Please note: This article first appeared on The Mighty on August 24th, 2016.
On a summer afternoon in 2013, I lay in my bed staring up at the ceiling contemplating how to cut my losses while my life spiraled out of control. I felt as though there was an anchor attached to my soul pulling me deeper into an abyss of unfathomable despair. My thoughts drifted to an existence of solitude, and for a brief moment, relief washed over me. I had already become disconnected from most of my family and friends — an unforeseen casualty of a prolonged hardship. During a period of panic and uncertainty, I considered whether or not I should also cut ties with my husband, Tom. I fantasized about living the rest of my days — however long that would be — without the expectations of someone else. Furthermore, Tom never asked to be my caregiver, so letting him go seemed noble to me. Why should we both have to struggle when he could escape this never-ending nightmare?
We lived in an old, second-story Chicago apartment where watching new cracks form in the plaster became my daily entertainment. I crashed in 2010 and then again in 2012, leaving me stuck at home and in bed, intolerable to sound and unable to sleep. I took combinations of medications and supplements in amounts that could knock out a small elephant. But they often had little to no effect on me. My brain and spinal cord burned with pain; my muscles ached with exhaustion, and I could no longer sit or stand for more than a few minutes. Too weak to talk, I communicated with my mother in Minnesota through texts. Regrettably, I couldn’t bear the idea of hearing the sadness in her voice or the possibility of her seeing me in this condition. My body had given out on me, and I suddenly realized this mysterious ailment wasn’t going away on its own.
Before my illness, I was an occupational therapist, an athlete, a pilates instructor, and the creator of a well-respected exercise DVD. Since I had carved out a unique niche in an up-and-coming health and wellness space, my career path looked bright and full of potential. Then, without warning, it all slipped away.
The illness that derailed me in the prime of my life was chronic Lyme disease. Steeped in medical and political controversy, Lyme disease is an ostracized diagnosis. Physicians are taught that this disease is difficult to acquire and easy to treat. However, nothing could be farther from the truth. Lyme disease can affect every organ, joint and muscle in the body, and its symptoms mimic many other diseases. Sadly, there is no cure and no linear path to healing. At best, there is remission. Lyme is nothing if not unpredictable and destructive.
After the fatigue and pain had beaten me down each day, Tom got what was left of me — which was never very much. Although I was his wife, I was also his patient, and sickness was a prominent third entity in our marriage. I constantly needed his assistance, and therefore I couldn’t tend to his needs or reciprocate his affection. On an occasion, we had rare moments of joy and laughter, but they were always short-lived by a flood of symptoms. There wasn’t anything I could do to change my fate, but Tom, well, he could be spared from this tragedy, I thought. I became convinced I could release him of his caregiver duties if I finished out my remaining days living with my parents in Minnesota, and I prepared myself to tell him to move on with his life and find someone else.
One day, I called Tom into the bedroom and beneath an outpouring of tears, I uttered, “You need to leave me before this ship sinks. I’m not getting any better… you don’t need to sink along with me.”
Quietly, Tom sat on the edge of the bed and listened to me as I continued, “There’s still time to save yourself. You don’t deserve this! You can remarry and have the family you’ve always wanted,” I sobbed, knowing that those things weren’t possible for me.
The heaviness of my words took my breath away as I realized I was letting go of the person I loved most in this world. My heart couldn’t endure the pain, so I covered my head with a blanket; I was no longer able to look at him.
Suddenly, I felt a gentle arm wrap around me and heard these tender words, “Jenny, if you think I’m going to leave you, you don’t know me very well. I’m the type of guy that would sink with the ship. I’m not leaving you. I love you. I need you in my life. Where would I be without you? Probably alone and a lot less happy.”
The tears slowed to a trickle and then halted. Tom could be a little rough around the edges sometimes, and I liked to think I’d softened him up a bit over the years. As an image of us laughing together popped into my mind, a small smile formed on my lips. “That’s true,” I mumbled from under the blanket, “Youwould be alone and a lot less happy without me.”
At that moment, Tom’s words reminded me of my worth in our relationship, which I had unknowingly lost somewhere along the way. I realized Lyme disease might have stolen a lot from me, but it didn’t diminish my value as a woman, wife, friend, or partner. Though, I’m embarrassed to admit I believed the lie that I was somehow “less than” more times than I can count.
Three years into aggressive Lyme disease treatment, and I am still working toward recovery. Though I’ve made great strides, our life together looks nothing like most other couples our age — no children, no financial stability, and no grand plan for the future. We live simple, quiet lives with three dogs and the constant struggle and uncertainty of a chronic illness. During those previous months of intense struggling, I’m thankful Tom refused my offer to leave. I know I would be alone and a lot less happy without him too. Today, there’s a lot of love between us and a mutual understanding that we are stronger together than apart as we continue to fight this ongoing battle.