Everything Is Going To Be OK

I have thought about writing this post for a long time, but always chose not to. I am afraid it will make me sound like an ungrateful jerk, but as I hear similar things from various people, I have decided to just put it out there. Before I get to the topic at hand, I want to say that all the support everyone has shown for me is humbling and amazing. It has reconnected me with a lot of people and helped me through some extremely difficult times. I go back and reread them now and again and I am always moved. This post is in no way a complaint about any of that, merely an observation about life as I am experiencing it and something that has been raised in conversations. In fact, it was also a topic of conversation with a friend while watching the episode of “Sex and the City”, when Samantha tells everyone she has cancer.

“Everything is going to be OK.” Is such a common things to say when someone goes through a difficult time in life. I have said those words myself to so many people, but only now I have come to realize how they can be both comforting and annoying at the same time. Because the fact is, when it comes to something major, nobody knows if it will be ok. In my case, even the doctors don’t know, and hearing those words is sometimes like fingernails on a blackboard. I apologize to anyone I have said that to when it had that effect on them. It was not my intention. My intention was to be positive, show support and try in some way to offer comfort to someone in a situation I may or may not have understood.

There are two types of people who say those words; People that have gone through the situation or have a lot of knowledge about it and are speaking from a place of experience, and people that mean well, but often do not know what else to say. When people speak from a place of experience or knowledge, the words can still be annoying, but they can back it up with facts or personal details that add weight to the words and don’t immediately trigger the question “How the hell do you know it will be OK?”

When other people say them, people who mean well, but don’t really know what else to say, they can feel hollow and many times, it feels they are saying it more to comfort themselves  than the other person as a way of giving themselves hope and a way to deal with what their friend or family member is going through. I know it comes from a good place, but it just doesn’t always feel good to hear.

After all, what does that line “Everything is going to be OK” mean? Does it mean I will make a one-hundred percent recovery? Does it mean I will just learn to deal with it and work around whatever doesn't recover? Does it mean I will wake up one day and not think about it? Does it mean I will use my experience to help others? What exactly determines then something is “OK” and how do we know we will ever get there? I don’t know at all what it means for me. Sure, I am OK, compared to four months ago, but not OK compared to five months ago. Hearing “Everything is going to be OK” doesn’t usually make people who are in the challenging situation feel OK at all.

While watching “Sex and the City”, my friend asked me what someone should say in that situation. He told me a friend of his just told him she has breast cancer and he asked what to say. I told him not to tell her it would all be ok, but instead to tell her that he was there for her. That is what I want to hear. I am very aware that things might not ever be OK, but if I have my friends and family around me, I know I can deal with it. I want to know someone will be there for the victories and the failures. I want to be cheered when something goes great and helped along when I can’t do it on my own. I want someone to make me laugh and help me forget just for a few seconds and I want someone to hold me and let me cry. Sometimes, it is enough just to have someone near, even if they are reading a book or watching a movie, just knowing they are there, really there. So while telling someone that things will get better can help, letting someone know you are there whenever they need, helps so much more. Sometimes, just knowing someone is there makes everything OK.

Thank you all for being there for me. It means more than I can say.

124 Days

It was four months ago today, that I woke up with a headache, not knowing that in just a few hours, my entire life would be turned upside down and changed in ways I could not begin to imagine. Everyday since the stroke, I wonder if there is another one lurking out there somewhere, just waiting. Every headache still causes an internal panic and many times, when I lie down to sleep, the fear keeps me awake. I am hyper aware that ten percent of people who had the type of stroke I did, die within a year. Today, I am one-third of the way through the year and once I am through the year and while I am happy about that. Overriding that happiness is the knowledge that twenty-five to forty percent of people have a second stroke in five years. Then, there is the forty-three percent risk of a fatal stroke in the next ten years and part of me is wondering if I am merely moving further away from the last one or closer to the next. I try and block it all out of my mind, but it is always there. Anytime something seems the slightest bit off, I have to wonder. It’s the dripping faucet while trying to sleep.

I often wonder if I could have done something that day to change how things went. What if I had taken an aspirin for the headache? I wonder what I might have done different that day if I knew what was in store. I guess those types of questions are asked by anyone who goes through something major. I find it scary that life can take us speeding towards a destiny just a few moments away from our current reality.

When I first got home, I thought the hardest part would be learning to walk, but that was actually a piece of cake compared to the loneliness I feel. I have wonderful people in my life, and have received so many comments and emails and support from people that have really helped. I am also aware that nobody really gets it. Nobody really understands what it is like and that makes me feel both happy that nobody in my family or circle of friends has gone through this, but I also get so frustrated that nobody really gets it.

And I feel I talk about it all the time. I sometimes feel it is the only thing I know anymore. I so often feel I am nothing more than the guy who had the stoke and now, when people ask how I am doing, it is no longer the throw-away question to which I am supposed to answer “fine.” Or am I? I feel they want an update. But do they? It has made me socially awkward and very self-conscious. What do I say? What do they really want to hear? Even this blog, which used to be about so many other things, or so much of nothing, depending on how you look at it has been taken over. I need to talk and write about it to understand, but I am nowhere closer to understanding than I was when it happened. And I feel nobody else understands either. Sunday, during lunch with a friend I mentioned I was one third of the way through the year and the dangers of a second stroke in the first year, when my friend made a joke and said “So you are waiting for it everyday!” I know it was meant to be funny, but it isn’t.  And I am.

I have always been a person to do things on my own. I really don’t like relying on other people and have gotten through the bulk of my life that way. But now, I feel I may be in a little over my head. I decided to find an online group, where I could at least talk and communicate with people who get it, and give my friends and everyone else a break. I did a Google search and site after site was filled with images of elderly people. In wheelchairs. Being helped into cars. And all sorts of other things that are just not me. And then I came across a few stories of people. People like me, who were young and then suddenly paralyzed, unable to speak or in comas. I have a friend whose brother had a major stroke, and it makes me so confused. Should I be grateful that it didn’t happen to me? Should I be worried it might? Should I just shut up about it since I got off pretty light, all things considered? I feel all these things. As I went to sign up for the forum and chat rooms, there was a form to complete. Among the questions were “date of first stroke”, date of second stroke”, “date of third stroke”.  I just started to cry.

Is it only a matter of time? And if it is, what will the next one be like? Will I be as lucky as I was last time? 

Changes

After only five months of being in Tanzania, I am once again getting ready to move. Ulco has been reposted to the embassy in Jakarta and will leave Tanzania on May 10. So, I will leave on or before that date, but at the moment have no idea where that will be. I have known about it for a couple of weeks, but as he didn’t have the confirmation letter in his hand, I was not allowed to say anything and he could not make it public. But that has all changed.

So many things are changing so fast. It has been incredible living with my best friend and having the time for us to really get to know each other even better and have a few adventures here and there. I am very happy for Ulco, but a bit sad for me as this phase is coming to an end and now life will be something new. But if I have learned anything, it is that nothing is permanent and everything is in a constant state of change, sometimes the change is so slow it is almost invisible and other times, it happens so fast it can feel like a train heading right at us.

This is one of those times when it feels a bit like a train. I am not yet sure where I will go, but I do have a back-up plan, which involves going back to the US for a while. Again, not sure where, but I am sure things will sort themselves out.  I am also applying in other countries, but so far the process is happening slower than the approaching reality.

I can’t say I will miss Tanzania that much, as I spent most of this time indoors and focused on myself instead of exploring the country and making memories, but at the same time, I will always be tied to this place because of the things that happened here.

In less than three weeks, life as I know it will change again. I am both scared and excited.

Identity

I haven’t written in awhile. I wish I could say because it was due to being busy with cool projects and lots of fun stuff. But, the truth is, I am not in a good place at all and not really sure what it all means or how it will all work out. If it will work out.

After the stroke, I quickly became aware of the challenges I was facing, such as the inability to walk and learning to function with nausea-inducing double vision. All my energy was focused on fixing what was broken, re-learning what I had lost.  Day by day I would notice improvements and quite often make new discoveries about things that were suddenly different. One day I realized I had no hot or cold sensation on my left side, and on another, discovered I never feel full no matter how much I eat. The body that refused to put on weight my entire life, grew by over fourteen kilos in a matter of weeks. 

As the recovery moved along my focus would shift to the next thing that needed improvement. The focus was always on the obvious. I did learn to walk again, although I can’t run or balance on one leg even long enough to put on trousers. My vision is pretty much in focus, but I am finding it incredibly difficult to read long lines of text, which I am practicing. I find it almost impossible to get my eyes to go to the left-most part of the sentence and then move right. And once I get to the end of the line, I have to figure out how to move down just one line and start back on the left. I have no problem reading short lines, so on my Kindle, I have the font big enough that each line holds three or four words. It is still a challenge, but I am managing to read. I do however read like a six year old, with a pause between each word, even when reading silently to myself. I am currently reading the fourth book in the “Wicked” series by Gregory Maguire, and after over two months of reading, I am now about sixty percent of the way through. My old self would have finished it in one or two days. I think I have another month or so before I will finally read the last words.

 While the recovery is still continuing, and probably will for a very long time, the urgency has, for the most part, lifted. The bulk of the rest of the recovery is all up to my brain and there isn’t really anything I can do but be patient and wait and hope. Now my attention has focused to what I am finding to be the most difficult part of the recovery; Discovering who I am now.

There have been many movies where a character woke up in the body of another person. They would freak out for five or ten minutes and then settle in as though it were the most natural thing in the world. I can tell you, it is nothing like that at all. I am still in “my” body, but it is different enough that I don’t see it as mine. Until recently, I didn’t have the vision to really look in the mirror and I didn’t have the social life that would expose the changes in my personality. Now that those things have changed a bit, I really have no idea how to handle it all. I look in the mirror, but it is not my face that looks back. My face is fatter and my right eye is droopy. I have a rounder belly. They might seem like minor things, but they happened practically overnight and I am having a difficult time with it.

My personality is also new to me. I lack a confidence I always had. Even phoning people is often quite intimidating to me. I don’t like parties. I don’t like noisy spaces. I am comfortable around Ulco and a couple of other people, but other than that, I feel like the toddler who hides behind the leg of a parent. I got asked if I was interested in having a small part in a play and without even thinking about it, the answer was no. I have been asked to audition for a musical in two months, and again, the answer is no. I was in Cape Town a few weeks ago and whenever we went shopping, it had to be early in the morning and if we went to clubs, it had to be before they got busy and I don’t like the loud music and lights. And I was terrified someone would come up and talk to me. If I had my way, I would stay home. All the time. I am supposed to go to an Indian wedding tomorrow, and I love Indian weddings, but I can’t. I can’t even go shopping for something to wear. I am trying to do some simple work for a friend, basically a whole lot of copy and paste from the internet to a spreadsheet, and I find it daunting. My coordination is not so great at the moment and sometimes, for just a second or two, I forget or get confused about what to do. It isn’t all the time, but it happens. It never happened before. My voice still sounds different to me and while it sounds kind of like me, it doesn’t sound completely like me. I tend to be much more quiet, reserved and to myself.

I realized that there is nothing in my life that I do, which has not been affected by the stroke. If I walk up the hill, can I walk down the hill? If I eat a certain food, will I wake up sick in the middle of the night? Will I be able to cope with the airport? Will I panic in the plane? Have another stroke in the plane?  If I go out, will there be a lot of people? Noise? Children? If I go to a restaurant too far away, will I be able to get away immediately if I panic? Will I be able to eat without spilling down the front of me? Will I have a mood swing? Will I fall down stairs again or trip over uneven concrete in the road? What if I injure myself and don’t feel it? When I see people, how long will it be before the conversation turns to my recovery? And I am usually the one who brings it up. I feel like I am nothing more than the stroke and what has happened since. I feel I am letting people down. I feel like I have become a bore and burden to everyone.

Most mornings now, it takes time to get out of bed. Not due to anything physical, I just am having difficulty trying to find some reason to stand up. A reason to shower. Some days I have gone well into the afternoon looking for one thing that would motivate me to put my feet on the floor. Sometimes I cry, sometimes I am just numb. Part of me wonders why I didn’t die that day in December. Part of me is grateful I didn’t, but part of me isn’t so sure.

I know I got out through my stroke easy compared to a lot of people and I feel so guilty that I even feel this way. I just feel so alone and lonely and totally clueless about what to do. I did my research, of course, and it seems that people that have gone through strokes also go through an identity crisis and depression, torn between being glad about all the recovery we have made, but unsure about what it all means. While it tells me that I am not losing my mind, it doesn’t really make me feel any better. I don’t really talk about this to anyone, because nobody will understand and that just makes me feel more alone. But last night, after having an emotional meltdown, I figured it was time to at least try and get it out. I have no confidence it will help, but I doubt it will hurt.

I know I will never be who I was. I know I became someone else on December 24, 2011. I don’t know who that person is. I am not sure I want to know.  I hadn’t figured out my old self after over forty years. How am I supposed to do this? How do I embrace this person when I am not even sure I like him?