Being diagnosed with a chronic condition like MS can throw your life plans off course. Grieving the losses and finding ways to move forward is a process.
I recently saw the new apocalyptic thriller “Greenland,” starring Gerard Butler. I’m a sucker for action movies, and this one didn’t disappoint.
The premise? Out of the blue — befuddling scientists and astronomers alike — comes a comet hurtling straight toward Earth, large enough to cause mass extinction.
Butler’s character is immediately thrown into action mode, thinking of questions and trying to come up with good answers: What on Earth (quite literally) is happening? What do I do now? What will happen to me and my family? I was just enjoying a lucrative career as a structural engineer, and now I’m running for my life — I did not see that coming!
While it never appeared in movie theaters and definitely did not feature Gerard Butler, my own end-of-the-world thriller began when I was diagnosed with the chronic condition multiple sclerosis (MS). I’ll point out the obvious metaphor here: MS is the comet, and I am planet Earth. I know this is super self-centered, but just go with it.
I was diagnosed in December 2014, 1 week before Christmas (worst holiday present ever!), and I did not see it coming. To keep up the galactic vernacular, it threw my life — and my family’s life — out of orbit. We had plans and a vision, and those plans were now jacked up.
When chronic illness occurs, soon after the diagnosis, it’s normal to be inundated by questions, worries, and fears about what will happen in the future — to wonder if the future you envisioned is one you should picture anymore.
At the time of my diagnosis, I was 35 years old, and my sons were ages 4 and 1. I was still in the diaper/little kids/sleep-deprived phase of life. Sometimes, parents of young kids feel like they can’t keep their heads above water.
Compounded with a new diagnosis, I felt like I was drowning.
Before I was diagnosed, my husband Ben and I had plans to start trying for a third baby in the new year. Plans are funny. Queue the old joke: “Want to know how to make God laugh? Make plans.” That joke becomes very real and very unfunny the second you receive a chronic diagnosis.
I remember my first neurologist, an extremely knowledgeable, old-school man in the final months of his career. He knew everything, which was helpful to me at first because whatever question I had, he had an answer (as good of an answer as one can come up with for diseases without easy answers and sometimes without answers at all).
“There’s no way to know for sure” was one of his patent answers. My neuro knew a lot, but his bedside manner was lacking. Sometimes he’d have one hand on the door, literally backing up slowly as if to say he’d like for our appointment to end. Not the greatest visits of my life.
Two particularly devastating things stand out to me from our first meeting with him. When he explained exactly what MS lesions were and where they were situated in my brain, I blurted out, half out of shock and half to make a joke, because that’s what some of us do when under stress: “It almost sounds like you’re saying I have brain damage!”
His blunt response: “Yes, precisely.”
When he explained he wanted me to start on disease-modifying therapy (MS never has simple words for things like medicine or drugs, it’s always hyphenated jargon like “disease-modifying therapies”), I asked if it was safe to be pregnant on such treatment. “No” was the answer. My heart sank.
The world seemed to stop, though I know it never does. Mary Oliver, in her poem “Wild Geese,” is quick to remind us that when we despair, “the world goes on.” This is the human experience.
We were faced with a decision: Postpone treatment and try for a baby, thereby leaving my body vulnerable to further attacks, or put off (indefinitely or permanently) our plans for a baby and the family we wanted so badly and treat my body, and hopefully keep it healthy.
How do you make what feels like an impossible choice?
We spent the next few months in a near state of emotional paralysis. I couldn’t make any decision— and I didn’t want to make any decision. I didn’t want to face reality. I didn’t want to think of either less-than-awesome scenario.
We talked and cried until we were talked and cried out. I spent a lot of time staring at spaces on the wall, journaling, envisioning scenarios in my head, imagining a new pregnancy, imagining going blind in my left eye again due to optic neuritis, imagining so many unknowable things.
Ultimately, we decided to treat. We came to a point where we held onto the gratitude for the two healthy boys we already had, two boys who were downright easy to conceive when so many people we knew struggled with infertility and were hurting, desperate for a baby of their own to hold.
It’s at this point that a culture overtaken by toxic positivity may influence someone to think: OK! Onward! We’ve made this decision, and you have two children when some have none. You know, really Captain America my way through this mess.
That wasn’t what I was thinking and that’s not what it felt like.
I know full well that mindset matters. The National Multiple Sclerosis Society acknowledges that living with MS sometimes feels like living with “a never-ending cycle of loss and grief,” and that a positive mindset can help people with MS live better lives.
Living with MS is learning the both/and nature of the world — both being grateful for the things that are good and acknowledging deep hurt and naming emotions when they arise.
There’s no word for mourning the loss of a child you’d only imagined. And again, we cherished and were grateful for the kids we already had. It felt like deciding between two rotten apples. At the end of the day, they’re both rotten. It felt like grief and loss. It was grief and loss.
About a year later, we started the adoption process. If you know anything about adoption, you know there are heaps of children in need of adoption, and that adoption is a precarious business.
My eyes were opened to things I hadn’t realized or considered fully before, and that agencies could be unethical or racist was shocking and new to me. The agency we went with had a great reputation, we felt comfortable with their process and practice, and a good friend’s endorsement felt like extra assurance.
However, after investing what to us wasn’t a small chunk of change as well as hours of weekend training, we felt overwhelmed by all of it, unsettled and unsure. To our agency’s credit, their training was thorough, particularly their training in the area of transracial adoption. We heard the stories of adoptees whose parents had loved them like crazy, and who still experienced harm and trauma.
Furthermore, our hearts broke for all the other attendees in our sessions. We were the only people who already had children. Again, we were struck by the thought that we should just be grateful for the family we already had.
Chronic illness doesn’t really care about your goals, dreams, or ambitions. It is entirely unfeeling, and its objective iciness is wholly indifferent to your emotions. We felt this deeply in both deciding to try for another baby and deciding to pursue adoption.
There are many reasons we stopped the adoption process, all of them important and all of them deeply personal, but the details are for another story. Another loss, more grief.
One weekend, we were at a couples retreat. The weather was beautiful, the campground gorgeous, the company all of our favorite people. We had some downtime and went on a walk.
At some point, I stopped atop a ridge and broke down. Sobbed ugly. Hugged tightly. I felt completely broken. There was catharsis, for sure, a letting out of everything that I had held in for about 2 years, but it hurt badly all the same. Grief is nonlinear, after all.
A while later, I was listening to a story on the radio. Someone explained how grief is a ball in a box. On the side of the box is a button. At first, the ball of grief is BIG. It hits the button and hurts — aches — easy and often.
Over time, the ball gets smaller and hits the button less frequently. It never goes away, just as this imaginary third child we’d always imagined never goes away. I’m relieved to say it is less sharp. I’m grateful for that and the family I have.
A few years ago, I endured the largest MS attack I’ve had so far. What started as a dull ache in my left hip joint and upper femur turned into the most acute pain I’d ever felt. I felt relief only when I was flat on my back.
I couldn’t stand up, walk, or use the restroom. Dignity deflates instantly when lack of bathroom use is in the picture.
It lasted about 6 weeks, and during that time, my husband, mom, and older sister who normally lives in Bali served as my round-the-clock nurses. They’d bring me meals, help me slide down the stairs ever so slowly to make it to appointments, and bring me my face wash and lip gloss so I could feel some semblance of my former self.
They painted my toenails. They changed diapers. It was the most love I’ve ever felt, and it was terrible at the same time.
I remember feeling total assurance that had we had that third baby, or had we adopted, the thought of being out of commission while my husband and other family members took on the sole responsibilities seemed impossible. I felt, though it hurt, that we had made the right decision. I still feel this way.
Life coaches, directors, and self-help books can be a good thing. I sincerely believe that. But sometimes life is so big that no amount of careful planning can prepare you for what’s about to come. It really sucks.
I’m here to say that, ever so slowly, it gets better.
I am grateful for my boys. They’re 11 and 8 now.
As I type this, I’m sitting on the most peaceful deck in beautiful Bar Harbor, Maine. Later today we’ll go hike a mountain or swim in a lake in Acadia National Park. We have plans to scatter my father-in-law’s ashes at his favorite place at sunset. The gift and fragility of life are not lost on me.
As writer Kate Bowler says, “there’s no cure for being human.”
I think I love action movies because they’re so absurd. Comets and asteroids are real. A quick Google search will lead you to NASA’s tracking of a few of them, but they’re all minor. I was stunned when I read that some 17 meteors hit Earth each day without much fuss.
Action movies are all,“Get in the Jeep now! We need to pick up Grandpa and assume control of the spaceship!” They’re comical in their urgency.
I love that combination because that’s what it’s like reflecting on real-life pain induced by chronic illness. Sometimes I think back to my initial diagnosis and I feel acute pain in remembering, as well as the urge to laugh. It’s absurd. The whole thing is absurd.
What else can we do but keep plodding along, dodging the cataclysmic hail of the disaster movies we star in that don’t make it to the big screen?
Some days are panic days. Some are grief days. Sometimes I’m spurred into action. Most days I carry gratitude, hope, and grief, each abstract and slippery in their shapes, as I go along.
Erin Vore is a high school English teacher and Enneagram four who lives in Ohio with her family. When her nose isn’t in a book, she can usually be found hiking with her family, trying to keep her houseplants alive, or painting in her basement. A wannabe comedian, she lives with MS, copes with a whole lot of humor, and hopes to meet Tina Fey one day. You can find her on Twitter or Instagram.