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 buy soma watson online 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.
Oh Jenny that was a beautiful blog post. I can totally relate to how your feeling. It’s so hard watching everyone else’s lives progress forward with kids etc.. i try and stay optimistic and tell myself that I’m lucky I know that I have Lyme and have found a doctor that is treating me but some days it’s very hard especially when I feel so sick I can barely function or I keep waking up in the middle of the night with anxiety attacks. After having a good cry or anxiety attack(which is often) I just keep trying to focus on the moment right now (cuddling on of my cats is good for this) and not think of the future. I’m just choosing to believe that everything will magically fall into place for my husband and me 😀 Blind optimism maybe but it’s the only thing that keeps me sane! In Australia they are currently doing more research into proving if it even exists in oz and they are trying to get the government on board so hopefully in a few years there will be proper testing and funding to help people with Lyme disease. Funnily enough the main research group investigating into the existence of Lyme disease in Australia is located at my work, I work in a university. Funny how the uinverse works right? Now why dont those coincidences happen when I want to win lotto???? I’m so glad you and Tom have each other he is obviously your soulmate 😀 Hang in there Jen there are better times ahead for you and your husband your both being so strong and these difficult times won’t last forever I have to believe that xx also before I go you have a real gift for writing have you thought of writing a book?
Jen 😊
Thank you so much, Jen! I do hope these days don’t last forever. I have considered writing a book, but I am only in the beginning stages of generating some ideas for it. I am not sure… Hoping Australia can gain some ground in the Lyme-research area and bring some much-needed awareness.
This was a very brave of you, to post this. You capture so well what those of us Chronic Lyme (or any other chronic illness, I am sure) struggle with all the time. Thank you!
Thank you, Melanie! I really appreciate your comment.
Thank you very much, Melanie! I appreciate the comment.
Thank you for sharing such a personal, heartfelt moment in your life, Jenny. Serious illness brings out the best & worst in people. Many relationships crumble under the constant stress & pressure. But it’s when we are most vulnerable, most alone & most afraid do we truly learn what & who we value most in this world. And what a gift that is.
Love to both you & Tom.
A x
Thank you, my dear friends. Your words are always a boost to my spirit. <3
Tears in the eyes of your crusty old uncle as I read this. But remember: many, many of the old and dying have similar experiences, though maybe few of us for such a long time. In this world there is a community of suffering all gathered together in God, when then he “shall wipe away all tears from their eyes: and death shall be no more, nor mourning, nor crying, nor sorrow shall be any more, for the former things are passed away.”
But now, within this community, all may suffer for all.
Aww, you’re a bit of softy. I like that verse very much, and although it’s hopeful, sometimes it seems like eons before that will come to pass. However, I know the plans God has for me haven’t changed, so I continue to push forward.
Thanks for sharing your journey! Terrific post and very relatable. I just found your blog by chance and I am in the same boat. Just turned 36 this past weekend. On & off sick for so long that I can only dream of children – hubby & I both have lyme. We believe we were both bitten by infected horse flies on a trip to the countryside 8-9 yrs ago. THANK YOU for being brave & sharing this, ‘cos God knows we all have our moments of feeling less than worthy throughout this journey. You are a brilliant story teller! ~Well wishes from Orlando, FL
I really appreciate your comments. Hoping and praying that you and your husband find healing. <3
I’ve been in 3 serious relationships since my diagnosis. Well, serious to others might mean marriage and children. Serious to me was the thought that I was in the final relationship that would stick, and trying to follow through on that.
Having an illness definitely created an insecurity in me that I never had before. When I feel myself crashing I can really push a man away, and that I have. But I have also learned that compatibility can span beyond culture, aesthetics, etc, and into the world of chronic illness. Some people simply are not cut out to date me! My ex-boyfriend (who I still love dearly and hope to know for the rest of my life) is a gym rat who cares a lot about staying active and attractive. He admires me for my mental strength and compassion, but he worried more than I did about how we could be compatible if I got worse (and to be honest, this stressed me out and the stress made remission that much harder). Boyfriend #2 😛 well he wanted kids SO much that when I told him I may not be able to have them (don’t want to pass anything on) he got really bitter. At that point I was relieved to be single, to take care of my health without worrying about my Lyme Disease breaking anyone’s heart. But my friend, who had been waiting for me to get out of a relationship for years swooped in and basically said “please don’t be single, date me!” He exercises for health reasons – not vanity reasons; he doesn’t mind having or not having kids; and he is a fighter in life in general, and for me. My insecurities don’t turn him off, and so my insecurities have stayed small and negligible to the big picture of our relationship. I love being with someone who can worry for me but doesn’t absorb negative emotions and can keep living life. He’s a hustler and pulls off things that not everyone could, and I appreciate being around someone who gets that good things don’t come easy, and also, that life is hard enough so we should all be each others cheerleaders 🙂
I love that you shared this with me. Thank yoU! No relationship is easy, but it’s made especially difficult when a chronic illness is involved. It sounds like you’ve found a kind, compassionate man, and my sincere hope is that this relationship work out for you. Truly, you are worth being in a good relationship! <3