Embrace Your Story

I’ve been living with MS for 6 years now. Short in comparison to most. I was diagnosed in 2010 at the age of 49, with an abrupt onset of double vision. My MRI, lumbar puncture and physical exam all aligned perfectly with the stars leading to a diagnosis within 5 days of my seeking treatment for my double vision. Again, I’m grateful to not have been held in limbo for months or years being told it might be could be.

I had a very aggressive course my first 2 years which I need not bore you with. The point is, I went from being at the peak of my career as an ER manager, feeling great success in having accomplished things many never get to do in their entire careers! I helped design a new hospital, closed one ER and managed to work in one until the new facility opened and finally opened the new facility!!

I have lots of fancy degrees and letters behind my name too.

What I learned in the last 6 years though is none of those things matter. I loved my job, I loved my work and I love helping people. It’s not my job that defined me.

I would like to say my MS does not define me either. I hear people say this all the time. I’m not going to be popular when I say I think in a small way I believe MS does define who I am today. Please let me explain.

I am not the same person I was 6 years ago. I can’t stay awake endless hours. I can’t perform simple math in my head anymore lol. I carry a 3 ring binder where I write down where I put things so I can find them later! My friends know they have to remind me of events or I will forget. I can’t walk as far as I used to, I get off balance. If I have a couple of drinks with friends I pay for it a couple of days afterwards with tingly feelings in my hands and feet.

Please understand after all is said and done, while my MS does define me in some ways I’m not angry about it at all!! I’ve been blessed to meet some of the most amazing people who are just like me! I’m able to help others who are struggling with a new diagnosis. I’m open and honest and able to spread hope and awareness!! It’s a pretty good gig.

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Comments

View Comments (3)
  • mascha
    3 years ago

    I like your article.
    I often hear these words in blogs,from family etc and deep inside I think it does define me to a degree.
    It does not take over who I am but the things I loved like playing tennis is no longer an option.Busy events or get together’ makes me tired for 3 to 4 days after.
    So it’s nice to read I am not the only one thinking this sometimes:)

  • Penny author
    3 years ago

    Thank you!! I hear the term so often how MS doesn’t “define me”. At 54, I can’t drive myself to the store anymore, remember where I put things for safekeeping and not repeat myself lol. I definitely can say it’s changed everything about who I am in terms of the way I go about living my day to day life!
    The flip side is It allowed me to gain perspective on what is most important in life. It wasn’t really my work because I could be replaced there. I can’t be replaced in my family. I now have time to enjoy the little things I’ve missed all these years

  • Devin Garlit moderator
    3 years ago

    Thanks for sharing! I think sometimes people see that MS is “defining them” and think of that as a negative when that isn’t really the case. The fact is that some aspects of our lives do change but that isn’t always bad.

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