Monday, March 24, 2014

Now You See Me

I am the face of disability.
It's not necessarily (hopefully not, anyway) the face you expect to see getting out of the car in a handicapped parking space, but not every disability comes with age, and not all are visible.

We call them "hidden disabilities" although if you have known me over the past 10 years, you'll know I have trouble hiding it, as much as I'd like to.

I have chronic pain. Deep and abiding pain. Pain that never gets better but does get a whole lot worse, at inconvenient times, and in surprising and sometimes humiliating ways. I have an incurable disease, an "orphan disease" which is a pitiable term meaning that there are no doctors in my country with any kind of knowledge of it, and there is no funding being allocated to rectifying that. When I meet a new doctor, I have to spell out my disease so they can Google it, and then I am their guinea pig while they throw treatments at me just to see if any stick. They never really do.

I wake up in pain every day of my life.
No, that's not quite true. Some days I don't wake up because I was in too much pain to sleep.

My good days are more than enough to keep most people in bed but I lived that life in the early years of my diagnosis, and it's not for me. Lots of people with my disease are on disability, but I'm trying not to be one of them. Instead, I structure my life around my pain in order to live as fully as I can.

I worry about everything. I start my day measuring my pain, and measuring my energy. Do I have enough energy to shower? Will the effort of washing my hair sap me? Will it waken some new pain, exacerbate an existing one? If I spend energy on my hair, will I still have some for drying it, and styling it?

I wear the same outfits too often because they're closer to the front of my closet, and that's easier.

I don't go downstairs for a glass of water. I wait until I'm hungry too. Fewer trips, as few as possible.

I don't shop. I used to like shopping, but now I get my clothes, shoes, and gifts mostly online. If I have to go to a mall, I plot out the easiest path between two points. I don't try stuff on. That kills me. Last week I needed to replace a pair of shoes, so I picked out ones I already had. The sales clerk retrieved them from the back and took them out of the box and placed them on floor for me to try on. I stood there staring at them until my husband picked them up and took them to the cash to pay. He holds all the bags because I don't need any extra burdens. He'll also carry my purse, and my coat. Constant infection means constant fever means overheating and possibly getting dizzy and passing out. I spend a lot of time waiting outside of stores, or looking for benches and a quiet place to meditate, or leaning on my husband while I catch my breath because I've just been wracked with pain and it literally took my breath away. I only shop on my "good" days, but I never know how long a day will stay good for. Pain can escalate extremely quickly. And sometimes energy just runs out - did that extra care taken to shampoo my hair come back to bite me? Maybe. And what if I'm in the middle of the mall when suddenly I just can't anymore? That's a long, agonizing walk back to the car.

I've stranded myself at work I don't know how many times. I did too much, pushed myself too far, and suddenly I find myself exhausted or too crippled to drive myself home. I long for privacy and a safe place to lie down, but I have to wait to be picked up by someone because I can't get there on my own. My car has spent countless "slumber parties" in parking lots, waiting for the day when I feel well enough to pick it up.

Sometimes I send something to the printer and then leave it there for a week while I try to work up the strength to go get it. I don't want to use up all my energy on a stupid print out and then not be able to get myself home. Sometimes I don't go refill my water bottle, not just to conserve the energy that the water cooler trip expends, but also the future energy spent on bathroom trips. I don't always have a chipper hello for everyone in the office because I have to choose between them and my clients, and I'm giving everything I have to my clients. I call my colleague to meet me in the parking lot so he can grab my bag. My husband drives to my office during his work day so that he can try to improve my parking spot for me. He knows that at the end of the day, I won't feel up to crossing the lot.

I avoid going over to someone else's house. I worry about my comfort, not just physically, although that will always play a part. I worry about looking weak in front of people. About letting them see me struggle to find accommodation in foreign surroundings. I don't like to sleep in someone else's home because I don't want to disturb them when I'm up all night. I don't want them to find all the bloody gauze in the trash. I don't want someone else's sheets scabbing into my wounds during the night.

Travel hates me. I love to see new things and go to different places, but getting there is agony. Long car rides mean I go deep into meditation just to survive. My husband feels like he is driving a corpse. We spend the first few days of our vacations trying to recover from the trip and the last few days dreading the return. And car rides are my best bet, because I can control things while limiting how many people can see my pain. I can't ask a pilot to pull over so I can stretch.

I keep the house barely above freezing (62ish, and my husband's toes are blue!) because it's the one time a year I can live comfortably, temperature-wise. I still sleep with the fan at night though, because the night sweats are terrible and the fever just doesn't stop.

I'm afraid to make plans because I'm afraid I'll have to cancel them. I don't want to be that girl, but I am that girl. I try to be optimistic about my health and about my ability to do what everyone else is doing. But sometimes, on that day, it's just not reality. I can't always keep up, but I try my best to fake it. People ask how I am and I lie and say I'm "fine" but actually, I don't even remember what fine feels like. People love to tell me I don't look sick, or that I seem better and I love to fantasize about punching them in the face. I know these people are actually mostly well-intentionned, but when I have had to struggle all day long just not to die, the last thing I want is for someone to invalidate that challenge and that triumph. I know my friends are all burnt out on my condition. Nobody wants to hear me complain, least of all myself. So I mostly keep it in. But just because I'm not crying doesn't mean I don't need to.

I don't want to hold up the group and I don't want anyone to notice I'm lagging behind. I don't need the pressure of extra attention or solicitousness. I know you mean well, but I'm trying to preserve my dignity. I change my bandages in private. I cover up my scars. I'm trying to pretend.

I come home shaking because of all the effort I've spent pretending to be human. By the end of the day, it's not just my diseased areas that hurt, it's my whole body. The healthy parts spend the whole day compensating for whatever can't pull its weight, and my muscles are sore and overworked but they can't take a break because they're all I have left.
If my pain level has been too high for too long, I'm on sensory overload and I can't take a single thing more. Don't talk to me, don't look at me. No, it's not you. It's me it's me it's me. Just give me a minute. My back aches but I can't go for a massage because I'm too sore to be touched. Or to climb up on a massage bed, for that matter. I'd feel better in the bath but I can't get into it. And if I do get into it, I overheat and have to be helped back into bed, with the fan on full-blast. The hot tub is tantalizing but even if I make it down the stairs, the cover is so heavy and I am so weak. All my clothes have bloodstains. My nightmares are vivid from pain meds. My face is swollen from the inflammation. My diet is severely restricted. I groan involuntarily. Sometimes I watch movies standing up in the back of the theatre. I fight back tears on long flights. I claw my husband's hand during a lengthy speech. I leave my groceries behind because the line was too long. I take breaks. I take breaks from walking, breaks from sitting, breaks from standing, breaks from reality.

I don't use a wheelchair. I don't even have a limp. But I have days where every step I take is pure torture. Where each step is another little squirt of blood that I can't really afford to lose. Another chance that the infection will spread and become life-threatening.

It's exhausting and overwhelming and degrading. And it's my life. It's not a bad one, actually. There's a lot of love, and a lot of joy. But everything comes with a price, and I pay it. Because people with disabilities don't really have a choice. We haven't asked to live like this, but we must. I have a disease that is potentially life-threatening but most people who have this diagnosis die by their own hands. Depression is rampant. Chronic pain is isolating, and lonely. We can only really be understood by each other. We suffer largely in silence.

Our hidden disabilities often come with another kind of pain - pain from being misunderstood. Left behind. Labelled "lazy" instead of "sick". Judged. I read once about a little boy with his own invisible illness who would wear an ace bandage around his wrist on his bad days to let the world know that he needed just a little bit of understanding on that day. I thought about what kind of badge I could wear, what kind of signal I could give to let others know that I too needed a little tenderness that day. But then I realized, it's as simple as this: am I breathing? Then I am hurting.

Please take the time to share this post.
Let the world know that disabilities come in all shapes and sizes.
Let the brave face drop just for one day.


Julia said...

Thanks for sharing. I may be a far away virtual friend but I'm always here for crying or whatever. I won't ever be burnt out on listening to you. You have made me smile too many times for that.

Julia said...
This comment has been removed by the author.
Jude said...

Geezass Jay, I had no idea.... you do hide it well, all these years. Are you able to say what you have that makes you suffer so?

You have my respect and my never ending hugs...

Cheapchick said...

Wow Jay, I read this and all I can say is Wow. I too have a disease you can't see, where they label you lazy but nothing like what you go through. One of those that the doctors like to fill you up with pills that just give you side effects. I drag my butt to work and come home exhausted every day but it sounds like so much more is happening to you. I understand the hubby thing, it is hard on spouses, even when they know what is going on it is hard for them to always be understanding. Thanks for stopping by my blog, and thanks for writing this post.

Wil said...

I have been surrounded by the disabled all my life. Now I am one. A great piece of writing, Jay.

I'm not sure you'll understand me as I say thank you, you're my hero. Trust that I have no tolerance for chronic pain so would choose the cowards relief over the choices you make daily.

Consider this post shared with my miniscule readership.

Maven said...

I, too, have chronic issues, though not one issue, more like a constellation of issues. And if it's not depression or anxiety keeping me home, then it's the physical pain. And that assessment of pain? Every day. Yep. Here too.

Have you ever read Spoon Theory? It's a great essay of sorts on trying to quantify something so unquantifiable for people who don't deal with chronic issues.