Toward Universal Access: a lasting benefit of virtual work

I have been building my practice as a body and brain teacher for a couple years, with a combination of in-person and remote sessions. Now, due to the COVID-19 pandemic, all of my clients are remote, of necessity. 

I met with one of my long-term clients by video for the first time a couple weeks ago. For the past eighteen months, I’ve been making house calls to work with Nikita. He uses a wheelchair and has mobility limitations due to cerebral palsy. Here’s what he said during our first virtual session, “Now, everyone is living like me. Previously, I was told that many things were impossible. Now, everything is possible.” He is a graduate student. He went on to tell me how elderly faculty are learning how to put their courses online, and everyone is figuring out how to meet remotely via video. Most institutions have shut down physical locations, and are finding ways to keep open virtually.

Nikita has quad cerebral palsy which affects all four limbs, he uses two quad canes to walk short distances within his apartment, otherwise using a wheelchair for longer distances. He had gotten a variety of balls to work with himself and asked for a lesson on how to use them, something he’d already asked for before we were unable to meet in person. He chose a soft but spiky ball as the most helpful to him, and he began by showing me how he squeezed it and passed it from hand to hand.

We worked on coordinating breathing with passing the ball from hand to hand, 3- and 4-part breathing sequences. Then, we rolled the ball along the inside of one forearm, and around one wrist using the other hand, one way then the other way, with one hand then the other. He has more spasticity in his right hand, so we started with the ball in his left hand. It was a private lesson with this ball as a prop. He noticed a softening in his breathing, and the muscle tone in his arms. I shared the audio recording with him so he can use it to practice on his own. I asked him to walk with his canes as he does at the end of most of our lessons and his grip was softer, his ease greater.

This is what I wish for every lesson I offer, whether it is in person or remote, with an individual or a group, I wish for small changes that feel significant to the person experiencing the change. And, in this time of great global uncertainty, I offer this story as I think it represents hope for our future. If we can learn to live together, and work together in ways that lead to truly universal access to services and options that have long been denied to those living with mobility limitations, we will have made the world better. 

At our next session, after reviewing a draft of this blog post, Nikita reminded me that while opening up access is important, having everyone experience temporary physical isolation is perhaps even more significant in its potential for cultivating empathy in the world for the kind of isolation that many disabled people experience not just for weeks or months but for years and decades. I will take up this topic of isolation and its connection to mental health in another post. 

In My Bones

Last weekend, I got to spend time on the floor exploring the relationship between my seventh cervical vertebra and my sacroiliac and hip joints. I was with about forty other practitioners, students, and people curious about their bodies.

We were guided by Olena Nitefor, a skillful and anatomically-oriented teacher of movement through the Feldenkrais Method. She was one of my teachers in the early 2000s when I studied Feldenkrais for 800 hours over a period of 3.5 years to complete my professional training. I remember her anatomical focus from that time. It stood out as not all trainers use the words for the bones in this way.

This time, she brought a disarticulated skeleton, strung on fishing line, and as she verbally directed our sensations through movement directions and then demonstrated movement on a full skeleton, on live people, and on this disarticulated skeleton, I found myself back in relation to bones, mine, and others I’ve seen and touched. I took time to play with those individual bones strung on fishing line, to figure out how the angle of the facet joints between bones shifts as one moves down the spine, how that impacts which kinds of movement are more and less accessible just because of skeletal constraints.

My father was an orthopedic surgeon and a fisherman, so bones and fishing line took me back to my memories of him. I remember being particularly fascinated by models he had of the human hand and foot. In these models, I could remove layers of vessels, muscles, and bone. Whenever I visited his office, I would take these apart and put them together again.

He also brought home big box video machines when he needed to review a new surgical procedure. There, on the kitchen counter, in the years before VCRs were widespread, he would set up this machine to study a surgery. It was gruesome and normal all at the same time to see this surgery playing out on the same counter where he carved our Thanksgiving turkey with surgical precision.

In college, as I began taking geology courses as part of my geology-physics/mathematics concentration (major), I was encouraged to take, “The Fossil Record” as a retiring professor was teaching it for the last time. The day that I arrived in class to find several different fossil skulls lined up for our inspection, my stomach turned. But, it wasn’t because they were skulls. It was because that week, my father had diagnosed his own brain tumor, so touching a skull felt a bit too raw.   

A few weeks after that, I was home for the December break, and my father asked to talk with me. He seemed serious, as if every visit, every conversation might be our last. He had survived brain surgery to remove the tumor, and was determined to get better. But, what he wanted to share with me was about me and my future. He knew that over many dinner conversations throughout my adolescence, I had soaked in his concerns about how medicine was changing becoming more managed, and that I had found another direction for my passion for math and science, newly declaring my intention to study geophysics. He said, “Do what you want to do. But, I want you to know that being a doctor has been deeply meaningful and rewarding, and it’s not my place to convince you not to pursue medicine if you want to do that.” My father died February 9, 1991, just a few months before I graduated from college. 

I stuck with my geophysics plan for a while, through a Ph.D., a postdoc, and a first job, and then shifted to software engineering for most of the past two decades.     

In parallel with that academic and professional path, I’ve been continuing my apprenticeship in understanding how the skeleton works. I discovered the Feldenkrais Method while walking around La Jolla, California, learning my new neighborhood where I had rented a room in a three bedroom house close to the beach and biking distance to graduate school at Scripps Institution of Oceanography. I found a poster announcing a class in Feldenkrais “Awareness Through Movement” at the local recreation center. I decided to try it to heal a shoulder injury that nothing had helped, not the three daily doses of 800 mg of Ibuprofen my father gave me in a giant bottle straight from the drug rep, not the offer of surgery from his thoracic surgeon colleague. And, playing Division I ice hockey through college most definitely made my shoulder worse, especially the dozens of slapshots I hit in practice daily as catharsis while my father was dying.      

By attending that gentle movement class for the six years I lived in La Jolla, lying on a mat on the floor every Thursday at 6 pm, I learned to move my right arm and shoulder and ribs in entirely new ways, learned to be with myself and attend to myself in new ways, ways that have held my fascination for decades, led me to a Feldenkrais professional training, and the best preparation I could have asked for in parenting my two daughters, including my stroke survivor.    

And, in some sense, returning to touch the skeletal bones this past weekend felt like returning home, touching bones as part of my emerging professional identity. I think the seed my dad planted with that important life conversation in the face of his mortality was his gesture to enable me to trust myself to choose my life path. 

Monkey Mia

Originally Posted May 11, 2013

There is a place on the west coast of Australia called Monkey Mia. It’s famous for the dolphins that come ashore. I was there in about 1995 after a research cruise that ended in Perth. But, we never saw any dolphins.

“Monkey Mia” is a good nickname for my Mia now who seems utterly determined to master the monkey bars as soon as she can.

This evening, we went to the park. Zoe is a pro at the monkey bars, so fast that I couldn’t get any pictures of her on them. I was also trying to help spot Mia. Little did I know that Mia had moved on and no longer wanted my help.

Zoe is trying to master her next challenge with climbing trees  with branches that are kind of hard to reach.

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So, here’s Mia in a series of action shots. Her focus and motor planning are palpable. She makes the riskier big reach with lefty as she knows that’s safer for her and then she’s able to reach and extend her fingers to grasp with righty.

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Every occupational therapist who has worked with Mia has focused on helping her extend her right arm, hand, and wrist. This shot below is an incredibly clear view of how well she has to do that to succeed in her goal of mastering the monkey bars.

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And, here’s a video of Mia putting it all together on the monkey bars.

Earlier this week, Mia figured out how to get started on her bike on her own. She’s been riding it well for a few weeks but still needed a tiny push to get going. No longer. It’s almost as if each new motor skill she masters drives her to find the next challenge. In the last picture above, she’s reaching for the fifth bar. There are only two or three after that. And, she wants to go back to the park to practice so she can go all the way across. She did the monkey bars so many times this evening, dropping to the ground each time her arms gave out. She’d get up and say, “I need to try again.” I started to worry that her determination was so intense she might keep trying past the point of fatigue and injure herself. I gave my 5 minute warning and we biked home for bedtime snack.

Update on September 3, 2013

Here’s Mia yesterday at 4 years 2 months old (four months after her early forays shown above) showing me that she has been practicing and can go all the way across the monkey bars. Note how confident and nonchalant she is. She just knows she can do it and she does. You might also notice that she consistently reaches first with her left arm (unaffected) and then with her right arm (affected by stroke). She does this for every one of the seven bars, reaching first with lefty, then with righty. She happens to be wearing the same lucky butterfly shirt she wore in May when I first captured her learning to swing on the monkey bars in the still and video images above.