I'm Young, I Have MS, And I'm Worried How I Fit Into A Post-Covid World

Going 'back to normal' leaves little room for those of us who are more at risk in a Covid world. But the world never really included us in the first place.

As we flit up and down levels in this dystopian elevator dance, I find myself gripped with hiraeth, a Welsh word to describe a nostalgia for a home you can never return to.

I long for the days that I could hug friends; go on a date where the prospect didn’t fill me with existential dread; a time where kissing people didn’t constitute an irreversible and life-threatening lapse in judgement. I yearn for long-haul flights to far-flung destinations and wine-spurred conversations before hitting the dancefloor, arms flailing wildly to one hit wonders. I may miss these things, but the reality is I was already in the throes of a health crisis of my own before Covid hit, so I haven’t had ‘normal’ for quite a while.

A diagnosis of multiple sclerosis (MS) just over a year ago at the age of 32 felt like my life was over. Thoughts of wheelchairs invaded my mind, a lazy symbol of disability – many of us living with MS don’t look visibly disabled so the unseen impact of the disease is frequently undermined. MS means my immune system is in a constant state of self-flagellation, mindlessly hacking into the protective layer of my nerves. This causes irreparable damage, affecting mobility, senses, and cognition. As my medication is an immunosuppressant, I am incredibly vulnerable to illnesses like Covid. It also carries fun side effects like liver failure and fatal brain disease; a life stake many of us take over the debilitating alternative.

At the end of last year, I had a relapse. Replete with peripheral numbness, leg spasms, and He-Man quantities of steroids, it took months to recover. Then Covid hit. As Ireland shut down, I fled Dublin to quarantine with my parents and grandparents in the countryside. For four months, our days were planned around mealtimes, the six o’clock news, Netflix, and walks through the surrounding woodland. Grieving for your health is a strange self-absorption and living with MS during lockdown meant grappling with crippling anxiety, cancelled neurology appointments, and worries over medication access. Yet, I was lucky in comparison to many others.

“Perhaps we have reached the Hunger Games part of 2020, where our neighbours weep “it’s for the good of the economy”, while bolting us inside our houses.”

Despite the commonality of Covid to bind us all, we each experienced the emergence from lockdown differently. As I begin to unravel from my cocoon, I wonder where I fit into this new world? I believe people have grown weary at having to curtail their lives for the sake of the ‘weaker’ members of society. We all have virus fatigue driven by loneliness, financial burdens, and a need to reconnect with people we love. Gone are the rallying cries of solidarity underpinned by a new-found hope for a world devoid of material possessions.

Instead we are left in a Covid-wake, drowning in despondence for an unknown future. Everyone is taking little risks. People’s bubbles are merging into other bubbles and many are losing sight of why we locked down in the first place. To save lives. As we cannot rely on common sense, governments create regulations to keep us safe. The problem is that everyone has different ideas about risk and how to move forward.

As countries open up, there are many who argue we should adopt a policy of shielding the vulnerable, while the rest of the population go about their lives as normally as possible. Advocates for herd immunity amongst the younger, healthier members of the population look to Sweden, despite scant evidence to show it works. Sweden also has a wildly different demographic. It has the highest proportion of single occupancy households in the EU. In Ireland, the average household size is increasing. The World Health Organisation says herd immunity is only achieved by using a vaccine to protect from a virus, not by exposing us to the virus. There is not enough known about lasting immunity to Covid so this ‘policy’ is both scientifically and ethically wrong. Perhaps we have reached the Hunger Games part of 2020, where our neighbours weep “it’s for the good of the economy”, while bolting us inside our houses. The reality is most ‘at-risk’ people are already limiting their movements. Although enabling the virus to spread puts everyone at risk, it is mainly at the expense of the vulnerable and elderly, and I am not an experiment. Economies recover, dead people don’t.

“As we face the possibility of having to live with the virus for the foreseeable, we need to look for ways to function, while protecting the medically vulnerable instead of excluding us entirely.”

As we face the possibility of having to live with the virus for the foreseeable, we need to look for ways to function, while protecting the medically vulnerable instead of excluding us entirely. Since the economic ramifications of intermittent lockdowns are disastrous, economist David McWilliams argues that the Irish government should by-pass the banks and borrow directly from the European Central Bank to invest in businesses. During a crisis, people tend to save their money so any future spending would even out the deficit. The new budget includes an €8.5billion Covid support package, which is a great start. A more nuanced approach to lockdowns based on virus numbers in each county could also temper the financial blow.

Luckily, I can write from home, but what of the medically vulnerable who can’t work remotely? A long-term scheme to help cover their wages should also be included in the pandemic response budget, as well as ensuring employees have the legal right to work from home. Better working conditions in factories and improved housing for those in overcrowded, squalid living spaces are also crucial to stop the spread of the virus. At the very least, people need to adhere to social distancing, mask wearing, and hand hygiene, measures many seem to have forgotten. This is evident in people’s decisions to attend mask-free parties, celebrate after sporting events and visit multiple households.

Our individual choices have resulted in this second wave but the choices we make now can also curb the spread. The government’s failure to invest in our healthcare system means we have dangerously low ICU capacity. People are being asked to comply so other critical health services can function, and hospitals don’t have to choose between Covid or cancer.

A return to ‘normality’ leaves little room for those of us who are more at risk in a Covid world – because perhaps the world Covid has invaded was never a world that really included us in the first place. As Bono said, we are all in the same storm but none of us are in the same boat. 2020 has stolen much of our joy and has made many people so desperate for a life once lived, they would rather forge on with horse blinkers until this nightmare ends. And who could blame them? Covid is robbing all of us of time. For now, it means finding pleasure in what I can do. Walks with friends, sea swimming, playing music, or creating dribbly watercolours for no one in particular. My future framework has been completely dismantled.

Nothing about this is normal. Perhaps it never will be again.

Dearbla Crosse is a freelance writer. Follow her on Twitter at @Dearbhlac

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