When I have ______, then I’ll be happy.
Once I finish ______, then I can relax.
Once I get out of _____, things will be better.
(Once I’m healthy, then I can start enjoying my life.)
With originally good intentions, I have mastered the (dysfunctional) habit of putting off joy until I have done x, y and z, which, of course, never seem to get done.
I’m sure we can all relate to this habit to some extent. Perhaps we find it festering as a subtle feeling of ennui, or even frustration, as we go about our lives and fall into certain rhythms, even expecting the feeling itself to lift naturally once certain circumstances shift.
Most likely, it won’t, as life is constantly changing and offering us increasingly puzzling opportunities to grow. Life might even increase in chaos with time: mine sure did.
I am incrementally relearning how to experience satisfaction, relaxation, and delight, regardless of what might be happening or what I accomplish in a day. This change of being became paramount when managing my health felt overwhelming, messy, and hopeless as they did in the year of 2018 and into the spring of 2019.
My brain still thought there was a rosy destination to reach and a feeling to earn in the far off future once things settled down or once I muscled my way through the pain to get there.
I’m cleaning out the gooey crud coating this faulty wiring and welcome you to join me in the process.
Looking back to some of the dreariest days of managing my chronic health conditions, I existed somewhere between waiting for things to get better and pessimistically thinking they never would.
Feeling safety and joy in my physical body felt quarantined off for a future I wouldn’t live to experience.
If I were lucky to fall asleep at night, I’d have several hours free from wondering when the universe would grace me with a glimpse of ease. If not, the nightmare continued, the panic continued, the stains of darkness bled wider.
Even looking into the crystal eyes and cuddling into the warmth of my loving partner before turning off the light each night, I was ready and willing to trade this life for any kind of escape. As the months passed, existing mostly in bed, in my bathtub, or laying on the floor of my living room, the escape and peace I desired so desperately felt even more intangible.
Given the growing intensity of my symptoms and quickly losing any leftover will to live, I decided to try hyperthermia for Lyme disease, which required 4-hour sessions of sedation, IV antibiotics, while simultaneously heating and sustaining the body at 107 degrees fahrenheit. After the anesthesia of the 1st round worse off, I laid in my hospital bed attempting to sleep, writhing in discomfort so foul, so cruel, far surpassing anything my mind had previously experienced.
Instead of a central port, I had a catheter placed in each arm for the procedure: one for the antibiotics, one for the anesthesia. The doctors left them there for the following 2 days of IV vitamins and chelation. As a result, I couldn’t bend either arm fully, as the gauze wrapped around the catheters blocked any movement.
The skin itched and felt damp from my anxious sweating. Every readjustment increased my needle-induced nausea as I imagined the contraptions shattering my veins, so I decided to squirm less and try to let them be. (I am learning to be more equanimous around catheters.)
My head pounded as if I’d drank two bottles of tequila and then proceeded to a round of beatings with snow shovels, apparently a common side effect of hyperthermia treatments.
Given my low weight at the time, my pelvic bone had bruised my butt muscles in the “oven” while my body lay motionless cooking, leaving my backside too tender to hold even my bird-like frame. As a result, laying in any position led to a rich burning sensation that pulsed rhythmically down my legs. From 8 pm to 2 am, I laid there with my ear plugs in and night mask on, using all my inner toughness to survive the internal war of my body and brain.
After a few hours of trying to breathe through the pain and welcome sleep, the floodgates of tears broke WIDE open. I would’ve done anything– cut off my hands, scratched out my eyes, even jumped off our hospital room balcony–to escape that turmoil. I kept waiting for it to soften, but the surreality magnified.
I couldn’t believe my body had become so sick and that this was how I was spending my New Years, clad in white hospital attire, bandaged, bruised, weak, sobbing, and crumbling.
I imagined my numerous groups of friends gathered in far off art galleries, cabins, and living rooms, sipping champagne, laughing, and dancing into the night, smiling, not even noticing that they lived in a body that carried them so effortlessly, so obligingly, so easily… These thoughts increased my awareness of how intolerable my reality and relationship to it had become. By following certain stories and thoughts, I was entrenched in suffering and saw no other option.
My mom woke up to my sniffles and came into the closet-sized room I called home for those two weeks at the hospital. After a 2 am trip to the nurse’s station to loosen the gauze and get some arnica cream for my butt, I ended up in my mom’s bed with the bedside light on. We flipped through the limited channels, and ended up choosing a black and white Western featuring dogs clad in cowboy attire. I cuddled into her bed as we talked and giggled at the ridiculously wonderful film. By 5am, the golden pinks of sunrise started filling the room, the light matching the change in my spirit.
I was surprised to notice that I actually felt happy, in stark contrast to the agony defining the few hours earlier. The moments next to my mom suddenly felt wonderful and safe. Noticing that as true simply required shifting my awareness outside of myself. I had to surrender and accept and then examine the moment with unbiased eyes. Pain was only a piece of the experience, resting in a much larger field of abundance and comfort.
I wasn’t happy in the way I had expected, but I luxuriated in how the fatigue found a way to soften my system. I could finally feel the regal calm and overflowing amount of love that my mom so gracefully carried as she floated around the hospital with me. Despite the less than ideal circumstances, she radiated a relaxed joyousness; She looked so silly and angelic in the provided white cotton outfits. (We couldn’t stop laughing when she first tried on her provided pants, as they accidentally gave her a pair without a drawstring.)
In that night of tremendous turmoil, the idea that we choose to suffer by unknowingly ignoring the good that is inherent in every moment finally seeped into my bruised and burning body. By simply focusing on my mom’s presence and the luxurious rarity of having unrushed time together, I no longer felt bothered by the physical sensations and the doom that had drenched my outlook. I stopped thinking about what my friends and fiancé were doing to celebrate the new year, and instead, cuddled deeper into the moment, overwhelmed by how lucky I felt to have someone like my mother, by my side, willing to laugh at dogs dressed up as cowboys and sacrifice her winter vacation to be in a hospital bed with me.
On my way down the stairs to dinner the next night, an elderly woman asked, horrified, almost whispering, “Did you hear that girl scream yesterday?”
My partner and I smiled mischievously at each other: we were in on the joke.
“That was me,” I replied, proudly, confidently, and actually, not at all embarrassed! I was already celebrating myself, in honor of how ridiculous of a shift I’d made in just the last day. I went from gearing to jump off the balcony, throwing a chair across the room (a habit I have since let go of!) as I crawled out of my skin in misery, to 24 hours later being in a state of calm, blissful, acceptance, bruises, beatings, and all. I reveled in the gifts as they unwrapped themselves; I had been gifted an unexpectedly glorious night with my mom, and just a night later, had my partner by my side. Brimming with newfound gratitude, I tried on new coat of armor. I felt ready for the next round of obstacles, even intrigued to see what life would casually deliver next.
That dark night reminds me that by waiting for certain circumstances to align before I allow myself to experience joy, I might miss out on living my life as it’s happening. I might keep waiting to feel better so that I can relax, but never get there and in the process, rob myself of enjoying merely being alive and the beauty that comes along with living in the present. I might miss out on the magic of the moment, of my relationships, of the unexpected, of the mundane, if I allow the mind to take over and chase down thoughts that are antithetical to how I actually want to feel.
I continue to ask myself, what if this were it? If this were my last moment with my mom, how would I want to show up? If this were my last week to live, what quality of thoughts would I choose? If this were my last moment walking on this earth, what way of being would I like to entertain? How could I relax and even smile as the chaos and pain bombarded my surroundings?
As Dr. Gail Brenner aphoristically stated, “suffering is optional.”
I am determined to make this notion a default in every moment, and invite you to do the same. I am committed to living my life with full-hearted gratitude and appreciation for whatever arises. I can let an obstacle weaken me and try to seek a way out, or I can welcome it, work with it, and grow stronger because of it.
The simple reminder that there is a choice might be the most important perspective shift to make space for something bigger and a little brighter to arise.
When I notice that I am suffering and the mind is chewing on misery, I take it as a signal to question the stories that I’m feeding. I encourage you to do the same, whenever you can, whenever you’re lucky enough to notice you have the chance. Take your suffering and thank it, love it, kiss it, and then choose a different story. I’d be honored to continually serve as your subtle reminder that your life is passing by and in that process, we can choose to play and love our way through it, or we can choose to suffer. It’s an oddly simple dilemma to be in.
The rest of the time at the hospital felt like a suffering obstacle course, every moment a new opportunity to choose more pain or to not. Landmines promising more turmoil studded my perception, but only if I let my mind fall into their traps.
Each poke and procedure still caused me to squirm and cry. I continually forgot to remember that I had a choice, increasing my suffering as I did. But, I finally felt safe. I surrendered more quickly. The moments of deliberately shifting increased, and I did so with less effort.
I had a bubble of love from mom to protect me, and by the 2nd week, my partner arrived, smiling with certainty as he stepped out of his dirty Tacoma. I found it a little more natural to dance through the halls in my hospital gowns. I learned to play pranks on the front desk staff who had so quickly become my friends, allies, and angels, protecting me and working behind the scenes to make sure I was comfortable. A nightly cup of white mushy rice now felt as if it had been delivered by the gods, especially when paired with the sun setting over the ocean. I even smiled with satisfaction and gratefulness as I slurped my pureed chicken and pre-digested baby foods, in the company of other fellow seekers attempting to get well, their loving companions also by their side.
What first felt like a walled-off version of hell overlooking the ocean in the middle of Mexico had transformed into a bizarre opportunity to notice and receive how fortunate I was. I could feel how much I was loved, how much room there was to find joy, especially while wearing diapers, funny white pants, and refusing to miss an opportunity to make the nurses and doctors laugh. Waiting to be happy no longer made sense: there was too much to celebrate right then and there! Even with my body shutting down, I felt like the luckiest human alive: the choice was up to me to remember.
As I let the to-do list build up and the uncertainty surrounding my medical conditions to still be there, I layer my experience with the reminder that suffering is in fact optional. I can embrace the chaos, dance with it, and even paint it with gold, letting it shine as the true gift of clarity that it is.
“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose.”-Dr. Seuss