What NMOSD taught me about my expectations versus reality

In the decade that I’ve lived with neuromyelitis optica spectrum disorder (NMOSD), I’ve connected with many other patients who say they’ve had trouble overcoming the heartache of not knowing who will show up for them in times of crisis. It’s easy to recall my similar pain when I’m speaking to the newly diagnosed. I try to be empathetic and a good listener when they share their stories of disappointment.

I’ve always been certain the people in my life love me, yet overcoming my expectations of them has been a profound learning experience. The only person I can control is myself, for one, and that’s important because reality can be vastly different from expectation.

In my mind, I envisioned everyone would come running to my bedside should something happen — as it did with my first NMOSD episode, a transverse myelitis attack that left me with varying degrees of paralysis, from the bra line down, for months. For years, I held a grudge against the people who didn’t show up for me and I’ve worked toward forgiving them, even though they never did anything wrong. I had to accept that we are all human and have limitations.

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Gratitude for support

Since my NMOSD diagnosis, I’ve widened my circle of support to include immediate family, of course, but also the family I’ve chosen, such as some of my closest friends. My daughter, Sophie, calls them aunt and uncle and has done so since she could speak.

At the time of my transverse myelitis attack, I was engaged to Mike, who’s now been my husband for almost 14 years. I didn’t expect his immediate family to show up for me when I was in the hospital, but they did. I’ve always loved his only sister, but she was crucial during that difficult episode, and I’ll never forget her kindness. She was the first to visit every day, on her way to work. She helped me brush my hair and look presentable, and she let me cry with her so others didn’t have to see me that way.

My future mother-in-law, unfortunately, witnessed me pee myself during that time. The next day she returned and discreetly brought me accident-proof underwear. That’s support.

Today, what I share and how I share it is different with each person. I cherish quality over quantity of time and recognize each person’s capacities, choosing to be grateful for what they can give me. I’m no longer a victim of the expectations I put on them.

That’s my advice to other patients: Find gratitude for the text messages, phone calls, or messages on social media because when they’re all combined, it can be just the right amount of support.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.