Late in the night on Sunday, January 8th, 2017, I was lying in darkness at my brother’s house near the Long Island Sound in Connecticut, unable to sleep. In the near silence, a neighbor’s boots crunched through the hard ice below the window by where I lay. Otherwise, all was very dark and very quiet. I was alone, my brother and his girlfriend gone for the weekend. I’d been spending a lot of time alone in that house lately. Solitude is vital when you’re going through stuff. And I was certainly going through stuff.
That night felt different, though. There was something big on my mind. Something keep sleep at bay.
The Women’s March on Washington was coming up.
“You can’t go,” I whispered, over and over again, breaking the silence.
I first got Lyme disease when I was twelve, back in the early 1990s. Late diagnosed, we knew even less about Lyme then than we know today. Yet I was fortunate to grow up in Connecticut where Lyme was first discovered, and so got as much treatment as was available. But another round of Lyme diagnosis followed in college, cycles of illness continued into adulthood, and persistent symptoms lingered in between. With over two decades of experience in this arena, I have diagnosis, doctors, and several avenues of care. But I am so physically exhausted on a level only others with chronic illness can understand. A level that requires I calculate my interaction with the world to exacting degrees.
I’d signed up for the Women’s March on Washington immediately, horrified by what the president elect’s agenda would mean to women and minority rights. Then, event details slowly started to emerge.
Hundreds of thousands of people were expected to attend; I’m highly sensitive to the noise, movement, and stimulation of bodies together even in the most manageable of circumstances.
Transit times were expected to be long with busses, roadways, and trains delayed; I carry around aching bones and muscles that burn and spasm when going even short distances.
No one could say how long marchers should anticipate standing during speeches, or how slowly the length of the route would move; I don’t circulate blood into my extremities well and get dizzy spells after only a few minutes standing.
Rules about what items could be brought onto the route were first muddled and then hard to navigate, and participants were told to not expect frequent restroom opportunities; I’m constantly feeding, hydrating, medicating, and resting so that my body can keep fighting the next.
“You are too sick to march,” I started repeating, over and over, in the silence.
My desire to act started to battle against these words – “too sick.” Fear for my healthcare being taken away because I have a preexisting condition clashed against the words "too sick," and my stomach curled into knots. The tenuous laws protecting women and minorities hurtled themselves against too sick and my eyes unleashed a rain of hot tears. I envisioned myself fading from the world because I am too sick to matter in the grand scheme of our country, and my body started to shake uncontrollably. I could feel all the reasons I needed to march combating too sick, and my body curled over to protect herself from breaking.
I was a sick body in the darkness, and all alone in my suffering.
And then I stopped.
January 8th, 2017, I was seven months into a yearlong project of pulling habits out of my life and facing who I was without them. I called the project My Year Without. I’d already gone without social media, shopping, sugar, and holiday gifting, ripping off layer after layer of habit and forcing myself to make choices for better or worse. This January, I was to remove Negative Thought; to stop this exact kind of downward spiral as soon as I recognized it was happening.
And so, I did. I recognized my habit of spiraling self-doubt – the too sick mantra, the streaming hot tears, the fetal position – and immediately stopped. I slowly moved my heavy limbs until they stretched wide on the bed so that my chest could expand, too. I forced my breath to slow. I started repeating a list of five women’s names that helped me invoke power, grace, and calm. I repeated these names until I’d regained full control.
“Yes,” I decided, “I need to be at that march. But if feel this, chances are others do, too.”
I fell to sleep comforted, daydreaming a way to take action.
The next morning, I sent emails to Allie and Erica at Suffering the Silence, and #MarchingWithMe was born. The idea – that volunteers could wear photo banners of those with chronic illness and/or disability at the Women’s March so that we could be there in spirit – brought such empowerment into my body. The first #MarchingWithMe campaign brought hundreds of Marchers and Supporters to Women’s Marches around the country, and I spent the day in happy tears, sharing words and images of those who felt similarly empowered by the partnerships and their part in the advocacy. As I continued on in My Year Without, we matched #MarchingWithMe partnerships at other events. Then, Allie and Erica continued into the 2018 Women’s March while I was tucked away in a cabin the Pennsylvania mountains writing the book The Me, Without, due to an editor in early spring. That frigid winter day, I watched on social media and felt the familiar thrill of gratitude as my Marchers, Jenna and Bianca, took me with them to New York City and Washington, D.C.
Today, my body is sicker than it was two years ago. But I feel as much emotional joy in a day as I do physical pain. I know how to better tend my symptoms. I can better communicate my needs and the needs of others with chronic illness, too, be they to march organizers or my closest friends. Both I and the Women’s March are better prepared to bring Marchers and Supporters together this year; better prepared because of the collective work of hundreds of thousands of us. #MarchingWithMe began because of such collective advocacy: because I pushed myself towards greater personal awareness, because Allie and Erica were ready to carry the idea forward, and because hundreds then answered our call. And so, while I don’t yet know if I’ll be a face on a #MarchingWithMe banner this Saturday or wearing one on my back, I do clearly know now one thing: none of us ever marches alone.
About Jacqueline Raposo: Jacqueline Raposo's over 400 stories cross print, digital media, and podcast production featuring fascinating humans in food, lifestyle, entrepreneurship, tech, art, medicine, and more. As the producer and co-host of Love Bites Radio, she studies why and how we love in all forms. And with decades of chronic illness stemming from Lyme disease behind her, she advocates with others as the co-founder of the #MarchingWithMe campaign and a chronic illness essayist. Connect at firstname.lastname@example.org and on social media as @wordsfoodart (IG/T) and @JacquelineRaposoWriter (FB). www.jacquelineraposo.com
Come to the launch with Missy Robbins, Kat Kinsman, and Julia Bainbridge Feb 4 at Strand Books in NYC
ASL interpretation, sensory-friendly sound/light levels, and reserved seating for those with chronic illness provided
Jacqueline will be hosting the webinar, Offline Illness: Exploring Our Social Media Habits, on Monday, January 28 at 7 PM EST on Suffering the Silence's Facebook Live. How can you tap into your intuition, reset your social media habits, and revive your offline time with gentle joys? This online creative workshop will help you gently reassess your relationship with social media. Through short guided meditations, writing exercises, and creative prompts, we’ll explore the idea of habit versus choice and what part illness plays into our digital dependencies. We’ll end with tips on how to infuse some fun into our future time – both online and off.