My Brain AVM Story: Forgetting May 29

brain avmThe anniversary of my brain AVM surgery swept right past me this year.

It’s not that I go out of my way to make a big deal out of it each year. But I generally remember, on May 29, “Today’s the day when I had my brain AVM Surgery, the day when everything changed.”  My stroke happened a few days after my brain AVM surgery, but all that time is such a haze that I tend to think of Brain AVM Surgery Day as Stroke Day.

But I didn’t think of it at all this year.

What does Forgetting the Anniversary of my Brain AVM Surgery Mean?

I was busy. I’m working in my “hired nerd” job now, doing tech support. I’m writing for Ollibean, as well as doing my personal writing. On the 29th I just would have started another writing/editing/content management job for another website. Considering that I’m doing well if my socks match on any given day, it’s a lot to keep track of.

Maybe the significance of Brain AVM Surgery Day in the greater scheme of my life is just fading. Maybe my sense of who I am as a disabled person gives that day less and less power as the years go by. Maybe Brain AVM Surgery day will eventually just mark the day I made, in my mind, the quiet transition from “pre-stroke Sarah” to “post-stroke Sarah”…that I moved from the Sarah that I was when my arm and leg worked and I didn’t have to take medication for seizures to the Sarah that I am now that my arm and leg don’t work so well and I have to take a whack of pills every day (See Geneen Roth’s book “Appetites” for some writing on this idea that pulled me through some rough times).

I don’t think much about my arm and leg anymore and how much “better” they’ll get, or if they will get any better.  I don’t do physiotherapy or occupational therapy and haven’t for years. It’s not that I don’t think, from time to time, things like, “This would really be easier with two hands,” or “I need someone with two hands to help me with this,” but I either figure out a way to do what I need to or, or I call someone for help, or I wait until there’s someone around to help me.

It is what it is.

Conflict

But it’s becoming my own little pull between “acceptance” vs “cure”, because I’m slowly discovering that not keeping up with some kind of treatment regimen for the hand and leg, even if it has absolutely no effect on return of function, is having potentially having effects on my health in other ways. I wrote late in 2012 about how significant contracture in the muscles of my calf in my weak leg had brought on a suggestion from a doctor that I wear a brace for a few hours a day. Now it’s been suggested that I go see an osteopath about the contracture in my left hand, which I’ve learned from being a group on Facebook that some people treat with measures as drastic as Botox injections to relax muscles. I even had a doctor suggest to me once that I consider having tendons (or perhaps it was ligaments, I can’t remember) cut, but my neurosurgeon did not seem in support of that.

It’s been 13 years since Brain AVM Surgery Day and I feel like I’m taking tentative steps into a new phase of my life. I’m not sure where all this new information fits in when I’d basically thought I was happy enough as a disabled person to continue with things as they were…perhaps even happy enough to stop the hyper-vigilent watch for that day in May every year when everything changed.

Nothing ever fits neatly, it seems. But perhaps that’s just the nature of life.

I’m trying to stay open to the possibilities and to stay grateful for what I’ve been given. Which includes you, readers. Thank you for coming along with me on this journey.

 

  • Dennis Harless

    Sarah,

    I think its a battle everyone fights. When do you stop trying to recover and start just adapting to the disability? Its been 2 years since my stroke and I am still working at PT and other types of therapy to try to recover more function. Iv’e made a lot of progress but am nowhere near what I once was.All my jobs I had trained for required a fully functioning mind and body. ( I was in the military, inspected houses for damage and was a shipyard worker).

    My goal is to recover where I can do most the daily activities people do (walking shopping etc). Its still in the back of my mind I may need to get a power chair, but I’m not ready to do that yet. If it gets to that point I just want to do it with peace and dignity.

    • Yeah…I keep thinking that even after all these years, if I’d just worked harder at it…if I worked harder now…maybe I’d get more back…it’d make life a bit easier, that’s for sure..or

      I don’t know whether looking at recovery as goals for functioning versus goals for recovery (if that makes sense) is the way to go, or whether is should be the other way around. I was always told that there were never any guarantees on how much function I’d recover, and once I moved home it was much harder to see an occupational therapist on a regular basis…so I think I focused on learning how to live one-handed over gaining function in my weak hand without even really thinking about it. Was that the way to go? I guess I’ll never know. But I live by myself with very little support, and sometimes people don’t even notice that I’ve got a weak arm until someone points it out to them.

      Living with peace and dignity, whatever point of recovery you’re at, should be the ultimate goal – and our primary right as disabled people. That’s the other piece of all this, one of the ones that really prompted me to start writing this blog.

      • Dennis Harless

        Stroke Survivors really get shortchanged on therapy in my opinion. It seems to me as soon as I was out of danger, able to get transferred into a wheelchair and do heavily assisted Basic daily activities they were wanting to get me out of the Acute rehab center. I dug my heels in and got an additional three weeks. I think it helped me out immensely. Once I got home it was pretty much on my own for a month, until I got the inpatient therapists to come visit. I went from having three 1 hour sessions a day with state of the art equipment to having 4 one hour sessions a week using just household structures, my walker, cane, etc as tools. After doing this for 2 months I was accepted into an outpatient Therapy Clinic, This has better facilities of course but after 40 sessions each of PT and OT ( which was double what most people get) My primary health provider refused to extend my sessions. I was still making progress, My therapists saw I was still gaining. Somehow “the system” made a call that any more recovery would have to be on my own, and I should be happy with the results I had already. There is a time when a person should be able to make the choice between continuing therapy and just adapting to limitations. Its bull-crap that the decision is made by health insurance companies.

  • Grace Carpenter

    Congratulations on forgetting!

    I admire you so much.

  • Amy Shissler

    Good for you for forgetting it! That’s good to know.

    • You’d think that I’d feel more positive about it, huh? lol…

      Thanks. 🙂

  • I’ve been away traveling for awhile Sarah and have missed some of your posts. That is sad, because I really enjoy reading what you write. In a way, what you wrote hits home for me right now. A few years ago, I witnessed a tragic accident (my current post, Three Seconds-A Roof Climbing Job Ends In Tragedy) and every year on that date, all I could think about was “the accident.” Last year, I didn’t remember the incident until three days later. People say time heals, things get easier. That may or may not be true for all, but it has been for me. Also, when Lindsey was first diagnosed as mildly mentally challenged, I was searching and searching for cures. I tried everything any doctor or good samaritan suggested–without much success. At one point, I wondered, am I trying to find a cure for me? or for her? I stepped back and worked more on acceptance. Anyway, I think it is awesome that the date passed without remembrance. Maybe that is a good thing. I hope so. Glad to be reading your posts again. Keep them coming.

  • Matt Ramsey

    Hi, my avm ruptured in 1970, in my mother’s womb; next, I stroked in 1980, while I was playing.

    Following my 15th stroke, in 1987, I required a craniotomy to be performed and, following that, everything was much more difficult for me.

    Physically, I was alright, following one year of physical therapy; however, cognitively, I was running at less-than full capacity.

    Then, in 2003, I was turned to the use of voice recognition software and I used it, successfully, to conquer a Master’s degree program, while working 39-42 hours per week.

    Please contact me, on Facebook, at: http://www.facebook.com/mattramzzz1971, or via e-mail, at: mattramzzz@comcast.net.

    Sincerely,

    Matt Ramsey, M.Ed.

    • Hi Matt.Thanks for telling your story! Great to hear that you’re doing so well. Thanks for reading…

      • Matt Ramsey

        I know exactly how I restrengthened my cognition and want to share it.

        Also, recently, I’ve been let know about individuals who have been able to reestablish the motor control neuron passages that allow them to do everything they ever could do, pre-stroke, using wearable robotics.

        Please research that technology.

      • Matt Ramsey

        I replied, a few seconds ago, that I met people online who have had success in rehabbing, through use of wearable robotics. Have you heard of this?