Big Discovery For Me Today

I think I discovered one of the key events in my life that is causing my TMS pain. Bruce's success story (https://www.tmswiki.org/forum/threads/my-story-life-with-out-papa.138/ (My Story: Life with/out Papa)) was on the homepage this morning and as I read how a key traumatic incident early in his life caused much pain for him, I realized that I had my own traumatic incident.

When I was 15, I had a stroke. It was termed 'minor' as far as strokes go, but it still affected my entire right side, especially my fine motor skills. Over the next several months, I did physical therapy and had to re-teach my brain and body how to walk and how to write again. At the end of that time, I appeared normal to those around me (including my parents). Aside from the very occasional verbal slur, it appeared that I had made a complete recovery. But inside, I knew that wasn't true. My stroke had fundamentally changed who I was as a person. Whether it was the physical aspects of the stroke changing the structure of my brain or just my perception of what had taken place, I now saw myself as different and vulnerable. A certain amount of my innocence was lost and I was forced to wrestle with my own mortality. During that time, I kept 100% of my thoughts to myself. My parents were good and loving, but were not supportive in the way that I needed. I had promised myself years earlier, while observing their grief over my older sister's rebelliousness, that I would not be a burden to them. That I would not be a burden to anyone, really.

As life moved on, I lived with this new reality on a daily basis. I felt very different on the inside, but appeared unchanged from the outside. I made sure to keep up appearances to ensure no one would see the real pain I was experiencing internally. I struggled with feelings of shame, inferiority, and abandonment and began to live with the fear that it could happen again at any instant, without warning. I became convinced that I would die before I reached 30. All the while, I kept all these scary thoughts to myself. It was only after my second stroke at age 37, in the midst of tension headaches and the real start of my TMS pain, that I decided to get help. I saw a therapist for the next year who helped me to put some of my experiences in perspective and to delve into many of the emotional scars I have carried around. We spent some time discussing my strokes, my relationship with my parents, etc., but I think this post is the first time I have ever talked or written about my stroke from an emotional standpoint. Usually, when I talk about it, I just give facts - "I was handing out yearbooks after school one day when I heard a loud ringing in my ears. I immediately felt weakness in my right arm and leg. I stumbled outside and collapsed on the grass where I laid for 2 hours until someone found me and called for help." I never get into the emotional turmoil the incident had on me. Even now, I feel like I'm just scratching the surface. But hey, it's a start.

 

Wow, I'm so touched by your story!! I'm struck by how your instinct was to protect your parents and not disturb the waters for them. I feel so sad for the terrified kid you must have been and the fact that you kept up a stoic front in the aftermath of such a huge trauma. My older son is 16 and I can't even imagine how scary it must have been for you and your whole family. It doesn't sound like you got the support or reassurance you needed as a kid and I can't imagine how dangerous the world must have seemed to you after that. You couldn't even trust your own body in a sense. The trauma, ptsd, and your personality are all the ingredients for TMS. So glad you shared your story and I hope you experience emotional healing from now on!

 

Was it because of some rare genetic issue? That kind of stuff doesn't happen randomly...

 

@Balsa11 Yes, though it wasn't discovered until later. When I was in my early 30s, I had a TIA (stroke-like symptoms without the long term effects) and was sent to a neurologist who ordered a ton of tests. One of the tests found a hole in my heart which they felt was a likely cause of the stroke and TIA. Yet, my neurologist encouraged me to wait and not have it closed immediately. After my second stroke at 37, we all said enough is enough and I had the hole closed later that year. It turned out to be much bigger than they originally thought (17mm).

My current doctors are always surprised that they didn't find the hole after my first stroke at 15. I sure wish they had. They did plenty of brain scans and tests, but never checked my heart. Closing it back then would've likely given me a bit of closure and kept me from feeling like I could just die at any moment.