Somehow, it was almost a year ago that I sat down to write about how the coronavirus pandemic was affecting people like me with long term chronic health conditions.
It was scary and unknown territory – ‘unprecedented times,’ as I’m sure people would rather never hear again. Unfortunately, it doesn’t appear to be behind us. So as chance would have it, and perhaps unsurprisingly, I find myself writing again about how the pandemic is once again affecting people like me.
As a 33-year-old Type 1 diabetic with end stage kidney failure, life is hard, but it’s been made harder by the pandemic. I have now been living with kidney failure for two years, and I’ve officially been on the waiting list for a simultaneous pancreas kidney transplant for over 16 months.
While I understand it’s impossible to precisely schedule this kind of operation due to the unpredictable nature of organ donation, my estimated waiting time was originally 12 months. With a six-month suspension of the list last year, and now a second indefinite suspension of the transplant list currently in place, we’re looking at substantially longer waiting times as the sheer volume of people who need kidney transplants grows ever more and the number of people receiving them grinds to a halt.
My spirit feels vanquished, as if I’ve lost the fire inside me. And I’m not sure how much longer I can bear to survive like this.
Limbo. Nothingness. Oblivion. All words I could use to explain how waiting for waiting, essentially waiting for nothing, feels. Last time round I felt angry, so outraged by the decision makers that I was impelled to act – to write, to talk, to share my experiences. I felt like shouting about it from the rooftops – can’t you see that my life still matters, that my life is still worth something – I wanted to give meaning not just to my life, but to all those people living with chronic health conditions, who might not agree with the government labelling their surgery or treatment ‘non-urgent’ or ‘elective’.
Now, it’s difficult to even feel that. Lockdown fatigue has set in, and I have a real feeling of powerlessness and hopelessness. I find myself using the phrase “it is what it is” on a daily basis, as if all passion for life has been zapped out of me – when anyone asked how I am I simply say “I’m fine” because that answer is easier than the truth. The truth is my spirit feels vanquished, as if I’ve lost the fire inside me. And I’m not sure how much longer I can bear to survive like this.
In searching everywhere for blame, I know it isn’t the doctors and nurses. They want to keep patients who are immunocompromised safe, and are doing an amazing job. I want to point my finger at the government, with their ever-perpetual U-turns in policy and their blind indifference to financially taking care of all people, of all circumstances, sufficiently to ensure they are actually able to stay at home. I’m angry at the press who report irresponsibly, bombarding people with headlines that make them switch off and mistrust advice, and I’m furious at individuals who flagrantly flout the rules. It hurts me inside. Those are the days when I close my eyes, and pray that when I wake up, this will all have been a dream.
It would be easy to switch off and become apathetic to all the news but that isn’t right... It’s apathy that allows this virus to be at its most dangerous.
It would be easy to completely switch off and become apathetic to all the news but that isn’t the right way either. It’s apathy that allows this virus to be at its most dangerous, that lets it sneak up on us blindly and take hold of us unsuspectingly.
I try to remind myself this when I feel tempted to ignore the shielding advice and pop down to the shops for a sandwich. Stuck inside the decorated walls of my humble flat in Crouch End, I have come to appreciate simple things: a good cup of tea, a hug from my sister, a giggle at a good television programme, maybe even the ability to roll out of bed and join the team Zoom dressed only from the waist up.
I push my fears for the future deep down inside me, and look out the window and think, as if I were Scarlett O’Hara herself: “After all, tomorrow is another day”.
Lara Wahab is an account director at Wieden + Kennedy London. Follow her on Twitter at @wahabning.
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