What a Difference a Year Makes

One year ago. One year ago today was the first day of life as I would come to know it. When I woke up the day before, I had no idea that in just a few hours, my brain would be swelling, I would "forget" how to walk, my vision would become almost useless and my life would start on a trajectory that would take me places I never imagined. Or even wanted. I would like to say I spent that day doing something spectacular, adventurous or even interesting, but the fact is, I spent the morning in the house doing some market research on my laptop. Then Ulco and I ran some errands and I cooked some pasta, watched some TV and then went to bed. I never imagined that such monumental changes could happen in such a non-monumental way. Who I was changed from one second to the next and looking back over the past year, I am glad I had no idea what was in store.

A year ago, I just wanted to get one year further. I am not sure if I remember correctly, but I think I read or heard something about being more at risk for a second stroke during the first year. I might have even written about it, but I haven't really reread anything from the past year. I was waiting for this milestone, I wanted to reach the one-year mark before looking back and revisiting.

I tossed and turned all night last night. Images and snapshots of one year ago filling my head. I tend not to think about that time, the events of that day and the immediately following weeks. There is still so much I don't remember or understand. For some reason, I could not stop it last night. The hospital, nurses, IV's, tubes, hiccups, Ulco, the clicking of the MRI. I can still smell the hospital and hear the voices of the nurses. I remember thinking how gentle they were when putting the IV in my left hand, not yet realizing I had lost all sensation of pain on that side. I remember trying to get up and realizing I was unable to stand. I was unable to even sit up without assistance.

I also remember when I could walk the three or four steps from my bed to the sofa in my room. I remember the first time I could stand on my own in the shower and the first time I walked without the walker. I remember writing my blog with the screen at the highest magnification and my nose almost touching the screen so I could read what was on the screen. I remember the day in March when that endless feeling of falling went away, and the first set of steps I was able to walk down. It was slow going and I was wobbly, but I did it.

I still have those moments when I do something I wasn't sure I would ever do again. I find myself smiling to myself when I can step off the curb and onto the street without pausing first. Two weeks ago, I was able to run in for the first time. I was on the treadmill and I had to hold the sides for balance, but I ran. I was so overwhelmed with emotion, I didn't know whether to laugh or cry, so instead of doing either, I just held on and ran some more. I always hated running, and now I find myself almost obsessed with it. I just want to run more and more. The feeling is still odd and I am not really finding it a pleasurable physical experience, but knowing I can do it is indescribable. The next goal is to run on the beach without any help. I also want to try ice skating and possible riding a bike. And for the record, that saying about always knowing how to ride a bike is just not true!

This Christmas is my first Christmas in several years, my first one in the US since 1993, the first one with my sister and mom since 1987 or so, and the first one ever with my niece and nephews. I have to say, I really miss being in another country, the adventure and all the things that come with it, but I am really enjoying being a brother and uncle in close proximity to family. It is not always easy havig to suddenly deal with certain dramas up close instead of across multiple time zones, but that comes along with having family. At least my family.

One year ago, my life changed. It went in directions I never imagined and I have experienced so many new things. Some I hope to never go through again and some I didn't even know I wanted. I have learned not to take things for granted, especially the everyday, ordinary things we never think about, like walking, running, being able to swallow, reading, feeling physical pain or the difference between hot and cold. I am happy some of the struggles are behind me, and I am looing forward to when more of them are in the past, but I hope to never forget to appreciate what I have learned.

About myself, about others, and about life.

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Being a Wallflower

It has been a couple of months since I last posted anything. There wasn't anything wrong, It was just that so many things have changed in such drastic and unimaginable ways that I lost myself a bit in all of it. I had become so used to my own limitations, however temporary or permanent they may be and while I didn't realize I was pretty much giving up, I resigned myself to the idea that things were just the way they were. I could walk again and was thankful for that. Was it really so important that I be able to ride a bicycle, skate, run, jump, hike, scuba dive or any of the other activities I love?

So, I stopped trying. It was so much easier not to almost fall off a bike or risk the disappointment of my body not being able to do something and just settle into what I had become instead of striving and reaching for more. I was walking, which was more than so many other people who had gone through my situation. Why be greedy and why risk failing?

I sat back while others did what I could not. I would see people on TV and know that not so long ago, I could have done the same thing and maybe have done it even better. Then I would tell myself that those days were over and to not be sad since I had already had so many wonderfully incredible experiences in my life. So I took a few steps back and let others do what I would have done and still wanted to do, but I was scared. I am not a person used to failing or underachieving. I am also a person that takes failure or anything less than perfection very personal, and with that looming in front of me, I stepped out of my life and into the assumed safety of settling for what seemed to be.

I might have stayed in that situation had it not been for a couple of seemingly minor, yet major things that happened. Frist, I was reading “The Perks of Being a Wallflower” by Stephen Chbosky and there is a point when Charlie, the main character and narrator of the book is told by his teacher, “Sometimes people use thought to not participate in life,” I saw a lot of myself reflected back in that sentence. I was suddenly aware I had traded participation for observation and had become quite adept at coming up with reasons not to do something. I wanted to break out of that, but the fear was more powerful than my willpower. That is, until one of the stops on the road trip I did with Ulco.

Ulco had come to the US to see how I was getting along since we last saw each other in Dar es Salaam almost six months earlier. My balance was still unreliable and I was dealing with major bouts of depression. Ulco decided to use his holiday to come to the US and see places like the Grand Canyon.

It was a few days into the trip when we arrived in Bryce Canyon, Utah. In Bryce, the road and parking areas are along the rim of the canyon, several hundred feet above the canyon floor. Ulco decided we should go for a hike of about a mile, uphill along the rim. I wanted to, I really did, but as soon as I found the first excuse not to go, I told Ulco I would wait for him and he could do the hike on his own. I was angry at myself and jealous of his ability to just do what he wanted, but I put it all out of my mind and told myself it was just the way things were and the way things would be. A few minutes later, Ulco phoned me. I could see him further up the path and he was calling to tell me the path was not bad at all and that he thought I should just try it. I decided to do it, if for no other reason than to prove to him I couldn't so he would not push me for the rest of the two weeks we had ahead of us.

I caught up to Ulco and indeed, it wasn't bad at all. The slope was not too steep and the views of the canyon were beyond spectacular. As soon as I realized we we walking past another parking area on our way up, I plotted that I would wait there while Ulco pulled the car up and I could just drive out. That was when I saw it. There on the path leading up to the lookout point was a walker. It was almost identical to the one I used when I first got out of the hospital. Suddenly months of memories came flooding back. I remembered not even being able to stand up without help. I remembered the walker, the first steps I took without it, walking the perimeter of the compound, being able to stand in the shower again, learning to walk down stairs. It was almost exactly ten months to the day I lost the ability to walk, that I was hiking unaided in one of the most beautiful places I had ever seen. I made it to the top lookout point. Then fear struck. I had to go back down the same path and I tend to get vertigo on my right side, even when walking next to a swimming pool. I had to walk down with the steep cliffs on my right side. A fall would mean being seriously injured at best and more likely than not, killed. I was suddenly in a battle between my fear, panic and doubt on one side and determination on the other. We walked back down with Ulco keeping himself between me and the edge and before I knew it, we were back at the place we started. I did it.

We paused to take a few more pictures when we saw the sign for a two mile trail which would wind from the top of the canyon, down to the canyon floor and then back up. Ulco wanted to do it and I decided to try it. The first trail had been easy, but the trail we were looking at was labeled as moderate. I wasn't sure I was up for it, but decided to do it. It was not so much for the challenge as it was due to the fact I wanted pictures from within the canyon. Ulco and I have a sort of friendly photo competition and I wasn't about to let him have a series of photos from that trip that I didn't have. We started down the cliff on a zig-zag trail that descended incredibly fast and soon we were in the cool shade of the canyon. Then, one of my worst fears came to be. I fell. I had tried to go up a slope a bit to get a picture and stepped on what turned out to be loose gravel. I started sliding and didn't know how to stop. There was a small, shallow crevice in my way that I would either get tripped by or have to get over. I remember yelling for Ulco and sliding down, somehow getting over the crevice and stopping myself when I went up against the cliff face of one of the rocks. The whole thing had lasted two or three seconds and looking back, there was no real danger, but I was most definitely shaken and when I sat down to regroup, I felt the tears come.

I felt them come, but stopped them. I was in the bottom of a canyon, a mile in either direction and hundreds of feet up to get out. It was no time to panic or give into any feelings of doubt. The only way I was getting out was to keep it together, ignore the fear and walk. And that is exactly what I did, and I made my way to the top all in one piece and with the knowledge and pride that I did it. Over the next couple of weeks, there would be hikes and climbing on rocks. I may not have done it as fast or as graceful as I used to. I may have stopped and rested more often than I ever did before, but the fact I did it made me realize that the only true defeat is giving up and the events that happened during the trip make me realize that I am not built to be just a bystander.

So these days, I am participating in life as much as I am observing it. Perhaps even a little more.

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Back To A New Me

"It's a new dawn, it's a new day, it's a new life for me, and I'm feeling good..."

For the past months, I have felt like partially me, kind-of me, not really me and every other way I could feel, except really and completely me. I know in some ways I was me, but it was not a me I recognized and many times, not a me that I wanted to be at all.

But now there seems to be a shift, a change in the wind or weather that has been blowing around my emotions and moods. For the first time in a very long time, I am feeling almost like myself and each day seems to be getting just a little better. Sure, there are low moments and even low days, but I don't feel so lost, so out there, so foreign to myself.

Most of it has to do with just accepting what is and being willing to accept what will come, instead of mourning what was or perhaps what I only thought actually was. It is commonly accepted that there are five stages of grief and loss; Denial/isolation, anger, bargaining, depression and acceptance. I don't think anyone moves directly from to the other, I think like many things it is a few steps forward and a few step back. Moving from denial to anger to bargaining and then perhaps back to denial or anger for a bit. It would be nice if there was a direct road that went from A to Z, but perhaps there is more to see and learn from the winding road instead of the straight highway. I think I am finally getting into the first parts of the acceptance stage and looking at what it might mean if i just embrace it. Right now, I don't know what that will mean, but I see shades of what that might look like.


And just as I am getting stepping into this better space, things have started to unfold to propel that even further. I won't go into details yet as things are still getting worked out, but sufice to say that things are poised to head in a fantastic and exciting direction. And if for some reason they don't, they have me making additional and fall-back plans, and for the first time in a very long time, I really feel like everything is going to be just fine. Better than fine, even.

And even more important, I am feeling more like me. Maybe more like me than ever before.

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About Me And My Blog...

I think I need to explain something about my blog and the things I write about. As anyone who reads my blog knows, the past eight months have been among the most emotionally and at times physically challenging of my entire life. During this time, I have learned a few things about myself, one of the most important being that I can't go through all of this alone. I wish I could. I really wish I could paint a pretty picture and deal with everything alone, in my room and in private. That is my usual way of dealing with personal things. That behavior has cost me relationships and created more problems than it has solved. But since the stroke, my emotions have intensified to levels I don't understand and I often find them so overwhelming and intimidating that I just can't keep them to myself without feeling like I am going crazy.

Last Tuesday, when I started my last blog post, was one of the lowest and most emotionally intense days I have had since all of this began. for the first time, I was face to face with some of my worst fears about what might be waiting for me in the future. For the first time, I had to admit, really and truly admit that I had had a stroke and I needed help. I don't like to ask for help. I love to give help, I hate getting it and I hate asking for it even more. Going to that group meant laying it all bare, emotions and all, without the luxury of hiding out behind a keyboard, away from inquiaitive eyes. So I started writing as I usually do, not with the thought that I will post it and what people will think when they read, but with the intent of being brutally honest with what is going on at that moment in time. I wrote Tuesday as I was waiting. I decided that I would keep it to myself and not post it. I would like to say that for a lot of what I write, there is a part of me that thinks it is nobody else's business. Anyone who knows me well, knows that while I am happy to talk a lot and put out certain trivial information, I like my really personal thoughts and feelings to remain personal and private.

For the past eight months, I have discovered that keeping things private can be a very dangerous thing for me right now. When I keep them in, they fester and grow and I quickly go to some dark places that I find really scary. So, I write. And I put it out there as a way of throwing light on it and protecting myself. I know that some of the things I have written have worried, confused or even hurt the feelings of some people. That is not my intention. What I write, is what is true and happening in that moment. I don't write to or at people, I write out of myself. I don't filter. I don't go back a day or two later and read what is there. I don't edit. I don't worry about what people will think. I can't. Not right now. I need to be honest. It is hard enough to look at a lot of these things and admit them to myself, I can't let myself worry what other people will think or feel. For me, at this time, it is all about self preservation and my sanity. So I am sorry if I have hurt your feelings or if you took any offense to anything I have written. That was not and is not my intention.

I can't go through this on my own. I wish I could. I also find it difficult to talk about. I feel I am putting people in an uncomfortable place. I get self-concious and nervous and I can't always get things out. Writing is comfortable for me and I usually feel better, if not immediately, soon after I write things out. It helps me think, to look at my feelings and not let them boil and build into something more than they need to be. Thanks for reading my ramblings (and tolerating my numerous typos). I know they aren't very fun at the moment. I also truly am thankful for all the support from everyone in the many different forms it has come.

 

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My Week So Far

Tuesday, August 7, 09:30

Worthless. That is the word that keeps echoing through my head. It started when I woke up. I stayed in bed, hitting the snooze over and over, trying to find that place in myself that had a reason to get out of bed. I never found it. I got up only because I told Charise I was going to go to a stroke survivor group and she offered to drive me. I got myself into the downstairs bathroom and cried. There was no particular reason, it was just because of the feeling I have. The feeling of being worthless, having nothing to contribute, nothing to wake up for, nothing that motivates me. I feel empty, tired and so completely alone. I am tired of feeling alone.

I am waiting at the Senior Citizen's Center in Corona. Except for the two young volunteers at the front desk, I am the youngest by at least twenty years. I see future versions of myself and I have mixed feelings. I wonder what my life will be like when I am that age. Will I still have these feelings? Will I still feel this way? Will there be anyone around who cares or will even notice that I am here? And then I wonder if I will make it that far. I wonder if I even want to.

I am finding it impossible to connect the logic with the emotion. I tell myself I am lucky, it wasn't that bad and that things will get better. I put on a show for people so they feel comfortable around me. I try to make myself feel on the inside the way I pretend to be on the outside, but I don't know how.

Sometimes I wonder why I survived last December. I am not saying I want to die, I just want to know why I am alive. I have nothing to give. Surely there must be a bigger reason to stay alive than feeling empty and worthless.

Sunday is my birthday and I am dreading it. I don't want to do anything. I don't want any birthday greetings. I don't want gifts, texts or calls. I want to go someplace, disappear and shut everything and everyone out. But I can't. So I will pretend to be happy, pretend to be excited and everyone can feel great and I will watch them enjoying something and as usual, I won't feel it, but I will do my best to hide it.

13:00

I just had my first Stroke Survivor Support Group meeting. I wasn't keen on going. It knew it would mean admitting I had a stroke and I am not doing ok. I know I had one, I am reminded of it constantly throughout the day, but this meant admitting it on a whole different level. For the first time, I met people that had strokes. There were walkers and canes and wheelchairs, and most of them had their strokes years ago. The other youngest person was fifty. He is a former police officer who had a stroke from Ephedra, and it was his case that got the drug off the market. Years ago, he had to make the choice between being able to swallow and speaking. He, of course, chose to be able to swallow. He can speak, but it is harsh and raspy and hard to understand. His stoke was over ten years ago.

I looked around before the meeting started. Once it started, I listened to people. There was a man unable to talk. He had his first stroke twenty-three years ago. Another man has no short-term memory and kept repeating himself after a few minutes. People commented on how good I look, how they can't tell I have had a stroke, and that is part of my problem. Because I look like I am ok, people assume I am. On the outside, everything is great. Inside, I am totally fucked up and confused.

And every person has accepted what happened. I don't want to accept it, I want to get over it and get back to normal. I want to be the person I was. I want to feel intelligent, sexy, cute, funny. Instead, I am struggling to find out who I am and how to make all this just go away. I just want it to go away. I want my balance back I want to be able to ride a bike, to walk down the street and not sway as though I am drunk...

I looked at the other people in the meeting, knowing I should be thankful, but I just kept wondering if that was the fate waiting for me. I know that nobody knows what will happen in the future, but I feel I am part of the way there. Only a few months ago I was using walker and having help in the shower. I really thought that when I learned to walk and my vision was back to normal that things would be fine, but they aren't. The depression is eating away at me. I don't want to get out of bed. I don't want to take my aspirin or even eat. I do these things because people are around.

The other thing I have noticed, is since I have had the stoke, my emotions are much more intense. Maybe they were always this intense and I am just not able to cope with them, but instead of just feeling sad, I feel like I am plugged directly into the source of all sadness. I don't get little emotions, I get super intense ones and they overwhelm me. I constantly feel on the verge of crying. I want to make it stop and I don't know how. I want to make this all go away and I just don't know how to do it. Am I supposed to accept this as my fate? My destiny? Will I always feel like this?

Thursday, August 9, 15:00

After the meeting, I walked around. I simultaneously wanted to make some sense of it all and put the whole thing out of my mind. I felt numb and my mind was going in different directions. I kept walking, but didn't want to go anywhere, I such wanted to be somewhere else, somewhere away from my self and the thoughts and feelings. I ended up at Lamppost Pizza and soon Charise and the kids showed up. I was happy to see them, but also not as it meant putting on the happy face and pretending that everything was cool and I was cool and that all was right in the world. We came home and I went to bed. I needed to sleep, to escape for a bit and hopefully wake up with a new mindset, a different view and something resembling hope. I had dreams about possible futures and again, as I woke up thinking about my life, "worthless" kept playing in my head. The harder I tried to ignore it, the louder it seemed to echo.

Later that evening, I was just overwhelmed with sadness and at one point, Charise looked at m an asked if I was ok and I just started to cry. I hate crying in front of people and the embarrassment made me cry even more. Charise, as always, was amazing and just came over and put her arms around me. I am surprised that after all the times she has heard me talk about things and seen me around the house, she hasn't lost her mind or her temper on me.

I went back to bed for the night and was up ill a few times with my stomach, which still hasn't fully recovered. I had a headache and felt like throwing up, but I was too lazy to get up and go to the bathroom and concentrating on not being sick gave my mind a bit of a break.

I woke up yesterday feeling a bit better. I have been dealing with this long enough to understand it all cycles around, but the extremes seem to be getting more so. I don't remember the emotions being this intense. It frightens me a little, as my first instinct is to keep it to myself, not tell anyone what is really going on. I like my emotional privacy, but I also know that right now, keeping things to myself could be disastrous.

Now it is Thursday, and I am feeling even better, feeling like a person again. My confidence is not totally back, but it is increasing. Next Thursday, I will go to a doctor and see if I can get referred to a neurologist and also probably start one-on-one therapy to see if I can do something about these episodes. One doctor mentioned anti-depressants, but I really don't want to go down that path unless I absolutely have to. I know they take weeks to start working and can take a long time to get off of them. I am not really one for taking medication unless I have to, so I will see if I can take care of it without any medicinal help.

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Every Time I Say Goodbye

I have spent a lot of my life moving, which means I have spent a lot of it saying "goodbye". Something about that has bothered me for a long time, but I was never sure what exactly it was that bothered me, or why. But these past weeks, I have found myself examining my life more than usual. Perhaps it is being in familiar places that now seem foreign, or just merely the fact that I have way too much time on my hands to think about things I would normally put off until later. When it comes to certain things, I often tend to take the Scarlett O'Hara approach and commit to thinking about it tomorrow. Over the past few months, things tend to get in my head and stay there, waving banners and flashing lights, demanding my time and attention.

I always thought the saying goodbye part of my life bothered me because I knew I would not see certain people again or for at least a long time, but I have realized that that is just not the case. I am used to not seeing people. I grew up with people who are important to me being scattered all over the place. In fact, I have never been in the same room with my three sisters at the same time. Not once. It doesn't bother me, it is just the way it is and has always been and I don't know any different way.

What bothers me, I recently realized, is that not once, in any situation of saying goodbye, have I been asked not to leave. Most of the time, I wouldn't have stayed, but there are a couple of times when I would have, or I would have really thought about it. There were a couple of times I was waiting, wanting to hear someone ask me to stay, and I was ready to say yes, but it never happened. Maybe I wasn't asked for the same reason I never said that I would like to stay in case they would be open to that situation. It means putting it all out there. Even if it isn't the grand gesture of showing up at the train station or airport or knocking on the person's door after a change of heart, it means being vulnerable and risking the rejection or disappointment that might come.

Still, I wish someone would have asked me to stay. Maybe someday, someone will.

 

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Blue Sunday

The more I observe my life, the more loneliness appears as a constant thread that permeates everything and every moment. Since December, I find myself spending a lot more time observing the world and people around me, where I fit and how I intersect and interact with others. I wonder if other people feel the same way I do and just go about life dealing with it in a different way or ignoring it altogether. Does everyone feel alone as I do or am I merely missing something that everyone else has figured out? Or is everyone like me, putting on the shiny "I got it all together" exterior while inside, everything is as confused and tangled as ever?

I wonder as I sit observing people, watching them laugh and interact with each other. I wonder if that is what they truly feel or is it just some sort of show for the benefit of everyone watching or involved? I step outside myself and see myself making people laugh, being witty and sarcastic, being engaged in intellectual conversations, but I know it isn't real. I don't feel those ways at all. I don't feel funny or intelligent. I feel sad, empty and alone. I put an effort into how I look before I go out, but underneath it all, I hate my body that suddenly looks old and foreign and I don't like my face with my droopy eye. I pretend I am all better and none of the other stuff matters, but it matters a lot.

I am to a point now, where I am tired of merely feeling separate from other people, I actually want to be separate. I want to go away, spend time alone, not talk to or see anyone. Not for a few days, but for weeks, months even. Time to myself time to just be and not pretend. I want the time to lie in bed and stare at the ceiling without anyone asking me if I am ok. I am tired of people asking if I am ok or telling me I just need to get through it. I want to get through it, but I don't know how. I am feeling trapped in this body, in this skin, in this life and I don't know how to change it, how to break out. I don't know where to start. I know the saying "start where you are" but I am not even sure where that is. I don't know where I am. I don't know how to talk about it, I can barely write about it and what advice is out there anyway? People say I am brave, but I'm not. I want to hide under the bed, under the covers, in the closet. I want to stand in the shower for hours while the water washes over me, but I can't and I don't.

In retrospect, learning to walk again was one of the easier things I did this year. It was easy because there was a process, a a clear step one, step two, step three way of looking at things. Now I need to make changes and I feel I can't do anything but sit and look at things feeling overwhelmed and confused.

A cousin of mine thinks I should get some kind of post-stroke therapy. Maybe he's right. I haven't really dealt with it as I could have or probably need to. I thought that when I learned how to walk and my vision returned to normal that I would feel normal, or even better than that since I had made it though something. But I feel tired and confused and alone and something of a fraud. People say I inspire them, but how can I when I can barely get myself out of bed. And if I wasn't staying with friends, I wouldn't get out of bed. What is the point, really? Yesterday I tried to ride a bike, just for a few feet, and I was terrified. It was too much to take in, and I couldn't get the bike to turn right, it would just go left and after a few feet, I would stop it and try again. But after three or four tries, I was done. I was disappointed and felt like a failure. I just went to bed to sleep it off and only get up because company was here. And I feel I have become such a whiner and complainer, I am not sure why anyone stays around anymore. I feel I have become the same type of annoying, "poor me" endlessly looping monologue I hate from others. One part of me knows this is temporary, but it just feels so permanent and I really can't see a way out right now. I feel like I need a break, a break from reality. I would love to take some time away from myself. If only I could.

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Labels

Labels have never really bothered me. Growing up, I was bullied, called names and beat up on pretty much a daily basis. And that was just from my stepdad. School was a little better but not much and a big portion of my adult life has been spent in places where I stood-out, was watched, scrutinized and called many things, most of them nice, some of them not, but I grew to ignore and block out the names and labels, at least the negative ones. I didn't let them get to me and sometimes, wore them as though they were a comfortable shirt, like being the "gora" in India, a label/nickname that continues even now.

I am back in the US for an extended time and decided that as long as I am here, I should get some things sorted, such as my driver's license, looking into going back to school and getting insurance. After the stroke, I no longer live with the thought that I am invincible and nothing is going to happen to me. How I could have ever thought that in the first place is baffling, but I did and now I don't.

Yesterday, I went to sort out my insurances. I met with a person who could advise and enroll me in the appropriate insurance program. Then the questions began. At first they were easy, she asked how old I was, where I was born, if I had any children. Then she asked about income and employment and my living situation. Those three topics have bothered me for some time. I have been unemployed for close to a year, not sure if I am going to find a job with my current limitations, I have been living with friends, staying here and there, relying on the generosity of other people. My finances are arranged by a friend. I have no savings, no assets, no car, no retirment fund, no investments and no official address.

Then the words "homeless" and "poverty" were used. I know I am not homeless in the sense that I am not sleeping on the street, but in many ways I am. Ken and his family have welcomed me in with more warmth than I could have ever asked for and I know I am welcome here for as long as I need. I have never been made to feel in any way less than family. It is the same when I visit my sister in Vegas. The welcome is wonderful and I know I can stay long as I need. But there is something psychological about not having my own place, a space that is mine. Why I let the use of that word from a stranger bother me, I don't know, but it bothers me a lot, although not a much as the other label she used.

She never came out and said it, but after her assessment of my situation, she looked at her chart to see where on the poverty level I placed. Poverty. I never once thought of myself in that way. Never. But now that word is echoing through my head. It follows me everywhere. I feel like an idiot that I never realized it before. I knew I lost everything years ago. I knew I had no income. I knew I was being supported, but I never realized what that actually meant.

I spent my life working and acheiving. I wore Dolce and Gabbana suits, Prada shoes, Paul Smith ties and Tiffany and Co. cufflinks. I stayed in five-star hotels and drank champagne, ate oysters and bought art. I had an Eames chair, a Hastens bed and collectable books. Now all that is gone and replaced with the word "poverty." I have been called many things, but nothing as cold and cutting as a being labeled a poverty-stricken person. I don't know how I didn't see it, how I didn't realize it.

I am not even sure how I got to this point, to his place in life where things just ended up so completely different than they were. I wonder if I should not have gone to India. I wonder what decisions I could have made, should have made, but I know that none of that really matters. It isn't going to change the reality. I feel so embarrassed and humiliated and even more than that, I feel broken in a way I haven't felt before.

 

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Being Me

I thought writing yesterday would help me feel better. It usually does. This time, however, it resulted in a bad night's sleep filled with dreams I can't get out of my head, the kind that seem so real, you wonder if they actually happened. I am trying to keep it all together. Now is not the time to fall apart or get depressed. I need to focus and be productive, but I am having one of those days where getting out of bed is a chore. I woke up early but then willed myself back to sleep. A few more hours of daylight thinking to avoid. I think the reality of everything is sinking in. I keep asking myself who I am and I realize I don't have the answer. I am almost forty-five and I am still trying to figure that out. I lay out the pieces of my life to examine, the places I have been, the relationships, the jobs and anything else that might give some sort of evidence as to who is actually lying in the bed staring at the ceiling almost willing some sort of answer to present itself.

I also examine the pile of broken stuff that can never be unloaded. The broken dreams, the lost relationships and all the things that seem to overpower what good I can find. I once wrote that what I hated most hearing, was people telling me that everything was going to get better. The other thing I hate is people telling me they wish they had my life. They don't. Nobody really would. Yes, there are some pretty spectacular pieces, but behind all of that, there is a whole other world that nobody sees. Even in my most honest moments, I don't let it out or confide it to anyone. I learned a long time ago to show people just enough so they think they know you and will stop asking questions.

I think about these things as my almost forty-five year old self feels like it is drowning in an ocean of uncertainty. The one thing I always cherished in my life was my independence. These days, I have none. I don't have job and haven't had one in over eight months. I want to get a job, but have no idea what I can do. Being a waiter is not an option as my balance is still not reliable enough, and when things get crazy and too much input is coming my way, I get confused and panic. I read at the speed of a six or seven year old and that means a lot of office work is out of my reach for the time being. I have been and am being supported financially and feel guilt even when it comes to buying a cola with money I didn't earn. I wonder if I will ever be able to support myself again. And then there is the fear of being alone now. If I had been alone on that night last December, I would not be here now. I still examine every headache, every odd sensation to see if it might mean something serious. I have been around people almost non-stop since the middle of May and all I really feel I want is to be alone. But the thought scares me.

I am making plans, like starting the process for a driver's license in a week, and sorting out other things. I just feel like my life is a pile of Legos at the moment and I am not sure how to build them into something interesting. In an effort to meet people, I have gotten into the whole online dating thing. Not that I am dating, it is more I am chatting with people. I have met a couple, but usually when it comes down to meeting someone, I back out, make up an excuse and then wonder what is wrong with me. I just don't know if I feel like really engaging anyone. And worse, here in the US, people always ask where you live, what you do for work and what kind of car you drive. I don't have "acceptable" answers to any of those questions. It makes me feel worse rather than better.

I am not comparing my life today with my life in the past, but rather my life today in relation to what the options for the future are and I am not sure that is any better...

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July 22

When I left Tanzania just over two months ago, I knew what was going to happen, I had plans and some direction for my life. I was supposed to spend two months in the US visiting family and friends and putting all the drama of the stroke behind me. I wanted distance between myself and recent events and start over, a new page of a new chapter where things calm down and don't look and feel so crazy. I had a job in Brazil, a new country holding a new adventure. I spent my time in the US somewhat as planned, but also dealing with dramas I normally get to avoid. I am not sure if I like it so much, but it is what it is and I am trying to take it all in stride.

Parts of the trip have been great. Spending time with friends and family and reconnecting with people that are extremely important but who I don't really get to have real interaction with very often has been incredible and yet alien at the same time. I often feel uncomfortable being in close proximity to a lot of people. I sometimes don't know what to say and often times feel awkward and clumsy and am not really sure why. Foe the better part of twenty years, I have seen certain people only sporatically and now, suddenly, I am a part of the everyday goings on. While I have really enjoyed parts of it, it has also made me question so many things about life and myself. Even to the point where I haven't really written anything and I have barely kept in touch with anyone. I know people think I have forgotten them, but that isn't the case. I just feel a bit overwhelmed by things going on. It is a feeling I have felt for so long now, I am surprised I am not more comfortable in it. It makes it hard for me to focus and think and even harder to write a my thoughts seem to knot arond themselves and even I am not really sure what I am thinking about or want to say.

I didn't pay so much attention to it, as Brazil was always on the horizon. Since I have been here, my answer to everything difficult was Brazil. I didn't let things really bother me since I was going to leave them behind. And then, July 10, the door started closing and a few days later, I ended up writing a letter to the school explaining that I couldn't take the job. It basically boiled down to a visa situation that didn't work for the longer term and now I find myself here, in a country I never really wanted to return to, trying to figure out what happens next. I am not even sure how I feel about it and what feeling I am sure about are so conflicting and polemic.

Again, I find myself goin through things in life that nobody around me understands. There is nobody to bounce ideas off of. I don't think anyone has really understood how or why I have lived my life the way I have, and fewer that understand what is going on now. I am "home" in a place that doesn't feel like like home. Not that I am sure I even know what home would feel like anymore. I haven't really felt home for a long time.

So here I am in the US, trying to get things sorted and arranged and ready for whatever comes next. I should have my driver's license sorted in a few weeks and hopefully a job and then a place to stay that is something of my own. It is great staying with friends, but I feel the need for more independence. All this dependence upon people is taking its toll. I feel trapped and suffocated. My decisions aren't my own, they are formed by everyone helping me. I often feel like I am intruding or imposing. So many people are helping and I am so grateful, but I feel I have nothing to offer back. Honestly, it all scares me. I was in San Francisco and there were so many homeless people and I realized that there is only a thin, frayed thread separating me from them. I am so aware how close I am to being in that situation and internally, I panic. I don't tell anyone. Who would understand? I often wonder if that will happen to me, if I will end up on the streets and I wonder if I will survive it if it does. I know I have places to go, but I also know that sometimes accepting help is one of the most challenging things of all, and sometimes having all this help is making me feel helpless.

That is what has been going on, although I am not sure how much sense I made. If I haven't been in touch, it is not personal and has not really been intentional. I still struggle with letting people see the darker parts of my life and I still tend to pull back and keep it all to myself instead of putting it out there. Instead, I put on my smile, I tell some jokes and only let down the guard when I am alone. The truth is, I am terrified. I try to see the light at the end of the tunnel and I just don't. I talk as though I do, because I have to, but the truth is, I just don't see it. Not yet.

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Going Back

When you are having mixed feelings about going someplace, even the shortest trip can seem long. When that trip is over 30 hours door to door, it can seem eternal. I left Dar just over two weeks ago to come to the US. The first stop was Vegas to see family and try to get reacquainted. As I have written about, there is some distance between my family and I that goes beyond time zones. In the past, I have pretty much done my own thing and seen my mom and sister for short periods, usually a lunch or dinner and left it at that. This trip, I decided to put more priority there and spend time with family. I knew it would probably be awkward and uncomfortable, but after everything that has happened in the past months, I truly know how short life can be and how quickly it can change or even come to an end. So for the first time in over twenty years, I was going to visit my mom and stay in her house.

When I arrived, it felt awkward and uncomfortable. I didn't know what to expect, what to say or how to act. Many people in my family have watched my life and don't understand, it is hard sometimes to talk about it as it quickly gets interpreted as showing off. They think my life is great and problem-free and don't see the reality just below the surface.I also get the feeling a lot of people just don't care. If you were to ask them what was really going on in my life, beyond the stroke, I doubt they would be able to give an accurate answer. It hurts, but maybe that has also just been how it has always been, so instead of forcing my life onto them, I keep it to myself or write it in a blog that I know few of them read.

 

And I can't put the blame all on my family. I don't share things and keep them at arms length for a number of reasons. I don't have to worry about boring anyone, and I don't have to be hurt when there is no interest in what I am doing or how i am. And it isnt limited to my family, i notice it in many places. I used to think I was over-inflating the issue, but now I am not so sure. I am happy to go most of the distance, but when I fly half way around the world, I expect people to go the last mile. I need them to do that. Do I really need to come for a visit and then ask people to spend time quality time with me? I am in a place for a limited time and right or wrong, I won't beg people for time in their schedule. It actually makes me wonder what I am doing and if maybe I should just make other plans and forget about giving anyone priority.

 

I find myself feeling lonely and somewhat depressed. Am I doing something wrong? Am I intruding? Is this just the way people are? Am I just seeing for the first time the way this have always been? I don't know how to address it. I don't know how to bring it up, and so here it is in a blog post and maybe someone will read it and get it and do something different. Maybe they won't. Maybe my expectations are too high. Maybe I should just let it go.

 

Whenever I being it up in conversation, it backfires and things end up being worse than before. Since I am only around for a few weeks, maybe I should just ignore it and try and make the most out of it. Maybe i should care. I wish I knew what the answer was. Part of me wants to hit it head-on but then I am afraid of feeling more alone.

Maybe I am trying too hard to go back to a place that was never really there...




 

Going Home?

In just over a week, I will be on my way to the US for an extended visit. I am both dreading and looking forward to it. Looking forward because I will get to see friends that are very dear to me and spend time with my family and mom. I am also dreading it, as I will spend time with my family and mom. It’s my catch-22. Don’t get me wrong, I love my mom and family in my own sort of way, but for the most part, I don’t feel connected to them. I don’t think I ever have. I have never really understood them and I doubt they have ever understood me. Even when I was little, I was convinced I was taken home by the wrong people and that my real parents were out there, somewhere, having incredible adventures and looking for me. Sure, we all look somewhat alike, but other than that, part of me still wonders.

I wasn’t the normal kid. I didn’t like the things other boys seemed to like. Cowboys and Indians and cars and sports just never interested me. What did interest me, were the pictures in the National Geographic I would sometimes see and the encyclopedias my mom bought when I was five or so. Pictures of far off places and people unlike any I saw around me. England. India. China. Kenya. I didn’t just love the pictures, I wanted to be in them, to live in them. I wanted to see those things for myself. My grandmother on my father’s side traveled her whole life and I would hear stories about places like Australia and her house was filled with antiques from Japan, most of which she probably would not have been allowed to take out of the country today. I grew up with a sense that my life was bigger than where I was. I knew that somehow, my life would happen someplace else, someplace far away, in the pictures I would see in my dreams.

For a while, we lived at the edge of a forest and beyond the forest there was a swamp-like area. I would spend hours exploring, imagining I was somewhere, anywhere but where I was. One day it might have been the Amazon and I was looking for the indigenous people I had seen in National Geographic. Other times, I went looking for leopards or hunt for some lost treasure. When I was thirteen, I saw a movie that changed my life and for a time, I not only admired, but also wanted to be, Indiana Jones.  I was desperate for adventure, for life. I wanted to see the world.

After my parents were divorced, my mom remarried and my experience with my stepdad was, terrifying, isolating and confusing. We could not have been more opposite and the hatred I felt could not have been more intense. My only escape was into the world in my mind. My dreams and ideas were my friends as I just didn’t and couldn’t relate to other people. I didn’t know how and I didn’t want to, really. People caused pain but the life I was going to lead, the one I had in my mind, made me happy and kept me going.

I left my mom and step-dad’s house and soon as I could and never looked back in spite of my stepdad telling me I would not last for three months on my own, that I would never be anyone, that I would never amount to anything. At the time, I believed him, I had been told those things for years, knowing that happiness, success and love were not for me, but something inside kept me going although I am not sure what it was. Youthful naïveté? Perhaps the feeling that I really had nothing at all to lose?

I spent the last twenty-six years putting distance between that person and the one I am today. I have been to many countries, lived on four continents, learned languages and experienced not only some of the things I saw in those pictures, but so many other things I never imaged possible. I have been to the Taj Mahal at sunrise, gone mountain biking in Nepal, meditated in the Himalayas, photographed animals on safari in Kenya, walked on the Great Wall of China and spent Christmas Eve in Bethlehem, just to name a few things I have been lucky enough to do. I have done more than most, not as much as some, but definitely more than most. Yet, no matter what I do or experience, there is still that part of me hungry for more. In a strange way, it seems the more I do, the more I realize there is just so much more out there yet to be done. And there are already plans in the works.

But first, I am heading to the US feeling excited and apprehensive. I have been back to the US several before, but only for short durations and I have never had the thought or feeling that I am going home. It has never felt like home me. Ever. This time, I am going back for an extended time, and I have kept visits with my mom confined to short episodes, usually a lunch, dinner, or drinks. But this time, for the first time in over twenty years, I will stay at my mom’s house. It is still over a week away and I am already nervous and can’t sleep. We’ve had our issues and basically worked them out as well as they need to be when there are a dozen time zones in between. And having all those time zones between us, means being excluded from family drama. I know I am going to be landing in the middle of it, and it is a big mess. We will be close enough to fight for the remote and I am not sure how it will all work out, but there are answers I need to questions that have followed me around the world.

In spite of what my stepdad said to me so many years ago, I have had happiness, success and a lot of love. I have also had this fear of going back, as if going back means an admission of the failure he talked about. I know that isn’t the case, but in so many ways, it feels that way. But that is exactly the reason I am doing it. It’s time. It’s time to put those thoughts behind me and leave them there. At least it’s time to try.

And I have the knowledge that I have another, new and fabulous adventure in my back pocket, just waiting for a departure date to be made known. 

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?

Getting Fit

A few weeks ago, I decided it was time to hit the gym and start doing some cardio and weight training. I have always been an active person. Even when I wasn’t in my best shape, I had no problem rollerblading long distances or spending entire days on my snowboard, resting only on the lifts. Last summer, after more than a year spent being pretty lazy, I hiked a thousand meters up Mount Kilimanjaro without any problem. Back in Amsterdam, I was addicted to spinning class. I could no get enough of it. Forty minutes of an intense cardio workout left me hungry for row and at one point, I was doing it twice a day. Going back to the gym was going to be a piece of cake.

I arrived the first day and made my way to the orbitron machine. I decided I would start with fifteen minutes at level one since it was the first day and I didn’t want to overdo it. About two minutes into it, I was really struggling. My whole body was screaming out and finally, after three minutes, I stopped. I could feel my heart breaking through my chest and my neck and ears were pounding with my pulse. It took me about ten minutes to catch my breath after that. I was beyond disappointed. I didn’t expect to do my old levels and times, but three minutes at level one was, for me, a personal disaster. I has spent the month exercising at home and walking, so I really didn’t expect it to go so bad.

After catching my breath, I decided that some weight training was in order, but that went almost as bad as the cardio. What was supposed to be cheering me up and moving me forward was doing the opposite. It was showing me just how much I lost and how different I really was. I knew before going that the average stroke survivor has about half the amount of an out of shape, non-stroke survivor of the same age. I knew this, but I was positive it had nothing to do with me. I was different. Less than twenty minutes at the gym, of which about six had been used for actual low-level punch me in the face with the facts about myself. I was upset and angry for about five minutes and then came up with a plan. I realized I could only do what I was capable of doing. In recovery, it is important to push yourself, but you have to be very careful not to push too hard, as it can have negative results including overworking the heart and injury due to fatigue. My plan was to focus on cardio, each day going as long as I could and then going an extra thirty seconds. I would stay at level one and follow a steady pace I could maintain.

Three weeks later, I am up to one hour of cardio and now I am increasing levels and making it more challenging instead of increasing the length of time. Am up to level three on the orbitron, which I now do for twenty minutes before hitting the treadmill for forty minutes. I can’t run yet and I need to hold on while walking most of the time, but can go thirty seconds here or there without balance issues. Next week I will start weight training and hopefully, with my improved cardio condition, that will do better.

I also tried swimming at the gym, and that also didn’t go as planned. Since I started walking again, I have had to concentrate to correct the pull to the right. If my legs had it their way, I would walk diagonally to the right. Whenever I run into a wall or door, it is always on my right side, on the days I have less control over it. Swimming also no longer happens in a straight line, but rather, a pull to the left. I tried to swim a lap and I started near the near right corner.  A short time later I found myself in the far left corner. I had noticed this once before at the beach, but attributed it to ocean currents and didn’t think anything of it. Now, I have tried it several times and if given a large enough body of water, I know I would swim in a gigantic, counter-clockwise circle. There are no lines on the bottom of the pool, so I am at a loss for ideas of how to correct it.

My other gym struggle is my belly. I have never had one before, but I gained thirteen kilos (about twenty-nine pounds) in January. Back when I was going to the gym everyday, on a weight-gaining diet and drinking protein drinks, I only managed five kilos in over six months. Thirteen kilos is a lot of weight for me. I do like how it looks in the face, I just want to get it off my belly. I am very self-conscious about it. A lot of my clothes no longer fit and it is getting on my nerves.

I still don’t ever feel full, so I have to be very careful not to eat whenever I feel like it, or I will eat all day. I am hoping that soon the cardio will start taking care of some of the weight, but for now, it is holding stable. I wonder if this is a temporary situation or if I will now have to be careful with food.

Long story short, things are still heading in a good direction. Thursday, I am going to Cape Town and I am really looking forward to the change of scenery and of course visiting a new city in a new country.

Going Good!

Yesterday, I had an appointment with both my medical and eye doctors. I was nervous, as I had just come out of an emotionally and often physically difficult couple of weeks. I had no idea what the doctors would say, if I had progressed or if some things had gotten worse. I didn’t sleep much the night before. In fact, I often lie awake at night thinking about it all. Some nights, I concentrate on my body, noticing every minute detail that seems odd or out of place. When I find something, I wonder what it means. My biggest fear is still that I will have another stoke. Statistics say that ninety percent of stoke victims have another one within the first year following the initial stroke. I am doing everything I know to beat those odds, but still I think and worry. It has been two months and I am one-sixth of the way through the year. While never having been one to wish away time, I just want to get to 2013 as fast as possible, without another episode.

My doctors were both happy with my progress. There is still a long way to go, but I am heading in the right direction, and faster than they thought. The best visit was with the eye doctor. I had not seen her since early January, when I was really struggling and barely able to walk, even with the walker. She was very surprised when I walked in yesterday and that really made me feel great. The look on her face was amazing and made the difficulties of the last eight weeks so worth it. The swelling in my eyes and the pressure from my brain is gone, so now the remaining issues with my vision are brain related and will take some time, but she said I was healing faster than she expected. I have always loved proving people wrong, but never more than now.

While medically I am doing very well, other aspects are taking longer. I don’t like and can’t relax in crowded places. I don’t like to be around children or animals due to the unpredictability of movement and sound. I don’t like unfamiliar places. I am not very social these days and often feel very awkward. With certain people and in small groups, I am fine, but in a larger group, even if I know everyone, I feel myself crawling into a mental ball and hiding. I do sometimes force myself into these types of situations, as I am not about to become a person afraid to go out and I also know the only way through it is head on. But still, often times the fear wins. I have done the research and know why it happens, but these days, logic takes a backseat to emotional and instinctive need.

The thing I hate most, is people looking at me. When someone looks my direction, I feel they are looking AT me. I know they probably aren’t, and even if they are, I know it shouldn’t bother me, but I really can’t stand it. I am very self-conscious when I go anywhere and even if someone looks at me, or even through me, it makes me want to hide. Even if I am sitting down eating, I feel all others can see is a defective person and I want to scream. The old me loved attention, even actively sought it out. Now I prefer to avoid it. I know it is all in my head and I am making a big mountain out of a few grains of sand, but again, logic doesn’t help at the moment and I am putting myself in situations where I just have to deal with it and get past it.

So there is still a lot to deal with and figure out in the coming weeks and months, but the train is on the right track and chugging along steadily.

The End of the Beginning

I almost didn’t write that last post. I just felt that I didn’t really have anything positive to say at all. I was feeling down, frustrated and confused and against what I was feeling, I decided to write about what was going on and post it. I am so glad I did, because it has made a huge difference for me.

A comment was left by Rick, which reminded me of something I read when I first started reading about strokes, while I was still hooked up to IVs just a week after everything happened. In my usual all or nothing way of doing things, I started reading not just one book, but three. I was desperate to make some sense of what was going on and what was in store. And, of course, I was looking for the quick solution that would have me on my feet and back to normal in the shortest possible time.

In the book titled “Stronger After Stroke” by Peter Levine, I read all about my current situation, but what I read got lost and buried under the mountain of information. But thanks to Rick’s comment, it all came back and I realized what was happening.

A huge part of recovery involves what is known as “neuroplasticity”. Which is basically a rewiring of the brain. This is what allows the brain to re-learn functions that would normally be controlled by other parts of the brain, which are no longer functioning. It involves a lot of patience and repetition, not unlike learning a new language or how to play an instrument.  

A stroke kills cells in the brain. It is those dead cells that create all sorts of problems, in my case, walking, balance and other things. Just outside the dead zone is an area known as the penumbra. The penumbra is an area of cells that have been “stunned” during the stoke. They aren’t dead, but they aren’t working either. Whether they live or die depends on a number of factors including medical treatment. The stunned cells can become active again anywhere from a few hours to a few months after the stroke. As they become active, the areas of the body those cells control can experience some rapid advances during recovery. Each day, I saw improvements and it was great for my recovery ego and motivation.

Once the stunned cells have reengaged, the rapid part of the recovery can come to what seems like a grinding halt. It is a time when many people get frustrated and even give up. It is a feeling I can completely understand. In my case, each day seemed to hold huge jumps in my progress and then two weeks ago, I hit a wall.

Two weeks may seem like a short time, but when you are recovering from anything major, and the feelings that come along with it, two weeks can feel like an eternity. I spent each minute stewing in the depression of not moving forward and imagining my life with disabilities. I have never needed glasses and I found the whole idea of life spent in this condition difficult to accept and understand. I would try to walk and hit walls. My vision was getting more and more doubled by the day. I got to a point where I just stayed in bed. I would wake up to find I had been crying in my sleep.

Then I read that comment and it triggered a memory. It took me a bit to search and find what I was looking for but after reading it, the understanding fell into place and I realized I was at a major fork in the road. Recovery would not be easy anymore. It is strange to think that weeks ago I thought and blogged about my recovery and how it was going in baby steps. Looking back, it was taking place in leaps and bounds. As the book explained, it is not the beginning of the end, it is the end of the beginning and now the real work will start.

On Monday, I joined a gym and have started working out with weights and machined to push my body in any way I can. I know results will come in millimeters and at a snail’s pace as the main work of rewiring my brain starts, but as long as it comes, I can deal with it.