I’m fed up. More so than usual. So, I’m coming out of the closet.
I’m one of the 9% of adults in the U.S. that suffer from chronic pain. If you’ve met me in person, this may not surprise you. You’ve perhaps noticed the limp, heard my knees and hips pop, or seen me struggle to straighten my back.
The earliest contributor to my condition is EBV. Basically (for me; not for most), it’s mono that reoccurs in my body. It doesn’t lay dormant like it normally does after running its course through a correctly-functioning immune system (which mine, apparently, is not). The virus flares up when I am sick with a cold/flu/sinus infection/etc; if I don’t sleep enough; if I don’t eat enough (tricky little bug, since it makes you not hungry); sometimes, even if I’m just carrying too much stress.
One big side-effect of EBV is the fatigue. Fatigue that doesn’t make me feel unable to focus, but like I’m unable to support my body or lift my arms. When living through a flare-up, I take baths rather than showers. I sit while I brush my teeth. When I can get away with it, I don’t brush my hair at all. (Not.worth.the.effort..) I fall a lot, because my legs lose the ability to support my small frame. (Ever wonder why I’m always in pants? I’m hiding bruises.) Once I’m down, I question whether I have the strength to pull myself back up.
There’s a weird pain associated with EBV, particularly in the early days of flare ups (when evening fevers are also most common; in the first 10-14 days). I’ve heard it described as muscle aching, but it feels deeper than that. It feels like my bone-marrow is pushing through it’s barrier and seeping into my muscles, as if turned to lava. The dull, fiery pain pushes between my ribs; under my knee caps; in my arms and legs; behind my eye lids. (Yes. I know there’s no marrow in my eye lid – it’s just the same pain.)
Then, there was September 29, 1999. The accident.
Apparently, I resemble a mailbox and am invisible through a chain-link fence when I’m on a bike, wearing a white t-shirt, in broad-daylight.
- Excerpt from the police report
In respect to the man that hit me, I must add that he was 76 years old and had a stroke while he was driving. I think he ended up with the short end of the deal. I heard that he died months later.
RIP, old man. Perhaps we’ll share a beer in heaven (whatever that is; I’m not really a “religious” person) and laugh over your reaction some day. “What were you doing in the middle of the street? I never let my kids ride their bikes in the street for exactly this reason!”
I was 20 years old and on my way home from an undergrad class.
>blinkblink< … I think that was pretty much my response to him. I had no idea what was going on at that point. One minute I was cruising home, the next I was sitting on the curb wondering what had happened after I yelled, “FUCK!!!” (after I realized he was starting to accelerate rather than stop at his two-way stop sign. I had the right of way/no sign.)
Even though I stood up without a broken bone and carried myself to the curb to sit down, that one left me with several pain-related issues.
My back and shoulders never stop hurting. Never.
I’m not sure which is the primary cause of my limp: my knees, or my hips.
The accident then led to a simple sinus infection going misdiagnosed for nearly four years. Insert the now incurable (without invasive surgery) migraine-esque headaches that cause light sensitivity, as the sinus cavity in my forehead pushed into my retina.
If you’ve ever wondered why I almost always wear my People Magazine hat: it’s proven the best at cutting out the most painful lights directly above me while giving me relief through tightening it against a pressure point in my forehead. (That’s why I’m always adjusting/re-tightening it.)
Once an active person, I went to the gym, enjoyed running and biking, and enjoyed hiking and bouldering in Phoenix.
Today, I struggle to walk and stay standing long enough to fill my kids’ glasses full of juice. Prescription bottles are even difficult to open, with my under-used muscles’ premature weakening.
There’s shame in chronic pain.
But there’s also isolation after years of pushing people away, rather than admit to what I’m dealing with.
So, I recently made reservations to spend a weekend among people that I grew up with, and go to a place that I haven’t been since this whole thing started. I haven’t been home in a dozen years.
I found myself on the phone with an old friend today, forewarning him with what I feel he’s about to see: the shell of the person that he once knew. His reply? “I don’t judge.”
I hope you don’t either.