My Life With Illness Is Like Running the Boston Marathon While Sick. But I'm Winning.


Yes.

I am sick. I know you can’t tell. I look just like anybody else you may pass on the street. Maybe even a little bit better? (I put a lot of effort into that, thank you). That’s OK. I actually kind of like it better this way. You see…

1) I like that I don’t get noticed in public.

2) I like that I don’t get swarmed by people offering me “special” treatment.

3) I know when a stranger asks “How are you?” they are really just saying “Hi.”

4) I like that no one, and I mean no one, can tell how I sick I am.

5) I am on top off the world when I can totally, and completely, pull it off.

No.

I am not weak, “crazy,” faking, a drama queen, an attention seeker, or a princess. It’s easy really; it’s so easy to understand.

Just think about what you feel like when you are really, really sick. I mean super sick. Let’s say you have food poisoning. Oh, and you also have a hangover, and somehow you still have the spins… yes, the spins! And you have a migraine, of course, while running a fever, so you have the chills, but sometimes you also feel like your skin is on fire, and with the fever your joints all feel as if they are going to explode — your knees, your neck, your feet, even your hands. But, you are in the Boston Marathon! It is today. It is right now! And you are in it, and there is no way out. And you are running it. Right now, with all of that crap going on. Running, you are running! Got all that? OK? OK!

Well, that’s what I feel like. Except (and this is the part I cannot help you understand) that’s what I feel like every single moment of every single day. Life, my life, is being that sick while running the Boston Marathon. Yes. Every moment. For 12 years now. Nonstop.

Have you ever seen one of those movies where someone has to relive the same day over and over and again until they finally get it right? And then, after many, many retakes, eventually, they get it right, and bam, tomorrow comes! Well, that’s what being sick every day is like for me, except there’s one huge difference. I get it right every single day, and guess what? I wake up in the morning, and it’s still today! Tomorrow never comes. After 12 years, I’ve come to realize it’s not, ever, coming.

Imagine that.

I know that concept might seem a little far-fetched to you, so here is something that might help you to understand a little better.

Have you ever gotten sick at work and realized you needed to go home?

If for some reason you were able to hang in there and finish out the day sick, and you sat very still and kept really quiet, and sipped your tea or chicken broth, do you think anyone would notice you were sick? Well, I guess it depends on your job, but they probably would not have noticed, huh? You pulled it off! Yay! You didn’t seem sick, so maybe you weren’t sick? Maybe, you were you faking being sick?

No. Of course not.

You weren’t faking being sick. You were faking being well.

Not an easy task. Was it?

Well, that is the story of my life.

I fake being well. I fake it from the moment I wake my children in the mornings till the moment I kiss my husband good night. I am lucky I can fake it most days.

Days when I am too sick to fake it, well, you won’t see me. My joints swell up, and I can’t walk without limping or use my hands to do simple things like, say, hold a cup of water, open a doorknob, brush my hair, brush my teeth.

When I am too sick to fake it, I look like I’m drunk. Vertigo consumes me. Staggering as I walk, gripping walls so I don’t fall down and hanging my leg over the side of the bed to help me get a handle on the spinning. I pretend I am on a hammock or on a raft floating in the river, up and down, side to side, back and forth, so I can drift off to sleep without puking. This one is especially tough because there is no mental escape. There is no book, no show on Comedy Central, no internet surfing that can take it away. I can’t even open my eyes without watching the world spin. Honestly though, closing them makes it worse. Sleep, some pharmacologically induced sleep, is the only answer here.

When I am too sick to fake it my thoughts are so jumbled that I call “breakfast” “dinner” and refer to the sink as the fridge. I say things that don’t make sense, and my family gets confused. I set five alarms on my phone, plus two really loud backups on the alarm clock in my bedroom, just to remember to pick up my son from school. I leave sticky notes everywhere. Notes that say things like “feed the dogs” and “get Phin to unload dishwasher.” Usually, I forget to look at them.

When I am really too sick to fake it, you won’t see me. No not at all. Never when I am at my worst. When I lie on the bathroom floor after bending over the toilet, while my heart does its thing I just try to ride it out and stay conscious. There is nothing else I can do. It’s like having food poisoning, while having a seizure, while being scared out of your mind. I try not to freak my husband and my children out, but I know I do. When this happens I can’t talk. I can’t move. Sometimes, when it gets bad, I lose consciousness. Sometimes, I can’t even find the strength to breathe in that next needed breath.

I know there are moments — actually, I think maybe all moments, where everyone forgets I am sick, except for those times when I am on the bathroom floor, of course. I am, after all, constantly trying to tell myself I am fine.

Because I am fine, you see.

I can do this. I am doing this. I have no choice, and yes, I am pulling it off. I haven’t died yet, so I think I can make this work, right? If there is any chance at all I can function, well then you bet I am going to function, at least as best I can.

I put on makeup and I grip the brush like a 1-year-old would. I choose my clothes carefully, ones without buttons or zippers, which are too hard to fasten. I walk slowly in the grocery store so my knees don’t buckle, and I always bring a list. I smile. I don’t even try to carry the weight of a purse. If I am having trouble first I will: try nonchalantly sitting in a chair. Then I’ll kneel or lie on the floor, and if that doesn’t work I will lock myself in any bathroom and keep my phone handy. I squeeze my husband’s arm when something bad is about to happen and I need to get the hell out. He knows what that squeeze means now. Yes, he knows.

And what do you know of this? Of Ehlors-Danlos syndrome? Of postural orthostatic tachycardia syndrome?  Of Castleman disease? Of my Boston Marathon? You know nothing of this, I hope. Because if you understood any of this, there would be no reason other than that you are a sick person, too. And I hope you are not. I really hope you are not.

Please, don’t pay me any attention. We don’t even have to talk about this. Seriously, I don’t want to. I am happy appear a little odd, to be misunderstood, speculated about in conversation, put on the spot and yes, occasionally even judged. It’s OK with me. Carry on, as you are, you beautiful, fortunate and healthy people. I adore every single one of you. You make me smile on the inside. I watch you working, jogging, chatting, even just running errands, and I grin inside. I remember what it felt like to be you. I was young, and you are beautiful. I remember those vibrant days so vividly when I look at you, the best feeling in the world.

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Thinkstock photo by Alextype


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