Taking Inspiration From FDR

As a political scientist, my father devoted time to studying and writing about Franklin Delano Roosevelt, our 32nd president. He recently suggested that I watch Sunrise at Campobello, the story of Roosevelt contracting polio and becoming a cripple at the age of 39.

Until it happened to me, I didn't recognize the profound effect of becoming disabled in middle-age. Unlike me, FDR never walked again, but after seven years of facing what we go through – the grieving, the depression, the redefinition of self, the hoping, the endless therapy – he decided not to live the quiet, comfortable life of a wealthy invalid but to run for President of the United States. Audacious!

Taking office as the Great Depression peaked, FDR shaped relief programs such as Social Security, which Americans have enjoyed for nearly 80 years. The political battle over these progressive reforms was as difficult then as it is today, and I wonder if the humility and compassion that FDR gained while adjusting to his disability gave him the courage and patience to push this legislation through.

My dad says that without polio, FDR wouldn't have become president because he would have run too early and lost to an entrenched Republican Party, which didn't become vulnerable until the Depression. My dad says that without FDR, Hitler would have won. In Hitler's vision of the world, invalids like FDR were candidates for euthanasia.

What a difference a cripple can make.

Rights of Passage

I just finished listening to an audio book set in 1969. The main character’s brother returns home from Vietnam missing both legs. As he goes store to store in his wheelchair looking for a civilian job, not only will no one hire him – he has to struggle with curbs, stairways and narrow doors.

I used a wheelchair for the first few months after my stroke. On one errand my husband parked our car in a handicapped spot, pushed me along the blue walkway up a ramp in the curb, and through the store’s automated doors. Somewhere along the way he said, "Thank God for the Americans with Disabilities Act."

The ADA passed in 1990 and includes regulations for disabled access to public places, accommodation for the communication-impaired, and anti-discrimination protections for the sick. The ADA has its roots in 1974 civil rights legislation, but the 1980s saw the regulations challenged in both the Supreme Court and Congress. Businesses were balking at the expense of compliance while activists fought back by trying to educate those in power.

The signing of the law by President George H. Bush meant that for the first time in history, businesses had to think about access for people with disabilities. Despite this success, I often wonder as I run my errands: Where are all the people like me? According to the Census Bureau, about one in eight Americans have a "severe disability." But I rarely see anyone more impaired than an elderly person with a cane.

Of course there are other barriers for the disabled to overcome before they venture out in the world – fear and shame among them. But one thing is certain: Without the provisions of the ADA, you would see even fewer of us.

Worldwide disabled statistics
ADA history

Driving Miss Lazy?

After the stroke my neurologist reported me to the DMV, which resulted in a suspension of my driver’s license. I spent eight months completely dependent on family and friends for transportation.

I have lived in Los Angeles all my life and have ridden public transportation only twice: Once on the new metro system simply for the novelty of it; and once as a teen in a story that ends with the punchline, "Say what?! Youz on da’ wrong bus!” Post stroke, no one, least of all me, thought I should take a bus. One of my regular appointments is a cross-town trek. I was using every ounce of energy I had in therapy sessions. How could I cope with long bus rides, transfers, and walks to and from bus stops?

At the gym where I exercise, the cardio equipment looks out a picture window onto a bus stop. I study its patrons while they wait: Hispanics and African-Americans, students and single parents, the elderly and disabled. I watched last week in wonderment as an oversized woman in an oversized wheelchair made a five-point turn on the sidewalk to back herself onto a platform that the conductor had lowered for her.

The many advantages of my life include having my own transportation and, during that relatively short eight months when I didn’t, knowing so many generous people who were willing to take me a distance along my road to recovery.

Now I Lay Me Down To Sleep

When my husband and I were dating, he took me on a hike. After a couple hours of climbing, I needed a nap. I stepped off the dirt trail onto the rocky slope and lay down. I slept for an hour, amusing passing hikers and giving my husband a foretaste of our traveling life together. I have missed great swathes of Africa and Asia curled in the womb of the passenger seat while my husband serves as both driver and navigator.

Like everything else, the stroke has changed my ability to snooze easily. I put on the foot brace, the arm brace, and position the pillows just so – then get an itch under my left shoulder blade. Or I struggle to pull the covers over my icy left side and, in the process, break a sweat that requires everything to be thrown off again.

Thankfully, I am now able to sleep on my sides for brief periods. But this requires rearranging everything, so rolling over is a major commitment. And getting up in the night? To ambulate, the boot has to come off. Sometimes those devious Velcro straps conspire to stick to each other while I'm in the bathroom so that I have to pry them apart one-handed in the dark when I get back.

I spend plenty of time lying awake, my husband snoring happily beside me. My solution: audio books on iPod. Now if only I can figure out how to stop the earphones tangling.

Trickle-Down Recovery

Healing from stroke has a hierarchy. The upper joints recover before the lower joints, and the leg recovers before the arm because it has the benefit of weight-bearing. So far, my recovery has followed this conventional wisdom. Where my experience has not aligned with medical lore has been in the timelines. My expectations and those of my family were that I would recover more quickly.

In the beginning my "failure" to meet recovery "deadlines" worried me. But I have since come to disregard the neurologists quoting statistics on the diagnostic front: Eighty percent of my recovery will occur within the first three months? NONSENSE!

I am continuing to make steady progress in my 16th month. Therapists and survivors with experience say that recovery continues for years. I hold onto these truths, and try to have faith that the comparative riches of movement and feeling in my upper limbs will trickle down to my struggling fingers and toes.

Here are some of my real-life milestones to the best of my recollection:

Leg
Week 3 — bend knee while lying on belly
Month 11 — bend knee with some regularity while walking
Month 15 — walk without brace

Arm
Month 1 — move shoulder joint
Month 4 — straighten elbow with effort
Month 7 — hold full weight in crawl position
Month 10 — hang onto moving bars on cardio machines
Month 13 — open fingers in relaxed position (index/thumb inconsistent)

Oh, What a Feeling!

My loss of sensation was as concerning as my loss of movement. In the hospital, family members would touch my fingers or toes and ask, "Can you feel this?"

"No."

Not only did I lose sensation in my lower limbs, I could not place them in space. With my eyes closed, I could not tell if my arm rested by my side or in your hands. My perimeter had become fuzzy.

As feeling began to return in those early weeks, I qualified it: There was vibration and pressure, but not touch – no sense of skin against skin or the texture of bed sheets.

Temperature returned during a rehab shower – strange signals from my left leg. My right leg felt hot water. So, this is what hot feels like, I told myself. To this day my left side feels heat more keenly than my right. Hot is insistent.

A different sensation emerged one day as my occupational therapist worked with my arm. Her hands were cold. And so this is what cold feels like, I instructed myself. Cold is subtle – it reveals itself from a distance.

Without looking, I still cannot tell if my fingers are open or curled – grasping an object or empty. To test my sense of touch, I ask my husband to brush a cotton swab beneath my fingertips. With eyes closed, I try to tell which finger he's touching. For the first time last week, (15 months post-stroke), I was finally able to identify each finger correctly.

Who knew that having my husband tickle me with a Q-Tip could be so exciting?