The Day I Told My Husband to Leave Me and My Lyme Disease

Please note: This article first appeared on The Mighty on August 24th, 2016.

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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. 

CHRONIC ILLNESS AND QUALITY OF LIFE, PART 1

I had been an Occupational Therapist for nearly a decade before I became too ill to work.  Prior to the decline in my own health, I had seen patient’s with a wide variety of diagnoses — rare brain tumors, cancers, Multiple Sclerosis, and Scleroderma just to name a few.  Although the pathology of these illnesses are all quite different, it did not matter if an illness was acute, chronic, visible or invisible. Illness was still illness and it’s plight was not easy on anyone.  I learned this fact early on in my career.  I also knew that at no time could I truly relate to the variety of illnesses the 1,000+ patients I had seen, endured on a daily basis.  Where I may have fallen short in my personal experiences with my patients’ illnesses, I made up for with sensitivity, imagination, and the genuine desire to help.

Over the past few months, I have observed a trend amongst bloggers, online forums and support groups of chronic illness sufferers feeling increasingly more misunderstood by family, friends and doctors.  I often hear phrases such as, “They just don’t get it.” or “If they could walk a day in my shoes, maybe they would understand me better.”  Obviously, there is no substitution for the experiential knowledge gained by actually enduring a chronic illness.  Unfortunately, it is unreasonable to think that most people in the lives of the chronic illness sufferer will likely ever encounter the same unique set of circumstances.  Consequently, patient’s feel lonely and isolated.  Families become confused because they don’t know how to help.  Friends may disappear because they no longer know the “right” things to say.  Doctors are often too busy to really have the time to listen to the needs of their many patients.

So how do we stop the trend of the chronically ill feeling perpetually misunderstood?  Can we, as family and friends, actually view our ill loved one with new eyes?  I believe the answer is “yes.”  I often refer to symptoms associated with a chronic illness as The Revolving Door Theory where symptoms seem to cycle in through the door one minute, and cycle out the door the next.  Rather than seeking to solve the persistent list of revolving symptoms or criticizing your loved one for having them, try a new approach.  Be willing to help improve their quality of life by displaying empathy, love, kindness and compassion.  A few simple actions can help sustain those of us on the lingering and unpredictable path of chronic illness to experience a better quality of life.    

On the next blog post, I will list ten ways in which those close to me have demonstrated empathy, love, kindness and compassion during my long battle with Lyme Disease.

AN INESCAPABLE LOVE

If it’s possible to simultaneously feel multiple opposing emotions about sickness, then that is how I would describe myself throughout most of my battle with Lyme Disease.  I feel both terribly weak and incredibly strong at the exact same time.  I experience a great sense of loss of my former self, but somehow have gratefulness deeply rooted in my heart.  I feel depleted in energy, yet have never felt more satisfied in my life. I wrestle with the notion that I am failing in my quest to overcome this illness.  At a moments notice however, the tiniest step forward can leave me feeling victorious.  I have also known a heart-breaking kind of loneliness, the kind that can only be understood if you are separated from those things and people that you love most in life.  Without such great loneliness though, I never would have encountered such a profound sense of love.

In spite of being ill, failing, lonely, struggling, empty and weak, I am still lovable.  My mind tries to comprehend and my heart attempts to absorb the magnitude of  knowing that just simply because I came to be on this earth, I am unconditionally loved. With my merits gone and my vulnerabilities on display, this revelation came to me.  Somewhere between fighting for my life and realizing I have a second chance at it, I changed.   My core, my spirit, the very deepest places of me, have changed.  I now walk this journey equipped with the knowledge that my lowest lows and biggest mistakes are wrapped so tightly in a powerful love of which I will never escape.

Would I have come to understand this truth without my illness?  I do not know, but I am thankful for the lessons learned during my most painstaking days.  I no longer feel the persistent urge to work harder, try harder or push myself more to heal.  Contentment has finally settled into my heart.