Stroke

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Editing...

Once again, for the second time in 18 months, I am editing my life down to 30 kilos of stuff, the maximum allowed by the airline. It is odd to me that after spending most of my life collecting and hoarding things, I find it incredibly satisfying to let go of things. The first time I did it was terrifying. I was scared that it would feel like cutting off a limb, giving up a part of myself. And the truth is, it was not at all like cutting off a limb, but very much about giving up a part of myself.

It is amazing to look at things, and they are just things, and ask if it is really important, if it really matters in my life or in the whole scheme of things. I find that what I hold onto are not the things of monetary value. For the second time, those are the first to go. The things I hold onto are the ones with memories attached. The chops I bought in China when I was there with Ulco and Ann and the Buddha that Mark gave me as a gift from Thailand. As objects, they are worth very little, but to me, they are priceless. They are a record of my life, where I have been and reminders of my friends.

I think I will make this a yearly ritual. Not moving,  but editing my life and separating what is important and what is just lingering and cluttering. And the weird thing in all of this, is that I find I get so much when I let go…  

Just Another Day In Class...

Have you ever had one of those days when you just “had it up to here?” I had one of those days on Tuesday. I was in class, trying to teach English to a group of people who, for the most part, aren’t that interested. They go because they have to. Universities require students to pass grammar exams, and a lot of companies require some level of English. So, for the most part, they don’t want to learn, but they have to. So they do the minimum to get by and then spend the rest of the time either not coming to class or speaking Turkish in class, which is completely counter-productive to learning a foreign language.

I have also learned that many Turkish people, at least the ones I get in my class, are extremely prejudiced about anything and everything that doesn’t fit into their box of what they consider acceptable and normal. They seem to hate Arabs, Jews, gays, Kurds, black people, and the list goes on. Bring up one of the many things they don’t like, and off the go on a verbal marathon, sometimes in English and sometimes in Turkish.

So, back to Tuesday. We were reading a text from an anonymous source. I asked them to tell me about the person who wrote it, based solely on that piece of text. Was it a man or a woman? Age? What words would they use to describe the person. So during the question and answer period, one of the students, one of my favorites, in fact, who I will call X, suggested the person might be gay. People laughed and I heard a few people go off in Turkish. I didn’t understand what was said, but tone of voice and laughter were enough to clue me in. Later, after they had told me all about the person who wrote it, I came clean. “I wrote it”, I told them. And then X apologized about suggesting I might be gay. Again laughter and a lot of talking. So, in front of the whole class, I said “No problem, because I am gay.” At first people thought it was a joke, but after a few seconds they realized I was serious. Suddenly, they were uncomfortable. And we had two and a half hours of class left. They were silent. I looked around the room and asked “So, is there anything anyone would like to talk about? Anything at all?”

“Yes, there are a lot of questions, but nobody will ask you” was the reply I got from X. So, I sat there and let them marinate in their discomfort. It felt amazing. X kept laughing, not at me, but at the reactions and attitudes of others, and I thought the whole thing was great. I don’t mind if people have something to say about me, but say it to me, not behind my back or in a different language. And I hope that next time they decide to spew out a racial or any type of hateful slur, they will think twice about who might be in the room with them.

I wasn’t pushing an agenda, in fact, after living so many years in countries where it is either not legal or not accepted, I am used to being discreet and keeping my private life private. But sometimes, you just have had enough. And on Tuesday, I had had enough. I am sure it is all over the school by now, but I don’t care. And the other teachers are super supportive and agree with what I did.

So, as a follow-up on Monday, the class and I are going to have a conversation about prejudice, any prejudice, and since we are scheduled to do a lot of writing this week, I will have them write essays about prejudice, the problems they see, what they think should be done about it and what they personally can do in their own lives to reduce it. As Gandhi said “Be the change you wish to see in the world.” I am not trying to change them or convert anyone, but I am trying to get them to think, even if just a tiny bit. 

The Sound of Silence

First, I want to thank everyone for the wonderful comments and emails I received from my last post. They all really mean a lot to me and tell me I made the right decision. I was scared to post it. I am a person who has spent a long time building walls, and posting that last entry meant tearing at least some of them down. Sure, parts of them remain, but now, instead of being like a fortress, they are more like the old ruins or remains seen in places like Istanbul. Portions are definitely still standing strong, but I am no longer living in my fortress. I was scared of what would happen and what people might think, as it is so opposite to how most people know me. Or maybe how I perceive most people know me. But that was exactly the reason I needed to do it. I have been asking myself these types of questions for years, making small changes here and there, but now I feel the time for baby steps is over and it is time to climb my personal Kilimanjaro.

I have done a lot of reading over the decade and one thing that kept coming up, was the need for silence. Not the silence which is an absence of sound, but a silencing of the mind. When I was in Tanzania, the internet connection kept going out, sometimes for a week at a time and I was basically out of touch with the outside world. At first I felt angry. And then I realized it wasn’t really anger, I felt uncomfortable. My world is so full of “noise.” I wake up and before my feet touch the floor, I grab my laptop, check emails, Facebook and news, and then maybe send some text messages and it all just gets more cluttered and noisy from there. Who am I and what do I do without the Internet and Facebook and all the rest of my daily distractions and activities? The break from the Internet was odd and uncomfortable. But only for a couple of days. Then, I started walking on the beach. Normally when I go anywhere, I have my iPod playing my soundtrack of the day, my phone in my pocket in case someone, somewhere should need to get in touch with me (even though only five people had that phone number) and my camera around my neck as I scanned my surroundings looking for photos waiting to be shot. But as I explained in the last post, theft is a problem there and the beach I would walk was notorious for tourists getting robbed. So I took nothing, not even my sunglasses to hide behind.

So on the beach without the normal accessories of life, I had plenty of time to think. When I got back to the house the first day, I realized I had spent the entire walk in the past. My childhood, decisions I had made, things I could have, would have or should have done. I gave myself an eloquent lecture about where I had gone wrong, not just once, but so many times.

The next day, it was the same thing again. After a couple of days, I realized that there I was, on a gorgeous stretch of white beach, palm trees blowing in the wind and the Indian Ocean next to me and I was not even there. I was in the past reliving my failures and shortcomings, mistakes and regrets or the future which was a mix of confusion, fear and the hope of dreams that may or may not true. In reality, I was in a truly beautiful place but realized I was not “there” at all, I was anywhere and everywhere but on that beach.

I had also received a Kindle for my birthday and one of the first books that ended up being added was from Eckhart Tolle, “The Power of Now.” Normally I fly through books, but I decided to take this one slow. In fact, I have still not finished it.

The idea of Now is so simple and so silly and so obvious that I just never got it or even thought about it. I am sure people who have known me awhile can back me up on the fact that I spent a lot of time in the past and future and very little, if any, in the now. Even when things were great in my life, I dreaded my uncertain future and was scared of what I felt was impending doom.

So I learned to recognize when I am not present. I often catch myself in the future, getting all worked up about something that actually, isn’t even real, and now, instead of dwelling on it, I realize what’s happening and direct myself back to the present moment. I do the same when I start to punish myself about past decisions and mistakes. They are over, finished, and there is nothing I can do to change them, so I stop myself and come back to the present. Maybe it sounds silly. It sounded silly to me when I first read about it, but the more I paid attention, the more I realized what I was doing. And the more I pay attention, the more I see that most people are doing the same thing.

And that for me, was one of the first steps in deciding to live. In order to live, I need to be in the moment in the Now. It isn’t always easy, breaking habits that have gone on for decades, but it is far easier than I imagined. It just takes a little practice.

Walking on the beach, being completely present and not thinking became one of my favorite daily experiences. I became addicted to the sunlight dancing on the water. It was hypnotic. The waves came in a musical rhythm and everything just seemed so, alive. Maybe it was my imagination, but the blues of the ocean seemed just a bit bluer and everything just seemed to be perfect, exactly as it was supposed to be in that moment and I would find myself smiling for no particular reason at all.