Finding your why.... a stroke survivor’s tale

When you are on the rocky road thru recovery, to say that there are stumbling blocks would be a massive understatement. 

It is not unlike hopping in your car, without a roadmap, without GPS and without any idea of where you are going.

It is not a road trip clever people would take. Am I right?

Here’s the thing, it is a journey that no one asks for. You don’t get a choice with this one, I’m afraid. You wake up and the next thing you know, here you are.

On this complicated, messy road trip, there are only a few people who actually understand why you are making this journey.

So, as survivors, we are not quite certain of how to go about this. 

Sure, there are physical therapists, occupational therapists, speech therapists and doctors trained in these areas, but what about your soul?

Who can mend that?

After a life-changing event, who helps you to rediscover your why?

When I’m circling the hopeless drains of despair, when I have a fight with my husband and I‘m left feeling miserable and pathetic, for instance, here are the things that pick me up one more time than I fall down.

I deserve to have parts that work

My foot is a great example of this. For all intents and purposes, my foot can be considered healed. I still walk with a slight limp, more so when I'm tired or on bad days, but I can walk. 

Isn’t that enough?

If you watch me more carefully, you will see that I‘m in discomfort most of the time. Due to my brain’s plasticity gone wrong, it sends the wrong signals to my foot. It‘s constantly sending the message that my big toe has to go upwards and my little toe downwards. Ouch!

While it doesn’t sound like a big deal, imagine if you walked on this for 11 months. The unbearable cramping. The misalignment of the affected side.  

So, I get up one more time. And I do the work.

I want to make my own decisions

Life after surviving a stroke, is a bit like having the body of a fully grown adult, but having the mind of a toddler. I don’t mean any disrespect to myself or my contemporaries, but depending on which areas of your brain were affected you could have significant lack of judgement or poor cognitive and emotional abilities.

Furthermore, if you cannot talk, you’re left in a pickle.

In the weeks following my stroke, it became clear that I would need 24-hour care when I was able to leave the hospital. 

After visiting what is considered Tokyo's leading rehabilitation facility, my gravest fear was to be placed there until I could walk and talk again. 

You see, the patients there were acting as if they were locked in a jail for a crime that I can only assume they did not commit. 

It was hard to see. There was no life, no joy. Just listless souls, succumbing to their environment.  

For me, someone suffering from non-fluent aphasia, paraphasia and agraphia, I was unable to formulate complete, actionable thoughts. Trying like mad, to make the pieces of the puzzle fit together and controlling all of the crazy, foreign influences surrounding me was doing my head in.

I had one friend who could get inside my head and together we laid out an action plan. After grueling hard work, we were able to persuade my key players (those who were responsible for making the decisions for me) to let me go home to rehabilitate. 

So, I get up one more time. And I do the work.

I deserve a whole life.

For me, there was a pleasant stage when I didn’t know how ‘broken’ I was. I still remember thinking that I would be able to take my children away on their spring break and the crushing realisation that I could not.

What followed was the massive struggle to fully come to grips with my deficits. And when I did, it hit me hard. 

I will always remember asking my doctors two things from my hospital bed. The first was ‘Can I still travel to Switzerland this summer?’ and the second was ‘How long until I get back to normal?’. 

I did travel to Switzerland that summer, but I had to realise that ‘normal’ is just not a thing.

You can ask that very question to your doctors, your therapists, hell, I even asked stroke survivors. Depending on their level of (dare I say) competence, you will receive a wide range of answers.

But, here’s the thing, only you can decide what that looks like for you. No one else. Not your doctor. Not your mom. Not your therapist. Only you have that power.

Somewhere along the journey, I made the decision to stop being hyper-focused on perfection and to start living out my own interpretations of what recovery means to me. 

This was a huge step for me. Even now as I’m writing this, it doesn’t seem possible. How did I, always super-critical, always focused on achieving, make this pivot?

What I found was that there are no limits placed on you or your recovery. 

I heard my doctors, neurosurgeons who saved my life, telling me that I should not expect much more development after 6 months. And after being scared to death, my thoughts changed to ‘To hell with that! I will be the only one who says it’s enough!’.

Or the doctor who said ‘You can talk. You can walk. You should be happy with it.’. To him, I screamed in my head ‘How the hell do you get off saying these brainless things to a survivor?’. (And, I might have mentally slapped him, as well!)

The only limits put on your recovery are the ones you put there yourself!

So, I get up one more time. And I do the work.

It’s ok not to know the definition of your 2.0, the finished you. I would argue, that we didn’t even know how that would look before the life-changing-event. 

So, what about your soul?

I believe that these three things help me to rediscover my why every day. It is a challenge, to say the least. 

All we can do is enjoy the journey and pick ourselves up one more time than we fall down.

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