As I approach my third year anniversary of surviving a catastrophic brain stem stroke, I reflect on the hardest things about my journey as it relates to me and other survivors I have spoken with over the years.
You might think the most difficult times were hearing that last rites were offered to be given to you and that you couldn't breathe on your own. No that wasn't the most difficult. Reflecting on your compromised abilities to see and talk. No that wasn't the most difficult. Discovering that you couldn't stand or walk, swallow or eat for six weeks, no that wasn't the most difficult thing. Losing your job, family, friends or financial capabilities? No these weren't the most difficult either.
From my experience and that I hear from others, these things are very difficult but surprisingly enough, not the most difficult.
Being by yourself, doing things for yourself, depression, living in a world without compassionate people that don't understand what it's like in our heads and accepting life the way it is day to day has been revealing itself as most difficult for me and many other survivors I speak with.
Unless you have experienced an acquired brain injury (ABI) you will likely never know. I would not recommend continuing any lifestyle habits that promote ABI.
It would be a wonderful world if survivors had a guide (so to speak, even a dog at a basic level) to aid them day to day, but who can afford that at this stage of life when we can barely afford to support ourselves?
Even the most motivated of us survivors find ourselves in a fog and do things but we are not clear enough or knowledgeable enough to guide ourselves past our gains, this is where a guide could introduce new goals for us.
Maybe my future holds full recovery and I can find a way to guide or bring guidance to other motivated survivors on their journey?
As a survivor, I realize how hard life is day to day and that we don't have the choice to take a break from our stroke...I also realize how hard it is for others to be around us for any duration of time. I do believe that if one can get a break from stroke and the disability it's important to take it, I know we survivors DEFINITELY would!
We need people to understand that we want to quit the stroke, but, we require them to have more patience than us...they can and should take a break but that doesn't mean shutting it off or quitting it and us all together.
Many successful survivors I have met or read about have a common thread, they had someone there for them on a daily basis for years, not days, weeks or months, but years...it takes years for recovery, we didn't just break a bone or something we broke our brain.
I haven't met anyone who has had to do things completely on their own and although not impossible I don't recommend it.
If daily guidance can be obtained, I truly believe that the other things like depression and acceptance of ourselves will be better served.
Now that I have passed my third anniversary of surviving a catastrophic stroke and after hearing from some non stroke survivors like my estranged wife and like I've seen in the actions of a few others, they are tired of hearing about my stroke or stroke stuff in general.
I guess its time for me to put the stroke behind me regardless of ailments that remind me daily that I'm still recovering, like everyday when I wake and stagger to the washroom, not being able to wash my feet standing in the shower or put my socks on with ease or constant issues with vision, balance and feelings of maladroitness.
Initially, I promised myself and then yesterday, I promised my daughter that unless I was asked specifically about stroke related things that I would not mention it again.
Although my recovery journey continues and has progressed over the years this will be my last post for a while, until something stroke relevant is worthy of posting or unless someone asks a question of me.
I wish everyone a positive, determined journey and hopefully we can all fully regain our functions of the past. It is possible, I discovered ONE person who has fully recovered, it took her eight years...Dr. Jill Taylor, thank you for the hope and guidance. I'm off to the elliptical machine! Heart rate training and naps seem most beneficial.
