I foolishly booked a full pelvic ultrasound exactly one year after a stroke that nearly killed me, then spent the day and night before with my head drowning in paranoia. I was convinced that I’d get another shit storm of medical drama. While I won’t know the results for a couple of weeks yet, the one thing that never entered my mind was that my wonderful husband would suffer a painful situation of his own. On his 3rd day back from a 3 week medical leave my sweet husband threw his back out and now begins a painful recovery process of his own. He’s barely walking, sometimes crawling and using my manual wheelchair in combination with a cane. He wheeled himself to the doctor and got a script for muscle relaxants and pain killers along with an education in what it’s like to be me. 

With a sudden loss of mobility, having to rely on outside help and constant pain, he ventured out into the world only to find the people in it are shitty when it comes to being faced with a wheelchair. The only people who were nice were his doctor, who squeezed him into a busy schedule and a homeless fellow who opened a door for him. Everyone else either looked  down their noses at him or tried really hard not to look at all.

The one thing I’ve never been able to explain very well is when something happens that takes away your mobility you are still you, but the world ceases to see you as human they look at you  with fear and disgust, or worse,  pity. In the 3 hours it took to get to the doctors and back, my husband had to endure something I wouldn’t wish on my worst enemy,  a loss of humanity. Thankfully ,his back should be more temporary than my paralysis 

In the mean time, I’ll be bathing less without the help I need to get into the tub for a while. 

Tomorrow marks the anniversary of my stroke. One year ago, I collapsed, boob first,  into the back end of a parked car outside my local drug store, was aided by 4 good Samaritans,while awaiting the ambulance that whisked me off to the hospital where I would spend the next 6 months of my life dealing with the aftereffects of open heart surgery to remove the tumour growing inside my right atria after a piece of it broke off and lodged itself in my brain causing the massive stroke that saved my life ,which ironically was a piece of cake compared to recovering from that stroke. 

This atrial myxoma is approximately the size and shape of my tumour

I wish I had known then what I would need to get through it all, although, as I am not entirely through it the following might be a tad incomplete. 

First and foremost, a gargantuan supply of inner strength. It’s not easy to put your feelings on the back burner and live in the moment, but that’s exactly what needs to happen while you are under hospital care. There will be many things happening around you that will anger and upset you, but focusing on your physical recovery is the only thing you should be thinking about. Anything else is going to be a distraction. Unfortunately, the longer you are hospitalized, the more likely you will be distracted. Much of your time will be spent waiting.  After a few months, you may start to create your own distractions out of sheer boredom. Make sure that they are happy distractions like games or pets and not anything to put off your mood. There will be a vast array of issues that are bound to come up. In this circumstance, even the smallest of problems can throw you off course. 

A solid support group is more necessary than you’d think. I would go as far as highly recommending a therapist from the beginning to work with, both you and your family and friends. Those around us, who care will be looking to point the finger of blame where there is no blame, or trying to find some sense where there isn’t any.  Unfortunately I never thought of that until recently. A good psychologist could have saved us all some shitty feelings. It might have been easier to let go of my apartment, my job, my mobility and my independence with some actual guidance. The better you are at asking for help, the easier it will be. Just make sure you ask the right people. 

You’d be surprised how much you’ll need something to look forward to. For me, that something was my wedding. A small, low key hospital room wedding kept me going for almost 4 months. I do recommend having little things happening on a weekly basis to put a smile on your face. Even your favourite meal or dessert, a new book to read or a visit from a good friend will go a long way toward keeping your mood a happier one. 

A strong sense of self is important in a hospital setting. For instance, I hate taking pills. Unless it was absolutely necessary, I refused most of the pills that were offered,which pissed off more than afew doctors . As an atheist, I didn’t take kindly to having the hospital Chaplin come into my room to try to get me to pray with her or to fill another seat at her weekly service. In both of the above examples, I made it crystal  clear how I felt to doctors, nurses and various hospital staff so as to save hurt feelings. I almost went so far as to make a sign for my door saying please leave all mention of religion, spirituality and god outside this room. But figured better not piss too many people off. 

The knowledge that your feelings are important is a big one that I am still working on. While it’s good to consider the feelings of others, remember this is happening to you! However you feel is fine. You are entitled to feel whatever  comes up. You’ll run the gambit from the feeling of euphoria over moving your big toe or getting some control over a muscle or standing for the first time to feeling suicidal,  literally, because it’s been a year and you still wake up in pain, every damned day, or because someone put the toilet lid down and the 30 seconds it took to close it caused you to piss your diaper that you now have to spend the next 10 to 15 minutes changing it,  or because you don’t have anyone to talk tothat understands what you’re going through. Allow yourself crying time as often as necessary. Even if that means clearing the room. It’s okay to ask people to leave the room for any reason. My go to excuse was being tired, of course I didn’t follow it up with of having to perform for you. 

They call you a patient to remind you that you need patience. Unfortunately that has long been in short supply where I’m concerned. Knowing that the people who work in hospital are still people and not superhuman and mistake free sounds easy enough, until a long hospital stay. The longer you’re in, the more there is to bitch about. Do not make the mistake of taking too much pleasure in these bitch sessions. Too much anger isn’t good for you. If you’re  like me you’ll have to remind yourself to be more patient daily. 

Keep a journal of any accomplishments and improvements  no matter how small. It’s good to pull it out when you feel exhausted or overwhelmed to understand just how far you’ve come. Be aware that whoever you tell about being able to do something new will demand to see you do it and will expect you to do it with a smile. I should have saved up the little things until they were big things. It might have softened  the expectation of improvement on a daily basis. 

Determination becomes a much more important word. However, keep in mind that just because you’re determined to do something doesn’t mean your body will agree. I was determined to walk out of the hospital, but that didn’t happen. Instead, I rolled out in a power wheelchair, and that’s okay, it doesnot mean that I’m weak , just that my body isn’t ready. I’m still determined to walk like I used to, but now know that if it never happens, I’ll survive, I won’t like it, but I’ll live. 

The ability to ask as many questions as you can , like what kind of stroke did I have?

This shows the type of stroke I had and which side of the body was affected.

 and what part of my brain/body  is affected ?is incredibly helpful, as you will have to talk to your family doctor about what happened . I can guarantee that not all questions will not be answered, but the more you learn about what to expect from your condition, the easier it will be to navigate, but make sure that you ask the right people. For example I had a lovely person recommend, as he put it, an Asian healer to help with paralysis because he had muscular issues with his hands that this fellow cured in a couple of sessions, when I called to inquire, I found out that he’s a massage therapist who cannot help because my paralysis is neurological and not muscular in nature. 

It’s imperative to understand that even after you leave the hospital, there will be questions. For example, I’ve been getting nasty headaches accompanied by a low grade fever over the past month . Since my stroke was embolic, meaning that there is a piece of benign myxoma tumour still in my brain, these headaches are worrisome to say the least. I wish I’d asked what types of things are ‘normal ‘ to expect, but I was in such a hurry to leave the hospital,  I didn’t think to ask.

If you read this because you’ve had a massive stroke of your own, I am truly sorry to have to tell you, a full recovery might happen, but it will take a long time, unfortunately it may not happen. That’s the one thing that nobody can predict. Getting your head around that will be the toughest challenge. 

Before having my stroke last year,at my core,  I identified as an unafraid, strong, independent woman.

  My strength carried me through the 6 plus months I spent being an impatient patient in hospital and for the past 6 months out in the world trying to come to terms with all of the new ways I now must interact in that same world. Then, you realize that the old identity no longer fits, you try to find the right word to describe who you are now. Being a button pushing rebel, I like to use controversial words to describe my new ailment. Words like brain damaged or crippled, because they get a rise out of people, but moreover, they are correct. I’ve been saying I’m in recovery, which, while technically true sends the wrong message. People constantly asking me if I’m feeling better, or how much longer do I think I’ll need the wheelchair, as if recovery means days or weeks as opposed to months or, in my case likely many years  I’m at the point now where I feel the need to be more honest with my language, if only so I don’t have to keep explaining that people need to get used to the wheelchair being in my picture. It’s only now that I realize that I’ve been leading people on with my own hopeful attitude towards the possibility of a full recovery, which is getting less likely by the day. Just try bringing that up with anyone who cares about me,and it becomes all anecdotes and platitudes about not losing hope. 

Hope. The word has become to mean what the word god means to me, nothing more than a waste of time. Sure it’s lovely to daydream about some distant day when I might walk and dance again, but it’s just feeding into self delusion, with no real reason to think a full recovery is even possible.  No doctor has ever even used the word probable in the same sentence as full recovery, in my case. At best I hear the word possible surrounded by air quotes and written in italics. I don’t need hope to continue trying to improve my mobility. I do the work because that’s the only thing I can do. I now have to say that I can only get as mobile as my damaged  brain will allow. What that may look like is anyone’s guess. 

Throughout this process, my strength has been sapped almost bone dry, I’ve become more fearful of the world around me and as of a couple of days ago, I am entirety dependent on my husband. I finally got the call I’d been dreading I might get. The federal government turned down my disability claim because I’ve worked one less year than they need over the past 6 years. So, now,once the last 1600 dollars of my savings has been spent on my cell service, we will be living entirely on one income!  In the past we would help each other through the rough spots, from here on, I can no longer be of financial help or physical help. What with my emotions on a bit of a narrow ledge the emotional support is hit and miss, though I do try to think of my husband’s needs at least once a day. Is it any wonder I’m searching for a new identity? 

The words that most resonate now are an honest, open,  loving  terrified and  brave woman who is disabled 

Imagine training your whole life to get to the Olympic games, only to be easily outrun by a man with the audacity to smile for the camera halfway through the race. 

Then the whole world celebrates his victory while you have to relive that 10 seconds of your life over and over again because of a well timed photo going viral. All the while, no one seems to notice the obvious advantage Usain Bolt has, clearly shown in that viral photo. Of course Usain Bolt won. It’s not because he’s so much faster, but because he’s so much taller than his opponents, giving him the advantage of a longer stride . Given the height difference, I’d say the others did miraculously well keeping up this closely. While the media marvels at how Usain Bolt never got to top gear, strolled through the race or jogged to a win, all the while ignoring physics,  my  heart goes out to Bolt’s opponents and what they must be going through. And I hope they can come to the realization that there are people like me who are working very hard to and would give anything to walk the hallway in under 5 minutes , let alone run an Olympic  race with Usain Bolt.