I first came across Aaron Jackson in 2018, when he submitted a guest blog for our website. It was titled An anthropologist’s view of Lyme disease and suicide.

Aaron was the anthropologist in question. As a Lyme-infected person who had tried to take his own life, he was uniquely qualified to discuss this topic.

His article clearly hit a responsive chord with our readers. It became one of our website’s most-accessed blogs that year.

I recently heard from Aaron again. He lives and works in Australia now. His research focuses on fatherhood, caregiving, and disability.

He has written a book called “Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities,” recently published by University of California Press.

Aaron was propelled into the world of caregiving after the birth of his severely disabled son, Takoda. The book uses his personal experience caring for Takoda as a springboard for larger discussions about fatherhood, caregiving and our cultural ideas of masculinity.

He also includes some of his personal experience with Lyme disease. The following excerpt of his book talks about how Lyme thrust him into the depths of despair, and what ultimately came of it.

Worlds of Care

Several years later, while on my doctoral fieldwork in Norfolk County, Massachusetts, I was unknowingly infected with the spirochaete bacterium, Borrelia burgdorferi (Bb): the etiological agent of Lyme disease.

These cork-screwed shaped bacteria enter the bloodstream and disseminate to multiple sites throughout the body. I experienced muscle and joint pain, muscle twitching, nocturnal seizures, cardiac abnormalities, depression, fatigue, and substantial neuropsychiatric disturbances.

Lyme disease is a shape-shifting illness, and symptoms can vary. Early on, the confluence of symptoms confounded medical professionals. It took almost 12 months before the Centers for Disease Control and Prevention diagnosed me with Lyme disease.

My illness, much like the arrival of a child who deviates from neuropsychological and physiological norms, punctured my familiar world and cast my life into uncertainty. This amounted to a loss of control over my life and caused immense despair and anxiety.

My ordinary patterns of everyday life deteriorated. The world around me no longer hummed with vibrancy or possibility. I couldn’t climb a short flight of stairs without almost collapsing, forget about kickboxing. I no longer had the stamina to play with my children or take care of them the way I was used to doing.

The roles and responsibilities that shored up my identity as a father and caregiver were lost to me. I became dependent on my spouse for care.

Being a caregiver was an important part of the way I understood myself. I was living a life of equality and intimacy which, in my mind, differentiated me from the likes of my father. I was in a relationship based on equality and respect, which separated it from the strange and, at times, perverse union that characterized my parents’ marriage.

My illness advanced to the point where it held me hostage inside my bedroom. I’d fallen down a rabbit hole and the anxiety engendered by having entered this altered reality, the fear of never finding my way out again, was almost too much to bear.

Despair and hopelessness saturated the atmosphere of my life. I began to slowly feel like I was contributing to my partner’s burden as a caregiver.

It was a heartbreaking assemblage: a nefarious combination of feeling like a burden, the psychiatric symptoms of my disease and the inexplicable depression it aroused, and ongoing experiences of medical marginalization that conspired to push me further into the anarchic depths of despair.

Eventually, experimental hyperthermia treatment at a clinic in Germany would help ease some of my symptoms and bring me out of the thickness of hopelessness, but that didn’t happen until midway through autumn 2017, and the preceding two years had been especially trying.

So, on a quiet morning at the end of summer, I tried to take my life

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The following months were months of hardship. Kim managed to hold everyone and everything together, caring for Takoda and our two girls by herself, never once wavering in her support of me—she came to visit me every day I was in the psychiatric unit. I know that time was hard on her.

The revelation that our relationships with others and the meanings we give to the world are vulnerable to collapse at any moment really shook her. But with persistence, courage, an open mind, and inimitable strength, she continued to care for me. She helped pull me through the dimness of my disease.

During this crisis, my experience of relational disability shifted to an intimate first-person perspective. It’s hard to capture how these experiences alter us.

From such depths of pain and suffering I learned how fragile life is in the throes of illness and the crucial parts we play in each other’s lives, the importance of being recognized and listened to by others, and our need for connection.

Through giving and now receiving care, I learned how inevitably dependent we are on each other. As Friedrich Nietzsche recognized, “I doubt that such pain makes us ‘better’; but I know that it makes us more profound.”

The experience opened me up and deepened me in many ways. It gave me a new appreciation for those around me and enhanced my empathy and compassion for other people’s suffering.

A clarifying light was thrown on cultural idealizations of masculinity and the healthy body, forcing me to confront my demand for control and mastery (of myself and sometimes others), alongside my complicity in perpetuating unjust social arrangements through comporting with patriarchal masculine ideals and behaviors.

Perhaps most significantly of all, my feelings of social and self-alienation and experiences of medical mistreatment wrought by a complex and misunderstood illness, alongside those of being cared for by Kim, provoked critical reflection and improved the ways I cared for Takoda.

I was able to map those feelings and experiences on to my interactions with him. I was reminded of how important presence, tactile gentleness, and open-mindedness are to giving care.

I found myself less annoyed by the unpleasant aspects of care work, like changing his dirty diapers. Through caring and being cared for, I learned to change my way of being with others.

I believe nurturing these qualities will continue to make me a more attuned and responsive father, caregiver, and spouse.

[Excerpted with permission from Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities by Aaron J. Jackson, published by the University of California Press. © 2021]

A poignant epilogue to the book tells us that young Takoda died unexpectedly in his sleep in 2019. He was 8 years old.

Click here for more information about the book. You can follow Aaron Jackson on Twitter @Kodacruz.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .