As I try to find the words to begin this post, an image of points plotted on an inverse correlation graph keep showing up in my mind.

An inverse correlation occurs when the value of one variable decreases as the value of another variable increases. In this imagined mathematical representation of my life, I see one line representing a steady decline of physical strength, beloved independence and any last bit of control. On the the other, a deepening of relationships, exciting professional growth and a confidence in who I am.

It’s a strange phenomenon, my body and my spirit moving in such opposite directions. I still struggle to reconcile the incongruities. I’m a fast mover trapped in a slow motion body. An ambitious traveler held back by physical limitations and an inaccessible world. An obsessive planner and fantasizer of the future paralyzed by the fear of what’s to come.

One of the hardest parts is that at 47 years old, I feel as if I have finally come into my own. I can accept and love myself and feel proud of the life and family I have created, imperfections and all. I worked hard to get here. I am so grateful to be here. I just wish I could be here and only here. I don’t want to always have to be there too. I want to think and feel and move and grow unencumbered by this disease.

I am aware, as always, that in the grand scheme of suffering, it could be so much worse. That it isn’t that bad. That “everyone’s got something.” But the knowing doesn’t make it hurt any less. It could be so much worse and also, it is that bad. With each passing day, this becomes increasingly difficult to deny…

Showering. I can no longer shower standing up. Actually, technically I can, but I need to hold on to something at all times, which means I can’t shampoo or wash my body unless I’m sitting down. And even when I am sitting down, because I can’t lift my arms high enough to reach my head, I have to wash and rinse my hair with my head upside down. (And in case that wasn’t uncomfortable enough, I get water up my nose half the time.)

When I travel, I now have to ask for a plastic shower bench. It’s by far the least sexy amenity I’ve ever requested. But I can handle that. What’s much harder to handle are the feelings of vulnerability and helplessness when promised accommodations aren’t delivered.

Over this past winter break, for the first time, I actually remembered in advance to call the hotel where we were staying and confirm that a bench would be available.  Because we arrived hours before check-in, we went for a swim. It was cold out. As soon as our room was ready, I scooted over, looking forward to a hot shower and making it out on time for our dinner reservation. 

I ended up spending the next hour and 20 minutes sitting on the edge of the hotel bed in a wet bathing suit, alternating calls to the front desk and housekeeping as they searched for a bench for me, while my kids looked on worriedly and my husband wondered if he should just go out and buy me one.

It’s not just the physical discomfort from which I suffer in these moments, it’s the complete loss of dignity. Only when I started crying while recounting the story to the general manager upon check out did I realize just how demoralizing it was.

It’s impossible in these moments to not consider what future showers might look and feel like for me. How I will likely yearn for the days when all I needed was the help of a bench rather than an actual person to shower me.

Driving. I love driving, especially solo. Working from home the last couple of years, I haven’t had as many opportunities to be alone in my car. But every Wednesday morning, I drive over an hour home after dropping off my older son’s carpool and though I love to complain about it, it’s secretly one of the highlights of my week.

I get to be in complete control when I drive. It’s when I feel most connected to my former, fully independent self. I don’t have to ask anyone for anything- not help walking, zipping up my sweatshirt, picking something off the floor, carrying my tea to the table, fastening a necklace, pulling apart a Ziploc bag- I am free. 

Not only does driving allow me to move quickly and indulge my need for speed, it also lets me embody one of my most sacred parts…

For as long as I’ve been driving, I’ve been blasting music, belting out songs, bobbing up and down in my seat and tapping my chest, fingers and feet to the beat accordingly. Music moves me deeply- listening to it has always been a full body experience. That whole “dance like nobody’s watching” quote never really resonated with me.

Never did I imagine that driving would one day become the primary way I’d be able to “dance.” Losing my ability to express myself physically (without having to desperately hold on to others) has been so very hard. And it’s only getting harder. I find myself secretly trying to prepare for what’s coming. 

Sometimes when I’m listening to music alone or at a concert, I practice dancing without moving.

Lately I’ve noticed the slightest, most subtle difficulties with driving- flipping up my turn signal with the fingers on my left hand, lifting both arms up to position my hands on the top of the steering wheel, reaching up to adjust the rearview mirror. I would never jeopardize my safety nor that of others in my car or on the road. For now I’m still fine using the pedals. For now.

The whispers are increasingly more audible. Eventually you’ll need hand controls. Or maybe you’ll just give up driving altogether. You can’t keep fooling yourself, you’re no different from all the other patients ahead of you on the same road.

Swimming. I was never much of a swimmer before my diagnosis. Mostly because I wasn’t very good at it. As someone always wanting to maximize and optimize efficiency, I preferred workouts that packed more of a cardiovascular punch. But as I slowly said good-bye to running, hiking, cycling and kickboxing, I had no choice but to befriend the pool.

Though getting in and out of the pool is a nightmare, once I’m in, I’m almost immediately liberated from the prison that is my body on land. I can stay upright without assistance. I can push off and momentarily feel graceful as I glide through the water. I can hold and lift up my almost 12 year old son. Best of all, I can jump up and down for joy, a physical act my excitable self lost far too soon.

Recently, I’ve been having trouble keeping my fingers together while swimming laps, thereby making it difficult to propel myself forward with each stroke. (I’m aware my next adaptation will likely be to buy some webbed gloves). In addition to my legs kicking more clumsily, I’m also starting to feel some discomfort in my shoulders. This isn’t surprising, as my body regularly relies on the healthier but wrong muscles to compensate for the weaker ones, taking a toll on the overall mechanics.

I am very grateful to have access to a pool and I know I can and will keep adapting ways of being in it, but the pool is not where my heart lies. 

I love swimming in the ocean. I genuinely can’t remember if I’ve always loved it or if I’ve grown to love it because of how it affords me such a sorely missed, direct and intimate connection to nature. After I make the treacherous journey across the sand and swim out past the waves where few others tend to venture, I am greeted by a sense of peace and calm. Bobbing up and down effortlessly, I can look out onto the horizon, up at the broad expanse of the sky, and temporarily forget my reality.

I am slowly losing my ability to feel safe in the ocean, with its unpredictable and unruly tendencies. My grief around this is so paralyzing, I can barely type it out loud. I am desperate to not lose access to the sacred and uniquely soothing perspective that being fully immersed in nature by myself provides. My desperation is in vain. I must always surrender.

Though there has been a lot of loss in this past year, there have also been gains, one of which I am particularly proud. In January of 2022, I was accepted into a year-long intensive psychedelic-assisted psychotherapy training and research program through the California Institute of Integral Studies. 

At the time, I didn’t anticipate what a physically and emotionally grueling endeavor it would be. I spent multiple four day “weekends” in class from 6 AM to 6 PM, studying, learning, role playing and watching footage of patients (specifically veterans with PTSD) undergo medicine sessions. I sacrificed precious time with family and friends. And I invested a lot of effort rescheduling countless patients.

I pushed through all of the above because quite simply, the reemergence of psychedelics in the field of psychiatry is that enormously exciting and invigorating to me.

In order to graduate, I must now write a 10 to 15 page potentially publishable final paper. I am in the early stages of this process. My working title is, “Mushrooms, MDMA, My Disease and Me: How My Progressive Muscle Wasting Disease Acts Like a Psychedelic and Why I Think I Have Found My Calling.”

Psychedelics will transform how we manage mental illness, how we support mental and spiritual health, how we treat ourselves, each other and our planet and ultimately, how we will evolve our human consciousness.

On a professional level, as a psychiatrist who practices psychotherapy, I look forward to offering patients psychedelics- once they become legal- as another tool to facilitate their growth and healing. On a personal level, as someone living in a body whose muscles are slowly dying, I am in the midst of preparing to explore first hand what the medicine may have to offer me.

I need more tools. I am slowly losing access to the reliably reassuring ones in my current toolbox. As I sink deeper into physical disability, whispers of “I’ll never actually get that bad ” or, “At least I can still do…” are fading into a deafening silence.

I’m scared. I’m scared of entering into territory where it’s no longer about adapting new ways of doing as much as it is about adapting to saying goodbye to what I can no longer do.

I’m worried. Despite having spent almost 16 years in therapy taking a flashlight to the darkest corners in the basement of my mind, at times sobbing uncontrollably for entire sessions at what I saw, I’m worried about what I call my “secret denial.” The denial that lives below my conscious radar. The one that allowed me to remodel our bathroom two years ago and put in a beautiful walk-in shower and built-in bench, but not make the ,rest of it, including the sink, vanity, and toilet wheelchair accessible.

I’m questioning. What if I am not the resilient rubber band I thought I was, so capable of being stretched to the point of almost snapping and then bouncing back? What if I’m only so evolved? What if I max out? What if the heaviness of my muscles wasting away sinks me to the bottom? What if my effervescence evaporates? What if my light goes out?

I am wondering. I’m wondering who I am without my physicality. I am wondering what will be left over in the distillation process of myself. I’m wondering how I will maintain my patience in the face of such extreme frustration. How I will express joy and enthusiasm and love and affection and how I will assert autonomy and independence when I can’t clap or dance or hug or hold or carry or pet or escape or shower or drive or dress or eat or sit up in bed by myself…

The first step of any medicine journey is setting intentions. Here are a few of mine…

I am asking for the medicine to help me tap into my inner healing wisdom and show me ways of coping I perhaps haven’t yet seen in my conscious state.

I am asking for the medicine to show me that no matter how unrecognizable my body and its physical limitations will become, I will still be able to see myself in it. I am asking to be reassured that I can keep surrendering and adapting without suffering the defeat of losing myself; to trust that on the inverse graph of my life, my emotional capacity and ability to experience extreme joy will continue to expand as my physical capacity diminishes

I am seeking the medicine’s support in my quest to keep reaching for the only reliably accessible tool that will remain long after all the distractions and defenses dissolve: awareness.

I am looking to the medicine to help affirm what I’ve always believed- that ultimately, love is how we survive. That love is what matters most while we’re here. That love is what increases our capacity to accept suffering. 

That love, above all else, is what will keep my light on.

“We are not physical beings having a spiritual experience; we are spiritual beings having a physical experience.”

~Pierre Teilhard de Chardin