Sunday, September 1, 2013

Dear Tracie

Dear Tracie,
I started replying to your comment on She Was Scared and realized my answer was much too long for a comment. I hope you don't mind if  I answer here.
Your comment brought back so many emotions. I remember feeling so scared, hopeful, angry, lost, etc. My family and I didn't know if I would be 100% in a week or if I would never leave the hospital bed. I felt that the staff giving  me words of encouragement was not one bit helpful because they didn't know much more about my situation than I did. I remember feeling like a novelty when the Neurology students came by for rounds. I even had one doctor who told me, "You're just not in any book." I knew what he meant but it didn't help to calm me.
My Neurosurgeon was a bit different. She had seen younger stroke survivors and I remember her telling me, "This is not your life." For some reason I trusted her and held on to that comment with all my night.
But what really helped me was my Doc in Rehab. He was 1 year older than I was and had suffered a stroke 8 years before. He got it! I trusted him and didn't even feel too bad when I would burst into tears (for no apparent reason) when he was in the room. Although he never shared his beliefs with me, I soon figured out that he shared my religious views, which was rare there, and I learned to seek his opinion on many things. He had some lasting effects of his stroke and had made adjustments. For instance, he had lost a lot of the use of his hands so to perform any procedures he had to have another doctor be his "hands" so luckily it was a teaching hospital and there were lots of other doctors.
They had a support group for stroke survivors there in Rehab. But really, I felt totally out of place. Every other person was at least 30 years older and was pretty much resigned to staying the way they were. I was young and hoped/planned to get better!
Honestly, I never found a support group where I felt I fit in. It's very frustrating at times. I still feel that I am really on my own to figure things out. Of course I have great family/friend support but it's really my deal.
That is why I love to hear from people like you. You get it. You know I'm not crazy (right??)
The best thing I was told was by my physical therapist, Tim. He told me that because I wasn't in the books that just meant I wasn't limited by any expectations. "They don't know you. They don't know what you can do! Put yourself in the books."
As far as my blog, my husband thought of the name. We wanted something that was not too sad but not too light minded. There really isn't anything funny about strokes but the resulting situations are at times absurd. As I have said before, I can either laugh or cry. Crying doesn't help. I know because I have tried.
I found out later that there really is a book called "Strokes For Dummies" and I think it's on Amazon.
I hope that they can find the cause of your strokes. You have 8 kids who need their mommy!
I would really like to hear from you more. Stories like yours always give me hope and inspire me to work harder. Keep fighting...for both of us.

1 comment:

  1. I am just honored with your thoughtful reply Jodi. I think I do get understand some of the challenges of being a stroke survivor. There are some good things that have come out of this and some funny, funny days. When I was in the ICU I was mobile so not-catherterized ... except there was no bathroom for patients in the ICU so no one knew what to do with me. I thought I was going to have to hold it for the duration of my stay. Yep, good times.
    Thanks for the encouragement and I look forward to getting to know you. I will be reading about your continued healing. God bless, Tracie