Disability Lifestyle

A different kind of warfare

March 18, 2020

These recent events are taking their toll on me, and I find myself being challenged mentally in particular. A couple of days ago my sister gave me a much needed pep-talk, and in it she mentioned that I’m one of the strongest fighters she knows. She told me to kick ass in this battle like I usually do. But therein lies the whole problem: I’m like a fish on the sand, I’ve got my armour on but I’ve lost sight of my accustomed battle field.

2018:

When I told my pharmacist about my upcoming plans and why I needed an extra pack of Cotrimoxazole, antibiotics, he laughed in my face. While shaking his head and with a smile on his face, he packed the paper bag and gave it to me, telling me to take care and have fun.

I was short of breath and coughing my lungs out. I kept my slight fever under control with paracetamol, concealing its exact degree from my doctor, because I had plans. She informed me I had a pneumonia, but I already knew. Nonetheless I continued preparing for Rock Am Ring, the three-day rock festival I was looking forward to. Packing list: semi-stable tent, camping bed, sufficient alcohol and a bit of soda, carefully curated playlists, ripped jeans, antibiotics, cough assist machine… Ready to rock.

Smiling like I wasn’t oxygen deprived

Was I sick? Of course. Was I going to let it stop me? Obviously not. Me and my body have this form of symbiosis, where we may not always (or ever) agree but we make it work anyway. I push it over the edge and seek out its boundaries whenever I can, and then it gladly sends me the bill afterwards. A bill which I always pay wearing a big smile on my face and treasured memories on my mind.

I like to push boundaries, see how far I can go before my wheels get stuck, find out what my body can handle and try to take it a little further. Trial and error has taught me at what times I can push and hopefully expend my boundaries, and at what times I have to take a step back and take care of my body. This wasn’t one of those cautious times I had decided. I screamed my lungs out, downed my antibiotics with Jägermeister shots shared with strangers, and went back to the tent now and then to use my cough assist machine and free my lungs from the phlegm.

I had the time of my life, made it back home in one piece and then allowed my body some rest to fight the infection. Life went on and all was well.

Not too long ago I explained to a friend that instead of being more likely to fall sick and experience downtime, the opposite can also be considered true.

Yes, I may be sick more often than an average 24-year-old. But not despite of, but rather thanks to my disability, have I grown to become pretty iron-willed and fierce in more than one way. I’m used to dealing with a body that doesn’t work and not letting pneumonia or other ‘inconveniences’ stop me. I’m used to fighting; fighting against some kind of sickness or infection and fighting against my muscles on a daily basis. I’m familiar with aches and discomfort. I consider merely having a sore throat still as a good day. Where someone else may call in sick, I will happily grade my condition above average.

This approach (or coping mechanism) of mine has brought me to where I am now. Without it, my life would’ve passed me by very differently, and I wouldn’t be the person I am or have done the things I did.

2020:

Fast forward from that summer to today: unless you’re living under a rock without human interaction and completely out of range from any kind of signal, you’re probably aware of COVID-19 wreaking havoc on the world. The virus causes respiratory disease and deals great damage especially to the lungs. I’m one of the many immunocompromised who are at great risk from this virus. Also the young and healthy are being struck by it however, be it less heavily.

Together with my mother I’ve isolated myself in preventive quarantine and the house is in lock down. The only ones coming in and out are necessary caregivers, suited up and wearing self-made masks. My sister and I wave through the window when she delivers us groceries, and we only talk in the open air with proper distance between us.

Bored and just purchased The Sims 4 and a Zelda expansion pack

Apart from doing my part in slowing down this virus, I also really can’t afford to get infected. My weakened lungs covered in scar tissue are my Achilles’ heel, and I’m well aware of my poor chances. In a way, viruses are maybe even more dangerous than bacteria. Usually bacterial infections are very treatable by antibiotics. However there’s no easy cure for a viral infection and we have to mostly rely on our own immune systems to clear that up. Needless to say, my immune system is shit.

I’ve been stuck home for the past two weeks now, and I’m finding it incredibly difficult to handle mentally. Compared to that time I fell out of my wheelchair after a party and broke 6 bones, when I wasn’t allowed to get out of bed for nearly three months, this already feels equally long and terrible. I’m not dying, yet I’m unable to do the things I would normally still do even while feeling like death. I feel fine, yet I’m forced to do something I never do: stay still.

I’m used to fighting, but the lack thereof seems to be my enemy this time. I’m forced to completely disregard my usual strategy on life and I’m feeling like an infant on this new and foreign battle field, untrained and unprepared for a whole new kind of war.

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