ten years of multiple sclerosis

Ten years ago today, I was discharged from a Boston hospital and officially received my MS diagnosis. My husband Scott and I left the doctor’s suburban Boston area office and drove directly to Firefly’s, which served our son Casey’s favorite BBQ. It was his 13th birthday and we wanted him to bring him some of his beloved dishes because we NEEDED to celebrate.

Let me back up a bit and set the stage …

In the preceding week, my family of five had taken a much-needed trip to Los Angeles. It had been four months since my 65-year-old mother had died from a fast-moving cancer. It had been a couple weeks since my 67-year-old father was admitted to the hospital and then to a rehab center to regain his strength. It’d been weeks since my young nephew had been treated and released from Boston Children’s Hospital after what was believed to have been a pancreatitis attack. It hadn’t been very fun around my house. We wanted to flee Massachusetts, so we sought a journey to the land of make-believe, hoping to outrun our bad luck.

Ha, said fate.

On the first morning in our Air-BNB, I received a stilted phone call from my Boston-based neurologist. The MRI I’d had of my brain weeks earlier — the one about whose results I’d been hounding the neurologist’s staff for in the days leading up to the trip — showed I had new lesions and a couple of them were actively inflamed. The doc wanted me to see him immediately. Irritated, because this was the exact situation I’d been trying to avoid, I told him we were in LA for 10 days. He scheduled an appointment for the Tuesday after we returned home. He never officially said I had MS, never told me to avoid heat or humidity, and didn’t give me any advice for how to proceed until I got home. He must’ve thought it was evident that the presence of multiple lesions meant I had MS, but Scott and I decided, since we were in the land of make-believe we were going to make believe this call never happened.

Until the Hollywood Bowl. As comedian Jack Black took the stage to emcee a pops performance of music from Pixar films at the famed outdoor venue, the days spent in hot and humid conditions caught up with me. I became violently ill. Not only was I sick to my stomach, but I was dizzy, weak, saw flashing lights in the periphery of my vision, and couldn’t really walk. Since we were seated at the top level of the facility, staffers had to locate a wheelchair and in order to take me down to the medical station on the ground floor. My then-15-year-old twins — eyes wide with worry — “watched” over me while Scott and Casey, then-12, ran to fetch our rented vehicle. They arrived just as fireworks were being detonated in thunderous fashion, the explosions echoing against the walls, creating an ominous, end-of-the-world-like soundtrack.

Weakened, I spent the next day resting, but rallied to attend an evening Anaheim Angels’ game for which we already had tickets. Scott and I pretended the whole thing was either food poisoning or a result of me accidentally eating something that didn’t agree with my dairy allergy. In the ensuing days, we went to see the famed British football team Manchester United play the LA Galaxy at the Rose Bowl, goofed around in Madame Tussauds‘ wax museum, and visited the Ronald Reagan presidential library in Simi Valley.

On the day we were supposed to return to reality in Boston, I experienced an attack like the one at the Hollywood Bowl. Only worse. I was again sick to my stomach. Again, I was weak and could barely walk. My daughter said I was lying on the floor and so out of it that it seemed like I was drugged. The fact that our rented Santa Monica bungalow had no AC and that my damaged brain — which MS had rendered incapable of handling heat and humidity — couldn’t handle the weather never occurred to us. Then again, in that moment, I couldn’t hold a cogent thought in my head as my family packed up the Air-BNB and Scott called my neurologist to get some medication so I could board a plane back to Boston.

Two days later, on a Sunday, I woke in my own bedroom to a third attack worse than the preceding two. I couldn’t stop vomiting. I was weak. I couldn’t walk. I saw stars in my eyes. Nine-one-one was called. I was transported from a small local hospital then transferred to a large Boston facility where my doctor worked. I kept trying to get the neurologists at the hospital to contact their colleague, the one who called me that first morning in LA. But they didn’t. And I didn’t receive any treatment to stop the attack — which would’ve been IV steroids, something I received the following week.

On that Tuesday morning, Casey’s 13th birthday, I was released from the hospital and went straight to the neurologist’s office, just outside of Boston. It was there where he looked surprised when I asked him if I had MS. Clearly, he thought it should’ve been obvious that I did. He told me we had to decide what kind of medicine I’d take to try and slow down the disease progression but, in the meantime, we scheduled another MRI, which would show the presence of even more angry and inflamed lesions that would lead to three days of outpatient, steroid IV treatment. Scott and I left the neurologist’s appointment facing a new and uncertain landscape. But we had one immediate concern: Casey’s birthday.

Since my hospitalization, our dear friend Gretchen had been taking our three kids out, feeding them, and even brought the twins shopping so we’d have gifts to give Casey. Gretchen also pulled together the ingredients for Casey’s favorite birthday dessert, the lava cake similar to the one The Rainforest Cafe used to serve, only much sloppier. While Gretchen had the gifts and dessert all ready for us when we got home, Scott and I ordered barbecue from the car. Casey, who’d spent his 13th birthday hanging with Gretchen’s younger son, was thrilled with his presents, with the BBQ, and with the cake, and declared it the “best birthday ever.”

Now, that kid is 23. And he’s riding in a Bike MS event in Maine. He’s trying to raise money for the National Multiple Sclerosis Society — for which I serve on as a trustee on my local board and as a volunteer advocate. It’s an organization which has financially supported nearly every new development in the MS field. On his fundraising page, Casey wrote that he’s participating in the Great Maine Getaway because he is “inspired by my mother’s courageous battle with multiple sclerosis.” He added, “Throughout her life, she has not only navigated the challenges of MS but has also become a beacon of strength and education within our community.” He also said a bunch of other really nice things about his old mom. *Blushing.*

I’m proud of him, as well as of my nearly-26-year-old son Jonah, and my husband Scott, who are participating in their second Bike MS event together. But since my diagnosis date is so closely tied to Casey’s birthday, I’m plugging his donation page. If you have someone in your life who struggles with MS, if you’d like to see a world without MS, please consider contributing to Casey’s bike ride.

It’s been 10 years. My symptoms may have worsened but my hope has not dimmed.

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