Waitlist Blues

Lucy Ryan

Five months after the battery on my gastric pacemaker dies, and three months after being told I’ll have the replacement surgery “early in the new year” by a kindly but scatterbrained doctor, I have a panic attack so fierce that when I come back to myself I am on my back on the living room carpet, one hand clawing viciously into my side, the other arm wrapped around my neck like a parodic headlock. I am sobbing and heaving and muttering oh my god, stop it to myself like a mantra. I do not have a date for my surgery, yet. What I do have is a calendar fluttering in my mind run through with red X’s to mark the days where I have thought about, but have not, killed myself.

I first got sick with gastroparesis, a condition that involves partial paralysis of the nerves in the stomach, when I was fourteen years old. I spent most of my teen years desperately trying to convince doctors that I was not bulimic when I threw up every meal I ate, and then, when I wasn’t losing weight fast enough for them to take my condition seriously, starting to develop the unhealthy eating and exercise patterns I’d just told them I didn’t have. Shocking though it might be, this was not the last time seeking treatment for my chronic health issues would have a negative impact on my mental wellbeing. That time in my life is pockmarked in my memories, a hazy disinfectant scented, hospital-teal blur, whole month’s and years eaten away by trauma and exhaustion.

When I found out that there was a surgical option to manage my condition, one that would mean I could eat food normally and not be reliant on a yellow tube stuck up my nose or a tap directly into my innards, I was ecstatic. I jumped at the chance to have a robot place a little box under my skin to shock my lazy stomach into moving again, and then didn’t jump again for six months when the promised speedy recovery crawled painfully and tirelessly by. The battery on the devices usually last between eight and ten years. Now, seven and a half years later, my battery is dead. I am an adult, now, and I am watching my life carelessly collapse in on itself.

I have been sick, mentally and physically, for as long as I can remember. I had my first panic attack at the ripe old age of five, crying and heaving and only able to explain that my feelings hurt. I first entered therapy to cope with chronic pain when I was thirteen. For me, anxiety, depression and life altering pain are not comorbidities but bullying siblings, there in every memory and birthday photo, trying to make me scream and cry again. I am so good at being sick that I made it my job; for five years, I was a peer support worker, trying desperately to turn my harrowing experiences into hope for someone else. After all, I was put together, wasn’t I? I had coped with all these things for such a long time they had become background noise. A panic attack once a month which made me nonverbal and had me sitting in a bathtub fully clothed? That’s just a funny anecdote at the next support group.

Through the years I picked up a wide array of tools for coping with myself, squirreled away from the mouths of buzzing therapists and doctors and often more crucially the people sat in a room with me week by week, telling me how they were not coping particularly well with themselves at all. I perfected the sleep routine. I went for walks every day, did heart-thumping workouts and took long, slow breaths. I wrote diaries. I kept gratitude journals. I did everything—every. fucking. thing. right. And then the pacemaker broke, and all my routines kept happening, but my mind refused to coalesce again. Months spent watching myself get sicker, thinner, my body literally wasting away as my social life and career started to do the same, and no coping mechanism could help me to cope. I was, in short, going slowly mad, and couldn’t stop the progression.

One of my favourite little kernels of advice when I was a peer worker was to suggest making plans. I can’t possibly kill myself this week if I have a concert, or a play, or a dinner with a friend coming up the week after. So I have to play a game of chicken with myself, constantly placing enticing hurdles to my own demise until I’m living enough of a life that I don’t actually want to not be in it anymore. Unfortunately, that strategy is impossible when you have no idea what the timeline to an important operation is.

I have been reneging on plans, or too scared to make them, since before Christmas, and I can feel myself struggling to cope with it. Staring into the abyss, with no sense of how long I will be living in limbo is an impossible state, and I know that’s why my mind is shattering. The NHS has never recovered from COVID and strikes and all the other nightmarish things that have happened in the last few years. What should have been a very simple and quick keyhole surgery has been drawn out for months and months because the backlog is unrelenting. Staff are overworked and snappy and unable to give me any information. It’s no one’s fault, there’s no one I can make a complaint about or sue to get my body and therefore my brain back in working order, all I can do is cry, and keep calling so I don’t get lost in the shuffle. I just have to live with being tortured, and drive myself mad.

This is unlivable. It’s untenable. I don’t know how anyone is expected to simply cope, jettisoned in the choppy waters of NHS waiting lists without even a life preserver to grip onto. Every time I try to wrap my mind around it, everything bends, but maybe that’s just the sickness talking. I have coped with a lot in my life, painful surgeries and experimental medical procedures that often didn’t even dull the pain, being kicked out of education for being too sick, losing friends to suicide and family to cancer; I’m teflon. I’m stormproof. But there’s only so far that resilience can take you when the light at the end of the tunnel never gets any closer. And I’m really starting to think it might be a train.