I work remotely in the compliance department of my physical therapy company. I perform chart reviews to make sure they are compliant. Fun job. Yesterday, I had a meeting in the corporate office with an external compliance consultant to explain my role in the company and what I do.

I was actually kind of excited to get out of the house and go see some co-workers. It ended up being rather depressing for me. Not because of the meeting with the consultant lady, she was lovely. But because of me.

No one knew who I was at this company that I’ve had over a decade of involvement with because well, I’m never there. During the meeting, I explained that I had a stroke 8 years ago and my life and ability to function as a practicing PT was demolished.

As with every encounter I ever have in my life, I felt awkward. On the outside, it looks as though there is nothing wrong with me. But all through the meeting, I was aware of and could feel my body tremoring internally. This is pretty much a constant in my life, I always feel myself shaking on the inside but just don’t notice it as much when I’m at home sitting on the couch. It wouldn’t be noticed by anyone else. I can’t write so I couldn’t take notes, and I got tripped up on a few words and feel like I came across as rather dumb at times. After, when I got back home I was utterly exhausted and had to lie down for a couple hours.

I really wish there was some kind of virtual reality where someone could experience living in this body for even a few minutes that I live in every second of my life. Then all of the insensitivity, even from people quite close to me, would stop. Probably not, but maybe.

Categories: Brain stuff, Stroke stuff

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13 replies

  1. Wow! Reading your post is helpful for people like myself to get at least a
    vague understanding of what it must be like. Hope that the people in
    your life can also start to be more understanding!

  2. I feel you 100%. I have not been able to return to work due to the combination of my issues with Aphasia and endurance. Carrying on a conversation with people used to be so enjoyable, now I avoid it. I agree with you in wishing people could “Walk a mile in my shoes” so to speak. Even my loved one who have been with me every step of the way and say they “understand”. But there is no way they can. The fatigue, the forgetfulness, the loss of self… Just to start.. Keep it up though, keep working, keep being you.

  3. Amy, I had my stroke 4 years and 3 months ago. What a life changer, I feel for you and any of us who have had one. I KNOW what you are going through and would not wish it on anyone. I pray to
    christ for healing for all of us who have had this terrible life change in our lives, BUT, we are still alive and can half way function.
    May I ask are you a christian?
    I am able to most of my work that as I use to and try to hide the things that dont work as before and I thank GOD I can get out and try. I joined this group right after I had my stroke in August 2015, a day I will never forget. Maybe we can chat and help others who are going through this with us.

  4. It has been 8 years since my cerebellar stroke and brain surgery. I was retired so did not have to think about returning to work. However I have been struggling with finding self worth again. Tried a volunteer job a year ago at a local women’s center. Unfortunately my brain just wouldn’t let me think fast enough to answer the phones, my body not strong enough to do light cleaning, etc Because I “look” fine, I had to admit that I had a stroke and left after a month. Now working on trying to find a meaningful hobby.
    My heart goes out to you and any other young person who has experienced a stroke. Have you or anyone else ever sought professional help for mental and/or physical issues?

  5. Amy – thank you for being optimistic and brave heading into work and sharing your journey with your audience once again.

    Just like that car that emulates how a drunk driver’s impaired I too wish I could easily show what is going on in my body that cannot be easily perceived by anyone. “Here, try these on for a while while I go get a drink from that big metal thing in the kitchen, y’know . . . the thing that keeps things cold . . . or frozen . . . you know . . . oh it’s on the tip of my tongue. “You mean the refrigerator John?” . . . yep. That awkward space makes me feel like a dolt, especially when I’m presenting pitch decks and the same thing happens. SO HUNG UP on a simple single word. It’s damned up the rest of my conversation eagerly waiting behind it if only I could find it and blurt it out! UGH!!!!!! Then the conversation usually just keeps going without me. With me stuck in that space . . .I’ve learned to now say, “Please wait, I’m not finished, I just can’t find a word.” It doesn’t happen everytime, but I’m getting more used to it every day.

    I graduated out of vestibular therapy with my amazing therapist telling me she’s done all she could for me. I said “But . . . I’m not better yet.” She said “John, you are. You’re loads better than when you arrived.” and thinking back to when I started I was better, I’m just not the same as I was before the strokes, or will I ever be.

    Had an eerily similar conversation with my therapist (psychologist) when he said: “Between now and our next meeting start to think about if you really need these appointments anymore.” What?!?! Of course I do. There’s an end to thereapy? I could never see the end of my appts because I’ll never see the end of my symptoms. But he was right, within a month I “graduated”, for the lack of a better term, from my psychotherapy appts too.

    I could work from home, however, the graphics-intensive files I need access to are more quickly accessed if I’m on-site so, it’s off to work I go 98% of the time.

    Amy, I also get the super-wiped-out feeling by the end of the day / def by the end of the week. I’m sure you’d give not have had your stroke to be able to go into the office everyday without your symptoms. I sometimes think the same thing, however, my wife revealed to me over the past 4 years that If I hadn’t had the strokes we wouldn’t be a couple anymore. Honestly, I was such a self-centered, workaholic, oblivious, selfish jerk before I would have left me too. So there are also days I’m thankful for this new perspective I’ve been given. I just sometimes wish I had this perspective without having to have had the strokes/live with these symptoms.

    I think I’ve quoted this before: “If you’re honest about who you are, you’ll help that person (reading / watching) be less lonely in their world because that person will recognize him or herself in you, and that will give them hope.” – Charlie Kaufman

    Amy, thank you again for sharing sister – John

  6. Your therapist pushed you to stop therapy? That’s awful.

  7. I have erased the word BETTER from my vocabulary. Because everyone and I mean EVERYONE uses it ALL the time and it really means nothing. I have improved and I will continue to improve as will most Stroke Survivors. The word BETTER brings to mind “Back to NORMAL” or they way we were and we may never be the way we were or even close to it. And the sooner we (and others) accept that the sooner we will be able to find some sort of joy in life. Some kind of acceptance in life and learn that what we have is better that what we had right after the Stroke. So Erase the word BETTER. Replace the word BETTER….

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