Courage

I debated about whether I should write about my stroke or not. It wasn’t an easy decision, as writing about it would mean to let people into a very personal situation that was and is still unfolding. I don’t mind people being on the periphery of my private life, but I am quite choosy about who gets full access. When I decided to write about it, I did it for a few reasons. One of them was to record for myself what was happening, what I was feeling and going through, so I would not forget the details and the emotions. I discovered early on that my short-term recall isn’t so good. The memories are there, but my brain has other priorities at this moment, like repairing itself and making sure I can stand, and so I don’t always remember things so clear after the fact. I am sure that when my brain is done rewiring and fixing itself, that issue will go away. I also decided to use my blog as a way to keep family and friends in the loop. With my vision, it is not so easy to write at the moment, so I opted for this medium instead of dozens of emails to various people.

Another reason was that I felt isolated and alone. As far as I know, I do not directly know anyone who has had a stroke, and so I had nobody to talk to or ask questions to that would have inside knowledge. Doctors, friends and family have been great, but sometimes you want someone to say “I know exactly what you mean, I had the same thing and when this would happen, I would do that.” I also knew I could not pour out my feelings all day everyday on anyone who happened to be around me and I certainly could not keep them inside. So this blog became sort of my external brain, it is where I think and ponder and examine my thoughts and things going on at the moment. Lastly, I decided to write it in case anyone should find themselves in a situation and feel the things I feel and felt and will feel, hoping that maybe they would stumble across my blog and see something familiar and useful.

When I decided to write about my situation, I made only one commitment to myself, and that was to be honest, even if it meant being uncomfortable or embarrassing and I believe I have done that. If you have been following my rollercoaster the past five weeks, you know there have been highs and lows, breakthroughs and set-backs.

So, I was quite surprised to read a comment on my post Saturday that basically told me that I was a grown man and that whining and complaining would not do me any good and “I don't like people feeling sorry for themselves or feeling unable to give a fight they owe to themselves.” I kept reading it and going over the events of the last few weeks, and then I got angry and then I started wondering if indeed, that is what I was doing. I also checked in with people that I know would tell me if that were the case and I did a lot of thinking.

Then I realized, no, I am not feeling sorry for myself. Like anyone who has been through a major, life-changing experience, there are emotions and psychological processes which we must go through to deal with the specific situation and ignoring the negative parts is not only cheating oneself of the true recovery process, it is denying a part of ourselves that makes us human. _­

There is a quote I love from Ambrose Redmoon which reads “Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” In order to be courageous, I believe we need to acknowledge the fear, see it for what it is and then make the decision about how to deal with it. For me, this is the same principal as being positive. Being positive is not about the absence of sadness, depression, anger, (insert negative feeling here), but what we do when faced and confronted with those emotions, which, like fear, can often be so overpowering as to be paralytic. I know there are many people who believe you should just ignore them and pretend they aren’t there, sing a happy song, put a smile on your face and bury them, hoping they will just go away. But I have learned from experience, that when left un-dealt with and buried, negative emotions fester and boil and become even more toxic. And they don’t stay buried forever. Sooner or later, they come back up, and the longer they have been pushed aside and buried, the more destruction they seem to do when they are finally free.

Winston Churchill said “Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.” I think listening to our negative emotions can be the scariest thing of all. I don’t know about you, but mine can be pretty dark and ugly. But I have come to see negative emotions in the same way I see annoying and obnoxious family members. They are out there and sometimes, no matter how many times you move or how hard you try to hide, ultimately, they will find you out and come banging on the door. I don’t particularly want them, but I let them in, we hang out for a while and I listen to them and then I get them to leave. I have learned that by doing that, the emotions don’t build, and if and when they do come back, they have less power. I have also realized that some of the biggest and most profound lessons are buried not in the positive, but in the negative. I see the emotions for what they are, I look at them, acknowledge them, I hear them and respect them for the role they play and then make my decision about what I will do. Do I always make the right one? Nope. But then again, I am only human, prone to make mistakes.

I think it is good to feel sad, depressed, angry (insert negative emotion of choice here) for a bit of time and see it for what it is. Feeling them for a short time, or perhaps longer time if needed, does not make us negative or people that feel sorry for ourselves, it makes us human. It is only when we let those emotions take over and make our decisions for us and control our lives, that we have a problem.

So I will continue to feel and be honest about my negative emotions but be driven by my positive ones. In fact, just today, I woke up feeling great but a little off. I had my breakfast and then looked at the list of exercises I needed to do and decided I didn’t want to do them, I wanted to sit on the sofa and put my feet up and cruise around Facebook. So I made a deal with myself. I sat on the sofa for fifteen minutes, then I did my workout, and then… And then, I went walking for three kilometers, the longest walk yet! And the best part, I ran into Khaleeda, who always puts a smile on my face and we had a yummy lunch! All in all, it has been a great day. And here is one last quote about courage:

“Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” - Mary Anne Radmacher

The Beach...

Before I wrote the blog yesterday, Ulco and I made plans to go to the beach, but an unexpected confrontation with my new body threw a wrench in my mood and I felt angry and confused. I decided I wouldn’t go to the beach and instead I started writing the blog from yesterday. Shortly after I posted, Ulco came into the room as he was getting ready to go.

“Do you want the orange or blue towel?” he asked.

“I don’t care.”

“Do you want to take your Kindle?”

“No.”

“Do you want to go?”

“No, but I will.”

At that moment, I didn’t want to go, but I did and after ten minutes in the car, my mood started to lift. I knew it would. Mood swings are terrible in that they come on so unexpected, triggered by things both bog and small. I always know they are going to pass, but when in the middle of one, it is like being in the middle of a tornado and I just hold on and wait for it to pass.

The day at the beach was fantastic. I went in a pool for the first time since the stroke, and it was odd feeling the wet cold on one side of my body, but not on the other… It was also weird walking on hot sand what was felt only by one foot. Having a numb side does have its advantages, such as I no longer have to run across hot sand. I have a foot that doesn't care how hot the sand is.

Today

I am not sure what I am feeling today. Anger? Depression? Disgust? I really don’t know. I just know that I am tired. I am tired of all of this. In the beginning it was at least interesting. I was almost a game of what I could and couldn’t do, what worked and what didn’t. Now I am just bored and sick of all of this. Thursday morning I felt great. I was walking good and even managed to so a bit of admin work. Yesterday I was back to extreme double vision, walking into walls and spinning rooms. I spent most of yesterday sleeping. Partly because I was sleepy, but mainly, I just didn’t want to be here, in this body, in this situation. Today I still  don’t, but am trying to force myself to do something.

I tried to force my left arm to feel something. I was in the bathroom to shave, with an electric shaver, of course, and I grabbed the sink with both hands. In my right, I felt the cold porcelain, and with my left, it felt warm. I kept moving my hand to different parts, telling it that it was cold, but nothing happened. I had the same situation in the shower with the warm water. I just want to feel a little difference, but nothing. I even help my hand over the toaster the other day to see if that would register something, but nothing. I just want things to be back to normal.

I want to stand up without having to think it through first, without having to concentrate on my balance. I want to walk without grabbing walls and chairs. I am tired of typing with one eye closed while hitting all the wrong keys. It is as though the keys move around while I type.

I am tired of mood swings and all this doubt and uncertainty. I am tired of this body I don’t understand. I want to feel like I used to. I want to be normal and me again. 

Sorry for whining and complaining...

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.