Tuesday, July 12, 2016

My back story: one beginning.

I fell to the floor in agony and for some minutes I could not get up. That is one beginning of the story. The analogies pale beside the reality. The pain was like a dagger of fire stabbed into my back. I have never had a blade of flame plunged into my spine, I have only experienced that pain, that sudden, all-consuming, agonising, incapacitating pain. Like being shot in the base of my spine, like a bullet entering and exploding inside my back. But I have never been shot. I am painting a picture, I am drawing with words, I am gesturing in the direction of what it was like. To help you understand. To help myself understand. But there are no words for what is was like. I can't know if it was like these other experiences I haven't had. I only know it was what it was. It was pain.

Twelve years ago today I bent over to pick something up in my hotel room in Bangkok and I fell to the floor in agony and for some minutes I could not get up. I am writing about it here today because I need to tell one beginning of this story, my back story. Every story has many beginnings. That day in 2004 I was in Bangkok to attend the International AIDS Conference, where I was both working for an NGO and exhibiting some posters on my academic research. The opening ceremony of the week-long conference had taken place the previous night and this was the first morning of the conference proper. I had been up quite early, downstairs at the computer, working. Back up in the hotel room, still early in the morning, I was at one side of the room, near the door and the wardrobe, preparing to go downstairs to catch the early morning bus to the conference venue with a friend. I was alone. I bent down to pick something up off the floor, I think it was a small black bag. I was knocked down by the sudden, excruciating pain in the base of my spine, a little to the right side in my lower back. I fell onto the floor. I may have blacked out for a moment, I'm not sure. I remember the image of the thing I was reaching for, then I was on the floor in agony. I was lying on my side, but sort of face down, sort of bent over. The pain was completely unexpected and all encompassing. For a while the pain didn't stop. It went on, at that intensity, that agony, that unbelievable level, for minutes. After a few seconds I thought it would lessen, that it must stop, that the pain could not go on in that way. But it went on. Some part of me was thinking, it's not possible to experience this kind of pain for more than a moment, it must get less. But it didn't. It was if something was exploding in my back and was somehow continuing to explode, remaining at the same level of explosive pain, without increasing or lessening. It was pain.

After that a lot more happened. Details, some preposterous, some predictable, medical intervention, non-medical intervention, understandings, misunderstandings, greater understanding, greater mysteries, highs, lows, it continues. Twelve years later I'm in a very different place. The back problem is still with me, but much, much less, and I have a chronic pain condition associated with it. That's an ongoing story. That first day? One of many beginnings? Here's how it went.

After some minutes the pain did lessen, and then lessened much more. It had been shooting pain down my leg and up my back, it was concentrated in my lower right back but spread elsewhere. I don't remember now exactly what happened next, that morning, the rest of the day. When I feel more able I will look again at what I must have written about it, then, shortly after. In the hotel room alone, lying on the floor at first unable to move, I kept thinking that I had to get help, that I had to reach my friend and colleagues who were downstairs in the hotel. As the pain lessened I somehow crawled on my side across the room towards the bedside table where the room phone was. It seemed extremely important that I get to the phone. Unable to get up from the floor I reached up and pulled the receiver and then the whole phone down onto the floor. I don't know who I was trying to call, as my friend's mobile phone probably did not work in Bangkok, and if I called Hotel Reception how would they reach her anyway? Perhaps I thought that Reception would help me. I don't remember now if I got through to anyone on the phone. It seems unlikely. The pain was less. Eventually I managed to get up, onto the bed, after some time I could sort of stand. I felt desperately that I had to get downstairs, to my friend, to the bus which was leaving for the conference shortly and without which I would be stranded alone in the hotel for the entire day. The conference was a huge one - around 20,000 attendees - and the venue was far away in Bangkok traffic. I was convinced I had to reach a friend or someone before the bus left, to get help, to tell them something was wrong with me. The pain was less now. Somehow I got up, somewhat bent over. I think my back muscles had gone into spasm and my back was somewhat immobilised and this was helping. I must have managed to take my bag, or something, some papers, something. My boss was giving a speech that morning and I was still concerned that I had to get her on paper the final edits for her remarks, which otherwise she would not have. That seems crazy now but at the time it just seemed like part of my job.

I do not remember how I got out of the room, but I remember being in the corridor outside my hotel room door, holding on to the wall, trying to hold myself up, not able to straighten, the pain coming and going, and looking along the corridor towards the exit. The corridor seemed endless. I remember gripping the wall, which didn't have much to grip on to, and making my way painfully slowly along the corridor. I have only flashes, broken images of this process, intermittent snapshots as I made it further and further along the corridor and eventually to the lift. Downstairs I made it across the hotel lobby, I could see the bus outside the glass on the street, I made it outside, the bus was about to pull away! I tried to wave, gesture, I could see my friends on the bus, they started to bang on the window, they got the bus to stop. The door opened, I hobbled towards it, there was no time to explain, the bus was full and running late, I had to just get on the bus. It was a large coach, I somehow got up the step into it, the doors closed, it started moving off. My friends, unaware at this stage that anything was wrong, were greeting me from the near the back of the bus, where were you, we thought you were going to miss it. I pushed myself slowly along to them using the backs of the seats and sat into a seat next to my friend. I was in too much pain to speak. I was so relieved to be with my friends but now trapped on the bus for who knew how long. At some point in the room or on the bus I took an over the counter pain reliever that I had in my bag. It was Aleve, naproxen sodium was the active ingredient. I could not fully sit down because of the pain and had to keep pushing myself up off the seat using my arms. Each bump in the road was more sharply painful. I explained what had happened. My back, I said. My back. Clearly there was a serious problem but I had no idea at this stage how serious it was.

When we eventually arrived at the conference - it was some time more than 30 minutes, but probably less than an hour - they got someone to come with a wheelchair. I was helped off the bus. We were in a carpark, a dusty lot, surrounded by other coaches, quite far from the massive conference venue. With some difficulty I wrote a note on the speech for my boss, and gave it to my friend with instructions, that she must just go up to her before the talk, that she must give her the notes. She was great, she did exactly that. Someone took me in the wheelchair to the doctor on the conference site. My friends had had to leave to go into the conference. The conference doctor checked me over. He was Thai and his English was pretty good, unfortunately my Thai was non-existent. He gave me some medication. As I was about to take it he asked if I'd taken any other medication, I remembered I'd taken the naproxen earlier. Do not take, he said, taking the medication away. Very dangerous. Very dangerous, he said, with naproxen. Then he said, the naproxen is better. Evidently it was not advised to take the two medications together. I think they got a taxi to take me back to the hotel. I was met with a wheelchair there. I got back to my room. I passed out on my bed for several hours.

In the evening the hotel manager came to my room, having been told what had happened. I was still in a good deal of pain. I had been alone and unconscious much of the day. He called an English speaking paramedic. This paramedic examined me and told me I definitely had to go to the hospital. Because of the pain into my leg it was clear something had happened to my spine. She called an ambulance. I wrote a note to my friend, I remember I repeatedly wrote, don't panic, I'm at the hospital, don't worry, try not to worry. I imagine this was not in fact reassuring. The ambulance came, I was probably taken to it in a stretcher, I don't recall. I remember that it was only when I was lying in the back of the ambulance going through the streets that I thought, hmm, I'm being taken by ambulance to hospital in Thailand, this could be quite bad. Of course the hospital was great, excellent staff, spotless, efficient, well-equipped. I was seen fairly quickly by an orthopaedic surgeon. He seemed excellent and I was impressed that he was there seeing patients at what at this stage was quite late at night. Later I remember in his report he wrote "she could barely turn in the stretcher". Because the pain was going down into my leg especially it meant there was a problem in the spine. I'm not sure if I knew, or they knew, what the problem was at this point, although perhaps they did, or suspected. I realise now, 12 years later, that I don't remember exactly when I found out what had caused the extreme pain. They did an x-ray at some point. I remember the radiologist or a nurse, whoever the relevant health professional was, saying to me, over and over again, "congenital, congenital". That person didn't have much English unfortunately, so we could not communicate well. That was pretty much all they said. I lay alone in pain in the hospital in Bangkok being told there was a congenital problem with my back. At some point I discovered that what they were talking about on the x-ray was spina bifida occulta, a relatively unimportant issue where a vertebra forms with a gap in it. Something other than that was causing the pain. I was admitted to the hospital overnight.

In the morning I was taken to a different hospital for MRI scans of my back. They did scans of the entire back, three sections. This took over two hours. Being inside the MRI machine for that amount of time was, frankly, awful. I had never had an MRI before. I was in pain, lying on a metal tray, inside a tiny tube, in semi-darkness, partially strapped down, with the immense noise of the machine all around me. I was not supposed to move during these two hours. Occasionally the operator would come on the sound system to admonish me not to move, or to tell me not to "make water in my mouth" i.e. not to swallow. The pain worsened throughout the time inside the MRI machine. I used every relaxation technique I'd heard of, every form of mental distraction, every kind of meditation I knew, to get through the mental and physical pain of the two hours of scans. When I came out I cried. Of course. During this first day I also laughed quite a lot. I was still in pain. I was taken back to hospital.

From the MRI we got an answer. I had a herniated disc in my back. In essence this meant that one of the discs that lies between two vertebrae in my spine had ruptured and a piece of it had stuck out and pressed directly on the nerves in my back, causing the agonising pain. It had been a little over a day since the problem began.

That is one beginning of my back story, one way to understand how it started. The explanations, the lack of explanations, the (mis)understandings, the consequences, the responses, the next chapters, all came later. Those stories are still being told. There are other beginnings too. They are stories for another time. My back story goes forward.


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