Dis Ease Yoga

Before ALS, I honestly believed that yoga was for my wife, not for a weightlifting, biking, swimming, semi-running 50 something-year-old male who knew he was going to live forever. I thought it was nice for the YMCA to offer yoga, even though I believed their main focus should be on weightlifting and crushing physical fitness. I suspect that many hold the same perceptions, believing as I once did, that yoga was for other people.

It took a diagnosis of ALS and an awakening to the phenomenon of dis ease for me to reconsider.

For many months I have held words and thoughts and symbols and sighs in my heart concerning my practice of yoga. For many, the idea that a person with ALS, unable to control any physical function, totally reliant on the good will and expertise of volunteers and loved ones, would state that he is practicing yoga might spawn incredulity. I might’ve seen it the same way two years ago. But the yoga story that I carry is one that has given me deep gifts, both tangible and intangible. And I want to share some of that gift today, not because I believe you should become a Yogi – a student of yoga yourself – but rather that in this particular experience is the complexity of human dis ease, what it means to have ALS, what it means to excavate your spirit until your ideas of success and failure, growth and regression, awareness and unconsiousness are turned on their ear.

Let me start with the physical act of yoga. I go twice a week, on Monday evenings with either Ev or my kids, and on Friday with good friends – yogis in their own right – who very generously donate their time and physical strength to support my practice. The classes are a part of Mind Body Solutions, a nonprofit founded by my teacher, Matt Sanford. Matt’s story is remarkable, but he tells stories that are even more so. His yoga practice awakened him to realizations that the body and the mind are inextricably linked, that injury and disability are circumstantial and not destiny. He teaches numerous practitioners and other teachers, and there is a remarkable group of instructors associated with MBS that are skilled and loving and every bit the teacher that he is, only in different ways. I cannot pay a higher compliment to the master teacher that Matt is than to hold up the teachers that he has awakened.

The Monday and Friday classes are decidedly different from one another. The class on Monday schools me in understanding the ways my new body works. There is great attention paid to the smallest detail in the spine, the diaphragm, the energy of breath as it flows from grounded space out through the limbs, head and heart. And while it may not look like we are accomplishing the poses, each of us – those with traumatic injury, cerebral palsy, MS, chronic pain and even me with ALS – finds our own way into the knowledge and practice our teachers present. To illustrate, the concentrated focus on spinal energy for a person with ALS, a person that one would assume has lost spinal awareness, reveals vast spaces for spiritual growth in spite of the physical loss. Monday nights challenge me, requiring faith like preparation before the practice.

The class on Friday is different, more about the pose, with the teachers purposefully seeking a meaningful way for our bodies to enter the yogic space. Friday is closer to traditional yoga classes, more about the broader practice than the details; and the benefits for the students, particularly those physically strengthened by the practice, are tangible. The students who so graciously allow me to join them on Friday are remarkable in their physical progress. Some show new capability, and in their joyful growth, I must remember that even though ALS robs me of the ability to gain strength from physical activity, my practice of a yogic routine has enormous emotional, spiritual benefit. And of course, there is definite physical benefit in moving a body confined by paralysis. Each class is different, neither better nor worse but complimentary one to the other.

After each class, I am exhausted yet more aligned in space than before I began, more alive to the spirit in the breath, more engaged with the beauty of human-to-human contact. I mark epiphanies exploding into my awareness or creeping quietly into the edges of consciousness. Each of these classes requires physical engagement, more than was ever required of me when I was able-bodied. The philosophy of MBS is to illuminate human understanding through the more readily discernible physical act while challenging us to find deep meaning in the discovery of this very transient and unique envelope of a body that each of us brings to the practice. And strangely, my soul is engaged. No wonder I am so tired at the end.

During any given class, at any given time, I can expect that the practice will remove my carefully constructed façade, layer by layer, piece by piece, until my dis ease is fully exposed.

The experience is more complex than anything I have ever encountered. On the one hand, it is not uncommon for me to focus on some small physical requirement, one that I could do even one week ago, and recognize that it is now impossible without the aid of another – and I grieve that loss in momentary gulps of realization and sorrow that passes through me like saltwater tears. I cannot help it, marking the losses week to week.  Often, as I observe the diminishing physical space I can meaningfully claim, circling down into my own constricted tangible essence, a thought will arise and I will question the attempt, asking questions of myself like, “Who do you think you are to even attempt such a thing? You have ALS. Why are you wasting these good people’s time?”

Then I remember what I have learned – yoga is not in the physical act. The pose is just an avenue to deeper insight, an expansion of breath against the restriction of some perceived elastic band around my torso, an opening of heart against fear of awareness. Awakening to such psychic, spiritual, emotional, faith-filled space holds at bay the panic hidden in the physical loss. It is as if I am on the circling gyre, simultaneously spiraling up and down in opposite directions – one spiritual, climbing into the rarefied awareness, and one physical, falling into deep velvet loss.

I do not know how long I will be able to continue. I hope until I die. Each week is an intertwining of grief and joy, and that seems to me correct.  ALS requires it, Dis ease insists upon it, so that in reality the practice for me each week two times is balancing tears and laughter, realization and unawareness, the spiral up and the spiral down, each week, two times, preparing to do yoga.

And I doubt if I will ever be svelte enough to dress in that specific yoga way.