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.