Not Alone

I’ve tried many times to write about my story with multiple sclerosis, but every time, I can’t do it. Quite honestly, I don’t know what to say. I don’t know where to begin—MS is such an individual illness, where no two cases are exactly the same, so what works for me may not work for anyone else.

But maybe that’s just been my excuse. The thing is, it’s not easy to talk about. Even when I think I’m fine, when someone asks about it, I often realize I’m not (tears and awkwardness ensue).

While I’m doing great now two and a half years post-diagnosis, it was a different story three years ago. It’s not easy to revisit the scary weeks where I struggled to walk and had no idea why. Or the cold December day when I was diagnosed; I always think to the moment after my appointment, as I sat in the hotel room across from the Mayo Clinic, staring in a mirror (very cliché-like), thinking about my future. The fear. The sadness. The uncertainty.

But I want to talk about it now—I want to share something of value that could potentially lift up someone else struggling. A theme for the MS awareness movement is “stronger than MS,” and I have no problem thinking about what makes me stronger.

Not what, but who.

Because when I think back to that cold December day, I also think about my husband, who drove us to Rochester through a blizzard on his birthday because we couldn’t go one more day without answers. He’s been by my side every day since, on good days and bad, and in sickness and in health.

I think about my parents, driving six hours to take care of my little ones—one of whom had the stomach flu—so that we could go get those answers. I think about the text messages and phone calls from my sisters. I think about how, when I was sitting staring into that mirror, I was also staring at a dozen red roses my best friends had sent to my room, because even though they weren’t there with me physically, they were still with me. All of my friends and family have been with me ever since.

Not-Alone-Elissa.jpgI think about my kids, who give me joy and strength every day. When we completed the three-mile Walk MS, I took it as an opportunity to remind my 8-year-old about when mom couldn’t walk very well, how it’s important for me to walk now because I can, and how much I appreciated him walking alongside me.

I think about the other MS warriors I have met along the way, who have provided insight and a listening ear as I’ve navigated this uncertain disease. They are all what make me stronger than MS.

And so what I would say—what I am finally saying—to others newly diagnosed with MS is this: You are not alone. In this darkest hour, turn to those who give you light. Your family, friends, church community, co-workers. It’s scary to bring it up—and yes, tears and awkwardness might ensue. But you know what? You get through it. People are nice. They might not understand, they might not always say the right things, but they care. They want to help.

A lot of uncertainty comes with having MS. But one thing is certain: You don’t have to face it alone.

Read about the next step in Elissa’s journey with MS here.
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Elissa

Elissa Dickey

Elissa Dickey lives in Aberdeen, South Dakota with her husband and children. A former journalist, she is now an author who also works in communications at a university.

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    11 Comments

  • Erica Lindeman   May 24, 2017 7:38 PM
    Thank you for sharing. What you said is true. It is the people around us that really give lots of strength and support. Keep on fighting, there's always love in this world.
  • delightedhands  May 24, 2017 7:47 PM
    So true in the first dark days and true years later. Excellent article; I'm so glad you finally wrote it down and shared this post!
  • Jocelyn Blum   May 24, 2017 8:56 PM
    Thank for being vulnerable with us. It is such good news that you are much improved. Lovely picture.
  • sue   May 24, 2017 10:15 PM
    I live with daughter & her husband & children. You are right about one thing, its not easy, no one understands...I try to explain why I do things the way that I do & why I feel this way, but my son in law doesn`t get it & at times neither does my daughter.. I don`t know what else I can do, this is a hopeless situation, any sugestions for me??
  • Avatar
    gjlisGLORIA  May 25, 2017 1:21 AM
    Elissa, when I read your words,"People are nice", they meant so much to me. These words touched my heart in a very real way. It was as though God Himself was reminding me that when, for instance, I am struggling in the church to walk properly as I often do that - yes, people are nice. They don't look at me as weird because - they are nice. They don't think bad things about me. They are nice. People are nice and I think you for remiding me.
    Gloria
  • tslaghuis  May 25, 2017 2:17 AM
    Thank you so much for sharing.
  • Ted Dickey   May 25, 2017 8:33 AM
    To Sue:

    If available, please find a local support group. They will be more understanding to what you are going through. For your daughter and son-in-law, keep trying to educate them about MS.

    I am very proud of my wife for having blogged about her struggles. It truly helps her when she expresses her feelings.

    Good luck.
  • Avatar
    tarawrist  May 26, 2017 9:32 AM
    Elissa,
    I also tried to write about MS as well, all I could do was cry. I was 22 when I found out I had it, mind you i have all sorts of diagnosis in my medical records that should be deleted, and I will tell you why. Back in 2010 I had a heart attack ( due to birth control) but my neurologist said it could be the IVIG but it wasnt. I went blind when I was 22 and nobody would believe me,so i went nuts canceled tv , paper everything. My father was like well u need glasses so we went to ohio and the eye dr said i had optic neuritis ( she said most women that have it have MS ) I stayed positive and i had an MRI few days later and sure as ***** I had MS. The lesions are one overlapping another and neurologist told me Ive had it since I was about 10. It was always easy to say i have carpel tunnel and everythiing else and all theyhad to do was an mri how hard was that. I was a straight A student principals list and my dream was to be the best nurse. After seeing my mri I quit in my 2nd year. nobody is going to hire someone who is ok one minute and not the next. my father always compares me to this lady and im glad shes ok but I am not. I cry I forget I hurt im just not myself anymore. I cannot have kids and that was a godsend not that i dont want any i have so many problems. i can only take tsyabri 300mg by iv i call it my juice n get it every 4 weeks well i run out 2 weeks into it, what the hard part is i have progressive relapsing where i can have a flare up everyday, i still say relapse but thats if its a new symptom. i have all of the old symptoms and i have no idea whats new. the worst is when people think you're lying about it. I always was clumbsy but it was MS the whole time. I get very emotional n im crying no i will write back whn i can seee the letters. but you are right A lot of uncertainty comes with having MS. But one thing is certain: You don’t have to face it alone. Thanks i secluded myself from all of my friends cuz i know they dont know what to say and i get so emotional when its brought up. i get my chemo today so hopefully it boosts me back up. I cannot believe how much your body needs it, plus thats the only medicine i can take, Take care Elissa and everyone who is reading because i do know what you and many others are going through.............. much love
  • kyraholbrook  May 30, 2017 4:01 PM
    Your account was written beautifully. Thank you.
  • vondab  May 30, 2017 6:18 PM
    So much yes! I am guilty of not accepting help until I'm at my wit's end. I am stubborn and try to act like nothing is wrong with me. I think of others with MS that can't do what I can still do and think, I got this. But some days, I don't and I need to learn to accept and even ask for help! Thanks for your encouraging words, Elissa!
  • Sandy Kaptain   Jun 20, 2017 8:51 PM
    I got a diagnosis last week of possible benign MS. Hurray! But lots of fear too. And lots of questions to f/u with my neuro who is great. He said I may not need meds and may not get disabled or need a w/c. I am now 69 years old, but tho' I've told him about falls, and have had MRIs over those years, he says there is now a significant change (slight last time, not significant). I have 6-12 falls a year. Would rather take meds than get disabled before I would have to! OR have more cognitive deficits. Guess I have to call the MD. I need more support from friends, will talk to them when we get home from vacation. So far in email, when i said mild MS, or benign MS, no one seems too concerned. I was a homecare RN and dealt with some disabled much younger women (and one man) and this is very scary! Don't want to make it out that I am sicker than I am, but falls are not good. Have already had cervical spine surgery, and 3-4 fractures +. Need to know how rough the meds are! Thanks for telling your story, hope to get more answers, support and help with this! I am very, very lucky to be 69 and walking OK (when I don't fall--lol.) but don't want to be a burden to my hubby!