The Stroke Network, Inc )
Fuel for the Journey

By Lin Mouat


Leaving Hope Alive


The growing number of service men and women coming home from Iraq with brain injuries has served to highlight the plight of all who are affected by traumatic brain injury (TBI).


Brain injury is a peculiar creature. While the causes of this injury, whether in combat, from an accident, or a stroke many of the problems and deficits are common to many TBI survivors. On the contrary each survivor experiences their brain injury differently.


"What kinds of permanent deficits can I expect?" I asked my neurologist, referring to the aftermath of two massive strokes. He didn't respond. After over two years, I knew my problem areas. My mobility had become more and more difficult and I wanted the doctor to say it out loud.


I thought that hearing him say it aloud would somehow free me from impossibly high expectations. As time passes, though, I understand that by not giving me an answer, my doctor gave me a great gift. He left hope alive.


One of the most important things to remember about stroke recovery is that it is a journey, not an event. Whether in big or tiny steps, progress takes place every day even when it isn't seen. When I get discouraged, all I need to do is to remember...


Before the strokes, I'd been cross stitching a baby quilt for my youngest grandson, Caleb. Now as I lay there in the hospital, I yearned for a return of the familiar.


The evening Gary when delivered my needlework bag excitement filled me. Taking it out, I spread it on the white bedspread in front of me - visions of the completed quilt filled me. However, trouble soon followed.


The first thing I needed to do was thread the needle. No big deal. I had threaded hundreds of needles in my 58 years. And I did manage to separate two strands of embroidery floss. Next I brought the empty needle up in front of my face. I gripped the thread in the other hand and raised it up.


A pair of reading glasses helped me see the hole. However, a daunting problem confronted me no matter how hard I tried, my hands wouldn't coordinate in putting the thread through the hole. It was as if my hands were on different tracks. One stroke on each side actually guaranteed that different-track problem.


No matter how hard I tried, I could not get the needle and the thread together so frustrated and in despair, I put Caleb's quilt away in a basket and put the basket in a closet.


A couple of months ago, I got the quilt out. I forgot I couldn't do it and threaded that needle, even working a few uneven rows of cross stitch.


What would my life be like if my doctor had named all of my deficits, disabilities? I can't know for sure, but I suspect I still wouldn't be able to thread that needle because the quilt would still be in the closet untouched. Today I am doing many of the things I couldn't do yesterday.


All stroke survivors walk a fine line between facing reality and hope. The truth is, there is no way to know how far your healing or mine will progress. I do know, though, that by keeping those things open to the hope of progress, I can travel even further than I dared dream.


I am learning to adapt, finding new ways to do "old" things.


My Mom was a child-victim of Polio in the 1930s. This left her with one shriveled arm and the hand locked in a rigid position. Growing up, my friends didn't seem to even notice her disability. Before Polio, she was right handed. That was the side that suffered permanent damage so it was necessary for her to train her left arm to take over. There wasn't anything she couldn't do.


"I can do anything anyone else can do I just find a different way to do it."


Her message still rings true. Mom's words have brought me the encouragement to keep trying.


My right leg doesn't behave as it used to. Walking is still laborious, my foot heavy, my gait ungainly. Unfortunately lumbar spine Osteo-arthritis destroyed the cushioning between my last 5 disks before it was diagnosed. The pain from this makes me walk with an uneven odd gait.


For a while I used a walking stick, hand carved by my brother. But as my strange walk put more stress on my joints, it wasn't long before I started using a three wheeled walker on bad days.


In the meantime, my husband retired and we started to travel. Our first big trip was a cruise. I forgot my walker and getting around the ship was difficult and exhausting. This cruise was to be our coming out celebration.


After we got home, I found a light weight travel scooter. I call it my freedom-scooter and I save it primarily for travel. At home, I still get around with a cane and on bad days, the walker.


There are all sorts of helps available to stroke survivors. It is all right to use the things that can help us live more fully. I know that my husband was skeptical about the scooter. He has been surprised that adapting hasn't meant I've given up walking.


When I have check ups with my neurologist, I no longer feel the need to ask him about my deficits. In fact, I prefer to leave the hope alive.



Email what has worked for you to.

Copyright July 2007

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.