24 Hours in an Incomplete Quadriplegic Day
Please note that while this “day in the life” chapter accurately portrays a single day, the particular healing elements Molly chooses to weave together on any given day is a constantly evolving tapestry, particularly considering that she is still learning more about some of these methods all the time, and is constantly adjusting her recovery regimen based on everything she learns.
“Are you awake?”
“Not really, you?”
“No, but I gotta pee.”
“Coming back to bed?”
Molly Hale wakes up just like the rest of us – to the sounds of life inside and outside the house beginning to stir. It could be birdsong in the backyard, her husband Jeramy walking up the ramp towards the kitchen, or the cat demanding to be fed.
The rest of her day, from the moment her eyes flutter open, will be dramatically different from the 16 hours most of us spend between waking and sleeping. Molly Hale is an incomplete quadriplegic, and abilities we take for granted—walking and the use of humankind’s wondrous opposable thumb in particular—are not available to her, or at least they are not available to her yet.
Learning to walk takes children about a year. Besides eating and sleeping, acquiring control over their bodies seems their primary task. A healthy child’s developing nervous system is specifically designed to amass, process, and learn to use the information coming in from the world around them. Molly Hale’s nervous system is neither intact nor untrained—and she therefore has more to overcome. Toddlers may be starting from scratch, but at least all systems are operational. Molly broke her neck in a car crash. Toddlers have to figure out what all the mysterious but normal signals coming in from eyes and ears and balance and skin mean, and how to direct hands and feet to move. Molly also seeks to stand, to grasp, to balance, and to walk—but she has to coax coherent movement out of a body beset by a chaotic storm of unregulated stimulation.
Molly’s task, simply put is:
- To convince muscles trained in a lifetime of normal use
- to respond to an entirely new set of stimuli,
- delivered along different nerve pathways, and
- using a badly damaged nervous system.
Just to get out of bed in the morning., Molly Hale has to do all of these things, and do them every day, if she is to remain on the path of recovery she began seven years ago. How she got onto this path will be discussed in the next chapter, but for now our attention is focused upon the extraordinary work required to simply make it through an ordinary day.
Getting dressed is a workout in itself. Getting dressed requires fifteen minutes on a good day when the body is being cooperative. Getting dressed requires hands to hold, legs to bend and then straighten, and spasms to subside on command. While additional layers take additional time, fifteen minutes usually gets underwear, pants, shirt, socks and shoes where they are supposed to be. Trying to hurry doesn’t help, as the hands need attentive guidance to make up for the fact that their grip strength is so limited.
Depending on the particular day’s schedule, getting dressed often waits a few hours, and a long shirt serves as adequate modesty for whomever might drop by in the morning, as it is so much easier to pee.
And pee she does—7 or 8 times a day—each time grateful that the process is once again under her control. Drinking a half-gallon of water a day pretty much guarantees that there will be regular trips to the bathroom. Each of these trips will take 5 minutes if she’s dressed, and three if she’s just wearing a long top. Just getting out of the chair, to illustrate how this can take so long, requires her to
- position the chair adjacent to the toilet,
- lean forward and lock the wheels,
- initiate a conversation with her feet such that one at a time they can slowly step down from the chair rest,
- continue that conversation with her legs such that they will bear weight instead of collapsing,
- use her arms, her legs, and the installed handrails, to hoist herself up from the chair and over the toilet, and then
- get the legs to relax enough to let her sit.
The first bowl of tea in the morning is a deliberate and meditative process. The fact that a pot of boiling water is a single moment’s inattention away from her nearly naked skin requires an unwavering concentration to prevent disaster. What are for conventionally-abled people unconscious rituals—putting the kettle on, dropping a tea bag into a mug, pouring the water, etc.—are rigorously attentive and Zen-like procedures when Molly performs them. Reach to the faucet to fill a pot, hoist its weight onto her lap, turn the chair around, and lift the pot two-handed up onto the stove. Reach the knob and push down while inducing enough turn to engage the auto-light spark and ignite the flame, turn the knob again to become a cheerful tea-warming fire. Maneuver the wheelchair so she can open the cabinet doors, pull out the sliding tray, retrieve a tea bowl, place it next to the stove, pick a teabag, put it in the bowl, and arrange the tag so it hangs over the edge. By this point, the water is boiling, so it is time for Molly to fumble with the knob to turn off the flame, slip into oven mitts, and grasp the kettle with both hands. Constantly aware of the danger, she pours, puts the kettle back on the stove, slips off the mitts, places the tea bowl in her lap, spins the chair around gently, and rolls to the kitchen table.
Molly is fond of local honey, and mixes a healthy spoonful into the swirling tea, then adds milk up to the rim—creating a bowl so full that even with normal handedness, it would be hard to pick up without spilling. The tea bowl rests on the edge of the table, where she can lean forward in her wheelchair and sip the top half-inch or so without actually picking it up.
While she could, laboriously, work her way thru cooking breakfast, her nephew David joined the household after the accident, and serves as both cook and gardener in exchange for rent—a convenient arrangement to be sure—and often will prepare the morning’s meal.
When David isn’t available, Molly may well grab a few strawberries from the fridge, carefully grasp a knife between her palms, cut them up, and slide them into a bowl. The spoon she uses is a regular spoon, wrapped with a brightly colored rubber spiral (like all of the adaptive technologies mentioned, where-to-buy information will be provided, when we have it, on the links page) that serves to make the spoon fat enough for her hands to hold onto.
It is now around 9 o’clock, and the day’s work of recovery begins in earnest. The daily physical regimen includes time spent with gym equipment, time spent in a heated therapeutic pool, and time sitting or lying down while performing a wide variety of stretches and breathing exercises. While there is no rigidly fixed schedule of exercises, a typical day’s workout might run as follows:
- 20 minutes – Aikido wrist stretches – a minute per each of five wrist stretches in Aikido, on each hand.
- 10 minutes – finger stretches – lengthening and loosening each finger for a minute each.
- 10 minutes – finger dexterity and coordination work – touching each finger to thumb and similar exercises.
- 20 minutes – rolling a 1.5” copper sphere between her hands
- creating concavity in her palms
- stimulating the skin and nerves
- retraining the hand to coordinate the small movements that move the ball around.
The copper sphere gets surprisingly warm as the exercises proceed and, as a potent conductor, seems both to help signals move around within the hands and to magnify the energy available to her.
- 1 hour – Yoga stretches – about 5 minutes on each limb pushing it through its range of motion, and about 45 minutes of extension stretches of her legs to lengthen her hamstrings.
- 20 minutes – Gym ball – on her belly to flex her spine, and straddling the ball to stimulate inner thighs and her pelvic floor.
Throughout the workout (and indeed throughout the entire day) Molly does her best to breathe with intention—in one of several patterns that she will rotate over the course of the day. There are only a few patterns she uses in any given day, but has used numerous patterns over the course of her recovery—each with it’s own properties and results.
At 11:20, six days a week, Molly prepares to go swimming. The Santa Clara ParaTransit Outreach vehicle arrives at the prearranged time, and Molly rolls out the patio and down the driveway to meet the van.
The wheelchair lift platform descends, the operator opens the gate, and Molly rolls aboard. Once she transfers to a seat and the wheelchair is strapped in (her lightweight titanium wheelchair is not strong enough to be strapped in with her in it), they’re off to the pool.
The Betty Wright Swim Center, a 92° heated therapeutic pool facility in nearby Palo Alto, CA, has been a critical component of her recovery. The hot water acts as a muscle-relaxant, a spasm-reducer, and a gravity-reduction field—where each of these functions is critical to her particular condition. Molly grew up a competitive swimmer, but she does not go to the therapeutic pool to swim 20 laps of butterfly and 40 freestyle as she might have done 35 years ago. She goes there to experience the kind of movement her body, in that relaxing and buoyant environment, is capable of. Only by regular practice of correct movement in water, she believes, can her body, in the more challenging environment on land, ever hope to slowly regain normal function.
Progress is slow, frustratingly non-linear, but reasonably steady nonetheless. Conventional wisdom within the traditional western medical community at the time of her accident was that traumatic injury patients could recover some functionality over the course of their first six months of rehabilitation, but that no further improvements can be expected. Current thinking is that progress can be expected for as long as two years. Molly is still progressing after seven, so “current thinking,” while better than it was, is still severely limited. And while Molly may be independently minded enough to shrug off conventional wisdom, this “wisdom” guides both federal policy and health insurance support for long-term rehabilitation in the US, which is woefully inadequate.
Her sessions in the pool—almost two hours of water time a day for six days a week—continue to generate real and substantial gains in functionality. A typical routine entails about twenty-five minutes of walking, sometimes with water up to her armpits, sometimes no higher than her hips. Molly follows walking with standing at parallel bars and performing hip rotations up, forward, down, and back. The rise, crest, fall, and retreat movement—which she describes as just “being ocean waves”—triggers familiar responses and movements which she wants to retrain and reinforce. Still at the parallel bars, 15 minutes go to balance and Chi exercises: standing on one foot; extending energy out down into the floor, out through her hands; and stretching hamstrings, with the intent of overcoming the muscle foreshortening that occurred when doctors, early in her recovery and assuming she’d never walk again, instructed her to keep her legs bent all the time so that she’d be easier for staff to move around.
Somersaults and other tumbling exercises in deep water with a snorkel and mask—earn another 15 minutes—as they help her practice whole-body integration, and simply (and playfully) experience the freedom of movement that the warm water makes possible.
Molly’s two hours of water time is an intentional balance between chaotic and ordered movement, between strenuous effort and relaxation, and between outgoing movements starting in her mind and thrust through her body, and receptive movements which start in the water and flow through her body, with her mind letting itself just observe.
Once a week, she works with a former Russian Olympic Coach, named Vladimir, who has made extraordinary progress rehabilitating patients with cerebral palsy, stroke, and neurological damage. Molly works with Vladimir each Wednesday, and the sessions clearly help—since she started working with him in the heated water of the CAR facility pool two years ago, she has regained the ability to stand and bear weight, albeit briefly, on dry land. In water, she can now walk up the ramp in the pool from shoulder-deep water to where the water reaches her mid-calf.
After her sessions at the pool, Molly heads for the showers, usually along with three or four other women who are finishing at the same time. Instead of the frustrating drudgery of each trying to trying to get their suit off, get themselves clean, and get dressed, these women acknowledge, nay embrace, their challenges, and help each other—so the next 45 minutes become a communal shower, sing-a-long, back-washing, getting dressed party.
The Outreach Para-Transit van picks her up at 2:40 and gets her home shortly after 3:00. Her musician-entrepreneur husband Jeramy works out of a home office composing, publishing, and guiding a small web enterprise, Enlightenment.com, through its early growth, and is thus there when she arrives. Suit and towel get hung up to dry, and it is time for a fashionably late lunch. If she’s doing the fixing, this will take 45 minutes to prepare a salad, or half an hour to steam some vegetables. On any given day, David, Jeramy, or her son Sebastian might have lunch ready when she gets home.
If this is a Monday, she looks forward to a 6:00 pm appointment with Alan Dodge, an Aikido friend who has been coming over every week for the last 3 years, as part of his own Jujitsu training in Amma energy-stream massage therapy. Each of Alan’s sessions last an hour, and she emerges smelling pleasantly of the eucalyptus-laced lineament that he uses . Monday evenings they call her “spice girl.”
If this is a Tuesday, her afternoon is spent at the computer or with the day’s paper, keeping in touch with the world, and around 6 o’clock she and Jeramy start getting ready to go to Aikido West to train with their sensei Frank Doran.
Dressed in the traditional gi top, but settling for tights instead of the complex black skirt (known as a hakama) that her black belt status entitles her to, she will train alongside the mat in her wheelchair, or on the mat sitting cross-legged. There will be more about Aikido, and the Aikido West community’s role in her recovery, in subsequent chapters, but for now let us just say that there has never been, within its reverently sanctified walls, a standing ovation to match the one that greeted Molly at the conclusion of her sandan (third degree black belt) test in June 2001. Her current training focus (as of this writing in April of 2002) is the preparation of a brief demonstration she has been asked to put on at a major upcoming Aikido seminar in Las Vegas. The stakes, and expectations, are high—Molly is the only person to have ever taken a sandan exam in a wheelchair, and living up to her reputation is a daunting responsibility.
If this is a Wednesday or a Friday, instead of coming home from the pool, a friend picks her up at the pool and they head off together to an equestrian center where Molly rides a pony, with the friend acting as side-walker. Molly has been riding since she was six, and had her own mare that she rode bareback as a teenager until she went to college. While she had not ridden regularly for years, it turns out that riding is a very powerful therapy. Riding a horse moves and stimulates, in ways human-powered massage therapy simply cannot, the entire pelvic body—loosening her hips and helping establish and strengthen the energetic connections between legs and torso. A horse’s movement is uniquely suited to this task, and Molly was the first person in California to articulate this to the medical and insurance authorities in a way that convinced them to pay for what is known as “hippotherapy.” She started riding at the National Center for Equine Facilitation Therapy (NCEFT) a few years ago, and “graduated” from their program, which focuses more on the needs of developmentally challenged children. Having graduated, she cast about for a way to keep riding.
Molly lives in Menlo Park, California which, presumably looking down its ultra-prosperous suburban nose at the idea, does not allow homeowners to keep horses on their property. This has forced Molly to either find a suitable horse to buy and keep at a professional stable, or find a riding school that can accommodate her special needs. (Though she is still on the lookout for the perfect pony, Molly currently rides once a week at the nearby BOK Ranch).
On Wednesday nights, after riding, there is a seven-years-and-counting dinner and massage-work evening with two friends, Patrick McKenna and Jerry Stolaroff. Patrick—an ox-strong boat builder who stands 6’3” and looks like a modern-day Viking—spends about an hour on Molly’s hands and feet each week. While part of this work is strictly physical (the work of strong hands kneading muscles, tendons, and joints and helping loosen, lengthen, and relax), there is also an energy consciousness at work; Pat is a former Aikido practitioner and also brings a background in mechanical engineering and sailing to his sessions with Molly. The engineering logic helps him work to solve the problems faced by the interrupted nerve messages, to use massage to help stimulation travel along alternative pathways so that Molly’s body can progressively communicate with itself more fully. The sailing background helps him appreciate, and work with, the spasmodic waves of tension that would usually emerge, particularly in the first few years, during deep massage. Jerry Stolaroff, while also a skilled Aikidoist, is primarily there in his capacity as a certified Orthobionomist, practitioner of several massage styles (Traeger, British Sports Massage, Regenesis), and Kirtan, which involves the healing use of sound. A typical session with Jerry will involve some hands-on massage, some intuitive prayer, some gentle orthobionomic manipulations, all accompanied by his rhythmic chanting, and often Jeramy playing piano in the next room.
Every Friday morning, prior to exercises and the daily trip to the pool, another friend has a regular massage appointment. Mike Kupfer, training at Aikido West for a few years prior to Molly’s accident, has come over before work every Friday for the last seven years to work on Molly’s hands and arms. There is no particular school of massage represented, just the willingness of a friend to grab an arm and start rubbing, and Molly’s exceptional ability to make that friend feel welcome, appreciated, and wanting to return, week after week, to participate in her recovery.
Indeed, practically every visitor to the house becomes part of Molly’s recovery—or at least part of the ever-growing legion who have grabbed an arm, a hand, a leg, or her neck (whatever seems to want the attention most) and started rubbing. One of Molly’s greatest gifts is her ability to embrace and receive the good intentions everyone has, to harness that energy, and to put it to work where it will do her the most good. As much as she is using them, none of them feel used, for everyone who works with Molly is bathed in her resounding gratitude, and nourished both by her wisdom and by the knowledge that they have, on that day and with their hands and hearts, made a difference.
There is a massage table in the living room. Whenever Molly is not in her wheelchair, she likes to lie out flat. After dinner, after massage work, and typically during some late-night Star Trek reruns, Molly will be there, covered by a blanket. Most nights she usually nods off there on the massage table, sometime after the Star Trek episode. She’ll wake up about 2:00 am, get back into her wheelchair, and roll off to the bedroom at the other end of the house. Passing the computer, she might stop to check email, depending on the time. Jeramy will have been in bed for a few hours by the time she gets out of the chair, crawls in next to him, and falls asleep; ready for the next day, the next step, in her long recovery.
Keep reading. Next, “Too Optimistic”.