Category Archives: disability

doctor

One of the by-products of my recent-ish divorce is that I just barely got my own health insurance policy. It’s the first time that I’ve had insurance on my own (not as the result of being a dependent of someone else), and seems a pretty big step for me in being financially and legally independent.

So recently I saw my new doctor for the first time. I went specifically to get a prescription for some changes to my prosthesis. When we met I explained to him exactly what I needed, gave him the contact info for my prosthetist, etc. I didn’t expect for him to examine me, nor did I even sit on the exam table in the room. Also, when he queried me about whether I was up to date on my vaccinations, I could tell that my reply left him a little bit speechless.

“How do you know so much about this stuff? He asked as he gestured to a screen on his computer showing checkboxes for my immunization record–just after I’d given him a 10-minute spiel about the Tdap vaccine.

“I’m a medical historian, with a strong research interest in resurgent disease.” I replied.

I must say, there’s something about going into a doc’s office with some confidence, knowing exactly what I need and how to get it, that tends to offset any anxiety that I feel from having had so much medical trauma in the past. Perhaps it’s a bit intimidating for the physicians that I interact with–but I think they tend to find it rather refreshing among the garden-variety sore throats and coughs that they see all day long…

walking

Today at lunchtime I walked a few blocks to my favorite coffeeshop and had a quick sandwich. Then I picked up a latte “to go” and headed out the door.

I wasn’t sure where I was headed, only knowing that I needed to walk for awhile. I meandered past rows of historic cottages, smelling the roses that drooped over picket fences. I walked past the student housing, seeing the undergrads milling around and heading back to campus for class. I crossed block after block of streets where I’d never walked before.

There was an inordinate amount of pleasure in feeling the wind pull my skirt around my lower legs, and whipping my scarf out in front and to the side of my body. The dark clouds that were overhead when I began my walk were mostly gone by the time I finished, and the sun was shining.

Earlier this morning, I’d logged into an interesting web-based project called “The Wilderness Downtown” that overlays images of running children with a googlemap of your childhood home (try it, it’s quite powerful). As my address, I entered in the home where I lived in Colorado–coincidentally the place I lived when I slowly lost my ability to run–as my knee lost its strength and flexibility while filling with cancer. I can’t remember the last time I was able to run, although I do remember trying that one time in 7th grade PE class when we were doing hurdles and I found that I simply couldn’t shift my weight onto the sore knee anymore.

The project prompts you to write a postcard to your childhood self. What I wrote:

“You will never run again. But you will walk. Miles and miles you will walk. And you will ski, and bike, and paddle, and swim. Sometimes you will cry, and hurt, and be alone. But more often than that, you will smile and laugh and have people to love.”

to take what is given…

An excerpt from “Daisies” by Mary Oliver:

…What do I know.
But this: it is heaven itself to take what is given,
to see what is plain; what the sun
lights up willingly; for example–I think this
as I reach down, not to pick but merely to touch–
the suitability of the field for the daisies, and the
daisies for the field.

After realizing how my skewed “sunny-side up” view of the world contributed to the breakup of my marriage (because I simply wasn’t able to see what was in front of my eyes since I was so comfortable in my own view of the world), I decided I should probably tone down my rosy-colored outlook. It seemed that I would be better served by having a more realistic, perhaps even more somber, perspective. I began to wonder if I even really felt the events of my breakup, since even in the dark times so many moments of beauty came bubbling through. And even in the midst of those first few awful days, I could still see so much good on the horizon. What was wrong with me, I wondered, that I didn’t cry and scream and yell and melt into a ball of sorrow? Instead, I wandered gardens and embraced friends and enjoyed my children.

My insistence on optimism is a long-honed skill that stems from the difficulties of living with a disability and the residue of having survived cancer, as well as a variety of other personal setbacks. I simply can’t seem to sit in the midst of a storm without seeing a silver lining. I deliberately choose happiness over sorrow, every time. Like the poem fragment above, I believe in “taking what is given” and seeing the light, whatever difficulties are thrown my way.

But I don’t sit around with my head in the sand denying life’s cruelties, either. For example, for my dissertation research I purposefully chose to study the awfulness of life. Children suffering from horrific incurable diseases. Scores of soldiers dying for want of care. I pore over case studies of bodies mangled by machinery, or injured by the foolishness of quack remedies. I hold these stories in my heart, trying to make sense of a world where people suffer so often and so deeply (and, so needlessly)…

But I think you can know the awful and still see the beauty. Which reminds me of a favorite quote from The Man of La Mancha:

When life itself seems lunatic, who knows where madness lies? Perhaps to be too practical is madness. To surrender dreams — this may be madness…Too much sanity may be madness — and maddest of all: to see life as it is, and not as it should be!

a new socket

If all goes well, today I’ll be getting a new socket for my prosthetic leg. This has been (too) long in coming, mostly because I’ve been traveling or living away from home for the past 6 months. Getting a new socket involves a series of ‘test socket’ fittings and numerous small adjustments to get the fit just right. Even a minor misadjustment can result in painful sores (or, as the case may be, ugly skin infections that result from such sores). So it’s important to be available for adjustments in the weeks that follow after getting the new socket.

Most of all, I’m looking forward to having a leg that doesn’t just “fall off” at random times. Though I think I’ve become rather adept at covering those moments that my limb spontaneously detaches from my body, it’ll be a relief not to have this as a constant concern…

One question that’s on the table for me again is whether to get ‘cosmesis’ (or an aesthetic, symmetric covering) on my leg. I go back and forth on this. I like letting my robotic innards show, but it draws a huge amount of attention in public and it also reinforces my disability in ways that make me uncomfortable. Added to that is the fact that clothes fit oddly when one leg has a normal-to-largeish diameter and the other has a 4″ calf. Perhaps I ought to go with the steampunk look, or go with a new 3-D print fabrication method? I haven’t made up my mind yet…

For further reading, some of my older posts about my leg:
A Photo Tribute to a Well-Traveled Limb
I, Robot
With a Leg to Stand On
The Ocean & Me (where I discuss my ‘beach’ leg)

and surrender…

When John told me that he was leaving me, he revealed some pretty ugly things–most of which I won’t write here. But perhaps out of those the one that surprised me the most, was when he told me that he’d basically checked out of our marriage two years ago when I was ill with that mysterious antibiotic-resistant infection. He explained that it was just too much for him to endure–caring for me with no certainty that I would ever get well again.

He was so gracious and kind during that entire illness, I never knew that it had been so terrifically difficult for him. Indeed, I was quite surprised to learn that that was the breaking point. Perhaps not coincidentally, I’d been thinking myself recently about how difficult it’s been to care for John during his ongoing degenerative issues with his back and hips. For about four years John’s been nearly-unable to walk more than a few blocks (sometimes not even that far). When we’ve traveled, we’ve pushed him in wheelchairs at museums and altered our typical on-foot walkabouts to short jaunts to accommodate John’s limited mobility. For a long time he was unable to even walk through a grocery store because of the severe pain that it caused him. I’d wondered how I would handle life with a spouse who had such a long-term physical limitation, and was hoping that I could do so with as much aplomb as John had done with my various health problems…but I had concerns about keeping it up–his pain made him short-tempered and frustrated. He was so much more difficult to live with than before. He lost his energetic “bounce” (I missed that part of John’s personality quite a lot).

So what I wonder is this….at what point do we throw in the towel on our relationships when things don’t turn out as we expected? And when do we hang in there, even at a high cost to our own autonomy?

Some of my thinking along these lines also has to do with recent encouragement from friends for John and I to reconcile. Part of me wants to fight and hope that we could make our marriage work again (as I have many times before), but I fear that isn’t a choice I even have the liberty to make–John seems quite sure that he’s done with us (and with me). But I wonder, have I given up too easily? Is there something more I could or should do? Or some concession or change that I could make that would make John feel happy again?

Or is it time to wave that white flag and move on, realizing that I just can’t endure it any longer?

Some thoughts on #genderd, bathroom stalls, and walking in the dark…

Me, at work

Tonite’s post finds me snuggled in on the couch. I’m sneezy right now, and my glands are swollen. That’s probably far more than you wanted to know about me, but this post is going to have a bit more TMI than my usual, so I thought I’d just get warmed-up from the get-go….

For quite some time now I’ve been meaning to follow up on my #genderd experiment. At the close of that day, one of the things I realized was that I never tweeted about using the bathroom. And I should have. It’s one of the most explicitly gendered choices I make several times per day at the office. I work on the floor of a building that has two restrooms. They are both single stalls with locked doors. One has signage for men, and one for woman. Or at least, they did back on September 1st when I did my #genderd experiment. But shortly after that day, I received an email from Chapman University’s SafeSpace Committee saying that they were working to locate all single-stall bathrooms on campus and change them from an assigned-sex bathroom to a gender-neutral bathroom. So I replied to them about the ones on my floor and suggested that the change would be particularly welcome because the floor primarily has women’s offices, so there can often be a line for the women’s bathroom, but I’ve never seen any men waiting in line for their designated stall. And honestly I thought many times about just using the men’s stall myself–given that it had a locking door, what would be the harm in doing so? But because I still felt so new at my job and I felt too uncomfortable to push the social boundary of using the opposite-sex bathroom stall in front of my colleagues. So I didn’t.

When I returned from my trip last week I discovered new signage on the men’s stall. It now has a men/women/wheelchair sign, while the women’s bathroom stall signage stayed the same. I think that’s peculiar, but I haven’t yet written to the the campus sign-maker to see why both stalls weren’t given the same signs. But perhaps what’s more interesting, are the surprised looks on the faces I’ve seen when I use the now-gender-neutral stall. After I exit that door I’ve seen colleagues walk up very close to the sign as if to see if it’s “real.” I’ve only seen one other woman ever use it, and she wasn’t a regular on our floor.

While I think having one neutral stall on the floor is certainly progress, I still think it would be far better to have two neutral stalls. Because it seems that as long as there is a women’s stall, the other stall will be “not women’s.” However, it could be that the reason they kept one as women’s is that it includes the wastebin at the side of the toilet for “hygiene” products (what a janitor friend of mine affectionately called the “cigar box”), and the formerly-men’s bathroom doesn’t have that feature. I’ve also noticed each time I use the not-women’s restroom that the toilet seat has been left up. I’m going to guess that that’s a leftover from when it was a “men’s” stall only.

And…speaking of men…

Last week I had the strangest concurrence of experiences. By the third time it happened I was so rattled, I could hardly make my way back to the place where I was staying for the night…

Three times in three days I had men call me out in public space, yelling sex-laden obscenities. What is probably most bizarre about this experience is that I’ve never had a man even so much as whistle my direction before (unless, perhaps, it was my partner being playful). Catcalls from strangers seemed like something that happened to streetwalkers and not to women that look like me. I suppose I’ve never experienced this because I don’t often walk in urban spaces–I’ve tended to live in middle-class suburban areas. But I also suspect that women who are disabled are far less likely to garner attention from male strangers.

The third time this happened I was alone and in a fairly deserted area of a city where I knew I probably shouldn’t be walking at night. But I was hungry and there was a corner store a few blocks away. I was sure I’d be just fine. And I was. But having a group of men following behind me and hurtling obscenities my way as I walked down the block? I was so scared. What was I scared of? Scared, knowing that I couldn’t run if they came after me. Scared, because I didn’t think I could dial anything coherent on my cellphone of they neared. Scared, because there was no one else nearby to hear if I should scream. Looking back on it now, it’s possible that these men might’ve even thought that they were flattering me with their opinions about my body. Perhaps they thought that I would respond back playfully or provocatively. But I think they knew that what they were doing was cruel and that I was scared shitless, despite my attempt to walk even more tall and confidently down the block as the vulgarity continued.

There was nothing in my clothing or in my behavior that indicated that I would be a target for men’s attention. I have a “boy” haircut, I’m nearly 40 years old. I was not wearing makeup and I was wearing “Mom” jeans (read: not sexy). But I was identifiably female, still, which is why I suppose I was a target.

I deliberately choose to raise my kids in an upper-middle-class neighborhood where just about anyone can safely walk at night. Though there are occasionally some college rowdy college students around, there is little to fear in my environment. There are, of course, costs to living in such a homogeneous suburban community, and lately I’ve wondered if we haven’t veered towards being too “safe” in choosing a place to live. For example, I relish the vibrancy of the urban neighborhoods that I found on recent travels through Oakland, San Francisco, and in San Diego, and felt the contrast to our “vanilla” community quite keenly. And while I usually don’t feel that I fit in my neighborhood (I am not really a vanilla gal, myself), it would be hard for me to change now if it meant facing the kind of jeering that I experienced last week on a regular basis. I suppose I would get used to it–perhaps even expect it. But it’s hard for me to imagine that now, I suspect I might just always be afraid.

cumbersome

Have you ever used crutches? If so, you know just how cumbersome they can be. If you’re not actually walking with them at the moment, they’re either underfoot tripping someone or they’re leaning against a wall and in an inconvenient space. They’re also pretty hard to stow in most compact cars.

One of the things that makes travel a challenge for me is that I always bring crutches along. Because if I don’t have a set, I’m likely to be in a circumstance where I’ll lose my mobility. Like maybe I’m staying in a hostel and the bathroom is more than a few hops away from my bed. Or maybe I want to swim in a pool and there’s no dry safe space for me to stow my bionic leg within an easy skooch from the pool (and given that it costs $25K for the knee alone, it’s not worth risking some random splashing). Or maybe (just maybe) I want to spend some time at the beach and get my foot wet. In any of those circumstances I really need the crutches.

But carrying crutches around along with luggage is such a pain.

On my last speaking stint I arrived the night before and stayed in a hotel so I would be fresh for the next day’s talk. But because I was checking out of the hotel on my way to the talk, I had to bring my luggage with me. Which also meant bringing my crutches. It was more than a bit awkward to arrive at my speaking engagement with an overnite bag, crutches, and my presentation materials.

And this next trip that I’m going on to the Bay Area, I’ll be moving from one sleeping place to another at least three different times in one week. And each time that’ll mean using public transport with crutches and bag(s), perhaps lugging everything along to conference events and campus visits. I keep trying to figure out some way to not have to carry those crutches along every time, and….I think there isn’t one. I feel so terribly whiny admitting my annoyance at those crutches.

Interview: Gary Presley, author of _Seven Wheelchairs_

Today PilgrimSteps offers my interview of Gary Presley, author of the recently-published Seven Wheelchairs: A Life beyond Polio.

From Kirkus Reviews: “The painful story of what it’s like to become crippled as an adolescent and forever dependent on others.Now in his 60s, Presley got a booster shot of the Salk attenuated polio virus vaccine in 1959 at age 17. Designed to enhance immunity, the virus instead produced major paralysis, which required the boy’s removal to an iron lung and then to a series of rocking beds and mechanical devices to force air into his lungs…Now some 50 years and seven wheelchairs later, Presley recounts his evolution from the deep anger, self-pity, frustration, passivity and hostility of those first decades of bitterness and depression to his emergence as an adult. It didn’t help that he spent those early years as a “crip” on a Missouri farm with a stoical, stiff-upper-lip dad (his mom was loving and devoted). Nor did it help that about the time both parents were dying, he fell ill with post-polio syndrome. That he recovered, could work, fall in love, marry and convert to Roman Catholicism are part of the trajectory toward a happy ending. But not quite…But he has become a fighter, raging against the pity and stigma experienced by people with disabilities, as though they are less than human…for readers who remember the era of infantile paralysis and newsreels of children in iron lungs, Presley’s descriptions of exactly how they work, as well as the daily care that paralysis demands, are a revelation.One of the more honest and informative disease memoirs.”

1) What led you to write a book about your experience with disability?

As I grew older, I began to realize “Hey, I’ve used a wheelchair for four decades. I thought that … well, rather interesting, but I had never written much about the “disabled experience.” Then, on a lark, I wrote an essay titled “A Pot to Pee in,” which was really an assembly of random thoughts about the bad ol’ days when people who used wheelchairs could rarely find an accessible restroom. Friends on a writing critique list said “This is good stuff. Write a memoir.” The first fifty thousand words came easily — all the dramatic stuff that makes TV shows like “ER” popular — and then it took a bit longer to get to the philosophical points.

2) Has it been difficult for you to discuss your experiences with disability when this is generally a ‘taboo’ subject in American culture? Why or why not?

Disability is a fear-filled subject, I think, rather than one that’s entirely taboo. People want to talk about disability only in the sense of the “Overcoming Hero” story. To think — to discuss, to write — about disability in the context of daily life reminds people that the Universe sometimes sneaks up and bites people in the fanny. In the memoir, I refer to myself as a “burnt out case” (an allusion to Graham Greene’s novel), which in the context of your question means I don’t much care about the emotional aspects of “The Life Disabled” any longer. To me disability is reality. Why disguise or avoid what cannot be changed?

3) Do you think the main audience of your book is people with disabilities, or those without disabilities? Why?

I think my book is written for those who want to read about people in all their unique manifestations. I’m fascinated by history, and by the place people play in history, and how the individual fits into (or is excluded by) society. People can read it and learn we (meaning even gimps like me) are all mortal creatures — driven by intellect, emotions, and some sort of immeasurable spiritual factor.

4) What is your advice for aspiring writers who may also want to write a memoir about their experiences with disability?

Don’t begin unless you’re wiling to learn more about the person you may really be … I cannot say that I knew Gary Presley entirely until I finished Seven Wheelchairs and then began to contemplate what I wrote. I pray I’m not deluded, but I think I like myself a little better now.

As to the practicalities of the writing process …
–Write every day.
–Join a critique group, preferably an online one where people will be more apt to tell you the truth about your work.
–Take criticism without becoming defensive.
–Regard criticism as opinion.
–That means stay true to your voice and your message.
–Grammar and syntax are important but not as important as the story and the truth it contains.
–Tell the truth even when it hurts, especially if it is painful for you to tell it.
–Remember the truth is sometimes subjective, which means each person perceives events and people differently.
–Believe in your truth.
–Prepare to be rejected, multiple times.
–Persevere in the face of those rejections.

5) Can you share a short passage from your book so we can get a feel for your writing style?

Here’s a bit describing one of my first encounters in the rehab center:

In fact, no one ever asked me, “What would you like to do with your life? Or how do you plan on earning a living?”
I wish they had. And I wish I had known the question needed to be asked.

This was 1960, and the subtext of every interaction between patient and staff was to teach the patient how to cope with the effects of a disability, and it ended there – You’re crippled. You’re going to be crippled the remainder of your life. This is how to put on a shirt. This is how to pee in a urinal while sitting in a wheelchair. Here, when you’re finished, you can make a leather wallet to keep busy until it’s time for your favorite television show.

No one expressed any idea that it might be preferable – or even possible – to integrate people with disabilities into society. No one said, “Some sort of disability, some sort of disadvantage, visible or invisible, is part of the human condition. Live fully with yours as you see it. Be assured others do as well with their own perceived disability, visible or not.”

The lesson I needed then could have been stated bluntly. You are a cripple. You will never walk again. You will be dependent on the care of others. Cry and complain for a while if you like. That’s normal. Then find something useful to do with your life.

If you would like an autographed bookplate to place inside your copy of Seven Wheelchairs, please contact Gary at garypresleyATgmailDOTcom.

Who am I to say?….

This quote is from an LDS church statement on homosexuality. The church leaders interviewed are equating the challenges of homosexuality with those of disability, explaining that just like someone with a life-altering disability has no hope of marriage, neither does someone with strong homosexual proclivities.

I don’t even know where to begin a discussion about how troubling I find this statement. Can any of you help me out here??

ELDER OAKS: There are differences, of course, but the contrast is
not unique. There are people with physical disabilities that prevent
them from having any hope — in some cases any actual hope and in
other cases any practical hope — of marriage. The circumstance of
being currently unable to marry, while tragic, is not unique.

It is sometimes said that God could not discriminate against
individuals in this circumstance. But life is full of physical
infirmities that some might see as discriminations — total paralysis
or serious mental impairment being two that are relevant to
marriage. If we believe in God and believe in His mercy and His
justice, it won’t do to say that these are discriminations because
God wouldn’t discriminate. We are in no condition to judge what
discrimination is. We rest on our faith in God and our utmost
assurance of His mercy and His love for all of His children.

ELDER WICKMAN: There’s really no question that there is an anguish
associated with the inability to marry in this life. We feel for
someone that has that anguish. I feel for somebody that has that
anguish. But it’s not limited to someone who has same-gender
attraction.

We live in a very self-absorbed age. I guess it’s naturally human to
think about my own problems as somehow greater than someone else’s.
I think when any one of us begins to think that way, it might be
well be to look beyond ourselves. Who am I to say that I am more
handicapped, or suffering more, than someone else?

I happen to have a handicapped daughter. She’s a beautiful girl.
She’ll be 27 next week. Her name is Courtney. Courtney will never
marry in this life, yet she looks wistfully upon those who do. She
will stand at the window of my office which overlooks the Salt Lake
Temple and look at the brides and their new husbands as they’re
having their pictures taken. She’s at once captivated by it and
saddened because Courtney understands that will not be her
experience here. Courtney didn’t ask for the circumstances into
which she was born in this life, any more than somebody with same-
gender attraction did. So there are lots of kinds of anguish people
can have, even associated with just this matter of marriage. What we
look forward to, and the great promise of the gospel, is that
whatever our inclinations are here, whatever our shortcomings are
here, whatever the hindrances to our enjoying a fullness of joy
here, we have the Lord’s assurance for every one of us that those in
due course will be removed. We just need to remain faithful.