Wednesday, April 11, 2012


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?


  1. Robb, thank you for sharing. Thinking of you and sending you a big hug! I'm amazed by the courage of this new you to be so vulnerable and open. That's certainly worth embracing.

  2. Rick Gartner11/4/12 03:15

    It takes a lot of courage to write this down the way you did, Mr. X. And as before, with a clarity and comprehension that is admirable. To me, the answer lies in your last few lines. You are now a new person, trying to get to know a new person. If you think about it in the narrow sense, there is no shared past, only a shared future; the easiest way to get to know someone! It doesn't take fierce conversations, only a willingness to listen and talk... Sorry about previous reply, clumsy me!

  3. So Looks like the body is on track but you brilliant mind is unwilling to follow,you have come so far in a short time, so continue to be patient and you will find your new self, I agree somewhat with Rick get to know this new person one day at a time, you have a lot of people who are thinking and praying for you. I am so proud of you for your progress, dont stop now LOTS of LOVE Jan

  4. Julie in Denver12/4/12 07:31