I have a friend who is more like a sister to me, who was diagnosed with an AVM about 6-7 years ago located right above her brain stem. It has been a struggle for her from the start, with debilitating headaches, hydrocephalus and loss of motor control/skills. Over the years from her initial diagnosis, she managed to improve with various treatments to shrink the AVM and lots and lots of physical therapy and prayer. She regained her ability to walk and talk and all that is important. You would have never known there was something wrong, but then, about a year and a half ago, she had another treatment to further shrink the AVM (embolization) that didn't go so well and caused her to lose much of her ability to eat, swallow, walk, talk, see, and hear. As far as my friend is concerned, they screwed up. She seemed to be improving over a period of 8 months, when what was left of her AVM ruptured and caused her to have a stroke. She has been since trying to regain her motor skills. She is now 23 and over the past year has barely improved, of course we tell her she's doing so well and has improved so much, but I haven't seen a change in her since I saw her 5 months ago. The worst part of all of this is that she realizes everything and knows exactly what is going on. Her parents and siblings have put their lives on hold for her, doing everything and anything they can. It has been a very traumatizing experience for everyone.
I knew her when she was a baby and it kills me that as her best friend, I CAN'T DO ANYTHING! I visit her whenever I go up north to see my family and try to spend as much time as I can with her, but there is only so much I can do. Every time I think about her, I feel sick. I miss the way she used to be, I miss the sweet, amazing person she was. The little stubborn, fiesty sister who, given was 4 years younger than me would tell me what to do, and I loved it.
We decided to take her out shopping (of course in a wheelchair with her nurse) to give her some fresh air. When I asked her if she wanted to go shopping, this was what she wrote. We have to hold her eyelids open (since she has no muscle control anywhere, and can't even open her own eyes) and hold her hand so she can write. This was her answer:
I didn't understand why she said "shopping now", until we took her out 3 hours later. She was so tired and unresponsive to everything. I felt so bad. It took forever to get her ready, with her feeding and all the other things they needed to do. She knew she would get tired and so was trying to tell us, take me out now! Poor baby.