The Criminal No One Can Stop: When Illness Is a Crime Scene

“Choose one,” the masked man growled as I stood in the doorway, frozen in fear.  “It’s either the painting or the pearls.”

I tried to get the words out, but the mere sight of the crowbar in his hands and the open window had already stolen my voice.  I reached for my purse to find my phone, not daring to lose eye contact, but before I could call 911, he whisked out a lighter from his back pocket.

“You have five seconds to pick one or I’ll burn the whole place down instead.”

It wasn’t a nightmare—this is life when an illness breaks into your body.  It’s the feeling when I must choose what to miss out on in order to avoid an all-consuming relapse.  It’s the pain of having a dozen things I’d like to do in a day and choosing which ten to let go.

I live with Myalgic Encephalomyelitis (ME), which is medical terminology for “pain and brain and nervous system inflammation.” But ME is sometimes also referred to as Chronic Fatigue Syndrome—a laughable name for a neurological illness that effects everything I do.

The defining element of ME is known as post-exertional malaise (PEM), which is when overextending myself flares all of my symptoms (what we patients call a “crash”).  It makes me feel like I have a bad case of flu, scrambles my mind to the point my sentences come out incoherent, and causes pain all over my body.  The trouble is, overextending myself can be as simple as walking to the mailbox or working too intensely on my master’s thesis for too long.

Every day is a defiant dance on the edge of relapse—an attempt to do as much as I can without making myself worse.  Each moment is a calculated endeavor in which I’ve considered what I’ve already done that day, what I did the day before, and what I’m going to do the next day in order to arrive at my decision to rest or do.  Every activity is weighted with the potential costs and benefits, knowing that one misstep can mean being sick for days after.

I have lots of ambitions in life, and I want to achieve them all.  And I want to make progress on my thesis right now.  I want to do my consulting work.  I want to go for a walk.  I want to spend some time with a friend.  But I also need to get myself to the pain management and therapy appointments that make my existence tolerable.

Choose one, my illness growls, brandishing the threat of relapse if I try to do everything.

Some days, I let the thief take from me without an ounce of resentment, because I’ve come to accept that if I appease him, I can at least keep some things as opposed to losing everything to a relapse if I were to defy his demand.

Other days, the pain of what I’m losing is so overwhelming that I scream at him to get the heck out of where he has no right to be, and in so doing, embolden him to take and take and take even more.  The emotional exertion of my crying and trying to resist only steals energy from me that I couldn’t afford to lose.

As difficult as it is to deal with ME day in and day out, one of the hardest parts of having it is the lack of support from doctors.  Some don’t believe ME even exists as its own disease—they frame it as a symptom of mental illness.

“But look at everything that’s missing!” I plead, enumerating what’s been stolen out of my house—my fitness, my independence, my memory, my ability to simply enjoy a drink with friends.

“You’ve just misplaced all of it,” they say. “There’s nothing serious happening.”

But I know full well a twenty-something shouldn’t, in the span of a few weeks, go from running ten miles at once to not being able to run even half a mile without feeling like she has the flu for days afterwards.  I know something’s not right when this writer forgets the names of everyday items dozens of times per day.  And I know that I shouldn’t wince in pain, as if I’m being smacked in the ears, when listening to normal conversation.

Yes, I know there’s a thief in my life because I see it with my own eyes, and I face the consequences day after day after day when I choose what to let him take and what gets to stay.

Even when I see doctors who know my condition as the life-altering robber that it is, they don’t have a cure nor any proven treatments to offer.  Their inability to help is like the police showing up only to tell me they can’t kick out the thief or force him to return to me what’s mine.  I get medications, vitamins, and IV infusions with no idea if any of it will work.  My current regimen has improved my symptoms, but each relapse proves that the disease rages on in the background—I’m armed with nerf guns to defeat a violent criminal.

But perhaps if I pelt him enough times, he’ll someday decide to leave for good.

Nevertheless, every day, I wake up and walk into the same crime scene over and over and over again.  Will he ever leave? I wonder.  How much longer will this go on?

Some days, I’m not sure how many more times I can withstand the grief and the fear that my illness brings.  In those moments, I realize there’s one more choice I have to make:

Choose one: hope or despair.

It is understandable to choose despair when living with ME—life as you once knew it is gone, and you don’t know if you’ll ever get better.  For many, despair isn’t so much a choice as the default—it’s so easy to fall into it that I’ve needed therapy and pharmaceuticals to even recognize that I have another option.

These days, more and more, I choose hope. 

I grieve the opportunities I’ve lost, but I look towards the future not with its potential for catastrophe, but with its potential for meaning and purpose in the midst of whatever may happen.  I’ve realized no illness can take away my worth as a human being.

Hope is the one thing the thief will never demand me to forfeit because it takes none of my limited energy to carry.  To the contrary, hope is what gives me the courage and the strength to live with my illness day after day after day.  Hope is not a cure, but it is the hope of one that helps me stand tall when face to face with the worst of ME.  Even in a broken body, when I choose hope, I’m far more powerful than any disease that breaks into my life.

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