Greatest Birthday Present Ever!

My Birthday, November 25 this year, happened to fall on Turkey Day. Yipee! That gave me a 4 day weekend in which to celebrate. I received the gifts of good food, good friends, warmth of body, love of family and laughter. I also received the best gift ever; being able to help a family in crisis.

Since my stroke, I have become a peer mentor at the hospital where I survived and began recovering from my stroke. As a peer mentor I go to the hospital and visit with stroke survivors and their families who are about to go home. Going home after suddenly becoming disabled, physically or mentally or sometimes both, is daunting beyond imagining for the survivor and the family. On Saturday of the T-Day holiday weekend I was called to visit a 46 year old woman. I will call her Molly. She had just survived a series of left brain strokes. She has no insurance, therefore, she was unable to take advantage of the in-patient physical & occupational therapy at the hospital. Her family has meager means, thus, her prospects for a robust recovery are slim. Her social worker was able to get her into a "nursing" home for 2 weeks to do some physical & occupational therapy before going home. Molly was refusing to go to the home. When I got to her room her adult daughter was outside the door sobbing, inside the husband was too. They were so frustrated because they correctly saw this as Molly's one chance for therapy. I recognized that she was terrified and also knew that the sooner she engaged in therapy the better were her chances of recovering lost function. After gaining her trust I asked her about her fears. I listened and listened. When she was finally spent I explained the value of this therapeutic opportunity over and over until finally she agreed to go, for "1 week". Hopefully once she's been there for "1 week" she will realize the value of staying for 2. I will never know. But, I do know that the hug of her daughter gave me as I left was topped only by her smile.

P.S. Soon after my return home I read an article out of Stroke Connection Magazine the articles of which are all written by stroke survivors. In this article the author was explaining what was good about his stroke. I couldn't believe it!!! I tossed the magazine. I get it now. If I had not survived my stroke. I would not have been able to help this family.

My Greatest Fear

  Just received a text from a fellow Stoke Survivor.  She was in Swedish Hospital for a broken knee AND a hemorrhagic  stroke - the same kind I suffered.  I do not know the extent of her brain damage yet.  Since the survival rate for this type of stroke is only 15% she is considered lucky. If her cognitive function is still good and she doesn't have aphasia - inability to speak intelligibly she in fact is lucky.  She's lucky since the absence of those two afflictions means she can still participate in life.  It is curious to me that when a person survives the tragedy of stroke most people automaticaly assume the victim is 'lucky'. After my stroke I wanted to die.  I couldn't walk or use my left arm. My husband continued to remind me how lucky I was.  That infuriated me! How could I be lucky with these disabilities? I did not understand that I could have lost my cognition, sight, ability to read or speak, all common afflictions of stroke. These abilities are central to being able to participate in community. Even if I can't ski or run or do any myriad of physical pursuits, I can teach children, talk with my husband, laugh at funny situations, etc. If we don't have those abilities we are truly alone.  Greatest Fear!!

A New Life of Solving Problems

Once I was moved from the Critical Care Unit to the Acute Rehab Unit, my new life of solving everyday problems began in earnest.
That first morning my occupational therapist, whose job it was to help me with activities of daily living (ADL), helped me transfer to a wheelchair,wheeled me to the sink so I could brush my teeth for the first time in a week! Simple ADL right?, Wrong! One must remember that the stroke rendered my left arm completely useless. My elbow is permanently positioned in a 90 degree angle and and my fingers are constantly clenched in a tight fist. So how does one unscrew the top off of a tube of toothpaste? How does one stabilize the tooth brush so the paste goes on the brush, not the counter? Argh!! So frustrating!!! Sometimes, depending on the task, I recruit my teeth to help out, but I have to take care not to abuse those! I certainly would miss those if I lost them. Life is full of innumerable, seemingly simple tasks such as this and a stroke survivor as to muster up an unfathomable amount of patience to successfully solve them without blowing a gasket. 

The most intensely aggravating of these ADL's is the bra!! Who invented these anyway? Gosh I yearn for those days before children and age made wearing a bra unnecessary! I know I am bordering on TMI. Oh well. Initially my solution was to hook the back closure of the bra together and pull it on over my head; not easy either but after many attempts of getting hopelessly tangle in it, I figured it out. The draw back to this technique is that it did not take long for the bra to get hopelessly stretched out as to render it ineffective. Why bother? My husband suggested that I try one with a front closure. Well those clasps require 2 hands and manual dexterity. With only one functional hand, that was out of the question. After several months I finally took my bra to to a tailor. I described to her that I wanted her to cut the bra between the 2 cups and sew in place two opposite strips of Velcro. It worked, problem solved! 

I have a dear friend who wanted to appreciate just how daunting ADL"s can be for a stroke survivor whose arm is paralyzed. So she restricted the movement of her arm for 24 hours. She kept a journal of her experience. She was struck by just how many ADL's there are that are incredibly difficult to do with only one hand. The task the presented her with the most challenge and frustration? Putting on a bra! I felt validated!

What about Sex!

Well, It has been quite some time since I posted on my blog.  Life got in the way!!  Yesterday I found myself thinking bout the various questions I've been asked about my stroke and subsequent disabilities.  I am quite open to answering these questions and welcome them. However, I have been presented with a question for which I was not prepared! When I visited my school and  students 3 months after my stroke, a teacher with whom I am collegially familiar but not, shall I say, "close"to  came bounding up to me and in a hushed tone inquired, "How do you have sex?"  Being taken aback, and unsure of  what to say, I said, frankly, "The same way most people do".   To this day I am not really sure what it was she was looking for.  Knowing that the left side of my body was left paralyzed and my sensation of touch was also severely compromised by the stroke,  did she want to know about sexual positions, libido, sexual response, whether mechanical aides are necessary/beneficial? .....I can only wonder.  

 I have pondered this question over the ensuing months/years .  Any reading material I stumbled into that addressed sex  said basically the same thing without exception including:

  * Make sure you  (stroke survivor) maintain good personal hygiene.  This can be a challenge for anyone with disabilites.

  *Intimacy can  be attained without climax.

  * Do only what you're comfortable doing.

While these are important "tips" for anyone engaged in a sexual relationship, I felt all of these articles fell short in addressing  the issues that come up in  a sexual relationship for people with physical disabilities.

If my colleague were to ask me this question today, I would address these points:

If the pre-stroke preferred positions for sex are no longer possible or safe work together to discover new ones.

If the sensory perception is so compromised  a mechanical aide might be helpful in achieving satisfaction.  Try one or two or three, you never know which one will be best. 

I was told by my acupuncturist that the libido meridian is located in the foot. She explained that lightly trailing a soft feather over the feet and the rest of the body during foreplay stimulates the libido.  That worked for me!

When stroke strikes the survivor  and their partner begin a marathon journey of problem solving.  Very little of daily life is conducted the same way.  Partners have to figure out how to do things differently.  The same goes for sex.  Since there are 2 people involved in a sexual relationship, open, honest, kind and patient communication is critical for mutual satisfaction and intimacy to occur.  If the partners had these qualities  of communication in their relationship before the stroke and sex was mutually fulfilling, then mutually satisfying and intimate sexual encounters can continue after the stroke. Both partners simply have to approach sex differently!

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...

1. SHOCK & DENIAL-
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.


2. PAIN & GUILT-
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.

3. ANGER & BARGAINING-
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.



4. "DEPRESSION", REFLECTION, LONELINESS-
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.

5. THE UPWARD TURN-
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.

6. RECONSTRUCTION & WORKING THROUGH-
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.

7. ACCEPTANCE & HOPE-
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.

Home!!!!

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.