Cave Dwelling and Grieving Your Way to Happiness

I recently received an email from Mail Chimp warning me that my free account would be terminated (along with all prior mailings) if it remained inactive. Turns out I haven’t posted in over three years. Wild. 

I’ve spent the last few years traveling; to some far away places and deep within. A lot has changed. My disease has progressed farther than it was ever supposed to. I’ve retired my sporty little tricycle-like electric scooter and now rely on a power wheelchair outside of the home, save for very short distances and only when linked to someone’s arm. I use an adjustable bed to help me sit up. I have a “lift chair” in the living room because I could no longer get off the sofa by myself. And though I can mostly still dress and feed myself, I need adaptive tools for zippers and buttons, help putting on socks and shoes, and sometimes, someone to cut my food.

This March marked the 20 year anniversary of my GNE Myopathy (formerly HIBM) diagnosis. That’s a long time. Forty percent of my life. And March marked only the first 20 years. In fact, likely the best 20 years of my body with this disease. The loss is ongoing. And exponential. 

Sometimes, when I stare directly at myself and then ahead at the next 20 years, I get pulled into the cave, or what I used to call, “the vortex.” Earlier this year, I was stuck in a very dark corner of it. I’d never been in that deep and wasn’t sure I’d find my way out. 

Eventually, l felt my way out.  The way I always do- I cried by myself, with my husband, to my sister, with my close friends. None of them ever afraid to be in it with me.

And now, there’s something very peculiar happening. Or maybe not at all. I have not just emerged, but I’ve entered into a light shining so brightly that I am not even sure I recognize it. It feels paradoxical. Almost a betrayal to my grief. It shouldn’t make sense. I keep losing- my physical strength, control, independence. And yet.

The uninvited wisdom I’ve acquired along the way- the truths I’ve resisted surrendering to- I am befriending them now.  I am increasingly attuned to what matters. More consciously aware than ever that yes, I wish I had my strong, playful, non-deformed body back and also, I have all that really matters in life.

I find myself wanting to share how I arrived here with anyone who will listen. Not from an intellectual or theoretical angle, but through my lived experience. If I can do it, you can too. 

I joke that I’m too lazabled to ever actually write a book, but if I did, the title would be, “How to Grieve Your Way to Happiness.” Something of a self- help memoir.

Here’s some of what I’d want to cover:

1. Don’t be afraid of the dark. It’s uncomfortable, it’s not unsafe. Our survival used to depend on staying away from it, now it depends on moving through it.

2. Don’t try to find your way out. Feel your way out. You can only get so far in your head. Eventually, you must put aside the thinking brain, the great intellectual defensive protector, and drop into your body and heart. Not everyone has the luxury of feeling safe  there. Do the work to get there. It’s worth it.

3. You don’t have to know how, you just have to trust that you will. Our psyches are wired for healing. We have been grieving since the beginning of time. The feelings themselves aren’t the problem, interfering with them is. Trust that your psyche knows what to do. Even if you’re scared.

4. The darker you go, the brighter you emerge.  Nothing is more liberating or empowering than going to the brink of emotional survival, and then surviving. True catharsis. “The purification and purgation of thoughts and emotions by way of expressing them, resulting in an emotional state of a renewal and restoration.”  Once you’ve lived through it, you don’t have to live in fear of it. It is the ultimate natural high.

5. Stop trying to control. Start learning to adapt. You can expend all your emotional energy trying to manage, control and prevent bad outcomes, desperately seeking reassurance that if you do, it will all be okay. Or, you can invest in coping strategies for when it’s not okay. Stop trying to make unknowns known. Know that you can and will adapt. Adaptation is how we’ve survived.

6. See yourself and let yourself be seen.  Look at yourself honestly and with compassion. Vulnerability is scary. But ultimately, it’s what will keep you safe. Community is how we survive. It won’t change your reality, but letting others hold it with you will lighten the load and prevent you from getting crushed.

7. You can simultaneously trust that life is unfolding as it’s meant to and still rage against it. Both truths can coexist. When I was younger, I tried to adopt the “everything happens for a reason” or “it wasn’t meant to be” approach. It was presented as a healthy way of coping, a way to stay positive. In actuality, it was a spiritual bypass designed to avoid natural feelings of upset and disappointment.       

Then, when I was diagnosed, I rejected anything resembling predetermination. It wasn’t “meant to be” or “a gift” or because “God thinks I’m a bad ass.” It was because of science and genetics and bad luck. Why me? Why not me. There was no meaning to be made. 

Twenty years in, I have chosen to believe that there is meaning in how my life is unfolding. I don’t have to like it, I may never fully understand it, but I can try to trust in it. Not in service of avoidance, but of allowance and acceptance. Not to justify passivity or complacency, but to actively work to find the teachings and growth opportunities within it. Finding meaning in my suffering allows me to suffer less. 

8. Music. 

9. Nature. 

10. LOVE.                          

I will have to dedicate a separate post to these final three. They are my most favorite, reliably effective coping tools. (They also happen to be very accessible, even if not in the ways I wish they were.) They are also what make numbers 1-7 above doable. 

Especially love. 

Love gives life meaning. 

Love is what makes the cave survivable.

…

I usually write from inside the cave. It’s fun for a change to write from the outside. I enjoy being here.  I don’t know for how long I will stay, but I do know that no matter how far I travel, the cave is always in my visual field. And that’s okay. That’s my reality. I am aware of what still lurks inside it- more frustration, sedentariness, dependence, longing, tears- but I am no longer afraid. I will continue to enter when I need to grieve the death of the most recent version of my physical self. And when I’m ready, I will come back out, and enjoy being here, until it’s time to go back in again. I will continue moving in and out, each time emerging physically weaker, but with newer adaptations allowing me to live an even bigger and fuller life. Each time, inviting loved ones to sit right beside me. Each time feeling more free and less afraid of surrendering to what is. Each time trusting that the darker I go, the brighter I will emerge.

Rubber bands, Graphs, Psychedelics and Whispers

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

Harder To Look Away

Sometimes it all feels so hard and heavy. And sometimes it doesn’t. Sometimes I’m in awe of my emotional resilience and ability to grieve and adapt. And sometimes I can’t stop crying and don’t know how I’ll move forward. Sometimes I am overwhelmed with gratitude for all that I have. And sometimes I still can’t believe that I am that unlucky one in a million living with this disease.

None of this is new. I’ve been writing about the same themes for the last 10 years and quite frankly, it feels as if my story has become tiresome. I am grateful to have grown and evolved throughout my almost 16 year journey with this disease and also, I’m over it.

I’m over investing so much in staying present and mindful. I’m over figuring out adaptations for simple physical tasks. I’m over hearing the clock tick increasingly loudly as I try to cram in travel and adventurous experiences. I’m over being so disciplined about exercise and taking care of my body when it just keeps wasting away.

But more than all of the above, at this particular moment, I am over the heartache that comes with not being able to protect my kids from my disease.

A few Saturdays ago, my younger son had his first basketball game after two long years. I hadn’t seen him that excited in a while. In fact, we were all excited. To be back in the gym- hooting and hollering, watching him score, seeing familiar faces- it was the mood boost we all needed.

After the game, we walked back to our car with another couple and their son. I was chatting with the mom about summer plans and before I knew it, my forehead was on the concrete, my head was pulsating and I heard my son‘s terrified voice, “there’s blood everywhere!” I looked down and saw blood splattered on the ground and on my jeans.

I’ve had plenty of falls over the years, but only two really bad ones, neither of which were witnessed by friends or family. I immediately offered reassurance, “It’s okay, I’m okay.” I looked up at my husband and asked how bad it was. “Pretty bad“ he said in his reliably familiar calm and compassionate voice. I looked back at my son whose face was frozen with equal parts fear, sadness and utter embarrassment.

I couldn’t get the bleeding to stop. As I sat calmly on the ground, I joked that there was no better company to fall in than that of three other physicians, one of whom ran to find ice, the other to grab paper towels. There were two gashes on my forehead and my knees were scraped and bloody, as I had managed to fall onto them first.

Once we determined I likely didn’t need stitches, we slowly resumed walking back to the car- the other mom apologizing profusely and unnecessarily for not catching me and my husband regretting aloud that we hadn’t been walking with our arms linked as we often do. And just as we were approaching the car, I felt it. I didn’t bother resisting. I rarely do these days. I averted my eyes as I quickly said goodbye, then climbed into the car and started crying. 

I looked at my son in the back seat. He seemed angry and still in the freeze mode of fight, flight or freeze. I told him how sorry I was. I reassured him that whatever feelings he was having were okay. I told him that I wished he didn’t have to experience this kind of pain, and that this was just our reality. And then he finally broke too. Neither of us were able to defend against the overwhelm of emotions. He didn’t want to hear anything I had to say. I didn’t blame him. As my husband quietly drove us home, all I kept thinking was how is this my life.

When we got home I showered, washed the gravel out, cried some more and then did what I’ve learned is one of the few things I can do to prevent the heaviness from crushing me- I reached out to others to hold it with me. I sent a couple of ghastly photos to my sister and my close friends. I sat there for a while in my bathroom, texting, sharing, processing, wondering if I’d have scars, all the while uncomfortably aware of the rational and logical questions I knew I’d have to confront on behalf of myself and others. Are my days of walking short distances independently with only a cane over? Was it time to officially transition to the next level assistive device? Where is the line between being resilient and motivated to do what I can for as long as I can and being stubborn and foolish and in denial?

I was angry that yet again with this disease, I’d been forced to stare at something I desperately didn’t want to see. And now I had no choice but to see it literally every time I looked in the mirror.

By the next day, after having shed the majority of my tears, we pretty much returned to our usual baseline. I sat in the backyard with an ice pack to my forehead, watching as my younger son played basketball and my husband made pizza. As I listened to the classical music coming from my older son’s bedroom, I had a moment of gratitude- for the fall not having been worse and for always having a soft place to land in the life I have created…But it wasn’t enough.

I felt down for a little while longer. Despair even. I didn’t have my usual zest. I couldn’t find my sense of humor. I cried on and off. I couldn’t think about the future (except to consider canceling the trip I had re-booked to Italy for this summer, which now just felt daunting). Every time I awoke in the middle of the night to shift positions, I felt dread. There are countless nights ahead of me. How am I going to keep this all up.

It’s scary and unsettling when I feel this way. When all the defenses are down, I wonder what will happen to me as I get worse. I worry that the coping tools I have relied upon thus far may no longer be a match for what’s coming as my weakness progresses. I worry that I will stay sad. Or grumpy and irritable. I worry that I won’t be as fun. I worry that I will lose myself.

After about two weeks, I somehow managed to find my way back, for the most part. It’s tempting to say that I don’t know exactly how, but I do, because it’s the same formula every time: feel my feelings, no matter how uncomfortable and stay where I am for as long as I need to until most of my feelings are felt.

As for my boys, I know I cannot protect them from how bad my disease may get. My lack of control over that fact feels unbearable at times. To tolerate that discomfort, I have to try to focus on what I can do.

I can make it safe for them to have and express their feelings around my disease. I can tell my son, when he admits to seeing images of my bloody forehead in his mind, that it’s natural for this to happen right after seeing something so scary. I can validate their feelings and help them feel less alone, like when he confesses that he worries about me falling when I’m out by myself. I can try to teach them that emotional agility and a willingness to adapt are really the only reliable tools we have to survive this painful, beautiful, overwhelming life.

And then I can ask them to get the trekking poles out of the trunk for me as we make our way to the gym…

“For after all, the best thing one can do when it is raining is to let it rain.“
Henry Wadsworth Longfellow

“Discomfort is the price of admission to a meaningful life.”
Susan David, PhD

And now for an announcement: The NDF Gala is back in person this year. It will be held on Sunday, April 24th at the Skirball Cultural Center. This year’s theme is “Casino Royale.” If you are available and able to attend, we would love to see you. If you are not and you have the means to make a donation, we would feel so grateful. And if neither are feasible, if you could spread the word to people in your community, it would mean a lot. Here is the link to purchase tickets or make a donation:
curegnem.org

Suffering = Pain x Resistance

I wrote the first two paragraphs of this post a few days ago when I was deep in it. Then I had to stop, because it felt like too much. Then, a few days later, I came back to it…

I am overwhelmed. There is so much going on in my head and in my body. Too much. Usually this is when I write. But I am caught between the compulsion to share everything and a deep desire to not utter a single word. I do not want to be here. I have always dreaded being here. I am here.

I am terrified.  I have become so adept at “holding both” over these past 16 years. As my body has weakened, I have strengthened my ability to make room for all the opposing feelings simultaneously-to feel blessed and cursed, at peace and terrified, lucky and unlucky. But it’s getting harder to maintain my balance in the combined dream and nightmare that is my life. I’m worried that I can’t continue to prevent this disease from contaminating all the true joy and fulfillment my life offers me. 

Lately I have started to struggle with sleep. One of the dreaded outcomes of this disease, aside from potentially/eventually not being able to feed or dress myself (I still can’t believe those words apply to my reality), is not being able to move around while sleeping and needing to be “rotated” throughout the night. Though I am not there yet, it has crept into my field of view and I am horrified.

I sleep in the same position every night- curled up on my right side, facing my husband, with a pillow between my legs for support. I’ve done everything to maximize my comfort- from our Tempur-Pedic pillows and mattress to our just right lightweight comforter. (It’s never lost on me how lucky I am to have the resources to manage my disability in the ways that I do.) 

Until now, I’ve surprisingly managed to sleep quite well. But early last week, I noticed some redness and tenderness on my right ankle. I figured I had bumped it. Or my new sneakers were agitating it. But then I started to wonder… Although I’m still physically capable of moving around in bed, I literally fall asleep and wake up in the exact same position, not having moved all night. Surely that can’t be good. What if…And then I shut it down.

I kept it to myself. I didn’t even tell my husband. How could I tell him if I couldn’t even tell myself? I eventually mustered up the courage to Google it: “pressure sore.” The mere thought of it made me cringe. It catapulted me back to rounding on inpatient internal medicine wards in medical school and residency- depressing memories of frail, elderly, bed-bound patients with bedsores or pressure ulcers. But I am young and healthy and still relatively mobile. It can’t be.

And then I mustered up a bit more courage and posted on the HIBM/GNE Myopathy Facebook group. Fellow patients generously offered their accounts of having similar sore spots, needing to use yoga straps to pull up their legs, attaching railings to the sides of their beds to help shift around, and relying on partners to move them.

And then, finally, after all the shock, denial, panic, intellectualization and data gathering, l surrendered to the deep emotional pain that comes with laying down a new tombstone in the cemetery of this disease: “Being able to sleep in peace without worry, fear, physical discomfort or assistance.” And I cried. A lot. On and off for days.

The steady investment in mindfulness, self compassion and grieving that is required for me to live an emotionally healthy life is exhausting. I honestly thought that by now I’d be done having to work so hard; that somehow I’d be spared from experiencing these dreaded next phases and accompanying feelings. I imagined proudly telling the story of how the non-profit foundation that my family started funded the research that resulted in a treatment to stop the progression of my disease before it got really bad. As in, before it got this bad.

Instead, I am forced to confront the uncomfortable truth that it only gets exponentially worse from here. 

Life is hard. There’s really no way around it. It is beautiful and strange and wondrous. And also, hard. (It doesn’t help that it feels like we are witnessing the demise of civilization.) One thing I have been reminded of over and over again with this disease is that it is resistance to pain that causes the most suffering.

So this is how I surrender- by processing, writing and sharing my feelings, by exposing my vulnerabilities, and by reminding myself that emotional intimacy has always been the greatest antidote to my pain…

La vita è pazza, no?

My membrane has been quite permeable lately. So much so that I just cried when asking Maria at the American Airlines desk for a tag to check my TravelScoot at the gate. Then I cried in the airport bathroom stall. And then one more time in front of my boys, which I rarely do. I’m not sure what’s going on with me. Actually, that’s not true. I do know what’s going on with me…I guess I’m just in awe of the fact that no matter how often I have to confront the reality of my disease, it still hurts so much. Even 15 years later.

We are at the airport for the first time since December 2019. I feel incredibly grateful and lucky to be able to take an island beach vacation with my family.  I also feel sad, scared and deflated. Sad because no matter where I go, the losses come too. Scared because I don’t know how my body will handle being out of her comfort zone for the first time in a while. And deflated because despite the number of times I’ve been stuck behind with my scooter in TSA, forced to wait (always in the way of hurried travelers) while someone repeatedly calls out for a “female assist” to pat me down and send me through- it’s no less uncomfortable.

The truth is, it’s not just all of that. Underlying and exacerbating the sadness is the fact that we aren’t boarding a plane bound for Puglia, Italy. (I’m just going to share authentically here and let go of judgement.) 

Italy holds a special place in my heart. One month after my now husband and I started dating, we whisked ourselves away to a romantic weekend in Florence. (One of the many perks of going to medical school in Israel.) That weekend was the first of a handful of trips to Italy we had the extreme good fortune of taking. We were young, carefree and in love. It was pure magic. Every time.

In the fall of 2019, I figured our kids would be old enough to take our first meaningful international trip that coming summer. Two destinations were at the top of my list: Japan (forest bathing + onsen soaking + the combination of ultra modern and traditional) and the southern coast of Italy, as I had never been to that region. We settled on Puglia, right at the heel of the boot, an area comprised of tiny seaside provinces. I found a local couple to help plan our itinerary: olive oil tasting at an (inaccessible) underground olive oil mill, kayaking (non-adaptive) through sea caves, jumping off rocks into the Adriatic Sea in Polignano a Mare, learning to make orecchiette in a grandmother’s kitchen. These were things I felt confident I could still do, but barely. Time was of the essence.I couldn’t wait to tap back into the magic: the food, the language, the beauty, the style, the exploring of new places.

Then the pandemic hit.  As did the reality that Italy wasn’t going to happen. Not that summer at least. Obviously, in the grand scheme of the tragedies unfolding around us, it was nothing. Ridiculously insignificant. Superficial. But in the context of my slowly weakening body and in my heart, it was devastating. So much so that I never really let myself process it. Until now.

What once may have been an inconvenience and disappointment, now feels like an irreversible loss. What I could do three, two, even one year ago, I can no longer. Stairs are more daunting, maintaining my balance upright is trickier and in these last few weeks, I have experienced frequent and fearsome fasciculations (last ditch involuntary muscle contractions that indicate imminent muscle death) in areas that I always thought would be spared. The control I once had over my physical body continues to slip away, no matter how tightly I try to hold on. It takes an inordinate amount of strength to let it go. 

Here’s what I will hold onto this week: the compassion of strangers- like the seat upgrade given to us by Maria before boarding and the paper towel brought to me from across the way (without me asking) by a woman in the airport bathroom. I will hold on to the loving hug given to me by my older son when he saw my watery eyes.

I will hold on most tightly to the experiential knowledge that this is my process: eventually let the sadness, anger and fear come up and out to make room for acceptance, once in acceptance, invest in adapting; after adapting, get back in touch with gratitude and joy, then stay there until the next inevitable loss, at which point the cycle will repeat itself. Adapt and evolve. It’s an exhausting process, but seems to be the most worthwhile.

During our courtship, Noah left a bouquet of flowers at my apartment doorstep with a note that read, “La vita è pazza, no?” Twenty one years later and it still holds true. Life. It is indeed crazy.

As we slowly exit the pandemic…

A couple of months into the pandemic in May 2020, I was invited to participate in a one on one backyard chat hosted by Cantor Tiffani Coyot of Temple Isaiah. In addition to being a cantor with a stunningly gorgeous voice, Tifani is also a self described “wellness enthusiast.“

Tifani recognized early on that members of the community were struggling to find ways to cope in what was back then an unprecedented reality. In an effort to offer support, she interviewed various professionals and experts specializing in physical and psychological health and well being.

As we sat in front of our computers in our respective backyards, we discussed a variety of topics. I spoke about the overlap between the pandemic and my disease in terms of learning how to relinquish control and tolerate uncertainty, about the importance of being vulnerable enough to feel our feelings- especially in the face of grief and loss and about my favorite topic, the deeply therapeutic benefits of true emotional intimacy.

My hope as we slowly exit this pandemic is that we carry forward with us the lessons we learned, beyond those related to good hand washing. Getting comfortable with discomfort is an incredibly valuable skill to hone, pandemic or not.

I also hope that we as a society can remember how capable we are at adapting to meet the needs of everyone. People with disabilities are the world’s largest in minority, yet it took a global pandemic to make essential activities like shopping and doctors’ appointments more accessible with curbside pick ups and telemedicine appointments. (More on that in a future post.)

If this year has taught us anything, it’s that we are all more capable of changing and growing than we realize.

Below is the video of our chat…