The Awesome Sacrifice of a Lyme Warrior’s Caregiver

The Power of Grief

“A central process in grieving is the attempt to reaffirm or reconstruct a world of meaning that has been challenged by loss.” -Robert A. Niemeyer

When I was first diagnosed with Lyme disease, back in 2017, my husband wasn’t my husband yet. He was my boyfriend of five years. For two-and-a-half years, the fear that he may leave me never stopped whispering in the back of my mind. To this day I am in awe of his unrelenting support of me through my long battle. His awesome sacrifice will resonate in my heart with gratitude for the rest of our lives together.

In honor of Lyme disease awareness month, I asked my husband to share with me some of what he experienced during the years that he was my caregiver. He was hesitant at first, to dive back into those wretched days, but once prompted, a release of emotion spewed forth. I’d like to share it with you now. I have edited what he said very little, instead choosing to present it to you as the stream of consciousness that tumbled out of his mouth.

The Awesome Sacrifice of a Lyme Warrior’s Caregiver

“The overwhelming feeling from that era is one of powerlessness. There’s no making it better, no making you feel better. Perseverance. Perseverance is the solution. One day at a time. Support, consistency, routine.

“I took that one photo of you, of you laying there. That is what I remember of that era, that represents those long months. It was sad. It was hard to see you like that.

“It was really frustrating the lack of quality information. Even with the doctors help there was  a void of available, common sense, best practice. It was frustrating.

“I think there were times where I just felt like it might not end. It might not end. And, I always had faith in you and you never wavered, but I worried that it was a permanent cycle. It seemed permanent at times.

“It was isolating. It felt lonely at times. Just kind of missing your partner but it was more than that. We missed social events, birthdays, parties. Eventually you stop getting invited.

“It had lasting effects on our relationship. There was a distance between us that developed at that time because it seemed like you were on a mission. We both ended up on almost separate paths of hardships. It was a long challenging experience. We both had to face a lot during that time. 2 ½ years of challenge. Despite sharing it there was a solo aspect to it. I still don’t look at it like we fought the same battle together. More like individual battles with the same goal. The same war with a vastly different set of circumstances.

“It was fucking long, taxing in so many emotional and mental ways. I remember one day when your mom was here and we drove to Eureka. You were already really sick and we were only a few weeks in. It was an eye opening experience of what the future would hold. I didn’t know what it was going to be like. Can we go fishing? Can we go to the movies? What’s this going to be like? How will you feel? It was apparent immediately that road trips are off the agenda. What was our life, steps down and steps down. Realizing limitations. Special events, date nights. I was trying for you.

“I remember you deciding that the bed was more comfortable for you than the couch and it was like you moved out of our house and into your room.

“Some positives though, coming around the corner. Eventually optimism crept up. But there were ups and downs. Every time you started feeling better you would switch drugs and a new down would begin. There was no knowing when it would end. The most definitive marker, milestone, was the disappearance of symptoms. It was hard to know what symptoms had receded. I forgot about the individual symptoms. All I focused on was how bad you felt all the time.

“Sense of empathy, hard to watch that. I started to mourn our old life and relationship. There were things missing. It took time for us to bounce back and find our way back to each other. Hard to have fun. To be funny, laugh, let go. It seemed so serious and damaging.

“Life seems less frivolous now. It’s a reality check that you shouldn’t take health for granted. That has made me more conservative with risk. I was definitely scared for you. That your health would deteriorate, not improve. I was scared that we might not be able to complete treatment. I wasn’t certain we were going to finish. It was out of my hands. The lack of control made me uncomfortable. It was hard to keep being the cheerleader. It set up its own set of challenges.

“I just took it one day at a time. An attempt to keep advancing the ball. It was something of a marathon. One foot in front of the other attitude. A soldiering stance. That was my mindset. Obstinacy, determination.

“I reflected along the way of how I wanted to be perceived afterwards. I knew that it wasn’t about me and the best thing to do was to be reliable and strong. Soldier on. And it never occurred to me to leave or stop or abandon that goal. It was never an option for me.”

An Ode to Lyme Warrior’s Caregivers

During this month of awareness I have written about diarrhea, Lyme rage and PTSD caused by the horrific days of treating Lyme. But now, it’s important to me to give a huge shout-out to the caregivers. The awesome sacrifice of a Lyme warrior’s caregiver is inspiring and selfless. So, in homage to all of you who have watched your loved one ravaged by this disease and loyally and unflinchingly stood by, I offer you this:

You were my sunshine

You were my hope

You were the pillow that propped me up

You concealed your fear

You never cowered

You led me through the abyss with grace and power

You woke me every day

With a courage that never waned

And a gentle nudge that kept hopelessness at bay

You held my hand on the toilet

You brushed away my tears

And together we plod through the years.

We suffered together

We cried together

And we celebrated each little win together

When I was too weak

And everything seemed bleak

You reminded me that I was a warrior

Thank you my love,

For you were a warrior too

Don’t forget to care for yourselves

In the midst of my battle I never truly stopped to think about the impact my health was having on Will. It wasn’t until I started to heal that I realized what a toll it must have taken on him. For those of you caring for someone in the midst of their Lyme battle, don’t forget to take care of yourselves too. Take a hot bath, write in a journal and take a day off every once and a while. I commend and honor all of you for your awesome sacrifice. Some day, your loved one will be better.