MY BRAIN STEM STROKE STORY
Janet D
Seldom do I find the experiences of other brain stem strokes survivors stories so I decided to provide my own story.
It was August 28, 1993 when I experienced a devastating brain stem stroke that left me a quadriplegic. I was 32 years old, married with a 2 year 11 month old son and a 9 month 3 week old baby girl. The brain stem stroke changed my family’s lives forever.
The practical issues of my brain stem stroke.
Since the stroke happened my family and I have had to live in separate locations. My family live in the family home and I live in a complex continuing care unit in a hospital.
After the stroke I spent 7 months in ICU, 5 of them I spent attached to a ventilator.
My first few days in ICU were spent in a coma. When I came out of the coma I was unable to move my mouth . At that time all communication was done by me answering simple yes no questions with eye blinks. That condition didn’t last long, I think, only a few days.
Right now I have a tracheotomy, I don’t have a voice but can move my mouth.
I have a feeding tube. The stroke took away my ability to swallow.
(At times it would be nice to attempt to swallow but the consequences could be devastating ).
The brain stem stroke changed my eyesight. I now have Nystagmus. Nystagmus is normal eyesight but with constant bouncing and sometimes double vision.
After I spent 7 months in ICU, I spent almost 1 year 6 months in Rehabilitation and then here in Complex Continuing Care.
In CCC, I operate my computer by a paddle that rests under my chin. Each word or command is tapped on the paddle in Morse code and is converted into English and appears on my computer screen as a word document. It is slow but it works.
I can’t emphasize enough how important my computer is to me. Everyday I use it. It is a great communication tool for me.
With the help of my Mini Relax and some other electronics , I’m able to operate the television myself.
I have two wheelchairs a manual one and an electric. The manual chair I use whenever I leave the hospital. It is smaller, much easier and quicker to maneuver into tight places.
My electric wheelchair, I operate by sipping or puffing into a straw like tip. Each type of sip or puff, (hard or soft), indicates how I want the wheelchair to move.
Almost everybody knows Christopher Reeve / Superman, my electric wheelchair operates similar to the one he had.
I have a great Occupational Therapist who helps a lot to keep all my equipment running perfectly.
On a daily basis I receive wonderful and consistent care from the nurses. They have a countless variety of responsibilities. One of them is that they have prevented my skin from ever breaking down which is something to be commended. Most nurses are pleasant and caring, well suited to their profession.
Three times a week I have Physiotherapy. Range of motion is done on my upper body while I’m on the Moto med, (stationary bicycle). My legs are done by another therapist later in the week . The same therapist also comes in to stretch my mouth because my mouth doesn’t open very wide.
Every two weeks I have a massage. The massages were recommended to me by a relative. They reduce my muscle spasms for the following couple of days.
Two wonderful dedicated volunteers each come in one day every week. They have been sharing their time with me for many years. One reads to me and the other does absolutely anything and everything.
The stroke may have happened to me but the results have affected so many. Without the help I receive things would be much different .
Now the personal side of my brain stem stroke.
While in ICU the very first time my son saw me the out come wasn’t great. The nurses tried hard to hide all the wires and tubes I required. When my son was almost 3 years old he took a look at me and he ran the other way. He was scared and who could blame him. I didn’t look like his mother. He saw a lady sitting in a wheelchair with wires and machines all around her. Worst of all I didn’t have a voice to talk to him and I couldn’t pick him up and comfort him. It was a heart breaking reunion. Logically I knew why he ran from me but it was still heart breaking.
Another occasion I recall was when my daughter was 16 months old. She was being held and gently rocked by her Aunt. Her Aunt tried to pass her down to me but there was no way she would have anything to do with that. My daughter wasn’t leaving the cozy, warm arms of her Aunt. Again logically I knew why she wouldn’t come to me but it was still heart breaking.
I am very fortunate that my husband has always kept me involved in my family’s life.
Through his actions, he has taught the kids many important lessons.
When the children were growing up my husband did plenty, much of which I probably couldn’t do.
He’s never complained, (no matter how frustrated he was or is).
When my daughter learned to walk, he brought her to the hospital to show me that very day.
As soon as I was out of ICU, he brought the kids to the hospital to see me every Saturday and Sunday.
When we got the accessible van he brought me home a few hours every Saturday and Sunday.
In the back yard he built a big jungle gym so the kids would want to be there and I could watch them play.
He and my parents took me to many school and kids activities.
He and my mother helped the nurses whenever I stayed home overnight.
Dan always kept me involved in family life.
He raised 2 wonderful children.
My husband used to come to the hospital and watch many videos with me.
He always did, and still does, bring me home for holidays and special occasions.
When the children were small my husband made sure I was always present. Now that the children are older, he and the kids visit me at the hospital instead of me going home so often.
Presently my daughter is able to read my lips very well. My son does fairly well reading my lips. He does have a little more difficulty than his sister though.
The children were so young when the stroke happened and we started living in separate locations, so they don’t really know anything different.
I know how fortunate I am, how much my husband has done for me, but I still have a feeling of frustration .
The stroke may have happened to me but it has deeply affected my family.
There is no way I could take credit for coping well with the stroke without the help and support I received from my husband, my parents and other family and friends. I have received all different kinds of incredible support from family and friends . I am blessed by so many and they have made my journey much easier. Since that day in 1993, I have learned things about myself; some good, and some not so good.
My family mean so much to me. They certainly didn’t expect their lives to be this way. It has been and still is very difficult for them. They, especially my husband, deserve a lot of gratitude and praise from me.
My parents deserve a lot of gratitude and praise too. They have done, and still do, so much for me.
It is hard to believe the brain stem stroke happened almost 18 years ago.
It is strange, when I’m out and away from the hospital. I briefly forget I’m in a wheelchair, until I see a reflection of me in a window or mirror.
Also, for a brief moment in time, I forget I don’t have a voice and am disappointed when I open my mouth to talk and no sound comes out.
Whenever I dream, I’m always walking and talking. I’m never in a wheelchair.
I’m sure many people have some kind of issue they are dealing with that may be more devastating than my family’s situation. However, I can’t help but wonder what could have been for us if that brain stem stroke never happen.
April 21, 2011
Janet D.
