Finding Your Range podcast interview with Jeannie Di Bon

Please enjoy my interview with Jeannie Di Bon about living with mast cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), and dysautonomia. In this episode, I explain how I’ve been suffering from these conditions literally since birth, even though I didn’t get diagnosed until age 29. I also share my tips for living with chronic illness, joy of dog agility, and hopes for MCAS, EDS, and dysautonomia patients.

In a world that generally doesn’t understand the challenges and limitations of hypermobility, I have appreciated Jeannie Di Bon’s exercise videos for years. Jeannie herself lives with MCAS and EDS. I believe we need more practitioners and therapists, like Jeannie, who truly understand these diseases and advocate for patients. Learn more about Jeannie Di Bon.

Beware of mast sails

I am terrified of sailboats. When I first heard the term “mast cell,” I immediately thought of a sailboat mast and shuddered.

Lake life is arguably the best part of Minnesota summers. Like many Minnesotans, I started swimming lessons as an infant and fishing as soon as I could hold onto a rod. I love motorboats, canoes, and kayaks.

But sailboats give me panic attacks.

Growing up, my family rented a cabin on a lake every summer. The water toys were always a determining factor in our selection process. When I was 10 years old, my mom picked a resort that offered Sunfish sailboat rentals and lessons–a seemingly idyllic family bonding experience.

On the morning of our lesson, the Sunfish looked deceiving cute bobbing near the dock, waving their bright, striped sails. My dad and younger brother selected a red boat, while my mom and I picked a yellow boat. As our instructor began rattling off sailing terms and warnings from his own boat, I was relieved to be paired with my mom, the more cautious parent.

We aimed our bows towards the middle of the lake and the wind whipped the boats to life. Our sails thrashed side to side, threatening to decapitate us. I slid aboard into the safety of the footwell, where I intended to remain the entire lesson. As my mom fought the sail into submission, the thick metal boom swung unpredictably above my head. When had inner tubes lost their novelty?

Somehow, all three boats made it to the center of the lake. My eyes were mostly closed. The instructor announced, “Now we are going to capsize our boats.”

I had not yet learned the swear words necessary to adequately express my shock.

The instructor attempted to explain how getting over the fear of tipping and learning how to right the boat is the first step in sailing. He showed us how to stand on the deck, grab the mast, and pull it over the side using the weight of your body. So basically, fall into the water with a boat on your head.

I looked at our row of cabins, small like my brother’s Legos, lining the shore.

“I’m out of here,” I yelled, stood up, and jumped ship.

Luckily, I was wearing a life vest, because my fear of the sailboat somehow outweighed my fear of drowning. I doggy paddled for 40 minutes back to beach, only looking back once. To my horror, I saw my mom dangling from the top of mast like a monkey. Apparently, she didn’t have enough weight to capsize or right the boat alone. Back at the cabin, she blamed me for this, but it only further validated my fear.

*****

When I was diagnosed with mast cell disease, suddenly everything seemed dangerous. My body no longer could discern real threats from healthy pleasures like sunshine, exercise, and joy. Faint fragrances on friends and family became one-way tickets to the emergency room. My own home wasn’t safe enough to coax my body out of fight or flight.

Even the path to healing was dangerous. I never knew if a new food or medication would cut off my vision or inflame my joints so badly that I couldn’t walk. Every mast cell disease patient is different, so there was no guide for cautious treatment. Many doctors refused to treat me because the unpredictability of the disease scared them. However, I knew if I didn’t overcome my fears, I never would get better.

*****

A few days after my “flight” from the sailboat, my dad approached me, “Can I take you out for a very calm ride on the sailboat? We won’t tip and we can stop any time. I promise.”

My thoughts on the sailboat hadn’t changed, but I knew my dad sincerely wanted me to have a good experience. Plus, he actually passed the first sailing lesson, unlike my mom. I reclaimed my place at the bottom of the footwell, while my dad sat confidently behind me with a rope in one hand and the tiller in the other. I gritted my teeth as light wind gently propelled us to the middle of the lake.

“Okay, we’re going to turn. Watch your head,” my dad informed me. I couldn’t physically get my head any lower than it already was, but I appreciated the narration. My dad smiled at me, “See this isn’t so bad.”

It wasn’t bad. If I hadn’t been bracing for death, it may have actually been tranquil. We glided back and forth across the lake for a tolerable amount of time before returning to the dock. My dad steadied the hull and the sail, as I jumped into the water with glee. My mom was proudly waiting for me on the shore. I stood up in waist deep water to shout how brave I’d been.

That’s when my dad lost control of the metal boom, and it blasted me in the back of the head, knocking me out in the water. Luckily, I was wearing a life vest.

My parents no longer ask me to go sailing.

*****

Mast cell disease has taught me healing is not linear and it takes an incredible amount of bravery. Healing is hard, slow, and can even feel counterintuitive. However, you’re allowed to go at your own pace. You’re allowed to declare you’re fucking done with sailboats, or whatever hurt you. Just look for the next tiny step and no matter what happens, know that you are braver than you think.

Remember me after COVID-19

Dear non-disabled friends, family, and co-workers,

We need to have this talk while your emotions are still raw – while you’re restless and missing your old life; while you’re anxious about your finances; while you’re worried you might die.

This pandemic has been challenging for me, but not in the ways that it is challenging for you. In many ways, I am actually thriving. For the first time in four years, my job is now accessible. My co-workers don’t forget to include me in staff meetings and I don’t have to worry about life-threatening allergic reactions. Without a commute, I finally have enough energy to make dinner every day. My body no longer screams at night.

Many stores that were previously inaccessible to me are now offering curbside pickup and free shipping. Grocers are offering special hours and facilitating social distancing, so I can shop safely. Even my doctor is offering telemedicine. The masks I wear in public are cool now.

The outreach and support I’m receiving is phenomenal. Every day, multiple friends and acquaintances offer their help. They ask me how I am doing and what I’ve been up to. Community members set up a Facebook group to help neighbors like me with errands. Organizations are offering free food, online courses, and mental health resources.

So why I am boiling with resentment?

Because your entire life has changed for the worse and you want to talk about it. You want to vent about the challenges of self-isolation and the fear of illness. You’re struggling to adapt to the uncertainty.

All of your feelings are valid.

But so were mine.

Five years ago, my life was similarly turned upside down by illness. I became confined to about 10 buildings due to severe reactions to fragrances and other chemicals. In other words, no shopping malls, air travel, or dinners with friends.

When I got a disability parking permit, one friend suggested I take advantage of all the places with tough parking. What I really wanted was for her to visit or at least call, but she never did. If she had, she would have realized I could barely walk. I lost many friends because they thought my lifestyle was a choice.

While medical debt threatened my financial stability, I almost lost my job too. My office was not safe, but my manager (at the time) told me working from home wasn’t feasible. After months of stressful HR meetings and medical documentation, I convinced my manager to allow me to work from home one day per week, even though I needed more. It has not caused any performance issues in the past four years.

I will never forget my first birthday in isolation, the year I didn’t receive a single card and no one visited. When I needed support the most, people forgot me. People argued that if I wanted to be included I would need to lower my accommodation expectations. Sometimes it’s just easier to spend Christmas alone.

This pandemic not only validated my grief, but confirmed that I’ve been unnecessarily suffering, because people were unwilling to adapt. 

I finally feel like I belong in society, and I fear that will be taken away. I feel an urgency to share my story and build empathy. My body depends on it.

How can we use these terrible experiences to build a kinder world together?

I know we are capable.