I "met" a lady through a telephone contact a couple years ago, and we keep in touch on a regular basis. She's been pretty much bedridden for over 12 years (!). That number of years amazes me, I must say. And I often think of her when facing my own health struggles. HOW has she managed life from bed? HOW does she get through her days, day after day after day? HOW does she deal with the isolation, the frustration, and all the emotions one faces in that situation?
In our last conversation, she said how much harder it has become to get out (of the house) at all, even for doctor appointments (the places where someone should get help for these sorts of medical problems that restrict one to being so "homebound"). First, it is physically hard to go out. Getting bathed/showered, drying off, picking out clothing and dressing are already hard for her to do. She has dystonia, a condition that literally twists and pulls parts of the body in varying directions. Her head might pull far to one side for hours, days or months, while her upper body is pulled to her knees. Her legs decide independent of each other whether one leg is twisted outward while the other twists inward, or whatever direction. Lying down is this woman's only relief, but that relief is marginal. The twisting can still pull her body around and about in bed so badly that her legs, or whole body, is thrust off the bed and onto the floor. And from there, she has to figure out a way to pull her body back up into bed! As you can imagine, such a condition would interfere with "everything" normal people do everyday: cooking, eating, fluid intake, bathing/showering, dressing, using the bathroom, and even sleeping!
While the physical aspects of moving her body from place to place is difficult when she has to leave her house, the emotional & psychological toll is quite painful too. The fact is, society rejects persons with disabilities. Folks don't understand or are even frightened when they see someone who is "different." Worse, folks in the world (including doctors, nurses, & allied medical staff) can be outright rude, ignorant, demeaning, and humiliating to someone with a physical disability! My friend confided that anymore, she'd just rather NOT even try to go out - even to go to the doctor! (Remember? the very place one should find understanding and help in dealing with chronic medical problems...) But, that isn't what my friend finds, and the way she is spoken to and treated (the attitudes of many) simply makes it harder to allow herself, and her disability, to be seen by outsiders.
I know what she means. I know first-hand. My level of pain when out of bed is extreme, within seconds becoming unbearable (despite the strong pain meds I'm on). I need help getting ready to go, just like my friend. Walker and wheelchair help me get to the door since I can't walk the full distance myself. Then two people must help me out the door and down 4 steps to the vehicle, where I *must* lie on the back seat of the van. It isn't a choice I made, but a requirement imposed on me by pain and medical problems. When traveling like this every 30 or 60 days to the doctor's office, my view of the outside world consists of seeing the tops of telephone poles, sets of 2, 3, or 4 wires stretched between them, and the assorted sizes of transformers and cable television amplifiers and connector boxes attached on wires or the tops of the poles. I've resisted counting the poles; that would be too much a self-inflicted insult, almost that I was giving in to my medical situation, and counting telephone poles the only way to use my brain.
I've also experienced the attitudes society shows to disabled folks. I'm ignored. Or talked about as though I am not there, incompetent, or unable to speak. Indeed, *I* am there, I'm not incompetent, and can definitely speak for myself! Yet, even medical staff convey an attitude of dismissal. "What is she here for," staff will ask my friend, the person who's given me the ride to the doctor. Or "We need you to sign her consent forms," said with me right there. They don't even address me, not one "hello" or "how are you today," or "what do you need?" No, they talk TO my friend ABOUTme, but they do NOT talk to ME! And I have to interrupt their attention to my friend, "Excuse me, but I can do my own paperwork and I can answer your questions myself!" There is NO excuse for this kind of thing happening, simply because one uses a walker, cane, or wheelcahair, or is in pain. Once they permit me to lie down in the exam room, my pain drops and it's about the same as if I was at home. You cannot imagine the humiliation and degradation I feel though after visits like these! I want to scream: I AM HERE, RIGHT HERE! QUIT TALKING ABOUT ME LIKE I AM NOT PRESENT! HOW DARE YOU ACT LIKE I AM NOT A FUNCTIONING ADULT! They treat disabled persons like children who cannot commincate intelligently, and who must have (or need) a guardian! So every time, I have to make it real clear that just because I've been ill does not mean I am invisible, incompetent, inarticulate, or require someone to think for me. Sometimes, my message actually gets through (gratefully!), except that I find I have to repeat the same message everywhere, every time. Dealing with the physical pain of going out, along with the way others treat me, just wears me out physically, mentally and emotionally.
On a particularly bad day on my most recent trip to my family physician, I told my doctor "This is just getting too hard to come out to see you." Sounds funny to say, in light of the fact I am *IN* a doctor's office (you know, where help should be found?).... but it's true. My friend and I both end up needing almost a week to "recover" physically from just having gone to the doctor! Muscle spasms must calm down and the additional pain caused by the trip slowly gets relieved -- back to our "normal" levels of extreme pain we have when staying home. My back muscles must release their diseased grip, so that I can again stand straight or walk just one step by the end of 7 days of being just at *home* again. But the humiliation that was inflicted, that takes longer to wear off, and be gone from everyday thought. "I have no purpose, and no place out in the world anymore" my friend tells me. Yes, that is the feeling which gets reinforced by society. And it takes more self talk than saying "that isn't true" to get over each incident in which someone has put you down, intentionally or unintentionally. Maybe the self-talk would be more effective if incidents did not happen every time you leave your house. My friend and I wouldn't need to battle those negative messages at all if society was actually accepting of someone with a disability.
I have to go to the doctor tomorrow.
Like my friend, I'm not looking forward to going out, even though I *crave* just seeing the sky, the sunshine, and someplace other than my home.
I dread the pain I know I will be in from the beginning of this.... to the time I return home, and dread the hours and days that increased pain will rule everything I would normally be able to do at home.
I resent that I will be treated poorly as a result of other people's attitudes when they see me as being only my disability. I hate how much those attitudes impact me and make me feel bad about myself.
Sometimes I want to make index cards with different messages on each one, and hand them out. The cards would say things like:
I AM A PERSON.
I CAN HEAR WHAT YOU SAY ABOUT ME WHEN YOU TALK TO SOMEONE ELSE AS THOUGH I AM NOT HERE.
I SEE YOU. -- DO YOU SEE ME?
I AM NOT BRAIN-DEAD.
I CAN SPEAK FOR MYSELF (AND YOU SHOULDN'T ASK A PATIENT'S FRIEND QUESTIONS THAT SHOULD BE DIRECTED TO ME!)
I CAN READ - DESPITE MY DISABILITY.
I AM NOT INCOMPETENT.
I CAN THINK FOR MYSELF - DESPITE MY DISABILITY.
MY PHYSICAL PAIN IS SOMETHING I MUST BEAR, BUT IT IS NOT A BARRIER TO YOU TALKING DIRECTLY TO ME.
AND LASTLY....
YOU ARE JUST ONE SMALL SLIP, ONE FALL, ONE ACCIDENT OR ONE BAD MEDICAL CONDITION AWAY FROM BEING IN MY SITUATION. THINK OF HOW YOU ACT TOWARDS ME BECAUSE WHAT YOU SEE IN ME COULD AT ANY TIME DAY BE YOU.
OH, AND ONE MORE:
BE THANKFUL FOR YOUR HEALTHY LIFE. IT CAN BE TAKEN AWAY IN A SHORT SECOND.
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