Nothing Minor...

Four weeks ago, on my second or third morning in the hospital, I was finally told about my condition. The doctors weren’t keen on telling me due to the added stress issue involved, but I had asked to be released. It seemed that all that I did there was take an endless amount of pills, get my vitals checked and have two or three IV’s. I figured I could take the pills at home and do my IV medication on an outpatient basis. It didn’t matter to me that I was still vomiting and having extreme spasms of hiccups, or the fact I could not even stand, I just wanted to be home. Being in a hospital meant I was ill, it meant something was wrong and all I had been told was that the MRI showed “something, about a centimeter” in my brain and I was there for observation. After a couple of days, I was ready for the comforts of home. The doctor and all the interns stood around in a scene right out of “Grey’s Anatomy” and while they would all discuss my case in front of me, something I found both interesting and off-putting, I would try and figure out who was the Christina, the Meredith, the Karev and so on. Sorry to say, there wasn’t a McDreamy or McSteamy in my mix of doctors. But on that second or third morning, I suggested to the doctor and his team that I wasn’t doing much in the hospital and my home was just a short drive away. I flashed my best smile and suggested an outpatient solution that I felt would be a win-win and I could put this whole stroke thing behind me and go have some lunch at the Seacliff.


That was when the doctor explained the situation. He started by saying they never like to explain the situation to patients early on for the obvious reasons of stress - stress is the last thing someone needs after a stroke - but he stood at the right foot of my bed at a little past nine in the morning and told me that a part of my brain was dead. Gone. Never coming back. He talked slow and calm and I kept the happy-yet-inquisitive look on my face as he explained to me for the first time what a stroke really meant. I had always imagined they were for old people, or out-of-shape chain smokers who ate nothing but eggs and red meat and worked high-stress jobs. It wasn’t a word for me. I was listening, but not listening. I started tuning everything out when he said part of my brain was dead. I am forty-four, healthy and now had brain damage. I could see his lips moving and I could hear him talking but I could not digest what was being said. It was all so surreal. There I was with an IV in my arm, the very IV, the doctor pointed out that was currently giving me fluids to handle the brain swelling. My brain was swollen. The words “dead” and “swollen” echoed in my head. They couldn’t be talking about me, but they were. Suddenly I felt my desire to go home and my happily optimistic face melt away. I felt myself shut down. I wanted to cry, scream and make a big scene, but due to a combination of shock, pride and my bodies inability to do those things at that moment, I stayed calm. The good news, I was told, was that is was minor. I could expect a full recovery at some point in the future as the rest of my brain would learn to take over the functions that I had lost. They used words like “young” and “resilient” but I just felt dead and swollen. And terrified. At that time, I only knew about problems with my vision, vomiting and the inability to walk. The rest of the “under repair” list would keep presenting itself, and even four weeks later, I am still discovering new things that aren’t working properly or at all.


What made me happy was that is was a minor stroke, which, in my mind meant a week or two and I would be back to my old self. Since then, I have discovered something very different, something I think many people don’t realize. I certainly never did. A minor stroke is one that basically doesn’t do “too much damage to the brain” and usually means a “complete recovery”. But I think outside doctors’ offices and walls of hospitals, there is no such thing as a “minor” stroke. While I am aware of how bad it could have been and am grateful for what I was left with, I can say this has been a pretty major deal for me and those around me. More to the point, it has fucked up my life.  Early on, I was unable to walk, unable to stand, urinating in jugs, vomiting anything and everything I ate and drank, and after choking on the vomit, I would manage to get it out and into buckets. It was scariest in those rare times I would finally doze off, and then suddenly wake up with a clogged throat, unable to breathe – those are just a few of the highlights of how I was spending my days.


“Expect a full recovery” is what they said. What I heard was “Give it a week or two.” The reality is so far removed from what was in my head. Ulco and I were supposed to go to Cape Town for New Years. I really, honestly thought that if I could just stop throwing up and spend a couple of days of thinking positive and doing my exercises, I would still make the trip. I knew I wouldn’t climb Table Mountain, but I could certainly lie on a beach. We were supposed to leave on a Thursday and I let that idea go on until Wednesday night. It was Wednesday the 28^th of December when I started to realize how massive this situation was, but I still had no idea the impact it was going to have on my life. The road has so far been long, windy, hilly, bumpy and there are some washed out bridges and lots of detours. My sisters and I used to joke about our parents, how they “walked six miles to school… barefoot… in the snow… uphill… each way…” well, that is what recovery is like so much of the time.


I have come to hate the word “minor” in front of stroke. Sometimes people, and I am sure I would be one of them if not sitting on this side of the fence, adopt the attitude, “It was just minor, get on with it, already!” That is actually what I thought that first couple of days in the hospital. Even as they tried to get the swelling in my brain under control, I stayed believing it was “1-2-3-Recovery!”


I now believe that every stroke is major- maybe not according to the medical definition, but to the people that actually go through them either as the patient or caregiver. I am sure someone who has had a “minor” heart attack or whose house got flattened by a “minor” tornado see those as pretty major, if not massive events. Yes, those of us who have had “minor” versions of issues are well aware that things could have been much worse and we are thankful for being spared the things we have. But I will never recover 100%. I don’t think anyone does. I am confident I will completely recover physically. As it looks now, I will be walking normally in the next week or two. My vision is getting better day-by-day. I feel the uncomfortable tickles and itches as my nerves on my left side seem to be sorting themselves out.


But I will never forget that night. And I know I am more at risk now than I was before. Every headache is suspicious. Every weird thing that my vision does makes me wonder if something else is happening. Every time I forget a name or word while I am writing or if I feel too tired for no apparent reason, I am curious if something sinister is causing it. When I start walking sideways and bumping into walls after hours of walking straight and near-normal, I fear it is happening again. When I wake up choking in the middle of the night, I panic. And I will remember every time I take an aspirin, something I must do every day for the rest of my life.


I have lived my life knowing that nothing is guaranteed. It is a cliché that “you could be hit by a car and die tomorrow.” But the reality is, that happens to thousands of people every day. As do strokes. Millions of people have them every year, and approximately one out of three is fatal. In fact they are the leading cause of adult disability in the United States and Europe and the second leading cause of death worldwide. Many are preventable. Mine, seems not to have been. As far as we can tell, a tiny blood clot, perhaps from a small wound from that thing I stepped on at the beach a week before, made its way into my circulatory system and passed through everywhere just fine, until it entered one of the tiniest vessels in the brain and got stuck. There is nothing that could have been done to stop it. But the oversensitivity or borderline paranoia are there, all day. And I have a feeling they are not going anywhere.


I don’t feel there is anything minor about a stroke at all.