My Beginning

It happened simply, without warning, no reason.

When I woke, there was white, endless, empty white. Half of my vision was missing, stolen in the night when I slept and could not defend myself. That thief left no handprints, broke nothing, all belongings where I had left them. It was only my vision, the sight in my left eye, nonexistent as if it had never been.

I raced to my family physician, who dropped his ophthalmoscope on the metal examining table where I sat. I remember that clang and felt it reverberate in my body, mixing rhythms with my quickened heartbeat. His eyes were wide. He was terrified for me. “Go to an eye doctor. I’ll make the appointment for you right now” and he darted out of the room, leaving me alone.

Thirty minutes later, I was sitting in front of Doctor Number Two, who announced it was optic neuritis. “Or inflammation of the optic nerve,” he explained, “and the causes range from bacteria and infections to autoimmune disorders.” His expression was too serious; I could feel something more lurking, something he did not want to say. “I’m going to schedule an appointment for you to see a neurologist immediately” and he, too, bounded from the room. Immediately? I thought. A neurologist? But this deals with my sight…

Still, off I dashed to Doctor Number Three. “Multiple sclerosis,” he declared, sitting on his stool after performing a gamut of tests that included analyzing my eyesight, checking numerous joints, and inspecting my walk up and down the hallway. He was an older doctor with white hair and a white matching beard, the type of doctor patients line up for because he has ‘experience’ and ‘wisdom’ and had ‘seen things in his career.’ He was the friendly type, too, one that spoke slowly but had a mouthful of words pouring out each time he took a breath. Or did he breathe? Maybe his words were his breath because he didn’t pause until reaching this sentence: “Multiple sclerosis – You have an autoimmune disease.”

That was five years ago when I didn’t understand what was happening, five years ago when the word ‘disease’ felt terminal. And I was only thirty.

I have since learned that the diagnosis of multiple sclerosis often follows optic neuritis. However, I have also learned that for each person, MS is different. More importantly, MS is not terminal.

When I was diagnosed, it was one month and three days before my wedding, which is why MS and my marriage seemed intertwined, impossible to separate. I remember being terrified I would not be able to see my soon-to-be husband at the end of the isle, that I would be stumbling blindly towards him, holding onto my father for a different type of support most brides don’t need. Luckily, none of that happened and I regained my sight shortly after intravenous steroid treatments.

Surprisingly though, the true pain came not from my diagnosis or the confusion of living with an autoimmune disorder or even the attacks that followed. My true pain came two years later when my husband and I got a divorce. This is why I write now. I want people to know living with multiple sclerosis can be challenging. But so is life.

I now hike as a way to escape and push myself past what I thought I could do. I also write and hope to publish a book, telling more on my diagnosis and personal journey because in the end, everyone needs an outlet and no matter if you are newly diagnosed or have had MS for years, it is important not to limit yourself because you can achieve more. Going through my diagnosis, living with my attacks, and coming out on the other end of a divorce, I am stronger and I would not change any moment of my past because of this. That is why it is important to remember you can never go back, only forward. And there is beauty is in that.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • sevensix
    4 months ago

    My eye doc said I have nothing wrong with my eye going blind. On more than one occasion he uttered those words leaving me confused but also not offering a referral that added more anxiety and more questions to a vexing problem. Obviously this is a passing condition soon to resolve itself, right? My soon-to-be-bride stepped in making an appt with a neuro who, after a battery of tests co-firmed primary progressive MS. Two weeks later I married her and 35 years later remain happily married. MS has destroyed my life. It has actually been an adhesive keeping us together in the toughest of times, the best of times, all the time. Bottom line: We have been blessed .

  • Julie
    4 months ago

    My doctor also sent me for tests and other specialists before I ended up at an opthomologist who asked me if anyone had mentioned MS to me. No, but now I was curious. I went back to my doctor who said to me that we were going down a different path. Some things you never forget. This was one of those things. That would be MS. That was 17 years ago. My husband of 30 years left 13 years ago. I had thought about writing a book on my journey but I can’t get past the divorce part. But my path has been so amazing and frustrating. Along with the disease, the path is so different for everyone. I wish you all the best along your way. It isn’t always easy but you sound strong and able. Best of health to you, Julie.

  • Julie
    10 months ago

    I hate when I hear of anyone getting a new diagnosis of this crummy disease. But you are right. It’s not the end of your world or your life. So much can be handled and learned how to manage but you probably already know that, right?

    I don’t know what to say about your divorce. MS is not kind to relationships. It takes a strong partner to stick with you during the tough times. I was diagnosed 18 years ago and my husband left after 30 years of marriage. There have to be some good men out there! I believe that with all my heart.

    Stick with sites like this where you can communicate with other MS’ers. We know how you feel and can hold your hand if that’s what you need. Thanks for your story. I hope you find peace and good health from now on (I was diagnosed after a bout with ON too).
    Take care, Julie

  • L. Merredith author
    10 months ago

    Hi Julie, thank you for taking the time to read what I wrote and comment! You are right — I have learned a large amount and have grown much more than I would have before being diagnosed and going through my divorce. For that growth, I’m grateful.

    While no one wishes a divorce experience for anyone, I will say the man I married was and is a truly nice person. We simply grew apart and so the divorce was a joint decision. We still are in communication with one another — He recently married again to a woman who is beautiful inside and out, and I am now engaged to an amazing man. Both my ex-husband and I believe life worked out the exact way it should and for the better. Anyway, I say all of this to show that while MS can definitely take a tolll on any relationship, I hope those who go through this know that there may be other factors involved in marriages and if that marriage is worth it, it will survive but in the end, if it doesn’t that could be because there is something better in the future just waiting. That at least was the case for me, though it is strange and sad that my MS diagnosis and marriage then divorce all came around the same time, making them feel so connected mentally.

    Again, your kind words mean a lot to me and I am feel fortunate to have this site and people like you to connect with. I hope you are okay too as you mentioned being diagnosed after a stint with optic neuritis. I found that symptom almost more scary than the MS diagnosis, in truth.

    Wishing you good health and a wonderful day! Thank you again,
    L

  • Erin Rush moderator
    10 months ago

    Thank you for sharing a part of your story with the MultipleSclerosis.net community, L. Merredith! I am sorry your diagnosis was such an abrupt and terrifying experience! And I am also sorry for your divorce.

    You bring up a great point that life with MS can be full AND fulfilling. And as wonderful as it is to have a supportive partner by your side on this journey, many of our members can attest to the fact that they are quite fine and happy by themselves.

    I am glad that you have not let MS define you, but only strengthen you. It can be a ruthless disease, but it doesn’t have to have the last word, ever.

    Thank you so much for sharing your inspiring words and may you have many, many challenging and exciting hikes in your future, and also plenty of relaxing, meditative hikes, too!

    Best, Erin, MultipleSclerosis.net Team member.

  • L. Merredith author
    10 months ago

    Thank you so much for your nice comment, Erin. I have learned a large amount going through this diagnosis and my divorce so that in the end, I almost feel grateful because I am stronger. I hope others affected by this disease and other hardships find the same strength I’ve been fortunate enough to find.
    Thank you again for both reading and writing! Hope you have a wonderful day!

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