Trigger warning for discussion of suicide.
This summer, two well-known ME patients, Theda Myint and Thomas Hennessey, took their lives.
I didn’t know either of them personally. Theda was well-known through her “Help Theda” facebook page, and was a very severe sufferer, confined to bed. Thomas was well-known for his ME/CFS advocacy – he was the founder of RESCIND and devised our awareness day. He was dealing with very severe pain on top of decades of ME/CFS. Because I wanted to be supportive in a small way, I had liked Theda’s page with my blog’s facebook page, and so she would have more fans, with my personal account, too. But, I confess, I had configured the settings so I wouldn’t see her updates in my feed unless I went looking for them specifically.
I did this because I couldn’t bear to come upon them unexpectedly. And the reason I did this is something I’ve never talked about on the blog, because it’s extremely painful to think about and talk about. But for Theda and Thomas’s sake – for the sake of all of us who have ME/CFS – I feel like this is the time.
In fall 2007, I pushed myself to go to too many meetings for work and had a crash. That same fall, my total insomnia began. By Christmas 2007 I was bedridden. In spring 2008, Chimp landed a new job here in western Pennsylvania. We were then faced with the problem of moving me from California. Commercial flight would have been impossible, and air ambulance charters cost well into the five figures. We were fortunate to get a charity air ambulance flight from Grace on Wings, which is based in Muncie, Indiana, where my mom’s family happens to be from. We moved me to Muncie that spring, expecting we would then take me to Pennsylvania. But after the move, I deteriorated.
I am not one of those people whose ME/CFS was severe from the very beginning. My functioning went down over time, stair-step style, after each crash, and each time I’d been able to adjust pretty well. This worsening, which took me from mostly bedridden to entirely bedridden, I didn’t adjust to well at all. I’m not sure how you would; it’s enormously depressing to be bedridden. At every previous point, while I’d had to prune off more and more activities, I’d found ways to adapt. But now I was no longer in the sick-but-functioning category. I was just sick, every moment, and needy, there was no diverting my mind from how ill I was, and I really started to feel the illness psychologically in a way I never had before.
This might seem like a small thing, but I think it represents how great the impact of the disease was at this point: becoming that ill made my sense of humor disappear to those around me, because I no longer had the extra energy to say any of the funny things that came to mind. So they stayed inside me, and it meant I lost a way of relating to Chimp and my mom that had done a good deal to relieve the psychic pain of being so ill. Because I couldn’t joke, and didn’t have the energy to explain why, I was treated with grave seriousness, and that too was depressing.
In California, I’d been able to walk to the bathroom every few days to take a shower. In Indiana, I couldn’t walk across the room – all I could do in terms of getting out of bed was to use the commode next to it. I now needed round-the-clock care, more than Chimp could provide and also fill the demands of a new academic job. My mother works from home, so the decision was made that Chimp would go to Pennsylvania, and I would stay in Indiana.
Chimp found a house and moved out to Pennsylvania that August. We all knew it was the only way matters could be successfully arranged, but it still broke my heart to be separated from him. He emailed me every night, so I’d have a message in my inbox from him when I awoke, even though I couldn’t always reply, not having the energy to to type or to be on the computer more than a few minutes a day, and he drove the five hours to be with me every weekend that he could.
My deterioration was such that we hadn’t been able to get me a new doctor in Indiana. An Indianapolis-based physician who claims to specialize in ME/CFS agreed to take me as a patient, even though I wasn’t able to travel the hour to see him. Chimp had phone conferences with him every couple weeks, sometimes every week, that fall.
On election night 2008, my sleep drugs – I had been using doxepin or trazadone – failed. That first night I thought it was just the excitement around the election, but it quickly proved not to be so. Without being able to sleep more than an hour or two a night, and some nights not at all, I deteriorated further. We threw Ambien and Vistaril at the problem and found that both caused more agitation than they did sleep. Around the same time, I opened a new bottle of B12, not noticing that it was 5000 mcg rather than the usual 500 mcg, and that set me up for weeks of GI pain and tachycardia.
The specialist’s ideas of how to help me were to get me on Xyrem for sleep and give me human growth hormone. So we began those. Between the compounded side effects of them and not sleeping, things started going very badly.
The Xyrem was no help for sleep. It’s not supposed to work miracles the first night you take it – supposedly you get accustomed to the drug, and over time you start sleeping longer. That’s what should happen for a person with a brain with a mostly-intact sleep function. The first time I took it, I think I got six hours of sleep, and it never gave me that much again. I was not in a situation where I could wait to start sleeping better – I needed to do so right then. I needed to have done so for weeks prior.
Xyrem is also loaded with salt, and I had long since been sodium intolerant. As a result, it worsened the tachycardia from the B12 overdose – on five consecutive days, I measured my heart rate on awakening at 96, 117, 128, and 132. The stress of the tachycardia weakened me further.
After about seven weeks of not sleeping, my body was starting to shut down. I stopped being able to roll over. At some points I needed to be spoon-fed. My legs were tingling and painful, and sometimes I couldn’t feel them at all. I was having trouble swallowing. My pulse was hovering at or about 100 bpm, and I was having episodes of it suddenly accelerating to 160 or 180 beats per minute. My thinking was becoming increasingly incoherent: I was convinced that one of my eyeballs was bulging out more than the other. I felt a growing sense of unreality.
Strange and frightening new physical symptoms began emerging. My hair started falling out. My skin was incredibly greasy. I was having trouble focusing my eyes. My ears were ringing crazily, and I had a new kind of headache across my forehead. I looked up the side effects of HGH and it became clear that I was in serious danger, possibly so far down a perilous path that we had already signed my death warrant.
Eventually all this necessitated taking me to the emergency room.
My memory of that trip is as if it were yesterday. It was the week before Christmas. I was loaded into the car, and I remember watching the headlights play on the house as we backed out of the garage, driving through the dark streets of Yorktown, coming into the midst of the lighted fast food signs along Tillotson Avenue, and pulling into the hospital drop-off zone. The last time I’d been there was when my grandmother had died six years before, and I was pretty certain at that moment that this was my time.
They kept me overnight for observation, hoping to capture an episode of tachycardia on the monitors, so it could be analyzed. There was a big fight about me being able to retain control of the Xyrem; they wanted to dispense it, and it had to be explained repeatedly that the doses were variable in both time and amount, and thus I needed to keep it in my possession.
Despite downing the maximum dose of Xyrem, I slept terribly, getting two or three hours between the patient watching the hospital in the next room, the noise from the nurses’ station, the occasionally inflating bed, the unfamiliar pillows, the IV pinching my elbow, the demands for my blood, and the tachycardic episodes.
I had one in the wee hours of the morning. The tachycardic episodes were very strange. They were not connected to anxiety. My heart rate would zoom upwards and stay between 160 and 180 for some time – twenty minutes or a half-hour. During these, between my cardiac output suddenly approaching a normal volume (my cardiac output was low, but multiplying it by more than twice the normal speed would approach a normal volume) and the adrenaline poured into my bloodstream, I suddenly felt normal. Not normal as in my sick normal, but normal as in the feeling of what my energy level was like before I became ill. It was all illusory, of course – within the hour, my heart rate would drop back down, my cardiac output too, the adrenaline would be cleared from my bloodstream, and I would fade back into the illness’ grip.
The next morning, as I was waiting for Chimp to arrive, I heard two nurses talking in the hallway. I became totally convinced that they were talking about me and my mother – that they’d seen her come in with me and they were saying that she was the reason I was ill. I had the offending nurse called in and had words with her. She treated me with contempt and impatience, which only convinced me I was correct in my interpretation. I can’t be sure, but it is entirely possible I was completely wrong – it became clear to me weeks later that some combination of the Xyrem and the sleep deprivation had been tipping me into paranoia and psychosis.
That morning, they told me that they suspected what was happening was that my adrenal glands were, for some unknown reason, dumping out massive amounts of adrenaline. They told me that it could be adrenal gland cancer - pheochromocytoma. Looking it up, Chimp and I realized that it could explain a lot of my symptoms, would be treatable, and if so, could lead to much greater well-being for me. I don’t know if any two people ever looked at each other and wished something would be cancer more than we did on that occasion. They drew blood to check for it that morning and they sent me home, with no more illumination than when I’d arrived, and no better treatment for my insomnia.
Back home, nothing was better. It’s almost impossible to express the suffering involved in seven or eight weeks of not sleeping. I lay awake and alone through all those nights, getting two or three hours of a break from consciousness on a good night, but sometimes one or none. My pain was amplified by the lack of sleep, to the point that everything connected to everything else felt like it had been wrenched awry and hammered back into place, and painkillers didn’t begin to touch it. I was effectively pinned to the bed, unable to so much as roll over, much less to get up and sit in a chair or look out a window. I suffered through the days, exhausted beyond description because of the sleep deprivation, with my cognitive function massively decimated, racking my brain for any approach I hadn’t yet tried that might work. The successive failure of each thing I tried crushed my hope and broke my heart for the thousandth time. I felt like I was trying to live in a world I didn’t have the a tenth of the strength I needed to endure it. I struggled to type in a Google query or two some days, looking for a new drug or supplement, hoping that the solution would appear on the results page as if by magic. I felt my life was a ruin, reduced to nothing but pain and suffering and torment. I’d been worsening for so long, the path in front of me seemed pretty clear.
By the time I ended up in the hospital after more than a month and a half of near-total insomnia, I was suicidal. While Chimp was in Indiana with me for Christmas, I begged him to help me kill myself. There was no way I could think of – and I thought on this a lot at that time – that I could do it on my own. I couldn’t walk across the room; how could I kill myself? Months earlier, I had had my mother take the belts out of the closet next to my bed so that I wouldn’t be tempted; now I was regretting that request, although I didn’t think I could strangle myself, being so averse to pain. My knowledge of the drugs I had at hand was that the best I could accomplish was to land myself in the hospital, lingering through days of incredibly painful liver failure.
I wanted to just go, without the end being uncomfortable. Because I was in a mental state where I could only think of my own suffering, I begged Chimp to get me a gun. I remember him hanging over the bed as I pleaded for his help to end my life – a huge, imposing black walnut Eastlake affair that had been in my family for several generations, a bed I was restricted to that had come to stand for my inability to escape from the illness itself. He refused, and I despaired – I didn’t curse him, but his focus for years had been on doing the more and more I needed to keep me alive, and I felt angry that he was still pushing in that direction, and would only help in ways that would continue my suffering, not end it. I felt like it was time for that to stop, that he was forcing me to keep living when I didn’t want to, and condemning me to walk down the path of the difficult and lingering death that sleep deprivation was proving to be, rather than granting me the mercy of a quick and painless suicide. And adding “kill myself” to the lengthy list of things I couldn’t do made me feel even more impotent, even more alone, and it shrank the tiny box I was living in still further.
I mentioned at the start that this isn’t something I generally talk about, or even think about, because it’s extremely painful to remember. I have PTSD around this whole year – from the time I was moved to Indiana to the point a year later when I went to see Dr. Cheney for the first time, and then was taken to the house Chimp had bought in western Pennsylvania. I had to write this post an hour at a time over several weeks, because every time I came back to the draft, I felt like a black cloud was settling over my head, and the longer I kept at it, the longer it would hang there after I closed the window.
My mom and I have talked about this year a little. She invited us to come back to Indiana for a visit sometime. And…I couldn’t. It’s not that I don’t love my mom and want to spend time with her – I adore her. But just thinking about that bed, the darkened room, remembering every detail with immense vividness because I had no energy to divert myself and all I could do during that year was to let my eyes play across each inch of the room over and over and over, is enough to make me start to subconsciously wrap my arms around myself and ball my hands into fists. My mom is grateful she was able to care for me during that year, and in return I am enormously grateful that she did, but if I woke up in that room, with the massive headboard of that bed looming over me, I don’t think I’d be able to stave off a panic attack.
After the turn of 2009, matters started to improve a little. I did not have pheochromocytoma. It turned out that the treatments that the Indianapolis specialist had brought on board were causing significant problems. The culprit for the greasy skin and hair falling out was the HGH. It was probably the cause of the tinnitus and headaches. The paranoia, loss of touch with reality, difficulty swallowing, and trouble focusing my eyes was the Xyrem. We were never able to get a solid attribution for a number of the symptoms, including the tachycardia. The Xyrem folks said it wasn’t a known side effect, but when I consume more than a tiny amount of salt, my heart races, so I’m putting some part of the tachycardia down to the Xyrem, and some down to my body dumping adrenaline into my system in a last ditch-effort at trying to keep me alive without sleep.
Unsurprisingly, we dropped the specialist. In the first week of 2009, I found among my pill bottles an old bottle of Soma, prescribed by a doctor in California, started taking that for sleep, and it began to turn me around. It worked wonderfully, but when I ran out, nobody would prescribe it. We took me to a couple other doctors in town, tried a few more things, and ended up bringing Seroquel on board for sleep in spring 2009. That continued giving me more solid sleep than I’d had since 2007, and I gradually started to improve as a result. After a little bit more than a year on his waiting list, we got a call from Dr. Cheney’s practice that spring as well, saying that they could see me, and with the improvement from the Seroquel, we took me to Asheville in June, then home to western Pennsylvania. I’ve been gradually going uphill, on average, since. And that is entirely to Dr. Cheney’s credit – I continue to have periodic crises, and if I weren’t his patient, I don’t have confidence I would have made it through them.
Am I glad I didn’t kill myself in the darkest days of 2008? Yes, in retrospect – but only because my health has improved some. I still feel my desire to commit suicide was eminently rational and reasonable, and if my situation had stayed the same, I would not have wanted to live the years since then in that way, or to have had to go through the death that was approaching. There may come a time in the future – in fact, there probably will – when I worsen to the point that I feel I need to take the same action as Theda and Thomas and many other ME/CFS patients have, and I feel like I should decide on a workable method before that time comes. I have little faith that medical knowledge will progress faster than my illness will. A lot of us die of suicide, and as heartbroken as it leaves those left behind, I can’t fault any of us who do. There is a limit to human endurance, and the horrors of ME/CFS frequently push beyond it.
I hate to think on that year, but it is also the source of my gratitude. When I was lying in that imposing bed in the dark, staring at the dresser and the window and the doorways in endless succession, I never thought I could improve to the degree that I have. It’s like living in a dream, frankly. I get a lot of praise for my positive attitude, but what it really comes from is that the past almost half-decade is all gravy to me. They’re years I never thought I would count, a life I never thought I would get back, even to the limited degree I have. Honestly, any day I can get out of bed, leave the room under my own power, and read the internet all day is a delight on the level of an all-expenses-paid vacation in some beautiful foreign locale for a normal person. If I hadn’t been through the traumas of that year, I would not be as happy as I am.
Because I did escape from that bed. Maybe I haven’t escaped from the disease – that’s not something I expect the universe to grant – and I know there will be another bed in the future from which I won’t escape – but what I have, for now, is more than good enough.