Good morning!

tenor

I’m sitting at a coffee shop with two friends, recounting a rushed morning earlier this week when I needed to get ready and out the door unexpectedly and in a big hurry.

“I didn’t have time to take my leg off after working out,” I say. “So I did a quick sponge bath in the sink. It was a mess!” I shake my head, laughing.

My friends laugh, too, knowing that I am referring to my prosthetic leg, and then one says, “That’s not something you usually hear—that you didn’t have time to take your leg off, you know.”

I laughed and agreed that it certainly was not typical. Since then I have had the realities of my morning routine on my mind. Many people with disabilities and chronic illnesses have far more difficult or time-consuming morning routines than I do, that’s for sure. And I don’t want people to feel sorry for me. Yet I do think that most people have no idea what it takes for me, or any other above-knee amputee, to get ready for the day.

Wake up, grab my crutches, proceed carefully to the bathroom to use the toilet, and then back to the far corner of the bedroom. Sit in a chair, unplug both the computerized knee and the air pump on my prosthesis. Pull the blue silicon liner most of the way onto my leglet, smear Vaseline across my skin where I will sweat and the edge of the prosthetic socket will rub, pull the liner up the rest of the way. Add the wick, which is a slick cap for the liner, then slide on the thin sleeve of ridged silicon, lining it up so that the edge covers the wick and makes contact with the liner all the way around, while leaving sufficient loose material at the top to form a seal with the stiff, molded-plastic crown that I slide on next.

Holding all of this contraption together with one hand, stand up on tip toe and endeavor to line up the little knobs on the front and back of the crown with the corresponding holes on my prosthetic socket before pushing my leglet in until the knobs snap into the holes.

Assuming all that works out—it often takes a couple of tries—press the button on the pump embedded in my socket and wait while it sucks out air to create a consistent pressure to hold my socket in place. This usually takes at least two attempts before it reaches optimal pressure, which the pump communicates to me with varying series of beeps.

Next I pull on some workout gear, swallow a handful of pills, and make tea. Most mornings I ride a specially arranged exercise bike for about 45 minutes.

Then I go back to my bedroom, release the air pressure in my socket, remove my prosthesis and all four of the things I wear under it, and crutch carefully to the bathroom again. I maneuver into the shower and onto my shower chair, shower, dry off carefully because dripping water on the floor can make my crutches slide out from under me, and slowly make my way to the chair to repeat the donning of my prosthesis and its accessories.

Of course, that assumes that I don’t need to change my shoes, because that involves changing the shoe on my prosthetic foot before I put the prosthetic leg on. And if I am wearing narrow legged pants or leggings, I need to put those on the prosthesis after I remove the old shoe but before I wrestle the new shoe onto my stiff prosthetic foot. If I forget, I have to take the new shoe back off the prosthetic foot, which involves tugging and pushing with a shoe horn, before pulling on the pants and then attaching the shoe all over again, using a shoe horn and an amount of force worthy of Thor.

The remainder of my morning routine probably looks more or less like other privileged women’s, although I can’t be bothered with make-up.

I am not ashamed of these intimate processes, any more than I am ashamed of other normal bodily maintenance, like using the toilet, washing myself in the shower, or getting dressed. But they are private, and hence not generally something I talk about to others.

Describing the process of donning my equipment and becoming a cyborg again every morning feels strange but also really good. Being honest feels energizing. And like everyone else, I can use all the energy I can get in the morning.

Reflecting on Birth Control in the Happiest Place on Earth

Waiting for a bus to take us from our resort to the Magic Kingdom, I watched incredulously as a 4- or 5-year-old boy ran in circles, squealing and vibrating with excitement. The kid simply could not contain his joy at being in Disney World and beamed a smile while running around and around his own personal orbit until the bus arrived.

In contrast, I sat grumbling about the various aches and pains in my 49-year-old body and the cold temperature. And then I thought: I am so glad it is not my job to keep up with this kid.

As I mentioned last week, Glenn and I celebrated our 25th wedding anniversary at Disney World, the site of our honeymoon. In addition to being very cold, it was also quite crowded because we were there during the lead up to the Disney half-marathon, and the place was swarming with runners and their companions.

IMG_1072

Many of the companions were small children. In addition to the cute and joyful kids, Glenn and I exchanged many a fist bump, congratulating ourselves on our choice not to have children as young ones melted down and threw impressive temper tantrums around us.

Eating a mediocre, Mexican-ish meal in a café packed with kids, I reflected on the deep and abiding gratitude I feel for effective birth control. Birth control pills, IUDs, implants, vaginal rings, and other methods are all imperfect and have disadvantages, but they also have very high rates of success at preventing unwanted pregnancies.

Previous generations did not have the privilege of avoiding pregnancy; most heterosexual couples had sex, and hence eventually bore the natural consequence, i.e. babies. The freedom to choose not to have kids should be protected through improved access to affordable birth control for everyone.

Please note that I am not against other people being parents. If you are willing and able to be a loving and engaged parent, then I wish you all the happiness in the world. I also hold fast to the belief that non parents are not entitled to complain about misbehaving or crying children when they go to fast food restaurants, theme parks, tech museums, or any other place specifically designed for kids.

Like most people, I grew up assuming that I would have children someday. However, during cancer treatment, I experienced the tremendous physical and emotional vulnerability of repeated, painful, and exhausting invasions of my body by chemo, surgery, needles, and all sorts of unpleasant procedures, and I became significantly less excited about having a baby. Then I developed late effects, and the well-meaning but painful violations of my body continued, making childbearing feel less and less attractive.

Treatment renders some cancer survivors infertile, and this is a tremendous loss to them. I have compassion for their loss, even as my response evolved into a firm conviction that keeping my own body functioning is all I can manage, and hosting a fetus is simply not an option. Nor does chasing a toddler appeal to me.

My spouse is what researchers call an “early articulator,” meaning that he announced in the first month of our relationship, at age twenty, that he didn’t want kids, would never want kids, and wasn’t going to change his mind. Later when we decided to get married, he agreed that if I changed my mind when I got older and really needed to be a mother, I could have one child. While he promised to love our child, he also was decidedly unenthusiastic about parenting and wanted me to know that upfront. Fair enough. (By the way, he never did change his mind.)

Would I have wanted kids if I never had cancer? Or if the cancer treatment had restored me more or less to my previous body instead of dragging on into a cascading series of late effects, would I have wanted to experience motherhood? There is no way to know.

What I do know is that today I find my happiness, productivity, and purpose in ways other than parenting. And knowing that, I smile kindly at the watchful parents of the joyful little runner, assuring them that there is plenty of room for all of us in the Happiest Place on Earth, and everywhere else, too.

Romance Rethought

I write this in a cramped airplane seat, smooshed between an amicable teenage stranger and Glenn, the love of my life. We are on a return trip to our honeymoon destination to celebrate a milestone, our 25th wedding anniversary. I’m feeling thoughtful.

IMG_9568

Glenn and Laura at the San Jose Women’s March last year

My inner feminist contemplates the heterosexual privilege that enabled us to marry so many years ago when others were forbidden by law to marry their sweethearts. Love is love! At the same time, my mushy heart reflects on what has enabled us to sustain our relationship for so long, with the good times far outweighing the bad.

For me, romance is what keeps love alive, but not the Hallmark variety. Instead, I understand romance in a way that I think will resonate with long-term cancer survivors and people who live with other chronic illnesses (and presumably some non-sick people as well).

Here’s how I explain romance to my undergraduate students. I teach a course called “Gender, Health, and Sexuality,” a more grown-up version of high school sex ed that features research on interpersonal communication about sex and sexual health. One of the exercises I use to help students think about their (possibly unrealistic) expectations of romantic or sexual relationships is having them write responses to this prompt: “Three things Disney movies never taught me about romance…”

Students’ answers are inevitably wonderful, running the gamut from “condoms are messy” to “how not to get pregnant” to “what to do when the prince cheats on you” and “sometimes two princesses fall in love.” I never horrify students by talking about my own sexual choices, even those made 30 years ago, but I deliberately gross them out with a particular story about romance.

A couple of years after the amputation of my right leg, I woke in the middle of the night, sweat beading along my forehead, nausea roiling in my stomach. I panted, trying to catch my breath as I grew increasingly certain that dinner would not remain in my stomach much longer. I reached for my crutches but fell back onto the bed, dizzy and unable to stand up. “Glenn,” I moaned. “Glenn! I need your help.”

“What? Huh?” asked Glenn, groggily.

“I’m going to throw up and I can’t get up. I can’t get my crutches,” I groaned.

My stomach started to convulse, and I slapped a hand over my mouth. Glenn sprang into action, grabbing the waste basket from his side of the bed and thrusting it in front of my face just as I threw up.

Turns out that above-knee amputees, weak with stomach flu, cannot maneuver our radically off-balance bodies (when we aren’t wearing a prosthesis) to the toilet (and even if we could, we certainly cannot kneel or otherwise get close enough for precision targeting of vomit).

After I lay back weakly, Glenn emptied the plastic basket of its vile contents, then lined it with a fresh trash bag, actions he repeated every few hours throughout the night and following day as I waited miserably for the flu to run its course. “Thank you,” I whimpered again and again.

“Of course, my love,” he answered each time.

“Now THAT is romance,” I declare to my students. “That is a love worth celebrating.” I see a variety of responses among the 20-21 year olds. Some nod, getting it. Others look thoughtful. A few look queasy or bewildered.

I ask them what romance means, scrawling key words of their responses on the board—whirlwind emotions, desire and love (or at least like) converging into passion, being swept off your feet, soul mates, being wooed with sweet words and flowers and special nights out.

“And how do you feel when you know that special person is being really romantic, going all out to let you know how they feel?” I ask.

“You feel special,” says one woman softly.

“You feel like they really get you, like they care about you,” says another.

“Exactly.” I respond.

If all goes well, we will celebrate our anniversary tomorrow night by dressing up and enjoying a romantic dinner in an upscale restaurant. I doubt it can compete with the flu for making me feel loved, but I’m willing to give it a try.