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How My Statistically Rare Family Reminds Me I Am Not Defined by Illness

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Chad, my husband, was on vacation last week – we did a staycation. Most of the week, despite me being in pain from a relapse of intracranial hypertension, we managed to do fun things with the kids.

Friday, we went swimming for a bit, then took the kids to play putt putt. By the time I got home, I was exhausted and in so much pain. I went to bed Friday afternoon and didn’t get up until Monday except to go to the bathroom and eat.

I’ve been keeping an ice pack on my head in an effort to try to numb the pain, rotating it from temporal to temporal and then to my neck. When I change positions, my ears pop. The ringing is intense and it never goes away, but the vibrating from my pulse acts like a bass drum mixing with the screech of a microphone too close to the amp.


I’m not sure how my heart is also affected by this, but after two years living with this condition, I know it is. The palpitations beat to their own rhythm, and not in sync with the bass.

I’m tired, but can’t sleep. When I finally drift off, the pain often wakes me in the night or I wake up to toss the now warm ice pack on the floor. The moment I open my eyes in the morning, the headache is right where it was when I left it the night before. I dread moving, getting out of bed, functioning. And then I feel guilty about that. I’m missing life, missing time with my kids.

Suck it up and deal with it, is what I hear in the back of my mind. You’re an adult.

You need to be writing.

You need to be advocating so the kids don’t lose their healthcare. So you don’t lose your healthcare.

You need to fight with the insurance company about the claims you think are wrong.

You need to make these appointments.

I hear it all and roll over. I tell myself just a little more time and it’ll feel better.

It never does.

Make yourself a cup of coffee and take two Tylenol. The neurosurgeon said that may help, I think.

Five more minutes.

The coffee and Tylenol don’t do anything. But it gives me a drink to take the other four medications I need.

Sometimes, I just go back to bed and push the thoughts away.

Other times, like today, I don’t have a choice but to get up. My son, Jonah, had a doctor’s appointment. The old me would have done my hair, put on makeup, tried to look cute. The new me couldn’t care less. Now, it’s an accomplishment if I take my glasses off and wear my contacts. And truth be told, if it weren’t for my non-prescription sunglasses in the car, I probably wouldn’t even bother with the contacts at all. I pulled my hair loosely back hoping it wouldn’t make my headache worse, didn’t put on makeup and grabbed clothes I wore yesterday because they were comfortable.

Typical days include me writing myself notes of things I need to do because I know I will forget them. And then I forget about the notes with the reminders. When I remember, I call the wrong number or type something wrong. (I just had to correct that sentence because it was wrong. Seriously.)

I’ll sit down and tell myself I’m going to do something, but two seconds later, I’ve forgotten what it was I was supposed to do. Like making a reminder. Sometimes, it’ll take me three times of me going through what I’m supposed to be doing, remembering, forgetting, remembering, etc., to just make a note reminding me to do something else. It’s exhausting really. And handwritten notes are no longer enough because they get buried under other notes. Now, I know I need to put everything in my phone. Reminders on when to take my medicine, appointments, notes to myself. But there are times, no matter how often I’ve tried to remember, I even forget to do that. I’ll get an email reminding me about an event, deadline or doctor appointment. I’ll look in my phone to see if I remembered to put it in there, and it’s empty. That causes me to get angry with myself.

You know you have to put everything in there. How could you forget something so important? What if they’d not reminded you?

I’m not someone who forgets things. I used to be able to memorize a number after seeing it once. I didn’t get lost when driving in new cities, let alone ones I’m familiar with (that is happening more and more). I didn’t forget doctor appointments. I can tell you every procedure the kids have had, the year they had it, where it was, who did it and their medication lists from memory. But there are days when that slips.

It’s frustrating to know the real you is in there somewhere, but not be able to find her and to start becoming resigned that she may never return.

As soon as Jonah and I got home, I changed my clothes, took out my contacts and let my hair loose. Slight relief.

I’m going to work from bed, I tell myself. I’m going to be productive today. (Never mind that I was super productive by just leaving my house.)

My back hurts. I think the pillow is causing my pain, so I move it, and the pain gets worse. I put it back, but then I want it gone again. I’m convinced there are no pillows on this earth that could make me comfortable.

I need to get up to get a new ice pack. The walk from the bed to the kitchen takes so much energy. Showering takes hours of recovery, so that’s why I skipped it this morning and suffered through a ponytail. I’m relieved I should be good to not shower for another day or two before Chad starts to give me the side eye. Or should it be stink eye… (I’ve still got my sense of humor.)

Almost a year ago, I had a stent put in my brain (right transverse sinus). I knew there was a chance it wouldn’t relieve my symptoms, but I felt like I had to try it. My neurosurgeon told me if it didn’t work, I could be looking at having a VP shunt put in after a year. I got better for a period of time, and I thought I’d beaten the odds.

A venogram I had a couple of weeks ago showed my stent is still working, but my pressure is clearly high. I’m terrified to have a shunt put in because the stent is working, but it isn’t. Like, it’s doing its job to open the narrowing, but the pressure is still high, so I don’t hold much hope that a shunt will do much. And I keep hoping that cooler weather will once again bring remission like the past two years.

The thought of the pain from an invasive brain surgery is terrifying. What will Chad do about work? How traumatic will that be on my children? When I allow myself to think about that, I always cry. This isn’t the mother I envisioned being for them.

It’s already hard to tell them we can’t do something as a family because I’m too tired or too sick. Or to hear them say, “Oh, we did that last weekend when you were in bed.”

I feel like I’m losing myself, my ability and desire to read a story, to write, my ability to care for myself and them and the ability to be a wife. I’ve seen the stories of other people with this disease who end up divorced, who look like a different person as the result of surgery after surgery, pain medication after pain medication. I hear the stories of people who pass away from the complications of the surgeries, and I have friends who are losing their vision because of it.

I have always told myself I’m the lucky one. I’m not that severe. Maybe that’s partly why, subconsciously, I wrote six books last year. I was trying to prove I wouldn’t become one of those statistics.

But here I am.

This year, I’ve not written a single book. The only thing I can manage are articles here or there.

I’m thankful my husband is devoted and loving, that taking care of his family is what he does best. I hate that my kids have had to struggle with mitochondrial disease, but it’s allowed them to have a special kind of empathy only someone who has experienced chronic pain and illness can offer.

I have so many rare and life-threatening diseases. I joke about statistics. Usually, it’s when a doctor’s telling me a complication is rare, and I put my hand up and stop them. “I’m rare. Just tell me the complications. Don’t tell me the chances of it happening are unlikely because if anyone is gonna have it happen to them, it’s me,” I say.

That has proven true a few times, usually it involves them hitting nerves during procedures. (Fun stuff.)

Know what else, though? It was rare for my entire family to have mitochondrial disease. What would be the chance that Chad and I would have found each other?

Today, in the car on the way home from the doctor, Jonah was super chatty. (I don’t know where he gets that from…*sarcasm*) I mentioned we needed to try this new place to eat that Chad and I went to in Charleston a couple of weeks ago when I was there for that venogram. I was telling him all about the bread they bring and how yummy it is. Jonah is a carb boy.

But he wasn’t completely sold. At some point, he said, “Do you think if I could have had a choice, I would have chosen to be born with sensory issues? Nope. I’m sorry I have them, but I can’t help it.”

I nodded. “I know that.”

Then, he said, “What were the chances you and Daddy would have had a Jonah who didn’t like so many foods?” (He meant this because we eat just about everything.)

I laughed. “I don’t know, Jo, but I do know I wouldn’t trade you for the world. I’ll take you just the way you are with all your quirks, and I’d do it again if given the choice.”

Writing this just made me realize that, while many statistics are stacked against me, against us, our family is so rare. And in this moment, I remember through all the bass and screeching happening in my brain, all the noise and pain that demands so much of my attention, I was chosen to be Jonah’s mom. And Noah’s. And Chad’s wife.

For a minute, through a child’s eyes, I see the girl I sometimes forget I am.

I am not my disabilities. They do not define me.

So, I’m putting that ice pack behind my neck to numb the pain for now. My tears are gone, and a smile has replaced them. In the span of this article, from my bed, I’ve written some words. But more importantly, I found a little piece of myself that was lost.

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Thinkstock photo via Giselleflissak.

Originally published: June 28, 2017
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