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. 

Ulco

I have written quite a bit about my stroke, the impacts and the things I am doing for recovery. I have written about the ups and downs, the steps forward and the emotions involved. Everyone has been so incredible and generous with words of encouragement that have really helped me get through this. There were times when I was really down and felt so alone, and then I would read a small comment or wonderful email from someone and know that while I had to do a lot of things on my own, I was not alone.

It is very easy to take something like this and make it all about me, but I would not have made it where I am in these four weeks if it had not been for Ulco. I am not even sure I would be alive. I have known Ulco for almost fifteen years and we know each other maybe better than anyone else knows us. While Ulco has always been there for me and helped me in ways I can’t begin to describe, the past weeks he has been my rock. I have leaned on him literally and figuratively. He all but carried me to the car to get me to the hospital immediately after the stroke. He navigated hospitals, nurses, doctors and medication runs. He has lifted me out of bed, put me in a wheelchair, showered and dressed me. He made my food, sorted medication when I got home and cleaned up after me when I got sick. And I know him well enough to know how difficult that must have been.

There are so many things I have feared about getting older, and although I am only forty-four, many of those things have come to pass. That fear of the feeling of being helpless, of needing someone to bathe or dress me has always scared me. I worked in a hospital many years ago and never wanted to be one of “those people”. Suddenly, I was. But never once did Ulco make me feel helpless or weak. He helped me in every way and always let me keep my dignity, even when there was almost none to keep. And never once did he complain.

Since I have been home, he has been my biggest cheerleader and often the person who takes the brunt of my anger, depression and frustration. He gets to experience the mood swings first hand, and I am certain they aren’t very fun. I know it has to be hard for him, watching everything happen and not knowing what to do or what to expect next. If our roles were reversed, I would be a nervous wreck and can only hope that I would be as kind and patient as Ulco has been. I hope for both of us that we never get the opportunity to find out.

I want to say thank you to Ulco. Thanks for being my family, my best friend, my support when I couldn’t stand, and for all the other countless ways you have been there for me not only these last weeks, but since I have known you. You saved my life and you were there with me when I was confused and scared and not even sure if I would live or not. You were with me in some of the worst moments in my life. Thank you for staying. Thank you for everything you have done and are doing. Thank you for being who you are. 

Getting Better...

There is much more to walking than simply putting one foot in front of the other and repeating the process. I realized yesterday that I have not been walking “naturally”. I was walking flat-footed, without using my heels or toes, I would just light my foot off the ground, lean a bit forward and let gravity create the need for my feet to work and then I would slam it back down on the ground. Basically, I was walking like a zombie minus the chanting “Must eat brains…” I realized this wasn’t good. I was learning to walk, but I was learning wrong and I know that learning wrong will only lead to having to unlearn and re-learn Learning to walk again once, sucks. I don’t want to have to do it again.

Today, I went back to square one. I went outside, and forced myself to tae a step by rolling my foot up onto my toes and then stepping forward, landing heel first. I almost fell over. That was a whole lot of movement in one go. I stopped, got my balance and did it again. Again, I almost fell over. It felt odd, but at the same time, familiar like a forgotten memory. It took about five or so minutes to get the rhythm down.

My balance wasn’t great, but my walking was better. A few minutes later, I realized I wasn’t using my arms. Well, I was using them, but I was holding them out as a sort of balancing tool instead of swinging them by my side. I forced my arms down and then had to manually coordinate the swing of an arm with the movement of the opposite leg. Once again, it felt both foreign and familiar. I walked a couple of rounds, all the while my mind repeating the process: “Look straight ahead… Roll left leg onto toes and lift from ground… Ignore the wind… Move right arm forward slightly, but not too fast… Don’t look down… Put left heel on ground… Don’t move head too fast… Stop forward movement of right arm and flatten foot…”

I never realized how many movements go into a single step. And then there has to be the confidence that one foot is firmly on the ground for support and balance before starting the process with the other foot. I kept the process chant going in my head, quickly realizing that any stray thought, say, about life, travel, a movie, or anything non-task specific, would immediately throw me off and I would lose my balance, feel dizzy and have to start over. Surprisingly, it didn’t take long to get the hang of it. I wanted to go faster but I forced myself to stick with the process and just perfect it. I managed to keep it up for fifty-two minutes, the longest walk yet. I did it without help and without a walking stick.

Everyday, I learn things about myself. Today, I learned I can’t take too much input at one time. Normally, I am all about sensory overload. Now, I prefer and need things to be calm and as simple as possible. This was first brought to my attention when I took a bajaj (rickshaw) to my follow-up appointment with the doctor. Looking forward in a car, I am ok, but one glance to the left or right as the scenery is speeding by, and I immediately get a feeling of dizziness and falling. Sitting in a bajaj, with open sides gave me the feeling I was falling out the entire distance to the doctor. Fortunately, it is only a few minutes away and so I kept my eyes focused forward and my thoughts occupied. I made it to the doctor and everyone, including me, was happy with the results so far.

My next experience with too much input was a little more daunting. After the doctor, I went for a much needed haircut and then Ulco and I decided to have a quick drink (non-alcoholic) at the waterfront. Before going home, we did a quick stop by a grocery store. As we walked in the first aisle, I felt uncomfortable and nervous, but I felt it was just being back in public, around a lot of people. I don’t really want to be around too many people. I don’t like all the movements and noises and I don’t like strangers looking at me. Not sure if it is a temporary reaction due to the stroke or a change in personality, which is not uncommon. But when I walked into the second aisle, I froze. I felt dizzy, things were spinning and I just wanted to run out but my feet froze for what felt like hours. It must have only been a few seconds as Ulco didn’t notice anything until I mentioned it. I can’t say it was painful, but in was just unbearably uncomfortable and I couldn’t take in all the colors and shapes and music and people and also make my body connect with my brain. I quickly realized what was happening and managed to get myself out of the store, into a large, mostly empty white space and felt my myself calm down.

I am getting used to these discoveries of the new or temporary me, and with each one, I am learning to deal with it a little faster. The more I learn, the more I can also avoid those situations, or actively put myself into lesser versions of them to overcome the feelings.

My vision is getting better each day. I have all but ditched the eye-patch and I am able to watch TV without too much trouble and I can read on my Kindle as long as I have the font turned up enough to be seen from space. Being able to see well enough to read again is a spectacularly wonderful gift. In addition to being thankful I am alive, I am super thankful that I have all my language skills.

Tomorrow, I start a full body workout to get myself back in good condition. I learned today from one of my books, that “stroke survivors have, on average, half the amount of cardiovascular strength as age-matched, non-stroke survivors who are out of shape. Many daily activities, most notably walking, take twice the amount of energy compared to people who’ve not had a stroke.” This was shocking to me. I know my body had changed, but I had no idea how much some things had deteriorated in just a few short minutes or the few following hours.

That said, I am not upset or depressed by it. I find it motivating. My goal is to get myself in better shape than I have ever been. It will take time and I can’t do a lot of exercises at the moment, but time will change that. I will be stronger, faster and better than before!

Don't Look Down...

When learning to walk I have one major piece of advice: Don’t look down. And it is almost impossible not to look down, especially when you have a numb leg and a foot on the other leg that seems to only have partial feeling and sometimes decides it is not going anywhere. There is a need to look in on them and make sure they are doing what they are supposed to be doing, taking turns being in front of one another, but looking down just messes everything up.

I am unsure of my feet. I am not completely confident with my somewhat lessoning double vision and my balance often takes coffee breaks without letting me know. So it is only natural that I would want to check in with my feet and make sure they are working. So I look down, and there they are, all four of my feet trying to move on a surface that is also slightly out of focus and seems to be moving on its own. It’s enough to make anyone feel a bit seasick. I decided to take a note from a toddler I saw on TV, and not look at anything at all except the destination. That works for a good portion of the time.

I have also noticed that walking very slow doesn’t help. The way the body balances during forward movement and the way it balances when still are completely different things. And really slow movement doesn’t fit into either category, creating many moments when the feeling of losing balance hits, prompting a fear of falling and causing one to look down. It’s a no-win situation. So, I start a bit slow to get my legs going and then as quickly as possible, I pick up speed.

As I mentioned, keeping the eyes fixed on the destination is key, but not as easy as I thought it would be. Some of my senses have become much sharper and a surface, like say, the parking area in the compound where I live, has always seemed flat. It isn’t. It is full of invisible hills and valleys, all of which give the feeling of being on quite bumpy terrain, again, creating that overwhelming desire to look down. And don't even get me started on stray pebbles... But the good news is, a few rounds through the obstacle course and I now know the lay of the land.

Other fun things include butterflies and birds which like to cross my path and draw my eye to them. I have noticed my body usually tends to go where I am looking regardless of where I want it to go. And then there is the issue of what I can only refer to as “the spins.” If you have ever been drunk to a point of seeing the room spin when you are perfectly still, you know that feeling that comes just before the mad dash to the bathroom to vomit, then you have an idea of what I mean. These days, if I turn my head to fast, it seems to start the whole world moving and it just keeps going. And going. And going. My whole world spins right ‘round like a record, baby. And when I see a bird or butterfly, cool lizard or anything else of interest, I usually forget what I m doing, turn my head too fast and then just hold on until it all stops. It is only a second or two, but it feels like so much longer and often makes me feel physically sick.

And then there is the wind. Oh what fun the wind can be. Logically, I know what the wind is and how it feels on my body, but my nerves tell a different story I have yet to figure out and it throws everything in my balance and navigation out of whack. I went out today for a walk and while the wind felt cool on the good, temperature feeling half of my body, it also made it incredibly difficult to walk. I haven’t figured out why yet. So for now, it is both a welcome and unwelcome entity in my exercise routine.

I have a walking stick, but no real idea as to how to use it. Do I move it with my weak leg? After my leg? With the leg on the other side of my body? On its own before or after taking a step? I never thought about these things before and now here I am clueless, but I will figure it out. That is one of my goals for tomorrow. That and not looking down. 

Manic Monday

I am so glad the weekend is over. It started out ok, I woke up on Saturday feeling good and motivated. I got up, had my normally breakfast and then decided it was time to go out and walk. I decided not to count the rounds, but rather grab my headphones and put on the latest mix by Geo and just walk until I felt I was done.

As usual, the first round was shaky as my legs had to wake up and figure out what I wanted from them. After that, it was full steam ahead. I did my rounds, I then did large figure eights in the parking lot and also went up and down the little steps that lead to the front door. I walked faster and although I had to stop to find my balance a few times, I felt happy and confident. I walked for forty-three minutes. I took a break, went inside and put my feet up for circulation. I wouldn’t believe how well I had done.

But then something happened. A few hours later when I tried to walk forward, I would walk to the right and hit a wall. It happened over and over. Instead of standing confidently, I felt like I was going to fall over. Instead of feeling confident and improved, I just felt confused and disappointed. This unknown body was betraying me, changing the rules.

Ulco and I went out to dinner that night. My first public outing someplace other than a hospital. I had expected to walk in with confidence but instead walked as though I were heavily intoxicated. I had to lean on Ulco for help and felt the whole place was staring. I am getting used to the stairs and pointing. It happens at the hospital, mostly children. I try to ignore it, but it just makes me feel even more out of place and awkward than I already do. I was so happy to be home after dinner and since then have no desire to go anywhere.

Even getting out of bed seems pointless. My whole day consists of getting out of bed just to walk to the sofa, then from the sofa to the table a few times and then back to bed to sleep. Yesterday I stayed in bed most of the day. Ulco told me to not sleep so much or I would be awake all night, but for me, it doesn’t matter. Sit on the sofa all day or sit on it all night, it is all the same to me.

I feel like I took a great steps forward and then moved kilometers back. More and more I find it hard to be motivated. I am not really interested in doing anything. I am not interested in easting or showering or walking or seeing people. I am tired of having to make other people feel ok or comfortable around me, telling them it isn’t so bad and that I feel better everyday. I am tired of people watching and cheering me on while I walk as though I were a little kid. I understand their intentions, but at the moment it just makes me feel like a freak.

I write this because if I don’t, at stays inside and grows. I figure it is better to get it out. I read the comments from people, but I don’t understand them. I don’t feel like or see that person people mention. I don’t feel strong or brave or inspiring. I feel broken, scared and completely alone. I don’t know who I am anymore. Even my name seems odd and foreign, like someone I used to know, but who is no longer here. That scares me. For so long, I have been aware that a lot of people don’t really know me well, and most people like me based on an image of who they think I am. Even I like that image, but what if I am not that person anymore? So many parts of me feel, act and sound different. How can I be Robb when I don’t feel like that person anymore? I hate being trapped in this space with all these thoughts. I find it so confusing and I just wish one person could understand, tell me that what I am feeling is normal and that someday it will get better. I wish someone could tell me what to do besides be patient and persevere. I am tired of being patient and right now, I don’t want to persevere. I don’t want to do anything.

Maybe this is a thankless and horrible thing to say, but sometimes I wonder if it would be easier if I had lost my memory, even if for a bit. I wouldn’t sit here with all these before and after feelings. My body would just feel like my body and I wouldn’t know about all the things I can’t do. I wouldn’t think about the past few years wondering why losing everything just wasn’t enough. I wouldn’t sit here wondering how this will all end and how long it will take. I am just over three weeks further but feel like I have just landed back at square one.

I know this will pass, I know it is just a bad patch, but right now I feel I am in the middle of it and it really sucks right now. 

Mornings...

Mornings are my favorite part of my day right now. I have always been a morning person, jumping out of bed, ready for the adventure of a new day. I always loved the idea that a day could hold so many secrets. Now, I still love the mornings but for a different reason. I love that time when I am just starting to wake up, when all the possibilities of the day are there before me. I cuddle with my pillow and blankets and think about walking to Coco Beach, maybe going for a swim in the warm ocean. I think about sitting by the water at Slipway with my laptop pr a book and passing the hours of the day. I think that I will finally get the haircut I need and then meet a friend for lunch.

Then I open my eyes and look around, trying to make sense of where I am as my vision brings me back to my reality. I sit up in bed, pushing myself up from the left side before flopping like a rag doll on my right side. It takes me time to find my balance. I stay trapped on the bed while my by figures out what it needs to do to function. One I can sit up straight, I put my feet on the ground and talk myself into standing. Maybe it will be ok, maybe I will fall against the wall in front of me, maybe I will stand as the room begins to turn around me. I get a short wave of motion sickness that passes through, but I ignore it. My head spins and my body feels beyond intoxicated as I try to get dressed, putting one leg at a time slowly into mu shorts or jeans. I prefer shorts at the moment. The feeling of jeans against my numb leg is sometimes just too much. It is the same when taking a shower, I can’t take water against both my legs at the same time, the difference in sensation freaks me out. I have to rinse and wash my hair the same way, otherwise it is just too much. The feeling of the water, the difference in temperature and the tingling that happens on my left side are overwhelming.

The bulk of my day is spent on the sofa withmy legs elevated to help the circulation. After breakfast, which consists of four medications and some toast with butter, jam, cheese, Nutella and a cup of tea, I head back to the sofa for an hour or two. Amd then all the thinking starts and it plays tricks on my mind. They range from asking the “why me?” questions to accusations that I maybe deserved it. I take inventory about how far I have come. It is exactly thee weeks later, and while many people would still be in the hospital, I am home and I am making some progress. And then the other voices come and tell me I haven’t done much at all. They tell me I will always be like this, that my life as I knew it is over. I try to block it out but with little to distract me, it is near impossible. Sp I put on my leg weights and focus on counting as I go through the motions of drawing numbers in the air with my feet, doing leg extensions and other movements that are to make my legs stronger. Some days, like today, I am not in the mood, but I will do it anyway and I know that I will feel better afterwards. It is just getting over that first hurdle. It reminds me of cartoons when someone is abound to go off a cliff or take a long fall and someone else says “look out for that first step, it’s a doozey!” Yes, the first step is always a doozey, but so far, each time, I make it.

It is super easy to get into a “poor me” situation, and believe me, I am tempted so many times a day. I have noone to make me get off the sofa. Nobody is keeping track of how many exercises I do. Nobody is around to make sure I even get out of bed, but for some reason I do. I spend a lot of time thinking about people I have seen in India, Nepal and here in villages of Tanzania and Kenya. I have seen people missing limbs, missing sight, crawling from car to car begging for the smallest change. I have seen people sleeping on road dividers, in the dirt under overpasses and in the city garbage dumps. I have seen people with horrifically mutilated bodies, people whose families and communities have tossed them aside and thrown away. Many of them are children, and their life at the moment is as good as it will ever be. It will only get worse. And then I look at myself and my life and all the wonderful people I know and the things I have access to. I realize that while yes, strokes suck, in the whole scheme of things, I have it pretty good. Sometimes a bit of perspective is really important. 

Rollercoaster

What a rollercoaster this is. Highs and lows, thrills and scares and lots of unexpected turns. Wednesday morning I felt fine, great, even. Things were going much better and I was feeling really positive and upbeat. A few minutes after I posted the blog, a massive headache came, quite out of the blue. It wan intense and concentrated on the right side of my head, at the base of my skull, just like on December 23^rd. I tried stretching and taking paracetomol, but nothing worked and the intensity increased. I just wanted to cry from the pain, but that is something else my body doesn’t seem to do.

I already had an appointment for the doctor that day, but with the headache, I phoned and they told me to come right away. Again, I had the feeling something was wrong, that something was happening, but I didn’t know what. My vision went blurry and I had to have the housekeeper help me with the phone. I was scared I was having another stroke and I didn’t know what to expect. Would I lose memories? Speech? Eyesight? Would I die? All of those things went through my head in a massive ball of confusion and panic. I stayed calm on the outside, but inside, I was terrified.

I got to the hospital and as usual, by blood pressure was normal, my blood tests came back normal with the exception of slightly elevated blood sugar, but I had just had lunch and fresh mango juice. Again, no signs pointing to the cause. I was given a painkiller for the headache and after an hour or so, it went away and I was sent home. A friend wanted me to stay with him and his wife, but I declined. In the middle of all this madness and uncertainty, it is important for me to keep whatever routine and normalcy I can.

Since then, I have not had a headache and hope that stays for awhile. I have been given a medication to help counter the depression, but I only take half of one before sleep to help me rest. Sleeping has been super restless and I normally wake up fifteen to twenty times a night. Now I can sleep most of the night, waking up only two or three times a night now.

Walking is going much better. The first hour in the morning is the worst part of the day as I have to relocate my balance and get my legs under control again. After an hour or so, then I put away the walker and see how far I can push myself.

The hardest part is still getting to know my body and trying to make some sense of it and trying to find something that feels like me. So far, only my mind feels familiar. As I type this, the left side of my body is dripping in sweat, while the right side feels just fine. I feel like two people that have been glued together, neither of them knowing anything about the other.

My main frustration right now is my vision. It takes forever to read and type. I did find voice controlled software for the Mac and if my vision isn’t improving in a week or two, I will probably get it. I have increased the font on my iphone to point where it can be read from space. With a naked eye. And I downloaded voice controlled software for mu phone which is a huge help. But one cool thing with my vision, is that when it does come together for a bit, it males everything 3D. If you ever did that experiment where you look at two identical pictures, with a divider between your eyes, when you get the pictures to merge into one, it gives the illusion of 3D. So, I get that on my laptop and iPhone. And I have to say, the iPhone 3D is amazing. I love mine!

Learning to Walk

Yesterday was one of those days when being under the covers, hiding from the world seems like the best plan. I went to the eye doctor yesterday and while I knew my eyes weren’t better yet, the word “surgery” threw a wrench in my emotional gears. I have always had perfect eyesight, the only person in my family not in glasses. Every time I get my eyes checked, I am told I will need glasses in two years and I never do. I have been told that since I was 20. And now someone mentioned surgery.

I am good at getting bad news. I am not the kind of person to burst out into tears or start shouting at a doctor. I take it in calmly and deal with it over a longer period of time. Then I might get emotional. I haven’t really gotten emotional over the stroke yet. Part of me wants to, but another part just isn’t allowing it.

So many people tell me to be positive and stay upbeat, not to let myself feel depressed. But I am learning that feeling the depression can be a good thing. It is there, and ignoring it, for me, is like stuffing a bunch of things in a closet. Sooner or later, the door will open and it will all come pouring out in a huge mess.  So, I am taking a different approach. I am letting myself see the depression and even feel it. I let myself wallow in it for a bit and then decide that enough is enough and I make the decision now to dwell in it. I am realizing more and more that while this stroke was not my choice, and as far as the doctors can find, not my fault, it is my choice as to how I deal with it and it is my fault if I let it win.

I have done some research online, not always a wise thing to do so I have stopped. I saw statistics that ten percent of people who have this type of stoke, a CVA or cerebrovascular accident, die within a year. I have also read that two-thirds never fully recover and have some problems. I was shocked and devastated at first. But I realized and decided that I am not ten percent or two-thirds of anything. I am one hundred percent me and I will to let myself or my recovery be defined by some numbers I don’t believe apply to me.

I wrote a couple of months ago about the personal journey I have been talking, trying to live in the moment and realizing the past is just a memory and the future is an unknown illusion. This is really being put to the test now. I know that nothing is guaranteed. I only know that I have the choice to make. I can choose victory, I can choose to fight or I can choose not to. It may seem silly, but in some ways, choosing not to seems so much easier. Sometimes I just want to sit on the sofa and be angry. Sometimes I wish I could take everything breakable in the house and smash it against a wall. Sometimes I want to scream, yell and hit. Sometimes I want to know why this happened to me, not someone else. Why didn’t this happen to a criminal or someone who spends their life hurting people or doing bad things. Sometimes I don’t want to eat or take my medicine or shower or exercise. Sometimes I want people to leave me alone and stop telling me to be positive or that I will get through it. Sometimes I just want it all to go away.

But then there is something else inside of me. Something that pulls me forward and sees me through. It is sometimes a little voice and sometimes no more than the shadow of a feeling.

Yesterday, after lunch, I decided I was going to sit and watch TV and feel sorry for myself. I was well into my pity party for one when my nurse arrived for my walking exercises. Normally when he arrives, I am up and out and eager to get going. Not yesterday. I all but ignored him the first fifteen minutes. I was going through the motions of pretending to watch TV, hoping he would see how sad and depressed I was and leave me alone. He didn’t. So with a bit of anger and a lot of resentment, I sut on my flip flops, grabbed my walker and went outside.

The first round of the compound was horrible. My balance was off, my legs would not cooperate and I spent the first ten or fifteen minutes proving to myself why I should be on the sofa and why the exercise was a waste of time. Then my nurse came up with a stupid idea. He said I should walk without my walker. The man obviously had not been paying attention. Could he not see that I could barely stand? Could he not tell that I was in no shape at all to walk on my own. We went to the grass, where I could fall without getting hurt. I was so looking forward to falling face down in the grass. Maybe if I did that, he would end the session and I could get back to the more important business of feeling angry and depressed.

But then it happened. I walked. I walked from my walker about twenty meters to a tree and back. And then I did it again. And again. And then I went around the compound a few times. I almost lost my balance a few times, but I didn’t fall. I walk like a one year old toddler, but I didn’t and don’t care. I can walk. Since then, I have only used the walker one time, and that was when I woke up this morning, as it takes me about twenty minutes or so to get my balance back on track.

Today, I feel better. The depression is still there, but I look at the facts now instead of my anger and fears. I could not walk a few days ago and now I can. Yesterday I needed a walker and now I don’t.

Going to go now. I have some walking to do!

Another Day...

This morning, I had a follow-up appointment with the eye doctor. I had an exam last week and in the time between, some of the swelling had gone down, so that is good news. I have been wearing an eye-patch for the past two weeks, but now I am trying to get along without it, so my eyes can start trying to work together and hopefully correct or improve my vision. If it is not better in three months, then surgery might be an option.

One of the big mysteries is what caused the stroke. I have been tested for everything under the sun and nothing has come back as a possible cause. It makes me nervous since not knowing the cause makes it harder to figure out how to prevent anything further happening. I am not the fittest person, but I am fitter than most. I also don’t smoke, do drugs or drink heavily. I eat pretty healthy, have no history of high blood pressure, hypertension, diabetes or anything else that might point to risk.

I have also noticed that my voice has changed. Not sure if that is temporary or not. I find it strange that I don’t sound like myself, at least not to me. Today I discovered that I can’t sneeze. I feel like I will, but then it doesn’t happen. Sometimes I will have a sort of half-cough – coughing is another thing I can’t do right now – but usually the feeling to sneeze just vanishes.

Today I feel a bit better emotionally than yesterday. I will have some lunch and then strap on the leg weights and do my exercises before going outside to walk. The walking is going a little better, some days definitely better than others, but I have to remind myself that two weeks ago, I could not walk at all.

Right now my biggest obstacles are not letting the boredom get to me, not letting the frustration and depression take hold and also not giving into the almost overwhelming desire to stay in bed and sleep all day. 

Having a Bad Day

The last couple of weeks have been intense, to say the least. So far, I have managed not to get sad or depressed. That is, until today. I woke up this morning with this heavy feeling that is almost suffocating. I don’t know why it happened today, but here it is.

Yesterday was a great day. I did my exercises for my arms and legs and then went out walking on the compound. The first day I did one round, then three and yesterday I did seven. Today, I am not doing anything. I just don’t feel like it. I took a couple of naps and each time woke up crying. I feel silly and don’t know how to make the feeling stop. Normally, I would go for a walk on the beach, but right now am trapped in a house. I want to lose myself behind my camera, but that is not an option right now. I can’t really read and even writing this, I have the screen view at 500% just so I can see.

I think the part that bothers me is the unknown timeline. If you break a leg, you know it is six weeks and even if it is frustrating, there is an end date, something to count down to. I don’t have that. I am just waiting for something that might happen in a month or six months. I feel imprisoned in this body I don’t understand. My mind is very clear, I just can’t connect what I want to do with my body. Sometimes when walking, my right leg just refuses to move and I get stuck for a few seconds.

So, here I am with a lot of negative thoughts today and way too much time to think them. I wonder how long this will all take. And I wonder if I really will recover. Not everyone does. I wonder if this is temporary or my life. I know I shouldn’t think these things, but I am having a hard time silencing the voices in my head. I hope this feeling passes soon… 

Stroke

December 23 seemed like any other day, with the only difference being that I woke up with a headache at the base of my skull on the right side. All day, it was there, just a steady, dull pain. I didn’t think much of it and figured it was due to sitting wrong and spending so much time on my laptop. It eased off a few times during the day, but then would come back. It was really more uncomfortable than anything. I was having trouble concentrating and finally, around 11pm, decided to go to bed. I couldn’t get comfortable and around midnight, got up and took a couple of paracetomol. An hour later, I was still awake when something happened.

I wasn’t sure what was going on, but I knew something was not right. I had a hard time balancing, but I thought I was just really tired and had stood up too fast. I got to the room where Ulco was on his computer and when I reached the door, I said “I think something is wrong.” The look on his face told me something really was wrong. He ran over, helped me to the sofa and called the doctor. Fifteen minutes later, I was at the clinic hooked up to a heart monitor, which showed nothing odd. My blood pressure was normal and after being checked out, the doc decided I should go home and then go to a hospital first thing in the morning. And then the extreme vomiting started and as mortified as I would usually be in such a situation, I really didn’t care. I knew then that things were bad.

The doctor ordered Ulco to take me immediately to Aga Khan hospital for further treatment and an MRI. We arrived there around 3:30am. I don’t remember too much about the next hours, just lots of vomiting and then an MRI. I remember not being able to sit up and I remember having an IV in my hand. Ulco came and went organizing stuff, but that is all I know.

The doctor came back with the preliminary results of the MRI and said there were no abnormalities and they would do more tests to see what was causing the problems. Some time later, the doctor came back and said that the MRI had indeed shown something. A one centimeter area of my cerebellum, the part of the brain at the top of the brain stem that controls equilibrium, motor movement and balance, that had been damaged due to a burst blood vessel. It was a tiny vessel and the area of damage was small, but they wanted to keep me in the hospital for observation.

The doctors came and went and the IVs kept coming and although they had explained some of what was happening, I still wasn’t really clear. Later that day, Christmas Eve, I started having horrible hiccups. They would be so intense that the entire bed would move and my chest would seize and I would not be able to breathe for several seconds. They got progressively worse and eventually I had to have a tube inserted through my nose and into my stomach. It took a few attempts and my nose was gushing blood. They stopped and brought in another nurse that was able to do it with relative ease. The hiccups stopped for the night, but I felt like I was choking the entire time.

Either due to a mistake by the nurses or my own moving around in the night, the bag at the end of the tube in my stomach was not there in the morning and the left side of my bed was covered in the black liquid from my stomach. It was all down my left side and the nurses took me into the shower and for the first time, I had to be bathed by someone else. Again, although it has always been one of my worst fears to be that helpless, I didn’t care. I was tired, I was weak, I had a tube coming out of my nose, I couldn’t stand and I still did not really know what was going on.

The whole next day, I was given medication, had my vitals checked regularly and was on the occasional IV drip. My vitals were normal, no fever and normal blood pressure. Neither my balance nor hiccups improved. The tube came out of my stomach and I was given very strict dietary instructions. No more than 100ml of food every hour, banana, rice and yoghurt. I was unable to swallow bread, even when it was wet with tea or water. Still, the hiccups remained.

On the second full day, I asked to go home. I had had no fever and my blood pressure was still normal. I was having two IV drips a day and a few other IV drugs. I figured I could do that as an outpatient as I lived just a few minutes from the hospital. That was when the doctor finally told me what was happening.

A part of my brain was dead and would not recover. The activities handles by the part of the cerebellum that was now dead would be taken over by other parts of the brain. It would take time but they said I should have a full recovery. Weeks, months, the time was anyone’s guess, but it would not be quick. I also noticed that my body seemed to be split into two perfect halves. I noticed this when showering the second time when I was a bit more aware. My entire left side, from the top of my skull down to my toes is numb. I can feel some things, like texture, but I feel no temperature difference or pain. Ice cold water on my left side feels warm. It I touch something very hot, like a cup of tea, I will get really intense tingling. My right side is overly sensitive to temperature and pain. So when showering, I have to set everything according to my right side. Urinating is also a challenge, as I don’t feel the need to go until I really have to go. That is controlled by using my hand to put pressure on my bladder every couple of hours to check. In addition to this, I have extreme vertical double vision and now spend many hours a day wearing an eye patch. There is some swelling in my right eye, but that should also correct itself over the next few months.

I spent a few more days in hospital, and then after a week, was released to go home. That was more intense than I thought. It is one thing to deal with strange things in a strange place, it is easy to compartmentalize and deal with. But getting home and realizing I was indeed not the same was and is difficult.

I spent the week after being released in outpatient treatment. The hiccups stayed making it impossible to sleep, and they would continue with increased intensity until I would vomit and then they would disappear for a couple of hours before starting again. I needed to do exercise to learn to walk again and keep my leg strength up, but the hiccups left me too exhausted and the vomiting meant I had no food in my system.

After five days of outpatient treatment, the hiccups finally vanished. That was just two days ago. My stomach still is very sore and I am paranoid about whatever I eat, as I don’t want to retrigger them. Two weeks of hiccups almost cost me my sanity.

Now I am doing my exercises and learning to balance and walk again. I still have no feeling on the left side of my body. And now, the depression is lingering nearby. I try to ignore it. It is just so frustrating to be trapped in this strange body. It doesn’t feel like my body or act like it. I have to concentrate to get my legs to move the way I want if I wish to walk. I am using a walker for that as well. Like a baby, if I am lying down, I can move my legs any way I like. Adjusting and repositioning, but when it comes to walking, they have a mind of their own.

I hate feeling helpless. I hate that I need help with basic things. I hate being confined to the house and this sofa. Even writing is no longer fun, but a lot of work, getting my fingers to hit the right keys and being able to read what is on the screen.

Everyday it is getting better. A little here and little there. Anyone who knows me knows that patience is not my strong suit. I want what I want and I want it now. The thought it might take months is sometimes overwhelming, but I have to just do what I can and give it time.

Right now, everyday is an adventure, some better than others, and I am learning that even baby steps can be big leaps.