I am usually the one who ‘gets on with it’. I am usually the one who puts on a smile and turns every negative obstacle into a positive passage of opportunity. Flawlessly. I am usually the one who puts everyone else and their feelings before me, and then never really has the time to think about myself at all. And that’s okay. But, they say COVID19 brings out the best and worst of us all, and it has finally done that to me too. For the first time I will be so open and say, I am struggling. Really struggling. Finally, all the tiny, subtle cracks that have spread out over the period of this quarantine, have deepened into one big trench, and broken, just like the new bones, that I have never seen before, are now poking through my exhausted, defeated self. I feel broken.
I hate talking about my own health. As a medical student, I want to propel all my focus on other people’s health and how I can make them feel better. Having underlying health conditions we learn to deal with them at our own pace. We become experts at making them discreet from the concern of others and accepting its routine as being a part of our everyday lives. But during this lockdown, it has become ever more difficult to just ‘pop out’, press the release button and reset after a bad blip, without others wondering.
On a good day, I will fill 10 washing-up bowls with projectile vomit, as my body rejects every little ounce of food or water I try to consume. Every muscle is screaming with tiredness and yet I lay endless nights awake due to the agony of aching joints and the squirming feeling of growing more weaker to move. On a bad day, I will be woken up at night, filing a further 10 or 15 bowls as the scars from my previous PEG and JEJ tubes wince in a cramp of pain. My mouth is raw and my throat burns.
I have lost weight, and the task of securing a food delivery slot has become impossible, for the last month and a half. Yet, the disbelief of others at this ridicule only fires me with the interrogation that I am not trying hard enough, or I haven’t contacted the right people. People may no longer act like just people. We have become these auto-piloted carers whose warmth and comforting conversation have turned into tough-love and instruction, constantly diverting to the subject of each other’s health status and what we should or shouldn’t be doing during the COVID19 times. We are all just trying to be caring, but suddenly it can make us feel lost, and out of control of one’s own disabilities. Suddenly, it feels like there is nobody else to talk to, where the daily chat doesn’t revolve around COVID19 or ill health, without the bias. I now suddenly lose this sense of normal conversation, and then, all of sudden, it leaves you in a very lost, lonely and dark place.
I am so exhausted that I have now had 2 seizures in the last week, ending me up in the hospital, twice. After working so hard, and so ruthlessly to abide to the 12-week isolation rule, I am terrified to the core that, after all that, I have exposed myself to quite possibly, the worst sources, fathoming my only chances to stay well. On the COVID19 side of the Emergency Department, the alien scene of not recognising your own colleagues dressed head to foot in PPE was surreal. But I recognised the softness and the vulnerability in their voices, reminding me of that long-lost kindness and comfort of humanity. But then, I was moved over to the non-COVID19 side and then the fear kicked in. Nobody introduced themselves by their name. In fact, nobody spoke to me at all, for that matter. I wasn’t shown where the call-bell was (which can be terrifying if you are deafblind like me). I lay on a trolley with no pillow, the bony points of my hip-joint piercing in pain as I balanced on the side, curled up in a ball. I had a screaming headache, and no knowledge of what time it was or who I needed to call. After what may or may not have been four hours of calling out “Excuse me?” to every passer-by I could make out at the end of the dark, gloomy makeshift corridor, I finally managed to speak to someone, asking if I could try going to the toilet after days of not being able to pass urine. I felt washed over by weakness and fatigue. I could barely stand up and my head was swimming. But the nurse just shouted at me:
“Come on! Don’t be silly, there’s nothing wrong with your legs. Walk properly!” If I was a medical student hearing this being said to a patient, I may well have stepped in. But that night, I was the patient, and I was too exhausted to care or to reply.
No pee. No luck. Hands trembling, I went to wash my hands, but the next moment I found myself sinking into the cold bathroom floor, the sound of angry voices echoing in my ears, from behind the door, none of which I could piece together or make sense of. I was dragged off of the floor and told I was a “time-waster”. I was ushered to walk back to bed and then wheeled off to another ward. I had no knowledge of what ward I was on. No “hello, my name is…” or “here is your call bell if you need anything”. I was left alone, crying into my pillow in sheer fear. The sounds of machines and temperamental IV pumps triggered flashbacks of my previous ICU admissions, except this time I was alone and completely out of the loop. A patient lying opposite me died peacefully in her sleep with nobody around her. All I could do, all I could look at, was the outline of something cold and lifeless, whilst thoughts of nothingness palpated through my mind, as I watched.
“Please, get me out of here”, I wept silently.
In the current climate we’re in, I was reminded that chronic conditions like mine cannot be dealt with. I was advised to continue the 3-week bedrest I had already been adhering to, and returned home via hospital transport, feeling no better. The first thing the driver asked me, was
“Was it COVID19?”
“No”, I replied. When I got home, crawling up the stairs, I felt the world’s hearts sink. I wondered who I was letting down – my family, my friends, my colleagues. Had I now exposed myself to the virus, and now just waiting to pass it on? Was I being irresponsible for coming back, untended, as I tried to continue living life as normally as possible? In my own head, I apologised to everyone that knew me, saying “sorry” over and over again for ‘coming back’ and being a burden once again. I couldn’t think of anything to justify myself other than to go to my room, feeling withdrawn and bottled up by my own worries deeper down. I have lost a sense of belonging, a sense of where and what home is, something I can only begin to imagine is on the very minds of so many others right now. I continue to be reminded that the stress I have caused everyone else to feel is my own fault entirely. I don’t know what I’ve done, other than tried to deal with these debilitating chronic conditions during this difficult time, just as I have always done, but I continue to accept the blame, carry the guilt on both shoulders, and say “sorry, I am really sorry”, as an automated response to every kind gesture I am given. I have accepted that, out of everyone, it is people like myself, the ones who long before this pandemic found ourselves desperately trying to stay afloat our own chronic illnesses, that have to take on that stress, by taking on other’s stress, their worry, just as I often find myself doing before it gets too much, even for me.
When everyone said it was okay to reach out, that it was okay because we are all doing it and all feeling it during these difficult times, I sought relief in this statement. But, somehow, as someone who is often only seen for what they are, rather than who they are – their health status, disability and competency, when I have reached out over these past few weeks, I only feel worse rather than better. My passing thoughts, of which I owed trust in confiding to others, are now the subject of large group chats questioning my every move, only making me feel more distant, withdrawn and less inclined to want to open up. I so badly want to be able to reach out to my own friends and family, those who know me, understand me and love me through whatever circumstance, but when we are 200 miles apart and only together by the means of a phone screen I can only hide the struggles I am toying with right now, in fear that I will worry them too. Consequently, each day, I feel worse than I felt the day before, and deep down, I know I have nowhere to go, nowhere to seek sanctuary from, and that my ears will continue echoing to these do’s and don’ts for as long as this quarantine lasts.
When I came home that day, I found out that a friend whom I had grown to know, died of COVID19. I am not sure as to what part of that day broke the final crack, but this certainly made it a whole lot deeper. The feeling of guilt rose to another level entirely, like the breaking water levels in a typhoon. They were young, just like me. They had ambitions, just like me. They were helping other people before themselves, just like me. They were human, just like me. But, howdo we grieve in these strange times, may I ask? I am too scared to weep whilst locked indoors. I fear that this grief will be heard and misinformed by an assumption I am not coping. I am scared of worrying the ones who care most. Friends. People, like me. Another notification on another group chat. I think I sat there in the corner of my dark room, the cooling summer evening breeze wafting through the gap in my window, for a very long time that night. Most days, I think to myself,
“There’s always tomorrow”. But now I am wondering how to repair all these broken cracks and ponder on the question,
“When will this all get better? Will, it get better?”
With the growing divide in this human connection, the freedom within the four walls of this quarantine, during this pandemic, also comes with the growing self-questioning: ‘What have I done? What have I done now?’ and, ‘This is all my fault’. But as I continue to doubt myself, and accept that I too have finally cracked, I continue to hold on to the hope that this pandemic is somehow, somewhere, bringing us closer together, as it closes the gaps, the cracks, the worries and the fears. Right now is not the time for tough love or “I am more stressed than you”. We are all in this together, all struggling and broken by this in our own individual ways, and the greatest purpose we can have is to be the same glue for others as you’d be for yourself. If you see someone struggling, know that it’s okay to just huddle down to their level on the floor. Curl up next to them and have a good cry too, if needed. You don’t have to question, you don’t have to rationalise. All you can do, and the best you can do, is to be the listening ear, and the comfort, whilst it’s someone else’s turn to let go of the tears COVID19 rains us with. Because then we can all know that it’s all going to be okay and that yes, it will, one day eventually, get better. And I continue to wish for this.
As for me? My Mum’s hug will be the greatest glue to fix these many weeks of broken cracks. That is, when this lockdown is over and I can close the gap of those 200 long, broken miles between us. As we watch on at our friends calling their own families, also broken by this distance, as we watch families hold up their hands, the single pane of a glass window separating them, children of key-workers – mothers, fathers, uncles, aunties, brothers, sisters…gone weeks without that one hug or embrace…it reminds me then that there’s always someone out there who can fix all your breaks in the end, right?…