When Illness Blindsides Us

This is not the essay I had planned for this week. I planned to share more bits from my memoir draft. But instead illness had another plan in mind. I like to think that I’m partnering with creativity each week, yet I resist partnering with illness.

I had been on my annual summer vacation in Aruba. It was a delightful trip. Time in the sun, walks on the beach, dips in the ocean, books in my hand. It filled me with ease and enjoyment. I let go of the to-do lists and the responsibility and I just existed in a carefree haze, the days blurring together.

However as I returned home, I was surprised to discover that I developed shingles. What I thought was a mosquito bite was actually a shingles rash developing. A frantic trip to urgent care on Thursday morning confirmed my suspicion.

On the heels of a lovely vacation, I felt confused. Blindsided. When I’ve had shingles in the past, both outbreaks occurred during times of significant stress. The first time I was a newlywed and awaiting Match day for my internship. It was probably the most stressed that I had ever been at the time. The second outbreak of shingles was when I was employed at the state prison and required to work for several days without AC in July in Phoenix. This time, however, there was no real stress that I can point to.

When I was given the diagnosis on Thursday, one that I was already expecting because of the shooting pain, I fell apart. My world felt shattered and I moved immediately into pity party mode. A place I try not to visit. Pity parties weren’t available to me as a child. However this time, as a grown adult, a middle aged woman, I decided that I would pout and sulk all day or at least until I felt that I could move on.

My typical response isn’t usually so dramatic. Yet this time, I felt devastated. Like my body has betrayed me. I had a restful vacation and came home to a dirty house, a full inbox, a broken garage, all things that needed my attention. Then add illness to the list. Being sick and impaired was not on the agenda this week. Illness sabotaged me. A sizable wrinkle in my plan. Betrayal, devastation, sabotage swirl around me. I can’t seem to feel a different way about it. Not this time.

I was eager to return home to my routine. To get back to the normal rhythm of life. I was itching to write again and be with my community. Instead, I lost my morning to doctor visits and pharmacy pickups. With the medications on board, my only choice was to cancel my day and rest.

I felt demoralized and my hopes deflated. I collapsed on the couch in defeat. My return home was not going as I planned. And here’s the thing - I am not a stranger to illness, to being sick. I am not a stranger to having my capacity impaired. Since I was a young child, I have encountered numerous health problems and chronic conditions. This isn’t my first rodeo.

This time I felt blindsided. In the most recent months, I have felt the best of my life. No longer riddled with chronic exhaustion, I have had energy. I have been sleeping the best. And now in a single moment, I am inflicted with excruciating pain. The burning pain that nags all day and if I move, the zaps of nerve pain. Chronic pain all over again. While it is still defined as “acute pain” at this point, it feels chronic. A reminder of all that I have survived. The chronic pain of my 20s and 30s. The Hashimoto’s disease. The endometriosis and chronic pelvic pain. The Mast cell activation syndrome. The migraines and sinus infections. A reminder me of all that I have endured. And yet….here we are. Something was amiss under the surface and I didn’t see it coming.

I feel devastated because I experience it as a setback. Like the good health I was experiencing has been taken away. There’s nothing like a case of shingles to ruin the post-vacation glow. To snap me back to the harsh reality of life. To the uncertainty of being a human.

Maybe for someone else this would be a straight-forward illness. A practical matter. Take the medication, feel better in a few weeks. But for me, there are many layers of significance. Layers of meaning that I am looking through. Layers that I am working through. I have spent my life trapped in a sick, infirmed body. I live a life where I always have to consider “Do I have the capacity for this?” I would like a new identity at this point.

I know that we are not guaranteed good health. That we can do all the “right” things and our health can still go sideways. That our bodies aren’t vending machines, good things in, good things out. I know my body is not a machine. I know that despite my best efforts, that things can go wrong, that good health behaviors do not guarantee good outcomes. That healthy people still get sick. And yet…I still feel blindsided. I still feel confused. Why did this happen? Why now? What did I miss? Were there warning signs? It’s a puzzle that I am not able to solve.

Each time I am throttled by a flare or an unexpected virus, I feel so alone. Trapped in my own personal hell. Cut off from others. While the rest of the world continues with its plans, I am sidelined. Being sick feels lonely to me. I am in it by myself. Yes, I may have support around me, but the experience of being ill, being impaired, is mine and mine alone.

It reminds me of how vulnerable I am. How fragile my health feels. How fragile life itself feels. My armor drops and I feel exposed. Exposed for who I am. For someone I don’t want to be. Someone who frequently gets ill. My weakness is on full display for all to see.

I am reminded that my body is what makes me the most human. If you live with a chronic condition of any type, then you know what I’m talking about. You make plans but your body calls the shots. It may have something else in mind. You can listen and adapt, compromise and rest OR you can push ahead and pay the consequences.

For most of my life, I lived out of harmony with my body. I pushed it like it was a machine. I ignored the signs. I didn’t listen. Instead I barreled ahead, consequences be damned. In my family of origin, I was not encouraged to listen and notice. Instead, I was raised to ignore my body and to treat it like something I could force into submission and overcome. I lived divorced from my body and her wisdom.

I know vulnerability can lead to connection. When we let our vulnerability show, it lets others reach us. It becomes a place of communion. And yet…my vulnerability in this moment ushers in grief. I am grieving this setback. Grieving the significance of having shingles once again. Grieving the implications. Grieving that what I thought was good health was actually an illusion, the illusion shattered.

Once again I am at the threshold of grief. She is calling me in and I am resisting. I don’t want to enter in, so I skirt around the entrance. I have grieved enough over the past 5 years. Loss after loss. I have been cracked open by grief and knit back together. I do not want to be here again. I want to deny this experience, but here we are. I do not think running away is an option. I am invited by grief to dance one more time. Maybe it can be a slow dance where I rest my weary head on her shoulders and am held in her tender embrace.

Now I pause (reluctantly in moments). I rest because I know that’s what my body needs to heal. I surrender even though it’s hard for me to do. I have resigned, once again, to let myself move slowly through this. I throw out the to-do list. To cancel the plans. To take my time. Pay attention. Honor my needs. Make space for grief. No matter how long it takes. Yes it’s disappointing and it feels like giving in. Surrender sometimes looks like that. But I now hold the knowledge that gentleness is healing.

For now, I’ll be resting, hoping that this is just a blip and not a full detour.

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