Denial, Hope, or Faith?

I so want to walk again. I haven’t given up on it’s possibility.

I recently finished my National Multiple Sclerosis blog entry. It will be available shortly. In the piece I encourage engagement among the land of the walking “well” even if it meant using assistive devices.

Just as I finished typing the last word of the entry a delivery from Medicare arrived! It was a scooter! Keep in mind, I was well aware of its impending arrival. In fact, I already own a bigger more robust power chair I used when my core strength was questionable at best. But, when I saw this scooter, my heart crumbled just a little bit. My first response was to resist it, because it seemed to mean I had given up on walking again. But, I hadn’t. It represented a conflict of interest for me.

I so want to walk again. I haven’t given up on it’s possibility. Is that denial, hope, or faith? I don’t know. I do know it hurts to even slightly give in to the concept of never walking again. My word, I’m only 36 years old! It’s been years since I have been able to walk unassisted, but it never gets any easier to accept. I mean I still mourn walking and I don’t think there is a statue of limitations where this is concerned. At the same time, I know things could be so much worst. Plus, I fear coming across as a hypocrite.

So, I was slowly able to turn things around by being grateful for what I can do. I remember when I didn’t even have enough strength to competently use a scooter! You would think I would see this as an improvement! NOPE, well not at first. But after recalling memories of my last exacerbation, I was able to usher in new found perspective. As corny as it may sound, though society deems me disabled this scooter will enable me! I once again can navigate amongst the land of the walking well! I can regain an inkling of my coveted independence! I can tackle those long aisles at Wal-Mart without having to wait 30 minutes for a free cart! I can go to the mall without Tom, my dear husband and caregiver. I will not have to be pushed everywhere in a wheelchair! That being said is reason enough to celebrate!

I plan to continue physical therapy, water aerobics, frequent our local gym, and use my walker inside the house. I plan to continue moving forward…just a little faster sometimes!

Once I was able to get my bearings and view this as a thruway to normalcy, I eagerly named my new scooter Thelma. Yes, from Thelma and Louise!

Author: Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

62 thoughts on “Denial, Hope, or Faith?”

  1. My biggest issue: My husband doesnt understand why I am needing to be so involved in my church. Why I am turning to God since my MSn diagnosis. He thinks he can be all things to me, including my spiritual guidence.????? , I leave that to God. and yes I am changing and yes I have always believed in God, and now I am turning to him and asking for his help to guide me through MS I am asking for help to build my faith, I welcome the faith that I see,and I am getting stronger every day. and I thrive when I am around The First Unity Church in St Petersburg.. I take classes and have made friends. aHe just doesnt seem to understand that I need spirtiual guidances as well as his love and support. Anyone else going through this ?

    1. Cas,
      I wish I had the insight to help you through this one. What I do know is that he’s going through this too. It sounds like you are finding your way. We just want you two to cross paths.

  2. We absolutely love your blog and find many of your post’s to be exactly I’m looking for. can you offer guest writers to write content available for you? I wouldn’t mind publishing a post or elaborating on a number of the subjects you write about here. Again, awesome web site!

  3. Please don’t think I’m whining. I just needed to vent. You would think I’d be better at this being diagnosed in 1985.

    Thanks for listening.
    Rebecca 🙂

  4. Good job girl!
    It’s tough to accept, I understand (been fighting & resisting for years). But as you have learned, it is wonderful to have some “freedom” to get out & about!

  5. I’m using two canes when I know there isn’t far to walk, a rolling walker when I don’t know, and a free scooter at Walmart. Did your dr. prescribe your scooter?

    I’m enjoying your blog. Thank you.

  6. Nicole I so enjoy your writing – you really are talented at explaining the unexplainable if that makes any sense?

    I love my little scooter. The scooter my friend gave me allows me to enjoy going out with others more when the trip involves a lot of walking. Instead of wearing myself out and spending my energy figuring out how I am going to keep up or not fall down I just zip along.

    Jan

  7. Hey Nicole,

    You inspire me! My aunt has MS as well but we don’t talk to much! Did you file for disability? And if so how long did it take for you to get approved? I’ve only had MS since September of 2011 so I’m really new at this and I’m only 25! Could you give me any pointers?

    1. Nicole,
      First off I think it would be great if you could connect with your aunt. That being said I’ve drifted away from some family members as well. I know it can be tricky. Yes, I was diagnosed around 25 too! I’m now 36. The best piece of advise I could give you is the same that was first given to me at 25, “You can still do anything you want to.” At the time I was in nursing school. I finished and went on to be a nurse. So do what you can while you can!

    2. nicole…i was dx in 2001, “retired” in 12/2006 & filed for disability in 1/2007. I was awarded benefits in 7/2007 after the 1st time i applied. Was I surprised! I know that sometimes that isn’t always the case & i consider myself very fortunate to have gotten my SS. If you apply, make sure you have everything you need & then some when you apply at the SS office. When you get the booklet (abt 35 pages) think abt how you answer each question; don’t lie….be honest but firm with your answer…good luck!

  8. My son Daniel got diagnosed in 2006 and died in 2009 after being unable to to walk since late 2007 and being completely bedridden for all of 2008-2009. He was 23 years old when he died on July 5th, 2009 from Multiple Sclerosis (respiratory failure) He could not speak and had dementia and uncontrolled seizures. He held out hope until the very end. You are blessed to be able to use that chair and to have lived a successful life in spite of your illness. You just don’t know it. Remember, there is always someone who is worse off than you are. Be happy with what you have and use it while you can instead of mourning what was lost. <3

    1. Laura, What an inspirational story and thank you for sharing it. I feel both honored and inspired to push on…however slowly it may be! I release new stories on Tuesdays and would love for you to come back.
      Keep moving forward, Nicole

    2. Hi Laura, Iam so sorry to hear of your loss. I have secondary progressive multiple sclerosis and can no longer walk. It can be hard to deal with at times, I do realise there is always someone worse off. Your post has inspired me so much, thanks for sharing. Sheila. xx

  9. When I was first diagnosed (2006) a friend about 20 years ahead of me in MSLand assured me “that a girl can never have too many scooters!” I love that she put that in my head early! Long b4 I didn’t have a choice! So my ZIPPY and used to transport me, my 5 year old and our books to library, explore zoo, museums … I flew with her. Now ECHO has come into our life too … she’s smaller, more compact … Both “tricked” out with flowers, stickers, lights … and “since I look so good” … and smile in scooter, it has opened doors for me to talk to folks w/out disabilities about how it would and can help their mom, dad, sister, etc. And now I have TWO more manual chairs for travelling! Zip through those airports, put ’em under with the strollers! YAHOO!

  10. Bravo for you! I use a scooter-esque chair where I work; yeah, I *could* use my walker, but I’d spend all day walking from one side of campus to the other and then I’d have *no* energy available to teach The Youth Of America. Would I rather walk myself? Of course? But given the choice between no energy and the Magic Chair… I’ll ride in the Magic Chair.

    And besides… with M.S. (as with life), there’s only NOW. *Especially* with M.S., there’s only NOW. And really… isn’t that *enough* to deal with? Don’t worry about “never.” “Never” will never happen. But “now” will. Always.

  11. beautiful post, you alway make me laugh through tears….and i just have to add one thing, since you named your scooter, Thelma……..nothing higher than a curb, Nicole, nothing HIGHER than a curb! thanks again my friend, leslie joan in “more snow than we know what to do with” Idaho.

  12. I’ve had my scooter for quite a while now, and it does provide a sense of independence. Even though I can still walk a little, and I use my walker indoors, the scooter allows me to move faster and farther. I, too, yearn for those old walking days…
    Peace,
    Muff

  13. Gad to see ou on the scooter. I resisted mine at first, it sat for abt 6 months, but now it is my ONLY MODE of transportation. I do the therapy gig also, but, alas no improvement. Let’s face it, i have SPMS, it’s a progressive disease & it’s not getting any better & my scooter offers me the oppurtunity to function somewhat normally. I wouldn’t be able to perform the simplest task of walking even 1 foot on my own power without it. I actually have 2 scooters (thankfully); my prefered scooter is curently out of commission & I am waiting for the part to come in. Next, get a covered trailer for your scooter so that you can even take it out in bad weather! We finally did & it is so much better. Don’t let that scooter hold you back; we went on a cruise last year WITH my scooter & it was wonderful! I highly reccomend it! My only disappointment is that I haven’t quite figured out how to fly with it yet along with my bathroom issues. Keep writing Nicole..a lot of people count on you. KIM

    1. Kim, Thanks so much! Wow, you think a lot of people count on me? I just really tell what’s happening to me! Yes, I have SPMS but I just can’t give up hope. Mine fits in out truck, but I was quite scared today when it started drizzling a bit! We are planning on going on a cruise this year so good to hear it worked out for ya!

    2. Hi Kim, I just read your post and you sound like me. I too am now SP and am using my scooter if I go out and my manual chair in the house. I’m 5 next month, was dxed in 1984 and pretty sure I know more than any of the Neuros I’ve seen. Still even knowing that…I never thought I’d progress to this point. I feel like my body has betrayed me. Five years ago I was walking fine.
      when it decided to raise it’s ugly head, it went full force.
      Thank goodness we have each other to lean on.

      Rebecca

      1. rebecca, thanks for the reply…having SPMS really sucks at times but it is what it is. i was dx 2001w/RRMS but the last 3-4 yrs have seen a major decline in mobility. The scooters really help me…at least i can move about freely in my own home. I don’t use a manual chair as I have no use of my left arm/hand/leg/side. I don’t know how others did it yrs ago! yes, thank goodness for each other!

        1. Kim,
          I wonder how common it is the progress to SPMS? Well, regardless sometimes I feel like this is a new beginning in its own right. That is, sometimes. Others you’re right it just sucks!

          1. “Of the 85 % of people initially diagnosed with RRMS, approximately half will transition to SPMS within 10 years, and 90% will transition within 25 years” according to the NMSS website. for me, it was right about 15 years in….

  14. Great photo of you and Thelma. Your smile glows of freedom and independence to get around. Wonderful. I don’t think we ever give up and we shouldn’t. In my mind my chair is only an aid sometimes like an umbrella to use only when it storms. I hope the next storm you dance my friend. Hugs!

  15. What a beautiful way to look at it all! I wou
    ld not give in to a cane until I fell one too many times. Then the scooter comes along and as hard as it is to use it I too am in the land of the living!

  16. Nicole,
    I definitely understand your position — Thanks for sharing your dilemma — one that I share. Living in the space between walking unassisted and using any kind of device (I am currently in a scooter too) is not an easy place to be, but I am happy to read that you are bridging the gap without begrudging your life journey. With much help from P/T, I recently was able to walk with a walker more than 20 feet for the first time in over 4 years! I recently wrote about that in my own blog — check it out at http://www.divaonadetour.wordpress.com Good luck to you — see you in the aisles at Wal Mart!!!!

  17. love it! I’m with you… using a walker mainly, but definitely a scooter for shopping. one question… did medicare pay to adapt your car to transport the scooter?

  18. Nichole – You speak with words of great expression on light….you found the light of this conflict….and what a wonderful way to live!!! I too think about “will it always be this way” and I tell myself this life is not over, and anything is possible as long as the life is here. However, you are so correct, in admitting our lives with MS will continue to be subject of things we will want to resist, but finding the bright spots, the opportunity, the light in the subject, the inner light you possess to help all of us understand that life is a gift, no matter how it is given. You are a true inspiration and as a fellow MS woman who has felt all the things you described above I commend your courage and your determination to move in the direction of inspiration!

  19. It is interesting how we both in our posts today talk about there being no statute of limitations; in your case, about being able to walk again; in my case, about how we define ourselves while living with this illness. Denial, hope or faith? Maybe a combination of all three.

  20. Yes, Nicole. There is a sense of mourning for those parts of the body that are giving us “trouble”. I always heard (yet haven’t started) how powerful keep a journal of listing 3 things a day that you are grateful for. At the same time, I also understand what it is like, at a young age, not to have parts of your body cooperate with you! Well, as you and I know, having MS means keeping our inner strength intact. So while I am still mourning those parts of my body that are troubling me, I WILL start a journal of things I am grateful for. Number One at this very moment? Meeting you and reading your extraordinary candid views on your blog. Thank you, Nicole!

    1. Cathy,
      Wow, I’m speechless. I believe this blog has helped me as much as it has helped my readers. I feel responsible for the type of energy I release to the world. Grateful journals are awesome! It really helps to move through the mourning. To put things into perspective.

      1. I”‘m so glad I found your blog. Just knowing there are so many others who have hit the SP stage and have so many of the same issues. Some days I wonder how I will ever be able to keep going. Some days I just feel so bitter. Why do I have to wait in the van while my husband goes into the grocery store, and yet folks 30 years older than me have no problem walking at all. Why do I get so upset when others use the handicap stall when all the others are empty. I usually have a great attitude and thank goodness I have a great sense of humor. I feel like the girl I was has left the room. It’s like I’m greaving for myself

Leave a Reply

Your email address will not be published.