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How Trivial Trips Become Major Operations When You Have a Chronic Illness

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We are taught from an early age that being “special” is a good thing. You are unique, you differ from others, you stand out from the crowd. Yay!



Throw a rare, chronic illness like neurofibromatosis type 2 into the equation, and you would give anything to blend in with your surroundings. To be “normal.” To Be Like Others. (Of, course, we could open up a whole philosophical discussion on the definition of “normal,” but I think most people would be on the same wavelength when it comes to what that word represents.)

You see, things that seemed easy in the past can now turn into huge deals. If you’re heading out to meet someone, for instance, the venue needs to be extensively Googled beforehand in order to find out how you’ll get there. Public transport? Two types of public transport? How far do you need to walk? If the place is full, how far to an alternative venue? Will there be seats? Just a train running late, or a rail replacement service, and most of your energy will be gone before your evening has even begun. Sitting on public transport can also be a trial if, like me, you have bad hearing. Sometimes announcements are made, and you have no idea what’s being said, and you need to walk up to a fellow passenger and get them to fill you in. When you finally reach your destination, you can feel drained, even by things which seem completely mundane to others. Arriving at a fully packed bar with loud music can make me break into a cold sweat. I was in a noisy pub a while ago, and as it was my round, I headed up to the bar to get the drinks only to have to turn tail and fetch a friend to come up with me, as there were three rows of people between me and the bar and orders had to be shouted.

Depending on other people leaves you feeling quite vulnerable. I’m lucky in that I can mostly manage on my own (though phone calls are a no-no unless absolutely necessary), but any loss of independence has a devastating effect. Likewise, if someone I don’t know too well sits down at my deaf side and starts chatting to me, especially in a noisy environment, a feeling of panic sets in. Yes, I could tell them, but you don’t always want to tell people. You don’t want to always be “the sick person;” sometimes, you just want to be normal. Right? There is no conversation killer quite like the sentence: “Well, I have brain tumors, you see.”

I mean, how depressing.

I totally get it. I wouldn’t want to be on the receiving end of that, either. The problem is, there is often no way around it. Ice-breakers usually include asking someone what they do, and if you don’t, well, actually do anything, an explanation is unavoidable. All of this is incredibly stressful and can leave you feeling like a wrung-out dishcloth within a very short space of time. There are so many things that need to go exactly right in order for your little sojourn into the great wide world to be a successful one. And if they don’t, the feeling of defeat can be devastating.

Which means that little trips out, events and pastimes that seem trivial to healthy people become major operations when you have an illness. You need to sit still all day until it’s time to go. You can’t plan anything for the day before or the day after. If you’re booking tickets for something — or heaven forbid, a holiday — you know you’re taking a massive risk, as there’s no telling what shape you’ll be in at the time. You become a kind of Sisyphus, constantly pushing your boulder up the hill of event planning and experiencing total euphoria if you reach the top, even in the knowledge that your everlasting chronic cargo has rolled back down and you need to start all over again for the next one.

People in full health, with trustworthy bodies and carefree minds, will never understand how those little victories feel. Of course they won’t. I don’t think you should be expected to go around being monumentally grateful for your health all day long. You should be able to take your body for granted, at least a little bit, and to live your life to the full. But for those of us who have lost that ability, the feeling of gratitude whenever you accomplish something in spite of your impediments is almost overwhelming.

Now, if you’ll excuse me, I have to go and book some tickets.

Photo by Wes Hicks on Unsplash

Originally published: May 15, 2019
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