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A Painful Lesson

It’s funny how our brain can sometimes play serious tricks on us. But there are just a few things we some how need to be reminded of every once in a while. In the midst of a personal pity party that I held just this morning I said to my husband, “I feel like I don’t have purpose.” He responded, “When’s the next time you go to the psychiatrist?”

This particular party was held after I woke up and had no place to be. It dawned on me that nothing seemed to depend on my presence. To be more accurate, I had no job to report to. You see the last career I had I held in high regards. Though I wasn’t a surgeon that saved lives, I took pride in my job. My life revolved around it. I guess I thought it gave me purpose.

Due to Multiple Sclerosis, I was forced to leave my career behind. So where does that leave me? What’s the appropriate amount of time I should bemoan its loss? Because at this point I haven’t worked or driven a car since 2009! You probably know that as I remind us both constantly.

I forgot that though I’ve exited the structured working world, I have still maintained my worth. Thankfully a good friend reminded me of that. Thank God for friends. I totally dismissed the advocacy work I’ve done with the National MS Society. I know I’ve affected lives with them. I also completely overlooked my impact here with this website! Something that started out as a safe place to go and vent has turned into so much more. You move me. You humble me. You give me purpose.

I’ve been taught to shy away from thinking that something outside of myself gives me purpose. Similar to the way I did with my former career.

Thanks for helping me learn that painful lesson.

46 thoughts on “A Painful Lesson”
  1. Jeanette Viscomi 11 June, 2012on10:42 PM Reply

    I love this blog! I have MS and especialIy during the tough times I enjoy reading inspirational quotes. Please visit my website and then share it with your readers.

    • Nicole Lemelle 12 June, 2012on3:24 PM Reply

      Jeanettee, Thanks for reading my blog and will stop by yours as well!

  2. Tim 7 June, 2012on11:05 AM Reply

    Hi Nicole, well you nailed me again. I’ve been fighting this little battle myself but I try to remember that it is just a battle, not the war that we face everyday that we live with MS. This one actually took the back seat for me yesterday as I had a retina scan and an MRI of the brain. After 6 years of living with MS I still resent having to undergo so many tests/exams yet they are just a part of my new life to be accepted which doesn’t mean that I have to like them! However the point of my reply is to encourage your continued contribution to so many people’s lives and whom you’ll probably never meet yet have impacted there lives for good. I’ve always strived to impact just one person for Christ as I am a Christian and believe that I have done so with my 3 children. However I don’t think the effort should stop when you hit goals and there is a “rule of thumb” that for each person you reach/impact, 50 others are also beneficiaries of your impact. So just rejoice with every comment you recieve an d each contact you make doing what you do. Another post mentioned that it is not what we do that defines who we are but it is who we are that defines such and you “are good”, doing good for many so be blessed and have a great day.

    • Nicole Lemelle 7 June, 2012on11:46 AM Reply

      Tim, Wow. Thanks. I’ll have to remember that on those low days.

      • April 5 July, 2012on10:38 AM Reply

        I couldn’t have said it better myself Tim. Nicole, I just stumbled on your blog and am enjoying it very much. Keep em coming.

        • Nicole Lemelle 5 July, 2012on1:08 PM Reply

          April, I’m so glad you like it! A new post comes out every Tuesday. There’s pictures and videos too.
          Thanks again.

  3. KIM 7 June, 2012on6:32 AM Reply

    I know exactly how you feel. I “retired” 12/2006 after working 35 years, raising 2 children, going thru a multitude of deployments (my husbsands) & being very independant. Now my days are spent home alone, creating useless spreadsheets on the computer; spreadsheets that mean something to only me. I’d be lying if I said I didn’t have a “pity party” myself. Sometimes it helps, sometimes it doesn’t. It is VERY difficult to find out “who you are” when slowly you are being stripped of your identity. It is so very important to read of others who are feeling just as you do, going thru the same pain. I can’t imagine the isolation people who came & went before us felt prior to the computer. Reading your stories and others keeps me going. Keep telling it how it REALLY is. You keep me going.

    • Nicole Lemelle 7 June, 2012on11:50 AM Reply

      Kim, This is one thing I guess we are not alone in. But Life well lived said something earlier I just can’ forget. Maybe who we were before wasn’t who we really are at all. Now that we are stripped of our former roles maybe who we are can shine through. I added that bit at the end myself!

  4. life well lived 7 June, 2012on6:10 AM Reply

    As I read the obit and then many of the favorite quotes of Ray Bradbury, one of my favorite modern authors (modern = wrote while I was old enough to read it), I came across two which screamed at me to not given the subject of this posting:

    “Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.”

    Zen in the Art of Writing

    “Life is like underwear, should be changed twice a day.”

    A Graveyard for Lunatics

  5. Olivia 5 June, 2012on10:52 PM Reply

    Nicole, when you touch our lives, you touch our children’s lives, spouses, family, and friends. Your voice is beautiful. Thank you for sharing it. Hugs, Olivia

  6. Debby 5 June, 2012on8:08 PM Reply

    Nicole, I always look forward to reading your blog. You have the ability to touch so many lives with your words. I am fortunate to still be able to work full time but as we all know, that can change in a heartbeat. I believe that people in general have the tendency to identify themselves by their career but in reality it is just a job, not who we are. You truly are an inspiration to us all.

  7. Sissy Madigan 5 June, 2012on7:42 PM Reply

    Nicole… Once again great blog!….Your vulnerability and truth about where you are and how you feel is an inspiration for all of us to just be .. who we are… in the moment and authentic…. thank you!

    • Nicole Lemelle 6 June, 2012on2:22 PM Reply

      Sissy, Thanks so much. That’s exactly what I aim to do! Thank you for noticing!

  8. Liz M. 5 June, 2012on5:07 PM Reply

    Hi Nicole,

    Once again, your latest blog pulled at my heart strings.
    Your contribution to the NMSS and all of us cannot be measured by a job or paycheck.
    You make our world a better place by sharing the most intimate and sometimes a very raw look at what many of us are feeling or have experienced.
    You make the world / our world a more “acceptable” place to live in.
    Your sharing of life with MS makes us stronger every day.

    P.S. The photo is wonderful of your group.

    Liz M.

    • Nicole Lemelle 5 June, 2012on6:03 PM Reply

      Liz, Your kind words are inspiring. Thanks to you guys I’m recharged and ready to fight!

  9. Lisa Hammermeister 5 June, 2012on2:07 PM Reply

    I look forward to your blog. You have helped me in many ways. You are the first blog I ever read. I relate to you and your subject matter. I am lucky to have you in my life.

    • Nicole Lemelle 5 June, 2012on2:10 PM Reply

      Lisa, Thanks. I’ve come to look for your comment too!

  10. Peter 5 June, 2012on1:24 PM Reply

    Hi Nicole,

    I saw you commented on my first blog post. Thanks! It’s nice to know someone read it. I can see we are at different levels of disability with this disease. I really hope my blog post didn’t make it sound like I was showing off. I attribute how well I feel I am doing to luck of the draw and the fact that no two MSers have the same experience with it.

    I’m trying to make the most of my health, hopeful it continues, and still figuring out how to prepare if it doesn’t. I look forward to reading through your blog in more detail than I have time for at the moment. After I read your diagnosis story, I’ll find a way to share mine.


    • Nicole Lemelle 5 June, 2012on2:12 PM Reply

      Peter, Thanks. I just emailed you! Oh, I release new posts on Tuesdays. Welcome!

  11. life well lived 5 June, 2012on1:09 PM Reply

    I have always kept this quote from tejokid on MSworld message board a few years ago for days when I feel as you describe:

    Sometimes who we used to be wasn’t really “us” to begin with. Maybe it was not who we really were so much as a collection of roles we played. The hard worker, the soccer mom, the dad who was a rising star at his job, the great outfielder–all those things.

    What we are now is “us” stripped of a lot of our roles. We define ourselves by what we do, not by what we are. When, suddenly, what we do isn’t possible any more, we’re left with something we don’t recognize because it’s been covered up by all the roles we play.

    Maybe the question isn’t, “Who am I now?” but “Who am I?” We’re a go/do/purchase society–when we can’t go, do, or purchase things we want to be identified by (the Hummer, the newest iPod)–holy cow, what’s left? Just us. Unadorned, unembellished us.

    It’s so hard to accept ourselves that way. Our culture is like those old west movie sets–a big facade on a building that’s built like a box behind. If a wind storm blows the facade down, we look at what remains and think–well, that’s not very interesting. Where’s the sign? The architecture? Where’s the fun in a boring, square structure?

    In reality, what’s behind the facade is all that matters anyway. Denuded of our roles, we’re left with what we’ve always been. Who we were was often great (and often not)–who we are now is where all the good stuff came from to begin with.

    We’ve lost a lot, but there it stands before us–the opportunity to remake ourselves.

    • Nicole Lemelle 5 June, 2012on1:42 PM Reply

      Well lived, I always enjoy your comments. They are insightful and honest. I appreciate that. I look forward to that. Thank you for coming back.

  12. Sarah C. 5 June, 2012on12:00 PM Reply


    I am not sure if this helps, but I cannot tell you how much I look forward to receiving your blog updates in my inbox. I wake up each morning, check my email on my phone while lying in bed, and whenever I see your blog post, I get so very excited to read it. No matter how real, scary, or honest your post may be, it is one of my favorite moments. I lie there in bed and read your thoughts, your story, and I begin my day feeling lucky that I have found your words and true wisdom.

    Thank you for being all that you are for the MS community. Stay strong and keep fighting.

    My best,
    Sarah C.

    • Nicole Lemelle 5 June, 2012on1:36 PM Reply

      Sarah, Oh my that was so nice to hear! To think that you actually look forward to my thoughts blows me away. I’m so humbled and grateful.

  13. Melissa 5 June, 2012on11:58 AM Reply

    In a world centered on paid work, it is hard to acknowledge the unpaid as being just as important. Allow us to remind you that it is, and you contribute meaningfully to it.

    • Nicole Lemelle 5 June, 2012on1:33 PM Reply

      Melissa, thanks so much! I wish I could carry you around in my pocket!

  14. Laurie Hanan 5 June, 2012on11:26 AM Reply

    I, for one, feel I almost depend on your blog. I look forward to it the way I await a visit from a friend. I am not in much contact with others who share my condition. A few months back I met a wheelchair-bound lady in my neighborhood, and found out she has MS. I was so excited, imagining all the things we’d to together – in our wheelchairs. Finally, I didn’t have to face my days as the only person who can’t walk. I soon learned that this lady – God bless her – totally independent, always on the go. She has no time for me other than to exchange the rare e-mail. Apparently, she wasn’t as thrilled at finding a like soul as I was.

    I was forced to retire on Disability in 2006. I’d always identified myself as a postal worker. When I wasn’t delivering the mail, I was a dancer. I taught dance classes and I performed. As you can imagine, I went through a MAJOR identity crisis. If I am not those things, then WHO AM I??? Six years have passed and I think I can safely say I’m comfortable with the thought that I am my SELF, regardless of what role life has cast me in at this moment. But that transition took a lot of time, and a lot of reading self help books – like we discussed in a nearlier blog.

    Nicole, I am so happy to have found you.

    • Nicole Lemelle 5 June, 2012on1:32 PM Reply

      Laurie, Those are some powerful words. I just have to keep it up. Sounds like you can truly relate. I’m grateful I found you too as you are a faithful reader!

  15. Courtney Davison 5 June, 2012on10:53 AM Reply

    I can so relate to your blog right now. I miss my job and the feeling it gave me. It gave me better self esteem and confidence because I was good at what I did. Now that I’m not working, I’m in a holding pattern. I’m not quite sure who I am anymore. I still haven’t finished grieving over the part of me that left when I stopped working. I’m in therapy to try to help me realize there is purpose in my life. That chapter of my life is over and a new one is beginning. It’s just hard to say goodbye to it.

    • Nicole Lemelle 5 June, 2012on1:28 PM Reply

      Courtney, I should hire you to be my psyche, because you sound just like her!

  16. Muff 5 June, 2012on10:50 AM Reply

    I was so attached to my positions in education, that they became or defined who I was. Out of the workforce now for four years, I’ve had to redefine and restructure who I am. I can’t allow myself to feel purposeless, or useless, so I search continually for new outlets for my creative soul. I love reading your blog posts — they help me to focus on the more important aspects of my life. So add that to your list of “why Nicole has a purpose!”


  17. Nat 5 June, 2012on10:38 AM Reply

    Thanks Nicole for a great post. I do work – but now only 4 days a week. There are a lot of things I can’t do in my job anymore and I know I’ll never climb the ladder much past where I am now.

    It hurts me too as I have always placed great regard and importance in my job, and I’m terrified that one day I may have to stop working.

    You (and the other commenters) help prove there is ‘life beyond’.

    • Nicole Lemelle 5 June, 2012on1:26 PM Reply

      Nat, Yes you are right there is life beyond for sure!

  18. Monique 5 June, 2012on10:16 AM Reply

    Just wondering have you done volunteer work or went through the programs that help those with a disability find work

    • Nicole Lemelle 5 June, 2012on1:37 PM Reply

      Monique, Yes I have. But honestly sometimes I just fall off track.

  19. Toni 5 June, 2012on9:52 AM Reply

    You inspire others, you do have a purpose. you are an MS activist patient, constantly growing, changing, evolving, learning. We all support each other. Have any idea how many read your blog each week?

  20. Kathy Young 5 June, 2012on9:50 AM Reply

    Nicole — Another great post and one I can totally relate to. I just had to leave my job. In fact, this is the first day that I’m not “working.” It’s odd, scary, lonely, exciting, relaxing, scattered, unfocused and freeing – all at the same time. I’m devoting myself to raising my kids and moving forward on my MS blog as well. I do think we make a difference in that way. I’ve heard from people who thank me for helping them through a tough day with a little humor. And I’d like to thank you for helping to articulate my concerns and experiences – and always showing us all how to handle life with MS with grace.

    • Nicole Lemelle 5 June, 2012on10:12 AM Reply

      Kathy, Wow, that was so powerful. I’m inspired. Thanks.

  21. Helen 5 June, 2012on8:50 AM Reply

    worked as regristration person for big conventions that come to my town, Found it fit with my MS situation very well. Of course you will assess for yourself. Worked for me because it was “on-call” and I could say “no” without problems. Work 2-3 days on asssignment then go home and rest while waiting for paycheck. This lite weight work satisfied my need to work without over-committing. Big cities contract with companies to sell their convention services. Hope my story was helpful

    • Nicole Lemelle 5 June, 2012on10:14 AM Reply

      Helen, That’s a good idea. I think my aunt does something like that.

  22. Judy 5 June, 2012on7:23 AM Reply

    Something as major as getting MS forces a comprehensive repurposing of life. Some of us make it through the transition gracefully; some, not. For me, it is a moment-to-moment, work-in-progress evolution. And whenever I think I finally have my act together, MS will shift gears and remind me I still have work to do. Yet, despite all the false starts, I do believe I have created value in my life, both for myself and for others. Many new things have startled me with their capacity to create joy and meaning in this new life. Certainly, in my former career as a businesswoman, I would never have embarked on writing poetry and fiction. And yet those bring me great satisfaction now. If only the MS would now just take its exit.

    • Nicole Lemelle 5 June, 2012on10:17 AM Reply

      Judy, It’s so ironic. I can’t believe you didn’t do this before. You are so talented!

  23. Arletha 5 June, 2012on6:06 AM Reply

    Hi Nicole,
    I really enjoy reading your articles, they help me reflect. I can understand your feelings because I have had them as well. Sometimes I focus on what I can no longer do instead of focusing what I can do.
    We may not be able to count how many times we positively affected other people’s lives. A smile or a kind word could very well make a difference in their life.
    This year was the first time I organized a team to raise money and walk for the NMSS. I didn’t realize how important that was until more people volunteered to walk with us next year.
    I always keep in my mind that even the little bee has a purpose by using the nectar that it gathered from flowers to make the honey that we enjoy.
    We all have a purpose. Take good care!

    • Nicole Lemelle 5 June, 2012on10:23 AM Reply

      Arletha, Thanks for your view. I think I just had a moment. I’ll get my “sexy” back. (That’ from a Justin Timberlake song)

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