Going Home Again

“What is the meaning of life? That was all—a simple question; one that tended to close in on one with years, the great revelation had never come. The great revelation perhaps never did come. Instead, there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one.”

—Virginia Woolf, To the Lighthouse

Virginia Woolf believed that life is made up of one or two days that change everything. Many of her most beloved works are centered on this premise. To the Light House, Mrs. Dalloway—each follows the lead character through one of those singular days. Twenty years to the day from the date of my mother’s massive Multiple Sclerosis attack, that we simply termed “the drop,” I find myself sitting in an infusion chair in Smillow/Yale Cancer Hospital receiving my first bio-therapy infusion to keep my own newly-diagnosed MS at bay. My mother was 38 when “the drop” occurred. In medical terms, the translation of “the drop” is a massive Multiple Sclerosis attack to the cerebellum—the central processing area of the brain. At 37, I find myself fighting Progressive MS. Usually in this travel column, we will traverse some awe-striking landscape. However, this time around, the primary terrain we will cover is internal—the past—and the small quiet places of coming to terms. In the future editions, we will chronicle adventures out into the wider world of the wild , but this edition is about coming home after having one of those surreal days that (for better or worse) change your life. My mother was diagnosed in 1989–what the doctors term the “dark ages of Multiple Sclerosis.” We were driving down interstate 91 en route to upstate New York when my mother turned to me in a voice of controlled panic, “Les, honey, I can’t see. You’re going to have to help me get the car to the side of the road.” When I heard these words, I was 7-years-old—my feet didn’t touch the floor of the passenger seat in our old light blue Ford Escort. I sat with an old smushed bed pillow and my blanket, (which I carried everywhere in true Linus fashion,) completely out of my depth. With the help of a toll booth attendant who stopped traffic in at least one lane, I managed to navigate the car to the side of the road where my mother called her then-husband for help. In the coming months, the doctors diagnosed her with a brain tumor. A single mother, she prepared to leave me alone in a difficult world. The terminal “brain tumor” diagnosis was later downgraded to Relapsing Remitting MS. Over the intervening years, mom would suffer some mild flare ups—numbness, vision issues—but nothing that compared to the complete loss of function and mobility she endured during “the drop” in 1999.    

Gray Matter: A Dependency on Answers

It was by freak accident that I found myself on the phone with my partner in late 2018 after a routine CT scan saying the words, “They found a shadow on the CT Scan.” My throat thick with fear. The shadow on the CT scan clarified to become, “Multiple lesions in the juxtacortical, periventricular and infratentorial brain in both the gray and white matter.” It had been an unrelated head injury and a nagging internal urging that I should have a CT scan that had brought about the return to the rabbit hole of medical testing, which I had been through during several other bouts with injury and illness—the frightening corkscrew of prolonged testing resulting in only opaque answers. The questions are logical—simple even—but the answers are non-existent. Be it medical matters or matters of the heart, mind, and life—I’ve come to believe answers do not exist. Instead, what many categorize as “answers” are in fact opinion. I learned this many years ago and then I was reminded again after seeing three Neurologists and getting just as many different opinions:

• Opinion 1: (At the time of the initial shadowing being found.) Just normal shadowing. There is no need to pursue it further. Don’t worry about it.
• Opinion 2: (At the time of the next step being taken, post-MRI.) I see these type of lesions in people with chronic headaches. There is no need to pursue it further. Don’t worry about it.
• Opinion 3: (At the time of the next step, the second MRI and post-spinal tap.) Given the lesions, your history of dizziness, imbalance, fevers and the presence of oligoclonal banding in your cerebral spinal fluid, we are comfortable diagnosing you with MS—most-likely primary progressive, given the absence of the attack/remission episodes. (In other words: worry about it.)

We have this codependency with the institutions and figures who provide answers. The need for answers seems rooted in our need for simplicity, stability, predictability, the longing for control in the chaotic state of life, and most of all the need for a linear narrative that provides that orientation to what is illogical. My mother’s husband left her within weeks of the diagnosis. Was the sickness the reason for the split? Not necessarily. If your partner can leave you in a moment of such need, there are already underlining issues in the relationship. The illness merely highlights them. Within 6 weeks of my diagnosis, my partner of 3 years told me we were finished. As I packed my belongings, it was admitted that “the timing sucked” and that the break had nothing to do with the illness. (I agree: the timing “sucked” and, yes, the separation had little to do with the illness.) The illness simply highlighted the absence of a future in the relationship, which is always a harsh reality to face. (The parallelism between my life and my mother’s life can stop at any time.)    

You Can Go Home Again

Thomas Wolfe once wrote, “You can’t go home again.” However, you can, you just can’t expect it to be the same as it was before you set out into the wider world. Thrown out of my relationship and weary from living out of a bag for three years, I did just that: I went home again. I packed up all my belongings into my Toyota hackback and I moved back to my small hometown in Connecticut—into the house I shared with my mother before I ventured off into the world. And this time, I found my mother taking care of me. If you’ve ever seen the Gilmore Girls, you can easily get a sense of my mother and I’s relationship. We are Lorelai and Rory through and through. Me the book-loving, awkward, nerdish, writer and my mother the single parent who is fiercely independent, broke from most of her family, and is just trying to make her way through the world and give her daughter everything she deserves. Over the years, our relationship has morphed—during my childhood we were mother and daughter; throughout my teens—when I cared full-time for her—the roles reversed and I became the mother and she the child; in the years after that, as I grew unto adulthood with all its awkwardness and heartbreak, we became sisters; and now, as I returned home—coming apart at every seam—we had rounded full-circle and I was once again the child and she the rock-of-a-mother, steady and reassuring. I went out into the world—I explored, I met “the one” underwent the shattering of realization this person wasn’t “the one,” got my ass handed to me (emotionally-speaking), and went back home where I hauled my bruised ass to therapy to process the death of what I thought my life would be and the exploration of what I wanted my life to become. (i.e.: Adulting 101). Returning home, my room was frozen in time—seeing my room was like walking into a homestead that had been suddenly abandoned after a disaster. Unopened mail sat on my dresser dated from September 2015-–the time I suffered the miscarriage of twins and moved to the city to live with my then-new partner. At the time, the move to the city seemed logical–well-thought-out even–but reflecting on the state of my room, I could clearly see in hindsight, I had run away. . . . I’m sure it was only due to my mother’s sixth sense for dirty dish-ware that prevented me from coming home to a 3-year-old, cold cup of half drunk coffee. Coming back, I started a process of healing and of reclaiming . . .    

Instructions for Care

Pick Yourself Up,

Dust Yourself Off

and Start Again

[Repeat as needed.]

Step 1: Unpacking the Past. There is a few saying that come to mind when I think about “unpacking.” One is the mantra of the minimalists: Don’t Organize the Clutter. The second is the simple but humors: Let that Shit Go. If you combine them both, it kind of gets to the root of this step: Don’t Organize the Clutter. Let that Shit Go. This is not an endorsement of the if-it-doesn’t-bring-you-joy-get-rid-of-it philosophy, though it may sound like it. This is actually a hybrid of the minimalist philosophy of reducing cluttered for the sake of calm and finding freedom in reducing possesses and my personal philosophy of clearing out objects and people who are no longer serving you in order to make room for new growth. It also gives you the opportunity to sift through your belongings and reclaim your space to make it comforting and reflecting of you as an individual. Emotionally speaking, there is always unpacking and sorting to do when in regroup mode. It is a favorite saying of mine that, “I have more baggage than a Red Cap at LAX.” It is true of all of us, some of us are simply better at hiding it than others. Facing the things we’ve tucked away in the boxes of avoidance can help us move towards peace. This can mean unpacking emotions or unpacking various items with suppressed meaning. Step Two: Coming to Terms with Aloneness Become Comfortable with being alone before you start looking for another relationship. One of the hardest parts of ending a relationship is the loss of companionship and routine we’ve established with our partner. Friday and Saturday nights—that free time that was ours—is when I felt the loneliness most acutely. Seeing such moments coming each week, I could start to do what my therapist terms “cope-aheads.” (A cope-head is a skill in the Dialectic Behavioral Therapy DBT toolbox. Essentially, it involves how to prepare in advance for something we foresee happening that will cause us stress.) Circumstances can leave us alone for periods in our life—be it suffered in the wake of a death or divorce or changes in the lives of those who have filled our time/space—during these legs in our journey, we can feel abandoned. Depending on the circumstances, the feeling of abandonment may be valid; however, whether the feeling is justified or not, I have found it is important to find a way to embrace our solitude rather than tolerate it. Embrace the freedom to transcend abandonment. Step Three: Seek New Horizons During those periods of our life when we are facing endings or ugliness, the most helpful thing for me has been to seek out new horizons to remind myself that there are new horizons ahead. I believe that the mind/heart is damaged by ugliness—encompassed within that term is violence, vulgarity, poverty, abuse, loss … numerous things. It is the absorption of this ugliness that contributes toward the afflictions we live with throughout our adult life (i.e.: depression, hurt transmuted into rage, anxiety, despair, dissociation, denial, psychosis, weariness, pessimism, addiction) all those things that create mental and emotional strains (wounds) within us. The remedy for the damage done by ugliness is awe—those natural sights that seem wrapped in an inherent grace that brings us to a moment of pause. The mind is scarred by inhuman ugliness. The salve for this wound is awe. In the “wild silence” (as I term it) waits the balance of imbalance. Step Four: Listening to the Silence Early in the summer, just when everything was coming apart, I wrote in my journal “Sit with the silence. There is something there waiting for you.” Little did I know, I was giving myself instructions for how to move on with my life. Working to regain the ability for stillness after years of living with anxiety and hyper-vigilance is a practice of working towards healing. These last months of solitude—of sitting with the silence—have changed me. I’ve found a freedom that I am not ready to let go of again. I enjoy my love affair with poetry, the moon, the mountains, the open road . . . all this time I was searching for someone to complete me, when I am spoken for without even knowing it.    

If you are interested in using one of the images or purchasing a print, contact the author. Prints are available of all images through the Fine Arts America store for the Wild Silence Travel Log. 10% of all profits goes to the National Parks Foundation.