An open letter to my past self, who just received an NMO diagnosis

Dear Past Self,

I know you were blindsided by this diagnosis. You’re justified in feeling that it’s unfair, because it is. No one around you has heard of neuromyelitis optica (NMO), even the doctors treating you, but I promise that everything will be OK.

This is the first time your strength and willpower will be tested. You’ll be tested quite a lot, but you’ll come back fighting every time. It’ll surprise you how resilient and resourceful you really are. I know this isn’t how you wanted to test yourself, but you’re here now. You’ve never been the victim, and you won’t start now.

While your friends are starting careers and families, or living carefree lives like others in their early 20s, you’ll need to focus on yourself. Don’t worry, you’ll have a family and career eventually; it just isn’t your time yet. For now, you’ll have to learn to walk again, which will be difficult. But in the end, you’ll have gained self-awareness that others might never have the opportunity to discover.

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Knowing what you’re truly capable of, your self-awareness, will be your superpower. Later in life, when others ask, “How does she do it all?,” this is how. You’ll have learned how to appreciate the life you were given, and you’ll never waste a minute. A word of advice, though: Only do the things you want, and walk away from things and relationships that take from you. Even if you say no sometimes, you’re still a good person.

It feels hopeless right now, but you’ll smile again. You’ll laugh again. You will carve a path for yourself that gives you fulfillment even with this disease, and when it stops working, you’ll carve a new one.

You’ll have the perfect daughter who’ll make life worth living even more.

Being alone is scary, especially with NMO, but you won’t let that happen. You’ll surround yourself with supportive people, some you haven’t even met yet. And don’t fret — he does love you for the person you are, even if you’re sick and struggling sometimes. Nothing about you has changed, because NMO has probably always been there. The timing isn’t great, with the disease showing up four months before your destination wedding, but you’ll learn that what was meant to be will be.

There will be times when you’ll hate yourself. You’ll look in the mirror and despise the reflection staring back at you. You’ll hate the moon face and want to crawl under the covers for long periods of time. It’s OK to be angry at the needles, the IVs, and all the drugs. As Coldplay’s Chris Martin sings, “Nobody said it was easy.” You’ll lose count of how many times you’ll try to hide your sobs in the shower, the number of invitations you’ll decline because it’s easier to stay home.

Let yourself have those moments, then move on.

Listen, kid, having NMO is a blessing, not a curse. There will be many moments when you disagree, but when you look past the pain, you’ll see all that you’ve gained. Everything happens for a reason, and for you, inspiring others with the same disease is your calling.

Sincerely,

Your Future Self

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 (NMOSD).