Guest Voice: An open letter to MS about snowflakes that meet chameleons

Dear multiple sclerosis (MS):

I never asked for you. You arrived quietly, starting when I was 17.

It wasn’t like a storm at first. You were more like a snowflake: small, unique, and almost easy to dismiss. They call you a “snowflake disease,” and my condition is definitely one of a kind. No two cases are ever the same, nor are any two stories identical, including mine.

But snowflakes collect, and what looks delicate can still change the entire landscape.

You brought loss, MS: loss of balance, loss of certainty, and sometimes even memory loss as pieces of my story slipped through my fingers.

You also brought loneliness — the kind that makes you feel alone while sitting in a crowded room. No one understands pain the way I feel it, or the fear when my legs won’t move. The extreme numbness I experience daily, which is heavy and constant, makes it like my legs don’t even belong to me.

Recommended Reading

July 6, 2016 News by Patricia Silva, PhD

MS Takes a Toll on Caregivers, Too, Especially on Their Mental Health

People don’t understand the blurriness that clouds my sight and my future at the same time, or the humiliation of bladder issues I’m too embarrassed to explain. They don’t understand the quiet heartbreak of needing to use a cane, and then a wheelchair, when I just want to walk freely like I used to.

Sometimes I feel helpless. Sometimes I miss my independence so deeply it aches. I miss the freedom to move without thinking, to trust my body, and to just be me without having to calculate every step.

You, MS, made me a high fall risk. It’s so normal to me now that I say it without emotion. But normal doesn’t mean safe.

Every step is a calculation, every uneven surface a silent threat. I’ve learned how to fall and how to get back up again. But I live with the quiet fear that one day, the next fall might be the one I don’t walk away from.

MS, you changed how I see myself. I don’t feel cute anymore. I don’t feel invincible. I don’t feel like the person I was before you.

And yet, here’s the part you didn’t expect: I’m still here. You may be a snowflake disease, unpredictable and one of a kind, but so am I. You shift, change, and surprise me, so I adjust, I learn, and I survive.

I am becoming something you didn’t plan for: a chameleon. I adapt to every season you bring. I find new ways to move, new ways to shine, and new colors inside myself I didn’t know were there. I may change, but I do not disappear.

I represent resilience. I represent survival. I represent a chameleon, always transforming, always here.

To submit your own Guest Voice for publication on Multiple Sclerosis News Today, please email your idea to our columns manager at [email protected] with the following included in the subject line: “Guest Voice: Multiple Sclerosis News Today.”

Note: Multiple Sclerosis News Today 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 provider 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.