Botox ... Boom!

Every three months for the past year, I have received Botox injections – not for wrinkles – but as a treatment to relax my spastic muscles. I receive about 11 injections per session including my shoulder, bicep, forearm, calf, and the arch of my foot.

The treatment takes about 90 minutes starting with careful preparation of the poisonous and expensive substance. Botox is produced from the same bacteria that causes botulism poisoning. It's also a powerful neurotoxin (inhibits neuron communication across synapses). Essentially it blocks messages from brain to muscle, paralyzing the muscle to allow temporary relaxation.

My physical medicine doctor, "Dr. M," sticks electrodes to my skin around the targeted muscle. These sensors feed back to a computer that provides an audio representation of the erroneous signals being sent by the damaged area of my brain. Dr. M. inserts a needle into the belly of the muscle then wiggles it around until he finds the spot of highest interference – represented by a loud crackling static. Then he injects the Botox.

Yes, it hurts. My mom sat with me through one of my sessions and was distressed by my stifled cries. But about a week later the treated muscles relax enough to allow me to exercise and build the opposing weak muscles. In this way, Botox doesn't offer just temporary relief. It provides a respite during which my other treatments, such as exercise and electrical stimulation, can do their jobs more effectively to bring about long-term recovery.

When in Rome

Physical therapists in rehab made predictions I would be "walking" within six months. I took that to mean "normally." But at 21 months I still limp and tire easily. I've started walking regularly around the block to improve my form and stamina. This half-mile took 38 minutes my first attempt and I had to lie down for 40 afterward.

My husband and I share a passion for world travel. More than any other recovery goal, I want to walk with my husband when we're on our adventures. Together we have trailed rhinos through the African bush and explored the ruins of Cambodia's Angkor Wat. We have braved the crowded streets of Old Delhi during Ramadan and hefted packs along muddy trails in a Peruvian rain forest.

I try not to think about whether I'll be able to carry weight over rough terrain again. My husband says my condition won't stop us from doing what we want. "We may have to do it differently than before," he says. "We may have to hire Sherpas."

I'm trying to focus on a more achievable goal. I remember a glorious day we had wandering Rome, encountering ruins so common they weren't even marked on the map. We probably walked 10 miles that day. I'd like to be able to walk like that again – with my eyes taking in the world around me rather than focusing on my feet. Three miles … just three miles like that.

I've cut my time around the block to 26 minutes and I don't have to lie down afterward. Both my pace and rate of improvement are agonizingly slow. But Rome wasn't built in a day … probably not even in 21 months.

The Laws of Contraction

A daddy-longlegs died in my kitchen last night. This morning it was belly up on the counter, its lithe legs curled inward.

My own limbs have curled inward since the stroke. I've often pondered this reaction of my body. Why, when my brain became damaged, did my muscles contract? I think about the fetal position – how it's common to assume this position when under attack. Perhaps contraction is nature's response to threat or injury.

I roll this hypothesis around in my mind. What about emotional hurts? Quite often my response to emotional injury has been to withdraw – to pull away from people. Contraction.

My stroke threatened to contract me emotionally as well as physically. I felt ashamed of whatever weakness caused me to have a stroke so young. I sometimes resisted letting people who knew me before see me after. I feared their judgment and pity. I sometimes avoided get-togethers and said "no" to new experiences that might have made me uncomfortable.

I have to fight these feelings and act against them as diligently as I exercise to rehabilitate my limbs. Facing each new person, each new experience, requires a summoning of courage. But I believe this stretching … of muscles, of boundaries, of limitations … helps me recover.

If contraction is part of death then perhaps expansion is necessary for healing.

My Peeps

About 20-30 percent of the 795,000 Americans who have strokes annually live with a long-term disability. Yet, outside medical facilities, I have encountered only two of them. Shortly after my release from rehab, I was in the passenger seat of my Dad's car waiting at a red light and watching a pedestrian limp-skipping across the street to catch a bus. His curled arm was on the same side as his lame foot.

"Look! He had a stroke!" I was fascinated as I watched the man pinch change from a coin purse with his bird-claw fingers. The sighting gave me heart. Here was someone like me getting on in the world.

Since then every time I see someone with a limp, my eyes dart to their same-side arm. No, not a stroke.

Then just before Christmas in the Home Depot parking lot, I spotted a woman coming toward me. Limp. Curled arm. Stroke. I tried to catch her eye to give her a smile, but she looked right past me. I was disappointed. I yearned to connect with her … to see the recognition in her eyes of our common burden as if that, somehow, would lighten our loads.

We survivors need some sort of handshake – like a fist bump or a high five – a way of acknowledging the deep understanding that comes from our shared experience. But with bum hands on random sides, a handshake could prove difficult.

Maybe we could salute with our good hand … being careful not to whack anyone if we're carrying a cane.

Maybe we should just stick with eye contact and a smile.

Or I could say: "Here's to you, fellow survivors. Thanks for lightening my load."