Thursday, November 22, 2012

Making Memories


March 2010: six days before my stroke

It has been a long time since I have grieved over my physical limitations. But this Thanksgiving my brother's family escaped to our shared condo in Mammoth. As I think of them there, I cannot help but remember the time we shared together just days before my stroke.

We had gone to Mammoth to enjoy the snow with my young niece and nephew. We are from Los Angeles so snow is miraculous, magical! I was as excited as the kids. They were finally big enough for inner tubing!

The kids eyed the tubing hill with uncertainty as we buckled their helmets under their chins. We had signed the liability waivers and were persuading my nephew to try it “just once.” We doubled up one kid with an adult and we flew down that mountain!

"Again!" they screamed as soon as we skidded to a stop.

We headed for the towline that hauls riders up the hill. I rode with my niece: me on my back in the tube, her small body warming my belly, our faces turned to the sky and the snow-laden trees. I recall the swish of our tube over snow, intimate whispers between us. What did we talk about on that gentle ride up the mountain?

These are the moments I miss.

More than two years have passed and the children are big enough now to ride their own tubes. I cannot ride at all. I suppose my experience is no different than the parent who loses the child through its growing independence. I just wanted more time.

This Thanksgiving I remind myself to be grateful for the time I had, and the time I still have to make new memories.

Wednesday, November 14, 2012

Location, Location, Location


My affected side has been very stiff and sore lately. My therapists tell me it’s because of the change in the weather. I live in Los Angeles and despite daytime temperatures this fall often registering above 80°F, there is a chill in the air at night.

I think about my stroke friends who live on the East Coast or in Canada and wonder how they contend with the snow and freezing temperatures. It's so much more than the dangers of walking or driving on ice, or the effort required to put on and take off extra layers. It's the way the cold settles into the muscles and makes them less effective and more painful than usual.

It reminds me how lucky I am to be where I am in dealing with life post-stroke. It's not just the weather — it's the depth of medical help available to me that isn't available to others. I know a Canadian survivor whose nearest neurologist is a two-hour drive away. From the rural Midwest, a reader of my blog contacted me with questions about how to help her husband regain functionality in his hand; the only occupational therapist within driving distance had dismissed her husband, saying there was nothing more to do for him.

I am not only geographically closer to my medical team, I have a choice whom to work with: I had the luxury of firing both my first occupational therapist and my first neurologist.

I hope that I’m not making survivors who are not located as beneficially as me feel bad. (If it makes you feel better, I’ve paid for it in traffic jams, air pollution and skin cancer.) I just wanted to point out that location is one more factor that has an impact on our recovery.

Thursday, October 18, 2012

The One-Handed Cook


Part of getting back into life after my stroke was to gradually resume the household duties that had fallen onto my husband and friends during my first months home. One of the scariest tasks for me was getting back into the kitchen. The kitchen is full of sharp and hot things. Packages demand to be opened and resealed. It is a domain of the two-handed.

But I couldn't continue to ask friends and family to drop off home-cooked meals. And after my fifth tray of enchiladas, I googled "one-handed cooking utensils" and hit a jackpot of products for the disabled chef.

I was reluctant to spend money on adaptive devices in the beginning because I was sure my complete recovery was right around the corner. Two-and-a-half years post-stroke and still very limited with my left hand, I recognize that the corner is at the end of an extremely long block.

My other excuse for not wanting adaptive equipment was that forcing myself to use standard tools would be therapeutic. But my first failed attempt to use a regular can opener convinced me that I ought to buy the One-Touch Can Opener. I was very skeptical that it would work as advertised — but the thing is magic!

My second concession was to purchase a Single-Handed Cutting Board. This item is more practical than magic. I've stabbed myself carelessly on the upright nails, and the suction cups that hold it in place are so strong that when you pull up the board after slicing tomatoes, the tomato juice and seeds splash all over the place. But I do not know any other way to slice and spread bread with only one hand. Watch my demo below. Bon Appetit!

video



Sunday, September 9, 2012

Assembly Required


Shortly after I married I found myself standing in my new living room with a hammer in hand about to bellow for my husband to come help me hang a picture. Then I thought: Just because you now have a ring on your finger does not make you incapable of pounding a nail into the wall. So I hung the picture myself.

It's easy to fall into traditional roles and to make a habit of being helpless. As a disabled stroke survivor, I have to remind myself to try  before I call for help; sometimes I surprise myself with what I can do.

Last week I assembled a new nightstand for our guest room. The last two steps were hard. I thought of asking my husband for help, but I wanted to be able to blog that I had done it ALL BY MYSELF.


To attach the wooden knob, I worked with the screwdriver in my good right hand while holding the knob steady in my affected left. I had to take breaks after every few turns of the screw because my left hand would slip and grow tired. But that knob is on tight now; I dare it to come off!

Hammering in the 12 little nails to attach the nightstand’s back required some creativity. I could not hold those tiny nails in my left hand. I tried holding them with my right and hammering with my left, but my left hand had neither the required aim nor power to wield a hammer. Finally I used one of my wax earplugs to hold the nail steady. Once the nail was started, the wax peeled away without a trace, and I pounded those puppies home.

That’s right, people, I  built it!

Wednesday, August 8, 2012

Squeak, Crackle, POP!


In my last couple posts, I've written about post-stroke spasms and spasticity, and about the treatments my A-team and I are using to overcome them. So much of my recovery has been filled with the anxiety of not knowing how much I'll improve, when I'm going to improve, or how I know if I’m improving. I hope this description of my healing sensations gives other survivors assurance or a target to aim for.

I am an ice floe heading into the spring break-up. Muscles frozen for close to two years have started to crack and move. Much like the ice, my thaw starts in each muscle with a subtle squeaking so quiet it's hard to distinguish whether I'm hearing or feeling it. The muscle layers begin to separate; blood works its way into the fissures, bringing warmth and nutrients. Crackling begins as nerves start to fire. Crackling goes on for weeks until finally, the muscle melts enough for the underlying tendon to extend with a pronounced POP!

The sensations start in the big muscles and, for the most part, work their way downward. I experience the squeaking first in my bicep, then in my pecs. Crackling spreads through my forearm, wrist, palm and fingers. Everything loosens. My leg follows a similar pattern, starting in the big muscle of my calf and moving to the many tendons of my foot, ankle and toes.

Most often I experience the squeaking and crackling while lying in bed, and the big POPs while being stretched during therapy sessions. The summer heat is good for muscles and my team is working hard to break my remaining spasms by the end of this August – two years, five months post-stroke.

Monday, July 9, 2012

Fighting Spasticity

In my last post Definitions for Recovery, I talked about breaking spasms and fighting spasticity – the muscle tightness that keeps me from walking and using my hand normally. These are the treatments that have made a significant difference:

Electrical Stimulation: Electrodes placed strategically on my skin emit an "alternating" electrical current mimicking my body's own electrical conductivity and stimulating my weak muscles. This has helped improve my own nerve conduction and muscle responsiveness. 3x/week.

Strength Training: Strength-building exercises are key to fighting both spasms and spasticity. Muscles go into spasm as a protective measure against further injury. For example, the spasm on the inside of my calf and foot defends against my weak ankle rolling out. By building strength in my ankle over time, I can break the spasm cycle. Already, muscle I've built in my upper back has significantly reduced spasms in my chest, improving range of motion in my shoulder. 3x/week.

Pressure Point Massage: Look for a massage therapist like mine who has extensive training in sports injury rehabilitation (mine used to travel with the L.A. Lakers), as well as knowledge of kinesiology and neurology. My masseuse works through all three layers of muscle, sometimes applying pressure so deep, her hands shake. 1x/week.

Botox: (Post 1-26-12)

Baclofen: I take a low daily dose (20 mg) of this muscle relaxant – helpful especially in the beginning when exercise increased the stiffness in my muscles. I hope to soon reduce my dosage and ultimately discontinue it.

Home Program: I continue to be active; to wear my nighttime foot and hand braces; and to stretch and exercise my hand 5-6 times/week.

Next post: how you know you're on the right track – what it feels like when spasms start to break down.

Tuesday, July 3, 2012

Definitions for Recovery

In the hospital I acquired a stroke survivor's vocabulary. My left arm was "flaccid" – hanging loose and limp. Then "tone" set in. Normal muscle tone is a state of balanced tension – not too loose and not too tight. My muscles have too much tone: they are no longer "elastic," they are "spastic": characterized by tightness and lack of coordination.

Many of the medical personnel who have treated me use "spasticity" as a blanket term to describe the muscle tightness commonly felt by stroke survivors. However, the two therapists who work with me most frequently attribute some of my symptoms to "spasm." I am not only spastic, I am “spasmodic.”

What is the difference?

Spastic (spasticity) describes a neurological condition that causes the muscles to over-contract when in use, thus creating a sensation of tightness; spasticity is velocity-induced tightness.

Spasmodic (spasm) refers to a physical condition in which muscles contract because the nerves are irritated. Spasm can be in effect even when the muscles are at rest.

Why is this important?

Spasm can be corrected permanently. By breaking spasm, muscles can achieve a greater range of motion. This, in turn, allows greater options for strengthening the muscle. Muscle weakness is a common factor in both spasm and spasticity. Strengthening muscle counteracts both conditions. 

I’ve been told spasticity will be with me the rest of my life; but I’ve also been told that strengthening muscles and repetitive use to form new neural pathways can reduce its impact to the point where it won’t bother me much of the time. This is what I’m working toward.

Next post: How the A-Team and I are breaking spasms and fighting spasticity.

Tuesday, June 5, 2012

Triumphs


In the last few weeks, coinciding with major improvements in my leg, I have achieved the following:
  1. I have walked everywhere without my cane. That's no brace…no cane. Practically naked!
  2. I walked around my block in 18 minutes (without a cane) – beating my best time by 8 whole minutes!
  3. I attended an all-day seminar – only getting up to walk around at break times like everybody else. I was a bit stiff for a couple days afterward – but I was present and awake the entire time!
  4. I cycled water with my legs in the pool (straddling a noodle) for 45 minutes without my leg going into spasm, though my foot did. Then I climbed out of the pool taking the largest and last step onto the deck with my weak leg! Last year I wasn't strong enough to walk out of the pool – I had to scoot out backward on my bottom.
  5. I did 9/10 of a mile on the Cross Trainer in 20 minutes – almost half of what I used to do before the stroke, but a quarter-mile more than what I have been doing in the past year!
  6. Yesterday for the first time, I was able to pedal the recumbent bike fast enough to turn on the electronic controls and add resistance. I can pedal only at Level 1, and I did lose my footing several times – but that leaves plenty of room for progress!
  7. The progress in my leg has given me new hope for progress in my arm and hand; so I've added the highest resistance spring to my SaeboFlex!
  8. After a couple months of not being inspired to post on my blog, you are reading this!

Sunday, May 13, 2012

April Anniversaries


My two-year stroke anniversary was April 3, 2012. The date loomed large because of two comments I heard in early recovery: A relative in healthcare predicted my rehabilitation would take two years. And my GP told me to ignore people who gave timeframes for recovery, then proceeded to say I could experience improvements for up to two years.

Today I have minimal functionality in my left hand; a slow, uneven gait; central nervous pain and discomfort from spasticity. I'm continuing with rehab and remaining hopeful, while adapting to the idea of lifelong disability.   

My wedding anniversary is also in April. Two years ago on April 9, I moved from the stroke ward to the rehab unit and prevailed upon the nurses to let my husband sleep in the empty bed beside me to celebrate our 16th year of marriage.

My husband remembers this as a hopeful time. Being moved to rehab was "a sign of progress," he says. I remember him visiting me after a full day of work – bringing me freshly-laundered clothes, tucking me in. I imagine him going home afterward to eat a late dinner alone. He lived on Panda Express during that time, gave into a few tears. I have tried to discover the details of this story from his point of view. Because it is as much his story as mine. His life has changed as much as mine.

A therapist from the rehab unit expressed surprise that my husband has stayed with me. "Do you know of spouses who leave?" I asked with equal surprise.

"Yeah," she said. "They can't deal with it."

Thank you, Ian, for vowing to stand by my side and continuing to do so in sickness and in health.

Ian and Marcelle – April 9, 1994

Monday, April 23, 2012

These Little Piggies


This little piggy bends sideways,
this little piggy hides its head.
This little piggy feels swollen,
this little piggy won't tread.
And this little piggy says,
"Why the heck can't you other
little piggies get your act together?!"


Nothing has driven me more crazy post-stroke than the effect of spasticity on my toes. The tightness through the muscles on the bottom of my foot causes the toes to curl under. Engaging the muscles to walk exacerbates the problem – at its worst causing me to walk on my piggies' knuckles. It hurts.

I asked my medical team for help. My ex-physical therapist gave me a blank stare, which made me think I was the only stroke patient who ever had this symptom. My ex-physical medicine doctor referred me to a podiatrist who said she’d cut the tendons under my toes in a few years if they were still troubling me.

I researched online and discovered other stroke survivors have the same problem, but no solution. I purchased every toe gizmo I could get my feet on: toe stretchers, toe protectors, toe spacers and toe cushions. (The linked products were helpful.)

The FDA has not approved Botox for the treatment of lower limb spasticity, but my new physical medicine doctor has been progressive enough to try it in my foot and to trust my perception that it helps.

With time and treatment my muscles continue to relax, allowing my tendons to release with a satisfying "Pop!” I’ve had several popping sensations recently in the arch of my foot. Now my toes want relief. They're greedy that way. Oink.

Friday, March 30, 2012

Negative Space

Graphic design uses a concept called "negative space." It's the empty space around whatever it is you want your audience to look at. Negative space helps define the subject. Properly used it's as important as what is there.

If the subject is "my life," then the stroke helped bring it into focus. What's important? As I regain energy, how do I want to use it?

Two years before the stroke, I left an all-consuming career to pursue a lifelong dream to write. I did write…some…but in the heady rush of freedom, I also let my life become busy with non-writing. I cleaned my house and tended my garden as if Sunset magazine would be doing a photo shoot. I tutored out of a compulsive need to contribute financially. I devoted myself to becoming the Best Auntie in the World.

Since the stroke I don't clean. I don't garden. I don't see my nieces and nephews as often. The stroke created negative space. In the quiet parcels of time between therapy and the few household chores I manage, I find myself drawn to my desk. It's relatively comfortable to sit here gazing at the computer. But there is only so much on-line Scrabble I can play and then I yearn for something more. I start to write.

The stroke is helping me to become "the me" I always wanted to be. As if by design.

Wednesday, March 21, 2012

Mouthing Off

In the beginning I did mouth exercises to counter a drooping smile and slurred speech. Lying in my hospital bed that first week, I practiced my pucker with enthusiastic sucking noises. I filled my cheeks with air and pressed it out in tiny farting bursts. I pursed my lips "Oooohhhh" and stretched my lips "Eeeeeeee." I once practiced this last exercise with such vigor, a nurse checked to see if I was okay.

In rehab my speech therapist fed me crackers to see if I was "pocketing" food between my cheek and gums. I chewed the crackers and opened my mouth for inspection.

"Good," she said holding out another Saltine. "One more time."

"Bwwaack," I said. "Marcelle want a cracker."

I minimized chewing on my left side because my weakened tongue lacked the agility to scoop food out of the corners of my mouth. When chewing I often bit the inside of my lips and cheeks. I haven’t done that in awhile, I think. Then I bite my cheek again.

Swallowing poses hazards. The muscles on the left side of my neck are weak and sometimes food sticks in my throat. I never eat without a glass of water at hand.

Also food doesn't taste as good. For a long time I thought this might be my imagination, but last week the nerves along the left side of my tongue began to reawaken with an electric jolt. Then I realized that half my taste buds have been disconnected from my brain – so no wonder I'm not getting full flavor.

On the upside food doesn't taste as bad either. Guess that's why a few nights ago I was able to eat beets.

Friday, March 9, 2012

Connections

The right hemisphere of the human brain has one set of motor neurons to control all movement on the left side of the body. Because the stroke damaged that section of my brain, I now make bizarre involuntary movements – similar to a dog that shakes its leg during a belly scratch. I rub my left eye … my fingers straighten.

My hope for regaining control depends on forging new neural connections between my healthy brain tissue and nerves. I often feel electrical impulses shooting through areas of my left side. When I feel these twinges, I visualize my neural pathways branching out like a root system.

The stroke has had a similar effect on my relationships. Word of it traveled to my family and friends; it stretched into the past to people I hadn't heard from in years; it branched out to friends of friends and total strangers.

The blog has contributed to this phenomenon, connecting me with survivors across the continent and readers around the world. I used to think people who put their lives on the Internet were odd. Who would want to be so public? Now I can't imagine recovering without it. Suffering in isolation makes the suffering so much greater.

Like my motor neurons, these human connections move me. In the face of mortality, fears and pretenses melt away, making my interactions honest and intense. Even strangers have become more accessible – they initiate conversation, they offer help.

The stroke has shown me that the pathways between us exist. We just have to access them.

Wednesday, February 29, 2012

How Faith Works

My therapist told me of a stroke patient who doesn't believe exercise will help; therefore she doesn't do it; therefore she doesn't get better. Our beliefs shape our reality.

There have been times in recovery where I've been unable to see how I'm going to get from A to B – from not being able to stand on my own to running. From not being able to open my fingers to typing. In times of doubt, faith has been the only tool that keeps me trying.

Faith is tough for an analytical, proof-based person like me. It requires a leap away from logic.

In high school I participated in an assembly featuring a hypnotist. With a dozen kids on stage, I closed my eyes and made a conscious decision to do as the hypnotist asked. I felt in complete control of my mind and choices. He asked me to stand and become stiff as a board. He told me he was laying me on a table and putting a book on my stomach. I felt the table under me, and the slight pressure of a book on my belly.

This picture from the 1981 yearbook shows what the audience saw: My tiny self propped between two chairs – one under my head and one under my feet – and a grown man standing on my unsupported stomach.



If I had opened my eyes, I would have collapsed. I think faith is like that. When I have doubts, I try to close my critical eye and find the willingness simply to follow suggestions.

Thursday, February 23, 2012

The Task at Hand

I've been told that recovering use of the hand after stroke is "tricky." When I question occupational therapists that I like and trust about my prognosis, their faces become shielded and their speech careful. Almost two years into recovery, I appreciate why predictions in a case like mine are unwise. So much depends on my willingness to perform hours and hours of boring, demoralizing exercises.

The 4 1/2-minute film below shows me performing my current hour-long exercise routine. I've edited the long pauses required to unclench my fingers after each effort to use them. The routine is a variation of grasping and releasing POOF balls, which I've done almost every day for the past 20 months. If you find the film tedious, then it's a good representation of what it feels like to rehabilitate my hand. Progress is agonizingly slow.

But I am making progress. I think back to three months post-stroke when, summoning all my concentration, I could just twitch my middle finger. Still I want more.

I've been reluctant to write about rehabilitating my hand. Writing brings clarity and I haven't wanted to look too closely at the hope and dogged determination that keeps me going. I fear not recovering my hand. I fear being foolish for continuing to try past the point of progress. That point hasn't come yet, but as I approach my two-year anniversary, I feel an urgency to push myself to the next level of achievement.

video

Wednesday, February 15, 2012

Breaking Barriers


In "Getting Better vs. Getting It Done," I wrote about the struggle to use my affected hand in performing daily activities. A comment on the post prompted me to ask "Why don't I use my left hand?"
1. I’m afraid of breaking something. With my unreliable grip, I once dropped a glass bottle of sparkling juice. Which leads me to…
2. I don't want to cleanup a mess. I tried holding the cap of the laundry detergent in my left hand while pouring the liquid with my right; the cap tipped, spilling detergent between the washer and dryer. Which leads me to…
3. I’m tired. Using my affected hand requires more concentration. If I'm tired, I'm less likely to push myself. And I'm more likely to be tired if I’ve had incidences like #2.
4. I'm in a hurry. Using my left hand slows me down, especially if it results in incidences like #2, which can follow #1 and are more likely to happen if #3.
5. I don’t want to hurt myself. My finger sensitivity is still minimal, so I don't reach into dishwater to grab a knife, or try to pick up the lid of a pot on the stove. I’ve been doing simple ironing, but I practice first with a cool iron. This only works because I'm not #4. I might have all my Christmas napkins put away by Labor Day.
6. Inability. There are things I can't do yet – like open my fingers when my arm is stretched above my head.
7. Habit. After 23 months, I'm on autopilot with my right hand and assume #6.
Now that I know why I don't use my left hand, I can develop strategies to break these barriers to progress. Awareness of a problem is the first step toward its solution.

Wednesday, February 8, 2012

Like Father, Like Daughter

My father recently survived his third stroke. My siblings and I decided he could no longer live alone amidst the cows and corn of rural Wisconsin. My sister located an assisted living near her home in Houston. My brother flew to Wisconsin in a snowstorm to pack Dad's treasured things. And I joined Dad last week in Houston to help him settle in.

After my stroke Dad stayed with me my first month home from the hospital. He chauffeured me, helped me shop, and bore the emotional upheaval as I started to adapt to this huge change in my life.

I flew to Houston on my own, drove a rental car, stayed in a hotel. I did little exercise. By the end of the week, my left side was in spasm and I could barely walk. After working so hard at recovery, I was disheartened to realize I could lose so much of what I've gained during times of stress and exhaustion. Sitting with Dad in the home's communal dining room, I sometimes felt I fit in better than he among the walkers and wheelchairs.

Dad still has physical abilities; he lost his driver's license and has trouble communicating. I chauffeured him and helped him shop. During our final excursion to Best Buy, I plonked down in the store-provided wheelchair and Dad pushed me around as we sought to locate a corded phone without too many confusing buttons. "People probably think I'm here to help you," Dad said. "But you're really here to help me."

Being able to help made my discomfort bearable. While I wasn't able to carry boxes or assemble furniture, I was well-equipped to share the emotional upheaval as Dad started to adapt to this huge change in his life.

Thursday, January 26, 2012

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.

Tuesday, January 17, 2012

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.

Tuesday, January 10, 2012

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.

Wednesday, January 4, 2012

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."