My Life on Chronic Illness

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By Suzanne Burden | Twitter: @suzanneburden

There are days I feel completely irrelevant and invisible to the world.

“You look good,” others often say, trying to be helpful.

I am not good, a voice on the inside sometimes eeks. I am fighting the battle of my life to be able to do normal things. I want to work and love and serve and be wildly passionate about something and go after it. But my wild, insane passion is directed like a laser beam toward recovery.

“Most people would never do what you have done to get well,” my therapist reminds me. But there is no award for bravery here.

Just a hope that I will overcome. There’s a hope I will help others recovering, too, and that I will find belonging each day, however rugged that search has become.

The battle to save my life and my brain from late-stage neurological Lyme disease has been terrifying and long. It has been two years since diagnosis, but I was sick long before that. Sometimes I forget what it was like to live in the flow of life: friends, family gatherings, writing that thrilled me, preaching, speaking, providing soul care, embracing the next challenge.

At various times in the last few years, I could have been classified with all kinds of brain and bodily dysfunction, and sometimes I was. The results of early attempts at treatment were horrifying and perplexing. We considered putting me into a nursing home, but feared what would happen if we did.

​I now know the sources of these symptoms: Lyme and its many co-infections. I have developed a will of steel in the effort to avoid harmful medical procedures and call my own shots, using the therapies I intuitively know will help with what is happening in my mind, body, and spirit.

Early on in my illness, I was so alone in my suffering and in such neurological and physical pain as I lay mostly bedridden, that I would go down the list of people to call on my phone, one right after another, hoping someone would answer. Texting was not easy for me, and so I rarely communicated with friends this way. I cried almost daily, and I longed for God to take my life. The pain was too excruciating; the potential answers too elusive.

I belonged nowhere, or so my mind told me, addled by a dizzying neurological hell. And so I had to change my mind—literally. I longed to believe in the deepest parts of me that I belong anywhere. This rugged dream is coming true, one hard-fought day at a time. I am retraining my brain through strong boundaries and daily affirmations and meditative prayer, therapy and EMDR—and in the process, my body and spirit, too.

So it was that two nights ago we held a BBQ where I facilitated a discussion of the Enneagram among ten friends. I was in the flow, including everyone, laughing, enjoying the discovery we are all on, individually and collectively. It felt like the old me, and for a minute, I forgot my daily realities.

Without a transition for my neurological system, like a walk or yoga, I went to bed, shaking internally from overstimulation. I fell asleep at 3am by using a machine that slowly leads the brain into slumber.

I paid for my “normal.” I will pay that price again, and the next time around. I will cope by telling myself I can process the excitement tomorrow, that I have the power to do things that will bring my neurology into alignment. Those precious moments on the patio reminded me that I belong anywhere, and that every single person around that table does, too. It is balanced by the reality that I belong today as well, even as most people are doing all of the things they love with friends and family.

For now, I will shut off my computer. I will lay down in a dark room and rest. And I will set my mind like flint on the face of a loving Jesus who embraces me in the darkness. I talk to him out loud in all this silence, and I feel and recognize the quiet way he listens, approving and loving.

About Suzanne:

Suzanne Burden served as a writer, speaker, and pastor before neurological Lyme disease disabled her in 2017. She has been fighting her way to health, one treatment and discovery at a time. Suzanne is the coauthor of Reclaiming Eve and can be found at suzanneburden.com.

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