“There’s an unfinished plastered over patch of wall in the girl’s bedroom that mocks me. It’s from some work we had done last year where I breezily said to the wanting-to-go-home contractor, ‘oh sure, I can take care of that!’ Easy-peasy-lemon-squeezy.
It’s still there.
Every time I see it I hate myself a little more. For the first few months, when I walked by, my inner voice would unleash a scathing monologue on my inadequacies as a housekeeper and mother and general human being. Eventually even my inner voice got tired, and now it just tsk-tsks at me daily when I pass, head hung in defeat.
But then I took a week off from work, and everything was going to change. Usually I would be full of time-off dreams and resolutions: I will clean! I will exercise! I will cook! I will wear pants most days! But not this vacation. This vacation I only had one:
I will fix the wall.
Instead, I got sick.
It started with the flu–or so I thought–fever and body aches and a sense of impending doom so bad that I sat on the couch wrapped in blankets and wept. I tried to rest (ha!) and figured it would go away on its own. It didn’t, and soon I had nerve pain in my hands and feet that was so terrible it took my breath away. ‘You should go to the doctor,’ my husband said.
‘WE’VE GOT TIME!’ I yelled back.
It became my mantra. We’ve got time.
But time went by, and I stayed sick, so much that I had started to pray a little, asking God/Mary/Mom (this is how I pray these days, a spiritual catch-all offered up to God, Mary, and my recently-deceased mother) to give me a sign that everything would be okay. God/Mary/Mom responded by making a dead monarch butterfly fall out of the sky in front of us as I finally walked myself into my doctor’s office.
‘This is not good,’ said the voice.
On the way home, after plenty of blood tests and no answers, the radio played Glenn Frye’s ‘The Heat is On’ and my fever pulsed along to the beat. We followed a company van with a skull and crossbones painted on the back. ‘That’s enough with the signs, you guys,’ I told God/Mary/Mom, and when we got home I laid on the floor. The baby asked for milk, and I said ‘in a minute baby. We’ve got time.’
But we didn’t. My doctor called shortly after. My white blood cell count was too low, she said. ‘You need to go to the hospital right now,’ and I burst into tears in front of God/Mary/Mom and all of my kids.
At the hospital there are perks to having a low white blood cell count and being highly infect-able (not a word, but should be). They don’t make you wait in the waiting room with all the sickos and you are pretty much guaranteed a private room. I sat in my private room while doctors and nurses paraded in and out, running more and more tests and becoming more and more agitated.
‘I have this terrible pain in my feet,’ I said to one doctor, who was getting kind of desperate.
‘Let me see them,’ he answered, and I warned him that it had been a while since my last pedicure and they were kind of gross.
‘I’ve seen it all,’ he reassured me, and I took my socks off.
‘You’re right. They ARE gross.’
The voice, which had been quiet for a while, laughed. I did too.
Later he poked me so hard in the belly that I grimaced, so he declared I must have an abdominal infection and sent me off for a cat scan. There was no abdominal infection.
My chest x-rays was suspicious and needed to be redone because the radiologist was convinced I had a foreign body implanted into my rib. It was the snap from my hospital gown.
When I had had enough radiation to emit a soft glow and we still had no answers, I was admitted. They pumped me full of IV antibiotics and fluids and when I was comfy and beeping from places I didn’t know could beep, they sent her in.
She was a hematologist/oncologist (blood/cancer doc, she said, when I looked at her wide-eyed and uncomprehending) and young and cute, right down to her high heeled shoes, which made me feel extra ugly in my ratty gown and two-days-old makeup.
She talked for a while but I stopped listening after she said cancer, the breath stuck in my throat. This wasn’t an answer or a diagnosis, I heard her say. Just a conversation that needed to happen, because the more things we ruled out the better chance it was cancer.
I stared at her heels. “So that just happens?” I asked her, when she finished. “People just get leukemia? At 36?”
She nodded slow. “It happens.”
When she left I started to google ‘survival rates of blood cancers,’ on my phone but I couldn’t really see well because my eyes were tear-y and I had left the overhead lights off all day because MY SELF ESTEEM CAN ONLY TAKE SO MUCH. I put my phone down and laughed at how stupid I was just a few days before when my husband had tried to talk to me about the life insurance we finally got around to getting which led to talking about death and I had handed him the baby and a fresh diaper and told him we’d talk later, when we had more time.
Oh God/Mary/Mom, I thought.
What if I was wrong?
What if there wasn’t time?
Would the baby even remember me?
‘I’m pretty familiar with how much it sucks to not have a Mom,’ I prayed out loud, side-eyeing all three of them. ‘Let’s not do that to these guys. Not now.’
Later, cancer/blood doc came back with her boss. He made eye contact and was wearing sensible shoes and I loved him instantly. He told me that I was being released. Something was working, my white blood cell count had started to rebound. ‘So…,’ I started, afraid to ask the obvious. ‘It’s not leukemia?’
‘Go home,’ he said. ‘Get some rest. We will answer that question in a few days. I’ll make you an appointment at the Cancer Center.’
And so I left the next day, arms bruised in all the places they stuck me with needles. ‘Can I drive myself home?’ I asked my nurse Desiree as she wheeled me out.
She didn’t know, she said, no one had ever done that before.
‘Well then I’m gonna be your first,’ I told her, and she wheeled me to the door and I got up and walked to my car and drove away. I drove myself to my Cancer Center appointment too, where I was sitting, waiting to be seen, when my doctor’s office called. My Lyme disease test had come back positive, they said, and I wept with relief. Lyme is a serious disease, but it’s manageable. I believed then that this was a gift. I still do.
I found out later that Lyme is known as the ‘great imitator’ because it is good at presenting as other things: the flu, even cancer. There are stories of people being diagnosed with schizophrenia only to later find out it was Lyme. It’s scary, yes, but that is why I’m telling you this, because so many of us (myself included, up until it happened to me) don’t know what to look for.
Also, there are things that we can do. Wear insect repellent with deet when you are outdoors. Wear long pants. Check your skin regularly. Get educated and advocate for yourself. And most importantly, if you or someone you love has flu-like symptoms that don’t go away and especially if they present with debilitating nerve or joint pain, ask for a Lyme test. It’s simple and inexpensive and can save you and your loved ones a lot of heartache.
And while I still have some days where I’m not 100%, for the most part I am good. We caught it early (that cocktail of antibiotics was a godsend, even though they didn’t know then what they were treating.) I continued treatment (more antibiotics) and see my doctor regularly and it’s all good. I’m mostly fine. I’m still here.
For those of you keeping track, the plaster spot is still there too. I went right up to it that day, the day I got my diagnosis, when the house was still empty and the kids were still at school. I put my hand against the plaster, closed my eyes, and felt the hard edges that I hadn’t sanded yet.
It’s kind of grown on me, I thought. Maybe I’ll just leave it there.
I waited, bristling, for a scolding from my inner voice.
‘Eh,’ she said softly. ‘We’ve got time.'”
Read other inspiring stories of living with chronic illness here:
‘When you see me in a handicapped parking spot, you roll your eyes. My husband explains, ‘She doesn’t get better from this. She ultimately dies from it.’: Woman with multiple chronic illnesses urges ‘not all disabilities are visible’
‘I’m often mistaken for being lazy or spoiled. The dirty looks I get would shock you. I may look like a typical 23-year-old, but I’m not.’: Woman with multiple ‘invisible’ chronic illnesses refuses to let struggles ‘overcome her joy’
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