San Diego, CA
Infected: 1995
Diagnosed: 2013
When you take your partner’s hand in marriage and swear to love this person “in sickness and in health”, no one really expects the sickness part to come first.
Especially when it begins on the honeymoon and you just turned 27.
The sun crested over Mt. Kilauea as Kaitlyn and I drove our Jeep rental up the big island of Hawaii. Just days into the honeymoon, we had that glow about us much like two kids shuffling off to prom: giggling, canoodling, and posing for far too many photos.
Our nostrils flared at the sulfuric smell of volcanic ash and molten lava as we pulled up to Hawai’i Volcanoes National Park and began to explore the area.
My appetite for geology giddied up like a scientist and I pulled Kaitlyn with me to “get a closer look.” But when I walked forward, she tugged backward. With a look on her face that screamed doomsday, she felt intense fatigue, joint pain and mental cloudiness.
Anxiety stiffened her natural mellow posture. This preliminary symptom precipitated into what we eventually discovered to be Lyme Disease: a severely debilitating disease passed on to humans through a tick bite. 300,000 cases are reported each year in the U.S. alone, yet news of the disease rarely makes international headlines. It affects everyone differently, but the most common include crushing fatigue, severe mental cloudiness, migraines, and intense joint pain. After becoming infected, many with the illness struggle to find the energy to do simple tasks like making breakfast.
It’s been ten years since that day on top of Mt. Kilauea. In that time, Lyme Disease took Kaitlyn from running a marathon to riding in a wheelchair to go to the farmer’s market. We’ve hopped around from one doctor to another, integrated a whole new way of living with naturopathic principles, resigned from our teaching jobs, and moved from New York to San Diego.
As of this writing, we’ve just welcomed our first child into the world: a healthy baby boy named Rowan. And life is much much brighter. Our lives are so very different than what we thought they would be when we said “I do”, and, if I am being honest, I wouldn’t change a thing.
Lyme Disease has been the greatest teacher that I wouldn’t wish upon anyone. Yet, it’s opened up doors that have led to deep and meaningful discovery. Through this experience, I’ve grown to learn a bit about what it takes to be a better husband when your spouse depends on you to be the caregiver.
For all of you out there, especially men, who currently play the role of caregiver and strive to be the best spouse for your partner, understand that you’re not alone on your journey.
As I continue to share my story and talk to other men, I am overwhelmed by how many keep their story hidden behind the cloak that “everything is okay” when in actuality they are struggling to find balance between their role as caregiver with other roles such as parent, friend, employee, or business owner.
Men especially struggle to open up and feel the deep pain they carry as a caregiver. I’m grateful to be a source for these men to turn to and help them navigate the many subtle nuances of growing a relationship through chronic illness. Many feel they will be looked at as weak if they are honest about their struggle. Yet, when men learn to release into the unraveling of grief and are held by a supportive community like a men’s circle, we are able to arrive back into our demanding role as caregivers with compassion and light. And that, afterall, is what someone who is struggling with Lyme Disease needs most from their loving partner.
Mark Guay lives in San Diego, CA with his wife, Kaitlyn, and son, Rowan. He co-created the San Diego Lyme Alliance Empowerment Circle which meets online and is open to the public. To learn more about his story and his men’s work, head to markwguay.me.