Saturday, November 28, 2009

The Wheelchair War Days

I debated whether to title this post The 7 Stages of Grief because the Wheelchair Wars were an outgrowth of  my grieving.  To lose so much of one's physical function is so consummately devastating that grieving must be done. As I went through the stages of the grieving process I recognized many of them from previous readings I had done on death of a loved one. Below,  I took the liberty of changing words about death and  loss of a loved one and replacing them with words fitting to my loss of physical function.

7 Stages of Grief...

You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

In the CCU my first brush with denial was when I asked my neurologist if I would ever regain my physical functions I'd lost.  He said it is different for everyone, but what I do regain   will  come within the first 2 years .  Well, I said to myself, "Not so, I will get it all back before that! Permanent disability is NOT going to be me!""  I hung onto that denial for months before I yielded to reality.  I do believe, however, that as long as I keep working at my physical therapy, my brain will continue to heal and I will continue to make incredibly slow progress over the rest of my life.  I have to believe this.  The alternative is grim.   Perhaps this is still denial, I don't know.  Guess the future will show me.

As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs.

Relentless tears marked these days, punctuated with what I call my "never" statements:  "I'll never do this again, or that again."  While there are somethings I will probably never do again. I've learned I can relearn to do many things again, albeit, differently from before and I also can learn to do and enjoy new things I never did before because they weren't of primary interest to me.

Frustration gives way to anger, and you may lash out and lay unwarranted blame for the death/loss on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion.

You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair ("I will never drink again if you just bring him/function back")

During this stage I inflicted damage to the walls and door jams of our house by slamming the wheelchair back and forth, especially when I got stuck while navigating around corners and hallways.  These fits of rage were always followed by a torrent of angry tears and pathetic wailing grief.  I screamed the questions, "Why me?"  This is not fair!  I did all the right things, ate right was the strongest and most fit I'd ever been in my life!  Why not someone else who smokes and is over weight and out of shape?"  These fits were very difficult for Pete to witness for he was powerless to do anything to alleviate my despair.  Finally, he said while I resumed destroying the walls.  "You can keep doing this but it will change nothing.  When you're finished you'll be right back here with the same problems And you'll feel  guilty when you see the damage you're doing to the walls. " He was right and gradually the frequency of these fits lessened as I began to move on.

Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did before your loss, and focus on memories of the past. You may sense feelings of emptiness or despair. 

I felt all of this and still do at times.  I was taking an antidepressant before my stroke and the doctor had upped the milligrams to keep this inevitable depression at a manageable level....Better life through Chemistry?  Rather than isolate, I threw everything I could at my stroke:  Aquatic therapy, physical therapy, acupuncture, deep tissue message, counseling, and adapted pilates.  I did therapy everyday often twice a day.  Remember I was going to be all back in under 2 years.  Denial, still strong and healthy. I exhausted myself daily and slept like the dead at night.

As you start to adjust to life without normal function, your life becomes a little calmer and more organized.  Your "depression" begins to lift slightly.

A turning point for me was getting my driver's license back as this gave me more independence and lightened Pete's burden.  Another upturn for me was when I returned to school to teach albeit only 1 class period a day.  I now teach 3.  One of my greatest fears was that I would never be able to do anything meaningful again.  I am so glad I still can.

As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life with limited physical function. You will start to work on practical and financial problems and reconstructing yourself and your life without it.


This I did.  I was balanced enough to begin tackling the logistics of negotiating my life as a disable person.  I began my quest of solutions to the many problems facing me everyday.

How to open a can or bottle of wine.
How to put on a bra.
How to chop veggies so they don't roll around
 how to open jars
How to carry a cup of coffee to my classroom from the car.
The list is endless.
With each solution came a real sense of accomplishment and increased sense of independence.  The quest for solutions continues everyday.

During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward. 

This is where I am today.  I have days when I am quite happy and content and others that are angst filled.  The thing I've noticed about the grieving process is that it is not linear.  Many of the stages revisit me in no recognizable order. I can get so angry  but I know if I indulge it I will damage something and since we are remodeling, & repairing & repainting the damage I inflicted over the past 3 years, I know that is not a constructive response to my anger.  I still cry bitter tears.  I fight depression.  But I do try to be grateful for what I  still have.  With acceptance of this "new normal" comes more peace.

The link to the 7 Stages of Grief 

The Simple Pleasures I Miss

At first glance one can easily see and appreciate how a stroke survivor would miss the obvious things such as walking normally.  While I do miss these things it is really the simple pleasures I miss most. Going barefoot, wearing flip flops, freedom of simple movement, wearing shoes other than clunky tennis shoes, slipping  on a shirt, putting lotion on my right arm after a shower, making love the way Pete & I used to, taking  a quick shower; it is always a 1/2 hour ordeal, minimum.  I could go on.  If you are at all curious about what difficulties a useless arm can cause, try taping your arm to your torso for 12 hours, that will give you a glimpse.  Of course, a useless arm is only half the puzzle.

Wednesday, November 4, 2009


On April 7th I was permitted to return home.  The simple acts of getting fitted for a wheel chair and listening to all of my therapists' last instructions to me and riding in the car on the way home was exhausting.  Pete helped me into bed where the puppies promptly joined me.  I slept most of the afternoon.  When I awoke I saw Pete watching me from the door.  While looking back at him I noticed that Emma, my dog, was sleeping under my arm.  I got the sense that Aerial, Madeline's dog was nearby but I could not tell where.  I asked Pete, "Is Aerial next to my face?"  He smiled and nodded. I could not feel her, but I knew she was there.   Where the therapists  in the ARU left off, the puppies jumped right in!

  I slept until morning  when Pete woke me saying I had a meeting with the clinical coordinator from Rehab Without Walls.( RWW).   I'd been told about it while in the hospital but didn't remember  it.  RWW is just what its name implies, a rehab program that is not housed in its own building.  The rehab therapists come to the patient's home rather than the patient going to a clinic to begin the process of reclaiming  independence and function.    It makes sense really.  There is limited value in learning to transfer from a wheel chair to the toilet or shower bench, for example in the hospital when the layout of the home bathroom does not even resemble the layout of the hospital bathroom. 

 The clinical coordinator assigned me 5 therapists:  a PT(physical therapist), Colin, an OT (occupational therapist), Paul, a Rehab Specialist (RS), Dana, a Counselor, Cynthia, and a speech therapist, Erin.  I saw each of them twice a week for 2 hours at a time.

Colin  began my PT by working on basic strengthening excercises for those muscles I could move.  They were going to do double duty for for the forseeable future and needed  to be as  strong as possible.  When we began he squeezed both of my thighs and commented, to my relief, "You're going to be an ambulator."  Music to my ears! :) It gave me hope that I might one day walk again.   As time went on and I progressed I started going for short walks with my cane.  We  started with short distances like 10 feet but I quickly advanced to walking around the block, however, not with a gait you'd recognize as normal.  My OT worked with me on activities of daily living. For example: learning to transfer to/from  the shower bench safely, getting in and out of a car, tying my shoes one handed.  Never did get that down.  Viva la velcro!, grocery shopping, things like that.  Paul stretched my arm and shoulder quite a bit but as far as strengthening the arm there was  not much he could do since I could not and still cannot move my arm at all.  My speech was never effected but my ability to organize was.  This is what my speech therapist helped me with.  She helped me use a planner.  This was a challenge. This lack of organization made doing simple arithmetic calculations impossible for me, not good for my prospects of returning to work as a 7th grade math teacher! So Erin brought me tasks to perform like calculating the cost of produce on sale as advertised on various  mail circulars and figuring out the store where buying certain items was cheapest.  She brought me sudoku puzzles and newspaper articles to read.  These all helped strengthen and sharpen my mental capacities, rattled by the stroke.   She was great because she also was the first person to get me to really laugh.  She was a hoot!  My counselor wasn't all that effective.  However, deep into the summer Cynthia did  say,"I see you driving again."  Something that had never crossed my mind!  Yea, more hope!  I got my license back about mid October.  A huge step forward on the independence scale.  The Dana, my rehab specialist RS basically helped me execute the home exercise program that Colin laid out for me.  Dana was wonderful!!!!  Still is, as she is the only one who from RWW that I continue to see.

  I had RWW come to my house until mid August when my insurance would not pay for it anymore.  They were all fantastic and really jump started my recovery.