The life-changing effects of surviving
My experience with surviving this messy, sometimes awful, yet very purposeful, stroke is very different than yours.
I’m talking to you: the doctors, the friends, the family members, the passersby, who ultimately think that I’m better. That I am recovered.
I look normal. I ‘act’ normal. Right?
The simple definition of recovery is a return to a normal state of health, mind, or strength.
I suffered a multitude of set-backs from my stroke. From non-fluent aphasia, agraphia, emotional regulation disorder, impaired cognitive functions, sensory integration disorder to right-sided hemiparesis. I have spent the better part of the last year and a half working on my recovery.
But I’m not there yet.
If you will humour me, I'd like to open up your mind about what recovery can, and should, look like for everyone.
YOU’RE ALIVE
Only the survivor can say if that’s enough, to just be alive.
The onus falls completely on me, as the survivor to get up the spunk, the strength, to fight for my recovery each day.
I, personally, am a shameless self-advocate for me.
I have created an arsenal of therapists, doctors and a village of people who not only get it, but want for me to go thru this process of redefining myself and come out better from it.
It is up to you if you want to join the team, or not.
I talk about my stroke. I support others in their fight to get better. I disagree with anyone who puts a label on recovery. Recovery is personal. Recovery should detail explicitly your wants, needs and wishes.
Recovery doesn’t just mean that you are alive. Unless it does.
We, as survivors, have been given a fluke shot at defining what our 2.0 looks like. We reserve the right to figure that out by combing thru all the pieces of shattered glass, picking some up and tossing others aside. We also reserve the right to change our minds. As many times as necessary.
To the doctors and therapists who take one look at me, and especially the not-so-wise doctor who said; You can walk. You can talk. You should be happy; it is not, respectfully, up to you.
YOU’RE RECOVERED
I get it.
It’s too hard to follow along with this recovery nonsense unless it affects you. Of course I get that it's easier to greet me on the street with a casual ‘Hi! How are you?’, instead of ‘Hey, how’s your recovery going?’.
I not only get it, I ask myself how I would treat someone in my position?
I’ll never forget the first time I saw Johan’s friend, after she suffered the loss of her husband.
It was at a birthday party for a mutual friend, and there she stood, surrounded by her close girl friends. I waltzed up and asked her how it was going. To this day, her reply still haunts me.
She said, “My husband just died. How do you think I’m doing?” As I slunk off with shame, I vowed to never make that mistake again.
You see, I wasn’t unaware of her situation. I wasn’t being whimsical. In my mind and my heart, I wanted her to know that if there was anything I could do to relieve her suffering, I would most certainly do it. She just needed to say the word!
However, that probably didn’t show by my casual, flippant question.
I was talking about this with my husband, Johan. He said that it’s hard on him, as well. Right after my stroke, he had a deluge of supporters sending him their thoughts and messages of love and strength. A year and a half later, unless you have gone thru something similar, you might think he is, or I am, ok.
I think that as long as you show up, you can never be faulted. I've been on both sides. It’s tricky to get it right.
As long as you act with integrity, don’t say hurtful things, you’re doing all right.
YOU’RE BEYOND RECOVERED
Let’s walk the path, my path, of what it means to be beyond recovered.
Very recently, a neurosurgeon said that my ‘speech ability had improved considerably and daily conversation has been realised.’
What he did not see is that I have mastered the art of compensatory strategies. For instance, to buy time, I clear my throat when I can't find the correct word. I quickly ask questions, to force my companion to talk. I have memorised a few words that work in many situations.
What that neurosurgeon also didn’t see was when my stress levels go up, or when I am tired, my ability to communicate plummets.
Can he rightfully say that about my abilities?
When I sit down to write a blog, an email or even just a simple text message, what you don’t see is my word finding ability is low, my spelling is horrendous and my fingers have their own misguided, birdbrained will.
All of this after I have spent over 1’000 hours in speech & language therapy. Oh. My. God.
So, yes, my daily speech ability has improved considerably. But, no, I vehemently disagree that daily conversation has been realised. I am just a smart cookie who has mastered the art of faking it until I make it.
When I am beyond recovered, I would like to think that it takes me a few hours to write a blog, instead of the whopping 20 hours that it took me to write my very first post, post-stroke. And that I can write it all by myself.
When I consider myself beyond recovered, then stammering in mid-conversation is simply because there are so many words coming to my mind and I want to choose the perfect one.
The other day I was cycling home with the Squidge, my youngest daughter, and she asked me what E.S.P. means. As she is very into acronyms, I knew exactly what she wanted me to say, ‘extrasensory perception’.
However, I could not, for the life of me, think of it. My stress levels were on the rise because I knew that I knew it, somewhere in the deepest levels of my brain. It just wouldn’t surface.
So I said, “I cannot think of the words, but I know the meaning. It means when you can see the future”.
She thought for a brief second and replied “But, when doesn’t start with an E!”
And around and around we went, with me explaining myself and the Squidge not getting it.
I could feel the tension rising in me. This would have been the point where I lost it a few short months ago. Due to my diligent work on my emotional regulation disorder, I was able to control my emotions from getting the better of me. It was damn hard. The fact is that I still tend to fly off the handle at stupid things, things that are within my control.
With my disciplined practice of gratitude, I hope that these instances become fewer and fewer.
For me, beyond recovered means that days go by without me thinking about my stroke. Instead of having to hold the handrail, I can bounce down the steps lickety-split or that I can finally feel the loose change or the keys when they are in my right pocket.
Beyond recovered means that I am more fluid in my thinking, that I don’t see everything in black or white, and that I can easily refocus my attention when I’m interrupted.
We survivors are culpable for defining what recovery looks like. No one else.
I understand that you see the situation differently. I’m actually glad that you do. For you, stroke recovery is not visceral. You see only what you want to see. I get that.
As a pit-bull warrior, I’m dealing with the social, the emotional and health related obstacles, for which no one is prepared, as well as the life-changing, hellish and costly effects of surviving.
I believe that we all deserve to lead the life that we want to live.