Category Archives: amputee

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…

random (happy) thoughts for a sunny Sunday afternoon

Some things that are making me smile today:

  • Ellycat napping in the warm laundry
  • Using the Matrix to book an upcoming flight to Europe (still can’t make up my mind whether to fly to Rome, Paris or Brussels, though)
  • Spending a few moments in a train station bright and early this morning.
  • A smooth brew from my new coffeemaker
  • The pleasure of reading a great novel, each paragraph a delight.
  • Huge fresh scallops lightly seared on each side on the grill, each one a mouthful of Cape Cod memories
  • Finishing up that one last dissertation chapter(!)
  • Fixing my son’s bike, and taking it for a spin (it’s been way too long since I’ve been on two wheels)
  • Getting Things Done (I do so love checking things off of my to-do list!)
  • This one will be hard to explain to anyone who doesn’t understand the mechanics of my right leg’s socket suspension: but today I got a new liner in the style that I used to wear–with one wide seal rather than a row of four small ones.  Putting it on was comfortable like slippers.  And then realizing that the other style was probably contributing to so much of my discomfort for the past few years, especially my inability to hold suction when riding a bicycle–it’s hard for me to explain how much small changes in my leg affect my level of comfort.  It’s sort of like the princess who couldn’t sleep well when there was a pea under her mattress–any little change in my leg makes everything else either more challenging or much less comfortable.  And given how reliant I am on my mobility, it’s quite satisfying to get a fix that makes things feel ‘right’ again.
  • Sunshine on the couch, sunshine on the porch, sunshine on my bare shoulders, sunshine so bright that it makes me eyes water.  🙂

ballet class

Just a few days ago I was sitting in my office and a ray of sunlight hit the facets of a stone in a necklace that I wore around my neck and threw gorgeous sparkly patterns on the wall opposite my desk. Every time that happens I’m taken back to a time when I was a little girl sitting cross-legged on the wooden floors of a dance studio, wearing a turquoise leotard with my name embroidered in pink thread on my left shoulder and soft pink slippers with an elastic band across the top of the foot that was hand-sewn in by my mother. Miss Larkin would often start our lessons by pulling a delicate pair of slippers from her bag that were embellished on the edges with rhinestones. She would hold those shoes up high so they would catch the light from the windows and throw “fairy-sparkles” all around the room. She would then tell us that a dance studio was a magical place and show us how ballerinas walked (gently, with toes pointed out, arms held out at sides). She taught us how to move with grace and purpose, as well as how to stretch and arch our backs into bridges and baskets for the fairies. Miss Larkin didn’t believe in tutus and recitals–she believed in practice. Which we did.

Though I went to dances when I was in high school and college, I’ve rarely danced in recent years (except a brief stint to teach myself some bellydancing moves in an unsuccessful attempt to strengthen my hips and abs). For me, dancing is just too much a fight with gravity (and technology) to produce much pleasure.

Speaking of which. Gravity. Ugh. Yesterday as I was sitting at my desk and doing my work (not being distracted by sparkles), I felt a mechanical vibration run up my leg. I thought that maybe I’d left my cellphone in my pocket, but then quickly surmised that it was a vibration coming from my robotic knee, which was a warning that I had 15 minutes until the battery would run out of juice. I had an inkling that something was awry with my knee a few days ago, and suspected that it wasn’t charging well when I plugged it in at night. But…I didn’t suppose that I was running quite so low. So I rushed home to see if I could fix the problem. And on the way to get upstairs to the charger my juice ran out completely, my knee buckled under me, and I fell to the floor. There’s nothing like a fall to humble me, to make me remember just how fragile every step is for me. Luckily, I was just a bit bruised from the fall and not hurt too much. After fiddling with a few things on my leg I think I’ve got the knee working well enough to make it until I can see my prosthetist.

Some days it seems such a hassle to have a knee that fails so easily, that needs such constant repair, and that I can never fully trust to hold my weight. Every awkward step belies my dependence on a functional microprocessor and on expensive components that are not flaw-free. When I see ballet dancers like in the video below I wish (sometimes, desperately) that I could move with their ease.

But…though I don’t move like they do, I think I’m a dancer anyways–someone who lives in her body, who knows the pleasure of being flexible and strong, who can pick herself up off the floor after she falls, and who believes in persistent practice. Perhaps that’s the real lesson learned from Miss Larkin all those years ago.

Danse(s) from Sosh on Vimeo.

(hat tip to Allison for the video link–and for bringing back such tender memories)

enough of the zombie already…

There’s this fetish out there where some people are turned on sexually by amputees.  It’s called apotemnophilia.  Some of the folks who have this condition desire amputees sexually and some want to be amputees themselves.  To be honest, I don’t understand either proclivity.  However, I will say that over the years I’ve met some perfectly nice folks with these leanings and found them to be harmless–even if they are unusually curious about my body.

But occasionally I come across some not-so-perfectly-nice things in connection with this condition.  It tends to happen often on flickr, when someone asks to be my ‘contact.’  When someone sends such a request, I typically click through to their profile or their photos to see if I know this person or to find what we might have in common (because, I do love photography and flickr is one of my favorite social media spaces).  Oh, but today, as has happened more than a few times before, I didn’t see any lovely landscapes or kitties.  Instead, when I clicked through to the profile I landed on a site with terrifically graphic and disturbing images of women’s disembodied limbs [scrub, scrub, scrubbing my eyeballs now].  What I saw…I can’t understand or be tolerant of–it’s simply sick.  And it’s one of the main reasons that I don’t watch slasher horror movies or attend zombie walks.  My life has enough of the zombie already.

Posting this with a picture of a pretty kitten–a small attempt to overwrite the ugliness dancing around in my brain right now.

if this is you…

This morning when you went to the prosthetist’s office you were feeling a bit fussy and discouraged. Because for the past six months things just haven’t been right. Either your leg has been too long, or too short, or the knee hasn’t been taking a charge or the socket has been leaving pressure sores. And you feel like every little adjustment just spawns more problems ‘to be taken care of.’  And you are oh-so tired of walking with a “loaner knee” while yours is in the shop.  Ugh.

If this is you, then you unloaded it all when you got to the prosthetist’s.  Venting your various frustrations and concerns about possible changes.  And then you surrendered your leg to be worked on again, to get the loaner knee out & the pylon changed out for a shorter one.  You also suggested some alignment changes–to point your toe out and to bring down the heel a bit.

And then, as you were putting the leg back on, your prosthetist mentioned that your ankle rotator was back.  You’d forgotten that it was even missing.  But when you put your leg back on and stepped down on it, you remembered.  That little bit of give in the ankle feeling so natural and smooth.  And then you walked back and forth and back and forth in the office, to see what felt right and what didn’t.  And then you realized that sometimes when something is missing (a little twist in the ankle, perhaps), you don’t even realize that it’s gone, but you know that something just doesn’t feel right.  And when it’s back, you can’t imagine how you lived for weeks without it.

Fortunately, I’m nearly all put back together now.  Just one more change in store next week and then (fingers crossed), I’ll be back to my normal bionic self again…

short shameful confession #14

Back when I was in high school and had limited mobility due to having recently lost my leg (to cancer), my boyfriends often carried me wherever we were going. It got me there faster than if I were to ambulate myself, and also fed my uber-romantic teen desires to be swept off of my feet by a beau (I will confess that such moments fueled many a Twilight-like fantasy).

But now it’s been years–if not decades–since I’ve gotten a ‘lift’ from anyone (the one exception might be that time a few months ago that a wave was pulling me away from my canoe and a teammate picked me up and carried me to safer waters). I’m rather proud of my ability to get places on my own two feet, so I tend to look back on my years of being ‘carried’ by men as a bit shameful now…

However, a few days ago I got a piggyback ride up the stairs to the second story of my house…and I enjoyed it far more than I imagined that I would. What a sweet feeling it was to trust myself to someone else’s strength for a few moments…

Previous short shameful confessions

sea-legs

reflection
I went to the beach last week to chase the setting sun, but I was wearing my bionic leg so I couldn’t even dip in a toe to the water (for fear of shorting out my circuitry).  Such an ache I felt to leave leg and clothes in a heap on the beach and just swim…

The Mary Oliver poem below, especially the first stanza, reminds me of the day a few years ago when I received the pathology pictures from the hospital where I had my cancer treatments–including the images of my amputated limb.  It was tougher than I thought it would be to look at those images, and afterwards I went for a long swim.  As I let the water support me I ‘felt’ my leg there with me, for the first time in a long while.  It was a powerful moment to reconnect with something that I’d lost and mourned for so many years, my body truly re-membering itself as I moved through the water…

And this poem also reminds me of how I struggle against gravity, where every step can be a huge effort…and how I long for the ocean–knowing that at sea is where I feel more free and comfortable (and alive) than I ever do on land.

The Sea
by Mary Oliver

Stroke by
stroke my
body remembers that life and cries for
the lost parts of itself–

fins, gills
opening like flowers into
the flesh–my legs
want to lock and become
one muscle, I swear I know
just what the blue-gray scales
shingling
the rest of me would
feel like!
paradise! Sprawled
in that motherlap,
in that dreamhouse
of salt and exercise,
what a spillage
of nostalgia pleads
from the very bones! how
they long to give up the long trek
inland, the brittle
beauty of understanding,
and dive,
and simply
become again a flaming body
of blind feeling
sleeking along
in the luminous roughage of the sea’s body,
vanished
like victory inside that
insucking genesis, that
roaring flamboyance, that
perfect
beginning and
conclusion of our own.

re-boot

IMG_1800
Last night I noticed that my leg didn’t seem to be charging correctly–the microprocessor in my bionic knee needs to ‘charge’ every 30 hours or so, or it runs out of juice.  The charging cable that I use for the knee has some simple LEDs that indicate whether it’s charging and how much juice is left in the battery.  And last night one of those lights (the one that indicates whether it’s charging) didn’t seem to be working.  But it was late, so I plugged it in and figured that the light was broken and all was ok.

But of course it wasn’t.  When I donned my leg this morning I realized the battery was completely dead.  Ugh.

I have a second charger cord, but it was already packed in one of the moving boxes, and I wasn’t sure which one.  And, it seemed as though the problem might not be the charger but the leg itself.  I started panicking a bit, thinking that I’d gotten some sand in the computery-parts when I went to the beach a few days ago.  And I was already imagining that this uber-busy week was going to get a lot more crazy if I had to get a ‘loaner’ knee and send mine back to the plant for servicing.

But…after about 20 minutes I found the other charger and the microprocessor seems to be taking a charge just fine now (fingers crossed).

Sometimes I resent my reliance on technology–I don’t want to be so physically dependent on cords and batteries and computers.  But I also fought for years to acquire this technology for myself, knowing that this type of knee would give me the mobility that I craved.  Recently I read a Journal entry that I wrote just after I got my first bionic knee.  I was traveling in Paris for the first time and found that navigating the uneven cobblestones was a breeze with the new knee, and I knew that if I had analog parts that I would have probably fallen repeatedly because of the uneven pavement.  I felt so fortunate to have access to the technology that gave me mobility under those circumstances.  And I still do, even if it means that my Monday needs a bit of a ‘re-boot.’

she’s got legs…

A few months ago I was reconsidering my legs.  For a few years I’d gone ‘robotic’–letting my prosthetic leg show rather than wearing a cosmetic covering over it to make it have the same contours as an organic leg.  It was an empowering experience, but also hard sometimes.   I don’t mind being stared at–I’m used to it now, after having had that happen for nearly 30 years.  I don’t mind discussing my disability–I’m used to that, too.  But I do mind when that tends to eclipse everything else that is important and interesting about me.  So I started feeling like it was time for a change (that, and I started wearing knee-high boots, which looked REALLY WEIRD with one skinny leg and one normal-sized one).

As a temporary measure, I put some old cosmesis on my leg to see how it felt and looked.  I showed my kids and their jaws sort of dropped.  They were so used to a Mom with asymmetry–they didn’t seem to like it much.  I mentioned it to some friends, who were supportive, but not really opinionated one way or another about which looked better.  And after a few weeks of using that old cosmesis (which wasn’t actually fitted to this prosthetic leg so it didn’t look quite right around the ankle or knee), I submitted the insurance paperwork to get some nice cosmesis made for this leg.  And, months later, it was approved and I got my new skin about a week ago.

At this point, I’m still not sure which look I prefer.  I see positives and negatives to both.  But I like that I now feel comfortable wearing my leg either way–I experience no shame in showing my robotic innards, and I also enjoy ‘passing’ as a biped and having my tights and boots and slacks hang symmetrically on my lower body.  Perhaps what’s most important is knowing that either works fine for me, and I can change my mind about my ‘look’ at any time without feeling the need to justify or explain it to anyone.

(Pic to the left is me last Halloween with stripey tights and a tutu.  Pic to the right is me today at work (with my skirt hiked up a bit to show the vintage-lace edge of the slip that I’m wearing underneath my sundress)