Triumph Over Stroke Monthly Meeting

This month’s meeting for Triumph Over Stroke was the first of this new year. It was raining and the walk up to the Physician’s Office Building was ice covered. I worried about some of my fellow stroke survivors making their way in. Many are walking with canes. I noticed the great care that I took across the parking lot. Yup, slow and cautious. I felt like the old man that I am. Although I don’t look it, if I do say so myself, I’m not as steady I used to be. We are all survivors and we all carry scars and lingering issues.

This month’s meeting featured a thoughtful and comforting moderator. The good doctor, a psychologist brought out the conversation with ease and grace. So, the stories flowed. I won’t go into detail, and I won’t be sharing any names here. But, I do want you to know how important this work is. A few of my notes:

Most of us could not have made it this far without our family’s support. A stroke not only changes your life, but it also disrupts and alters the hopes and plans of your loved ones. The bond is usually strengthened. There is a heightened awareness that life is indeed, precious and oh so fragile.

There was a lot of love in the room. Very grateful survivors recognizing how much their partners and family members sacrifice daily to keep their loved ones on track and recovering. One such survivor questioned what he would do if he lost his wife. He admitted that a nursing home would probably be his only option.

There was also some discussion that is that antithesis of love and devotion.

Here’s the deal. After we get through the worst of the stroke the battle is not over. I look pretty normal. So do many survivors. That’s the first goal, isn’t it? To get back to normal as fast as possible. But, all of us are dealing with a new normal. One in which simple things we used to do are no longer simple. When a stroke takes out (literally destroys) brain cells, your brain needs to find new neural pathways. It takes time. Lots of time. Words no longer work for you. Tasks that used to be easy are now a challenge. Most of us get tired more easily. We all experience good days and horrible days. But, because we look normal, family, co-workers, and friends can sometimes brush off our difficulties. Or worse, blame us for playing “the stroke card.”

The desire for a stroke victim to withdraw from society is great. It’s part of our battle back. It’s hard to stay motivated. Even about the activities, we used to love.

Another recurring theme. All strokes are not the same. Blood vessels deliver nourishing oxygen-rich blood to every part of the brain. If one or more of those vessels is clogged or clotted up, those parts of the brain that are oxygen deprived die. Dead forever. In severe cases, paralysis is dramatic, all-encompassing, and catastrophic. The lucky ones lose parts of the brain that may control an arm or a hand and leave speech, walking, and the face alone. Rewiring is still incredibly difficult, but the focus is somewhat localized.

In my case, I’m still rewiring. It takes time.

And what about this? How much is an insurance company going to pay for? How much time, energy and money can you spend to get it all back? Once you can function aren’t you cured? I can feed myself with my left hand, but what if I want to play virtuoso guitar? Some people get to walk with physical therapy, but what if they were a marathon runner. Do they deserve to train until they can compete at a higher level?

Triumph Over Stroke is a support group. It’s good to talk and share. We all need it. But, there may be a greater calling. I think more people need to know a whole lot more about stroke prevention, recognition, and recovery. I also believe if we’re going to fight back against the tragedy of stroke, we should be fighting all the way back.

Sounds like a goal.