I was just checking my e-mail and I received a message from the National Stroke Association (or something) and it was a collection of recent posts to their site. This is totally fine, it’s why we subscribe to sites and whatnot, right? To receive notifications and alerts for things that might interest us? Naturally, I scanned through it, I rarely read any of it. I’m not interested in reading about other people’s accounts of their stroke. It’s why I don’t have a blog roll – I don’t follow too many people with stroke blogs. It’s also why I don’t expect to ever gain too many followers; if I have little interest in reading other people’s crap, why would they read mine? There was a heading about some woman’s fight to ‘defeat stroke’ and I became instantly upset. I couldn’t even read the post after reading the sub-summary or whatever you choose to call that little paragraph beneath the headline.
I understand that not all strokes cause severe damage. I understand that not all disabilities caused by stroke are severe or even visible. I think I’ve gained enough issues from my own stroke to know there are more areas of our bodies and minds that can be affected by stroke even though it wasn’t “touched” by the stroke directly. Maybe my residuals aren’t strong enough to be labelled disabling but they are there nonetheless and I recognize that for others the same residuals could be excruciatingly debilitating. I love that there are more ways to spread awareness now; to inform people that not all strokes happen when you’re elderly or addicted to dope and on a party bus that never stops to rest, it’s completely and totally awesome. What I don’t appreciate is the survivors chosen to be the “faces of stroke” and this stupid e-mail reminded me of how irritated I am by this.
Earlier this year Dr. Oz did an episode called Faces of Stroke or something along those lines. When the episode opens they are briefing us on the guests that have suffered strokes. One lady explains quickly that she can no longer read or write. They show an example of a badly written word I cannot make out. These are things the public needs to be aware of; these are things we as survivors lose as functioning people and hopefully things we gain back after hard work and determination. Sometimes it takes a very long time, sometimes years or decades; sometimes it only takes weeks or even just days. The problem isn’t that these women survived and overcame the barriers created by their stroke or that their hard work paid off or even that they all were lucky enough to have resources to help them recover with professional help. The problem is that they didn’t show the people who haven’t overcome their disabilities. They didn’t show the people still surviving their strokes, still finding their way through the muck and battling their way through the gauntlet that is both mentally and physically taxing.
I understand that there are a large number of survivors that are too overwhelmed by their disability and/or anxiety to even think about accepting an invitation to be a guest on a show like Dr. Oz but there are survivors that would be more than happy to show their disabilities that don’t seem to want to let them go and how they still manage to get through every day regardless. There are people who survived a stroke and walked away with facial (Bell’s) palsy or aphasia (one is a visible disability, one is not) and they still function like “regular” people. They don’t let it stop them. Those are the real faces of stroke. If I never overcome my hemiparesis near entirely, I don’t intend to let it stop me forever. Right now I’m at a standstill, locked between confusion and determination to achieve a better quality of life. I don’t know where to turn but hopefully I will find my way and I could end up a guest on a Faces of Stroke episode on some screen somewhere showing people what stroke really looks like and with a difficult story of how I found myself to be my version of recovered after years of work.
It’s not fair to show these survivors as examples to people who may one day become stroke survivors as well. They may look back at these examples from their wheelchair years after their stroke and only see the reflection of a failure. Setting up survivors with near complete recovery as examples of who stroke can affect can be detrimental to a new stroke survivors recovery. We already have enough people around us telling us we not only could but should be doing more to “help [ourselves].” We already know that we could try harder but it’s damn tiring so it’s literally easier said than done; especially when the person said-ing (lol) isn’t the one surviving. We don’t need false hope, or high-pitched, falsely empathetic voices ringing in our ears and shining in our eyes. As much as I hated hearing it, I was glad my doctors were assholes in that they didn’t tell me I will get better, that I will walk out of rehab on my own or that soon this will be like it never happened. No; my doctors told me it was all up to me and there were no examples to hold me back with the feeling that I’ll never get where “they” are. That all happened after I joined my first support group. After that, I spiraled downhill quickly. I felt like, after a year of the disabilities and working hard to “get back” with my results dull and bleak compared to those that really did walk out of rehab on their own after just a week, there was no way I could be one of “those” survivors. I’m still amazed no one has found my body cold next to a suicide note by now. I’m happy people can survive quickly and easily with little work. It proves how complex our brains are as well as how unique each and every one of them are. You and I, dear reader, can have the same exact bleeds but with different results. It’s just how it works. It sucks, but that’s how it is and I have to constantly remind myself on a near daily basis that
My bleed was different
These people used to exemplify stroke survivors as a whole don’t help prove that to other survivors; it doesn’t remind us what we absolutely need to be reminded of, that our strokes are all unique and we will recover differently.
Sure we need to alert people,
Hey, being 22 and never drinking ever doesn’t exempt you from stroke.
But must we do it in a way that doesn’t inform people
Hey, if you have a stroke and are left with severe disabilities, it doesn’t have to stop you from being a ‘normal’ person.
Or what about telling them
You may not recovery entirely or to a level you would be more comfortable with but it doesn’t mean you lost or are worthless.
I didn’t read that article sent to my e-mail so I know I shouldn’t comment about it because it would all be speculation based on a picture of a woman’s smiling face but it didn’t stop the title from driving me to post on my blog about my irritation with this system set up only for “winners” and not for those of us still struggling to accept the things we may not “win” back. The woman looked “normal” with her even smile and even eyes and her strong words (according to the summary) about how her stroke will not stop her. It reminded me of this woman I met in a survivors group that was upset that her stroke ended her career as a dancer yet within a short period of time (I can’t remember how long she said) she could dance again and attended a dinner with her husband in heels and even bought a two story house after having a baby she could carry on her own (I still can’t use stairs and couldn’t hold my son unless I was sitting down). I can’t even wear sneakers without a brace and I had to toss out my favorite flip-flops (sniffle, sniffle) because if I ever get to wear them again they will most surely be too old. I feel like, what right does she have to complain? But again, because I am a new person post-stroke, right? I have to remind myself that our bleeds are different and therefore affects the many areas of our lives differently. How we interpret and respond to these changes are up to us so how could I judge her? Maybe I tried to “put her in her place” with a little perspective, like mentioning the flip-flop thing but it won’t stop her from feeling like all is lost. Dancing professionally probably made her feel complete as much as being an independent individual that could move a couch on her own without breaking a sweat had made me feel complete. Now it takes me 10 minutes of struggle and immense sweating that results in me calling my husband to just move the damn thing for me. It takes a lot away from you and it’s hard to accept whether it’s not dancing professionally or wearing flip-flops or writing your name legibly, it hurts all the same.
I just feel that we need to inform people that not all recoveries go perfectly or close enough to perfect; not all disabilities can be seen but hiding those that have visible disabilities and only showing those that don’t,really leave little room for “normalizing” those of us that are different. We want to be seen too, we want to be used as positive examples instead of worse case scenarios. We want to prove, through our disabilities, that we are survivors just as much as the pretty face you chose for your show and that we can still function in society and that just because we don’t have the ideal recovery it doesn’t mean we lost.