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!