It took 4 tries to get my prosthetic leg back on this morning after my workout and shower, my movements growing sharper and more impatient as the minutes ticked by without success.

My leglet swells in hot weather, with exercise, and in the shower, and this morning the perfect storm of all three conditions prevented me from properly donning my socket (the part that holds the prosthetic leg onto what’s left of my leg). I sat with an ice pack under my leglet for 20 minutes, which was about as unpleasant as you’d probably imagine.

As I felt more and more frustrated, I took slow, deliberate breaths and thanked my auntie, who I happened to be talking to on my cell phone at the time, for her wonderfully distracting chatter about her life and questions to me about my recent vacation. Our conversation kept me from completely losing my freakin’ mind.

“You know what would be amazing?” I asked Aunt Joan, who also lives with a disability. “If those of us who are disabled could have one day off from living with it, every once in a while. A day to just not to have to deal with all the crap.”

“That would be awesome!” said Aunt Joan. We agreed that this fantasy should be realizable about once a month before sighing together over its impossibility.

That’s the thing about disability–you don’t get a day off. Ever.

There are good days and bad days and epically horrible days. And there are even mundane days where your attention is absorbed in daily tasks or a looming deadline or your best friend’s crisis, and you don’t really think about being disabled. But there is never a day off from it.

My spouse Glenn works for a regular company, and he gets this thing called PTO, or paid time off (as opposed to being faculty at a university like I am, which involves a different approach to schedules and paid work time). PTO encompasses vacation, personal days, sick days, and any other time he’s not working but is still being paid.

I’d like to propose DTO, or Disabled Time Off. This would involve some kick-ass, Hermione-Granger-level wizardry, but this is my fantasy, and I don’t think we should let little things like physics and biology and capitalism stop us. So here goes.

During DTO there would be:

• no pain, no drug side effects, and no malfunctioning medical equipment.
• no strangers would ask inappropriate or patronizing questions about your body or tell you that “it’s just great that people like you can get out of the house and get around” (yes, a man really did say that to me).
• no customer service employees would address your companion instead of you while waiting on you.
• you would not arrive at a car rental, airline check-in, hotel registration desk, or other facility only to find that the accommodation you requested 6 weeks in advance is unavailable or will involve a lengthy wait in discomfort while someone tries to find what you need.
• you would be able (if desired) to perform all “activities of daily living,” the official list of tasks (such as dressing and grooming yourself, feeding yourself) that determines who “counts” as disabled (used by the government, insurance companies, hospitals, schools, public services).
• you would have sufficient energy to meet your friends and do whatever fun thing you had planned for the day.

Yeah, yeah, I know. Not going to happen.

Still, dreaming up DTO kept me well entertained as I finally got my prosthesis on and hurried to put in my contacts, comb my hair, and brush my teeth.

I don’t mean to suggest that having a disability cannot also be a positive part of my identity, body, and life, because it is. But taking a break is healthy. I love my job, but I benefit from vacation away from it. I love my spouse, but I have friends and interests that involve spending hours, days, and the occasional week or two without him.

I love my disabled body, but I’d still like a day off.

 

 

 

It’s the 10th anniversary of the amputation of my right leg, and I have the Humpty Dumpty nursery rhyme bouncing around in my head. The rhyme concludes with bad news: All the king’s horses and all the king’s men couldn’t put Humpty together again.

We could paraphrase this for me: All the great surgeons and all the strong meds couldn’t put Laura together again.

It’s been 10 years since the combination of past cancer, scar tissue, complications, wear-and-tear, and repeated infections screwed up my right leg so badly that an above-knee amputation was a better deal than trying to rebuild the leg yet again. It feels like it’s been way longer than that, and also like it cannot possibly have been so long ago.

I feel intense gratitude that I am alive and reasonably well. And I also feel as cranky as a toddler who missed her nap as I cope with phantom limb pain, the eccentricities of my prosthetic leg, and the endless mundane details of amputee-hood.

The challenge remains in negotiating a healthy balance between gratitude and crankiness. I’d prefer to be so steeped in love, compassion, and gratitude that I never feel like a kid having a tantrum, but I haven’t figured out how to stay in that perpetual state of peace. No one ever does.

One of the many incredibly practical things my therapist taught me–and probably many, many therapists attempt to teach their own stubborn clients–is that there is no there there. That is, there is no point you can reach in which it is all better, all fixed, all sustainable, all perfect. You can never get there, because there  is a moving target.

I hate this insight and I love it in equal measure. I hate it because the longing to be done with cancer late effects once and for all is so strong that I ache for it, and its continual absence makes me cranky. And yet if there is no there, then it’s not my fault that I haven’t arrived there, which is a huge relief. Also, this means no one else is already there, looking down their nose at me because they made it and I didn’t.

This 10th anniversary marks a decade past the last of my 17 surgeries. I feel like this milestone should be the there  I have been trying to reach.  After all, so much has happened. Ten years is long enough to have reached my 25th wedding anniversary, to have been promoted to full professor at my university, to have moved into what we hope will be our forever home, for my youngest niece and nephew to be tweens and my beloved kitties to become middle-aged.

Ten years of survivorship has taught me so much, including much I would rather have skipped. The milestones and accomplishments of this decade are meaningful to me, even though they can’t always offset the crankiness-inducing realities of late effects.

On a whim, I looked up the traditional 10th wedding anniversary gift and found that it is tin or aluminum. Those metals are durable and flexible, qualities needed in any longterm relationship and a good reminder of what I should strive for myself as a long-term cancer survivor and amputee. Perhaps if Humpty Dumpty had had more of those qualities, the king’s men could have put him together again.