my anxiety continued to build. This was my fifth surgery on my leg, and I assumed it would be the last. That was some comfort.
 
They removed the antibiotic beads, cut away the scar tissue that had formed, and in general cleaned the wound out. They did suture the incision shut, so no more packing of the wound would be needed.

In the recovery room, they were generous with pain meds. After a couple hours in the recovery room, they stuffed me back in the car, still unable to sit, to endure a very long, painful ride home.

Next, came the agony of crawling up the front steps of my house with a fresh incision. I left the center on the same ineffective meds I had been on all along despite the fact that I had just had surgery. They did place me on oral antibiotics for six months.  

The next few weeks were filled with appointment after appointment. Of course they were not at the same place or the same time which meant numerous trips to see the surgeon, the infectious disease doctor, the lab for tests and radiology for x-rays.

In between, I was trying to figure out how to meet my financial needs and maintain a house to live in.  

 I developed a routine of spending Mondays calling everyone I could think of for financial help. I would sit with the phone book making calls all the while receiving a mailbox full of nasty collection letters. No one could help. Each organization had their own reasons I didn’t qualify. I was too young, too old, had no minor children in my home, owned my house, didn’t work, did have a small amount of income from my retirement fund, lived in the wrong city, county, etc, and etc. Most of the rest of the week I spent in tears of anguish over what to do, as well as being in pain and agony. 

Once my IV therapy was over the nurse and bath aide left, I had no help at home. I learned to eat cold food from cans. My house was beginning to resemble that of the Adam’s family. Dust, dirt and cobwebs were everywhere. 

It was a long summer. I was afraid to use the air conditioner as I had no way to pay for it. I was in fear of losing my house and becoming homeless. I also feared running out of food and starving.

Not once, did a neighbor stop by and ask if I could use some help. A friend of mine did come over once every week or two and do the meager shopping I could afford. Other than that, I was pretty much alone. Weeks went by when I didn’t see another person. My dog was my soul source of comfort most of the time.

  I did have a monthly appointment with my surgeon, who didn’t seem to care about my pain. He ignored the fact that I cried every time I saw him and his routine recommendation, was to “stay the course.” The problem  was that he had no idea what course I was on.  

To be continued…

Dark Secrets

Dark Secrets


Yesterday, the words I spoke were quite true
How can what I feel be so very wrong?
Acceptance is not natural to you
Surely, you’ve experienced some bad times

Why don’t I have the right to feel and grieve?
And to sometimes feel sadness and despair?
You in your life can’t possibly conceive
The pain and obstacles I face each day

So, now you are angry because I told
What gives you the right to judge what I feel?
Now onto my darkest secrets I must hold
No longer having the freedom to share

Even if you can’t resolve to accept
My thoughts apparently foreign to you
It seems they’re entitled to your respect
After all, I deserve my feelings too
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Drowning

Drowning

I am drowning in a sea
sea of pain and misery
Misery from physical pain
pain  which can make insane
Insane how it saps energy
energy depleted—synergy
Synergy causes pain that’s there
there are times almost can’t bear
Bear I must for I am drowning in a sea
sea of pain and misery

On Discrimination

On Discrimination

This topic is on my mind as I watch a replay of Martin Luther King’s “I Have a Dream" speech” that was fifty years ago. I don’t remember it as I was thirteen months old. I had never seen it in its entirety until tonight.

Before my accident, I would have said discrimination really didn’t exist, but having been discriminated against since being honest about my depression and since becoming physically disabled, I have come to realize how much it does.

Then, I thought about my small rural farm town, and that it is very White. In fact, all White as far as I know. Anyway, I won’t go into a rambling tirade but just think:

  1. Do you treat people in wheelchairs differently than other people? I have people assume I am mentally deficient because I have a disability.
  2. Do you cross the street if you see someone of another color approaching you? Would you do the same with someone of your own race? I have seen discrimination first-hand, and know it does occur. This is my plea for all of us to practice acceptance and tolerance of all minorities.

Wading through the Landfill

Wading Through the Landfill

When I was ill in May, I literally died and was brought back after being life-flighted to the medical center. I had developed acute renal (kidney) failure, had no blood pressure and quit breathing for a few minutes during which anoxia (oxygen deprivation to the brain) occurred.

The first few weeks I was very confused and couldn’t remember what I should have readily known. It was six weeks before I was able to start writing again, and several more until my thinking began to clear. I am much better now and back to fairly normal activities.

 In my writing class last Tuesday, our exercise was to write about a journey we had taken. The facilitator suggested I write about the journey through this confusion.

This is not meant to be a literary masterpiece, but a sample of how confused my thinking was those first few weeks. I thought it might be interesting to share as we all know someone with confusion whether due to mental illness, physical illness, or dementia. These are written as fragmented thoughts as that is how my mind was functioning. I have not written them in sentence format.

Dusty windows conceal attic treasures--long forgotten memories packed away

In search of the picture for which I bought this frame, forever buried
Bits and pieces of two months remembered, mostly obstructed by thick fog—moving ever so slow

Every day so very long, but only a few minutes remembered

Computer upgrade, a maze of nonsensical icons, ever changing, mind stays the same, learning impossible**

Glasses forever misplaced, can’t find them without wearing them

Bus drivers forgotten, although they remember me

Dirty dishes, what were those used for, did I eat today?

Grocery lists written, items purchased never found

Days out of order despite looking at two calendars

7:00, light outside. Is it morning or evening?

Wading through a landfill of thoughts, not remembering what searching for

Did that really happen, or was it a dream, real versus imagined, indistinguishable

So very hungry, refrigerator a puzzle, can’t figure out which piece to remove, stomach growls, weight lost as well as my mind, clothes too big, run over dress hems which tangle in wheels of chair

Warm fur beside me, comforting, familiar, always by me, centering a bit

The poem I wrote and posted, or maybe not, searching for the right words

Afraid to leave house, fearing the once known, now forgotten

Was it today, or yesterday, or tomorrow or imagined

Isolation lonely, but conversation tires me. Have I heard that before?

Write down everything, wake, sleep, pills, phone calls, visitors, but what day is it? Calendar useless if days are missing, or maybe two Tuesdays this week, or was it last week?

Afraid to do anything, afraid not to, fear permeates my life

A trip to the ER, somewhat of an answer, oxygen deprivation, brain damage, how much, how long, should I tell anyone—probably obvious anyway…  

Expect Respect

Expect Respect
~~~~~~~~~~~~~

Is it too demanding
to expect understanding?
Or to treat us with disability
with our due civility?
~~~*~~~
Give to us impunity
respecting our dignity.
Recognize our ability
to live productively.
~~~*~~~
What we lack in agility
is made up with creativity.
It is primarily fable
that we are often unstable.
~~~*~~~
At times we need assistance
but show some resistance,
preferring independence
along with self-reliance.
~~~*~~~
It never hurts to politely ask
if we need help with a task.
We will not be offended
if the question is open-ended.
~~~*~~~
Our main priority is to be
accepted members of society.
~~~*~~~*~~~*~~~*~~~*~~~*~~~*~~~

The Aftermath 5:The Will to Live

The Aftermath 5:

The Will to Live 

The waiting and worrying took its toll on me fast. After two weeks, I was not eating and pretty much spent all of my time in bed. The only things I got up for were going to the bathroom and putting the dog out.

I felt so very sick, and was running a fever of 102 degrees. Night sweats became the norm. My UHIC surgeon was gone all of July and August, on loan to another university. Calling UHIC didn’t get me anywhere. They would just tell me recovery was a long process.

I eventually had my son take me to the emergency room on a day I was feeling particularly bad. The ER doctor diagnosed anxiety and put me on medication for that. No one seemed concerned about the symptoms of infection I continued to have.

These two weeks, I felt as hopeless and helpless as I ever had. The depression was unbearable and I contemplated suicide. There seemed to be no reason to live. The harassment by creditors continued.

I spent every Monday with the phone and phonebook, making calls to every agency I could find trying to get some help. These consistently yielded nothing but tears. I was literally someone slipping between the cracks. At my age,  with my previous income, no children younger than eighteen, and owning my home, there was nothing I would qualify for.

The middle of July, I made the decision to decide what to do, go on or give up. I suddenly felt a power, a spiritual awakening happen. I grabbed my notebook and began to write. First, I wrote, “Don’t worry. God is in charge.” I taped this to the small refrigerator I had by the bed. This simple thought was such a relief. Whatever was going to happen would not be my fault.

I assessed my situation and how I was living.

Again, in my notebook, I began to write out a list of rules I would live by:

I would get up by 10 AM

I would eat at least two meals a day, a meal consisting of at least three different foods

I would sit in my chair for two hours every afternoon
 
I would complete one word search puzzle daily to stimulate my mind

Between five and six PM, I would work on the foot-high stack of paperwork and forms I needed to complete for my medical bills, regular bills and to apply for some sort of assistance

There were more, but these are the most important ones. I had to start making the effort to take care of myself. These rules were not shared with anyone else. I was accountable only to myself. If I was going to live, I needed to follow them.

I muddled through the next six weeks using these, waiting for my surgeon to return September first.

Recent Events

Recent Events

For several years, I have attended a conference in Iowa called the “Empowerment Conference” for persons with disabilities. Last year, they requested suggestions for this year’s conference. I suggested a workshop on the benefits of Therapeutic Writing as this is a subject I feel so strongly about, and which has helped me so very much in dealing with my disabilities, as well as just the challenges of life in general.

Suggesting was apparently very close to volunteering and I was asked late last year to conduct the workshop. I accepted enthusiastically. As time for the conference neared, I felt less and less like I could fulfill this obligation.

After my severe illness in May which has left me with some degree of cognitive and memory impairment, I really did not feel I would be able to lead this workshop.

My thinking was cloudy and as I tried to prepare the handouts for the July first deadline, I couldn’t figure out how to approach this subject. I did finally assemble the handouts, nine days late and submitted them.

Following this, I still could not seem to plan what I would say in an hour and came very close to cancelling numerous times. Yet, as I so strongly believe in the power of the written word, I kept postponing the decision of whether to cancel or try to find someone else to lead the workshop.

By the end of July, I made the decision I would proceed with it doing the best I could.

Next, I had the logistics of how to get there. I knew I had to have my electric wheelchair. My manual one would require too much energy and I would tire too fast. As I have written about before, obtaining handicapped transportation in this area is about as likely as making a fortune panning for gold. Service after service told me they could not accommodate my needs. After two days of calling with frustrating results, I found an ambulance service which would transport me the thirty-six miles to the conference for $134 dollars—one way. I readily accepted this, realizing there was no other way. Then, I set about writing my presentation. I finished it on Monday, the conference being Tuesday through Thursday.

I was also apprehensive realizing I would be out of my “comfort zone” of home for three days and two nights. I did stay in a wonderful handicapped room, and due to my sleep disorder, was allowed a private room, whereas others were required to have roommates.

The trip down was great and I enjoyed the first day of the conference.. My presentation was the second morning, the second session. I skipped the first session to focus on my presentation.
I went down early to assess the room and make sure I had a microphone which did not require standing at the podium. I moved the tables around to where I felt comfortable that. even without being able to stand, I felt like I would be able to be seen.

My session initially had forty-five signed to attend, then a couple days before my presentation, it rose to fifty-six. In reality, seventy-five people attended, several wanting to start their own therapeutic writing groups. Others were just interested in some independent writing/journaling. I did point out the role of an online writing community which allows connection with other writers as an important part of my writing program.

I have done some public speaking before, but this time, talking about a subject I am so passionate about, I was not even nervous. I wanted to share with others the gift of writing I have received. I would say it was my best presentation ever.

I made it through the rest of the conference in fine shape, although was happy to get home to my beagle and the comforts of home, but so glad I persevered in attending the conference and presenting.
Today, I am tired and sore from too many hours of sitting in a wheelchair, but ever so glad I went, and I feel, made a difference in the lives of others with disabilities.

Dusty Windows

Dusty Windows

My attic windows used to sparkle
Reflecting sun in every way
Exchange of ideas flowing freely
Revealing what I had to say

There is a collection of treasures
Inside the once clean panes
I think back with yearning
Realizing I am now insane

What was previously beautiful to me
I would just as soon keep out of sight
As I sit here in the dusk
Awaiting peacefulness of the night

How hard is it worth looking
Through glass just barely clear?
Wondering if I have the strength
I shed a solitary tear

Having always tried to do what’s right
And about so many I care
This in the autumn of my life
Seems just so unfair
 ~~~~~~~~~~~~~~~~~~~~~~~~~~~

tanka (at the garden party

at the garden party
a thirsty peach rose drinks
renewal as
raindrops cleanse dust from
drought-withered blooms

Am I a Prisoner of my Life?

Am I a Prisoner of My Life?

Some things are set in stone
It does no good to bemoan
These are facts that can't be changed
But so much of life can be rearranged

I can begin by acceptance
Of what is happenstance
And while doing so, change my attitude
Holding strong to feelings of gratitude

I have so many choices in how I live
Life has so very much to give
In so many ways I have a choice
And by writing, can share my voice

I can love and I can share
About so much I have to care
If I stop to search my soul
I find a cornucopia which is full

In so much of life I can partake
Not to do so a mistake
Paying attention to my spirit
Provides a particular merit

To being a prisoner, I would say no
I have so many ways in which to grow
In doing so I have a wonderful chance
Of enjoying life’s mystical dance
 

Grief Brings Relief

Grief brings Relief


I feel the discomfort and withdraw
Telling myself I don’t care
Deliberately deceiving myself
Denying reality in an attempt
To numb the pain
The very essence of which
Does more damage
Than accepting the truth
Self-honesty allows
The grieving process
To proceed
As is appropriate
And without the harm done
By denial of true feelings
~*~

Seeking Self

Seeking Self

'Neath the starry evening sky
Thoughts of past times go by
Feeling sadness at the cost
Of seeking what wasn’t lost
Years spent searching outside of me
Until I found my soul internally
Each day I grow and learn more
Following the map I lacked before
oxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Opportunities are Born

Opportunities are Born
 
Each day brings with it a brand new morn’
Out of which opportunities are born
I am able to design my day
Whether to work, rest or play
For each day of my creation
I offer the gift of appreciation
Thankful for the pastel sunrise
And the blue afternoon skies
Living through till sunset
A day of joy, without regret
Waiting for stars to appear above
To fill my evening with love

A Brush with Life

A Brush with Life
When I woke on this glorious day, I took in the beauty of the sunrise. Each day adds another brushstroke to a well-lived portrait, another petal to a delightful floral bouquet.
Some stories are best started at the beginning, others at the end, and some vacillate back and forth without a clear sense of direction. Life is subject to change, alterations both good and not so good, but it is what we make of life which truly counts, how we treat ourselves and how we care for others which brings to us life’s rewards. At times, life has very stable, and at other times resembles a crumbling rock wall with chunks splashing into the aqua sea.
This spring has been a rocky start to the year. Five weeks ago, I woke up too dizzy to even transfer into my wheelchair. I called my homecare nurse who directed me to summon the paramedics using my lifeline button. Living in a small community, the ambulance arrived in just a couple minutes, loaded me on a gurney and rushed me to our community hospital. On the way into the emergency room, they asked me if I wanted CPR, should it be necessary. I declined that, but could feel them start an IV as they kept encouraging me to stay awake and breathe. After a few minutes, they decided to life-flight me to the nearest full service medical center.
I was immediately transferred from the helicopter to an intensive bed and once again reviewed that I did not want CPR. They decided I was not competent to make that decision and called my son for further instructions regarding advanced directives.
I was transferred to a regular hospital room after four days and sent home after another four days. It has taken a long time to regain my strength and I am still struggling to do so, but am anxious to start writing again. I have just recently realized how sick I truly was and how each day is a blessing.

New Life

Where I have been, I know
My future, not quite so
The past is clear to me
Beyond now, I can’t see
I have learned from the past
Mistakes don’t have to last
Each day provides a chance
To try out a new dance
The past does not repeat
If performed to a new beat
Take the best from the past
All else away do cast
Adding love and kindness
Helps put past behind us
Freedom from past stress
Brings future of success

Senryu

woman in wheelchair
at bank countertop reduced
to five years old



discrimination
how I judge you because
you’re not disabled



woman in wheelchair
roars into town at
  three miles per hour



    woman in wheelchair     
never has to
 stand in line



woman in wheelchair
pulls tray of ice from freezer
indoor hailstorm



woman in wheelchair
  does  10 K
   no sweat



waitress in wheelchair
delivers dinner
on the run



woman in wheelchair
  never reveals her
  shapely butt



      woman in wheelchair      
never has to ask,
"Is this seat taken?”





Equality

Equality

Of discrimination I tell
Scourge of injusticeI wish to quell
Equality my hope to sell

Pale Spring Dawn

Pale Spring Dawn

Pale spring dawn broke the horizon, starting sunny March morning. A second new beginning likewise transpired, both awful and wonderful. This one started as a crack, a single solitary line in the glass of life. Developing tentacles, it spread, shattering all that had been, was expected. All encompassing, past sins erased. New dawn replaced darkness of night, fears held. At once both pain, enlightenment. Creation of new life, old blessedly forever gone.
Slowly, sun’s rays began to melt the ice of yesterdays. Tear drops flowed freely, warmth replacing frigidness of life past. Painstakingly slow, soul, inner core, once hard as stone, softened.
Once hard tentacles became
soft.  A web catching permanent night before becomes future. Old baggage sifted through, fresh life captured. Self-serving rock of materialism and power struck down, revealing dawn of gentle softness. A new day, a second chance. Life forever changed…

cracked rock softens
supports solitary seed
wild rose unfolds

Anxiety


Anxiety  

Today finds me riding
Tomorrow I’ll be hiding
Each day anxiously
Living with anxiety  

Am I just a token
because my brain is broken?
If I only knew why
my tensions run so high  

This demon I fight each day
Deciding whether to fight or play…
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