Twists and Turns

How does one prepare themselves for this?

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I am always in the toilet

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.

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.

32 thoughts on “Twists and Turns”

  1. I like the “twists and turns” – so similar to my blog that I had to check dates to make sure I didn’t subconsciously steal it from you :-). I’ll be back to read more.

  2. In “Babylon 5,” one of the characters says “One does not ‘make’ history. One can only hope to survive it.”

    My dad just had cataract surgery (made it through just fine). My mother just had nearly three feet of large-intestine removed (also made it through just fine). Both of them are actually in better shape for having survived the experiences. But “prepared” for them?

    You don’t really know what It is, whatever “It” is, until you meet it. Is anyone “prepared” for the first time they have sex? The first time a loved one dies? Really prepared?

    As Robert Heinlein said about riding a tiger: Hold on to its ears and try not to fall off. “Prepare” all you want, but you don’t really know what it’s going to be… until you get there. And when you do…

    Hang on for the ride.

  3. I totally understand the mad dash to the bathroom when arriving home. I know every restroom between Tucson and Bisbee and when I over extend going, I pay for it later. Thank you, Nicole, for your words on such a regular basis.


  4. I have done very well despite PPMS. The mental disability I have accepted, the physical disability awaits me. I don’t know how I will handle these changes. I have tried to prepare myself but I am scared of the future. I am a very strong woman and I don’t want to crumble when the inevitable happens.

  5. Prepare? I’m laughing! I had always been super prepared, what with my lists and organizational skills! My motto was “Failing to prepare is preparing for failure.” Then MS hit, and I certainly was NOT prepared for all I’d have to face. I still try to be organized, and I keep lists on the computer, but the trials caused by this disease have no preparation. I can still go potty alone (although, at times, my husband — another Tom — has to hold the door for me in public restrooms.) I do call him for help getting out of the shower at times. I think sometimes that HE is more prepared than I!!!

  6. NPR yesterday had a peace on how we are hard wired to never admit we are wrong even when we know we are. It evidently sets off parts of the brain leaving us feeling empowered in the moment. The point of the research was to get at why people feel this need for power. It was pointed out the stronger, more confident people coming out of the study were the ones who could long term admit a mistake. I think the same can be said for those confident enough in who they are to be able to ask for help with out feeling lessened by doing so.

    I think those who can ask for help have a strength I lack. I am terrible about saying I need help, and frankly the encroaching need some times terrifies me.

  7. You are blessed to have two incredible men in your life. That does not minimze your challenge but it must lighten the load. I hope your father is recovering well. As for being ready for this? Certainly one can make preparations, but though one should be reasonable and prudent, I prefer to dwell in a mental world that sees me as able-bodied and not the opposite. I don’t want to close off my world before it does that on its own, if it does it at all.

  8. Great post Nicole,
    I can definitely relate. When I was diagnosed in 2005, I truly thought this whole MS thing was a detour (hence the name of my blog, diva on a detour). Over the past few years, I too have come to appreciate this journey for what it is — my learning pathway designed especially for me – one I would not have chosen consciously, but one that is showing me many things: my strengths, my weaknesses, the power of gratitude and appreciation, the amazing strength of my husband and children, and what I truly can offer the universe regardless of my physical abilities. Keep up the journey my “sister from another mister”. Love to you and your husband and father!

    1. Linda, Thanks for reading and sending love to the men of my life. My dad is doing fine now. I got a question for you. When did you realize this was going to be more than a detour?

  9. Twists and turns.. seems like just as one concern is dealt with another is on the horizon.. I appear strong in my outward appearance, yet inside I am weak and scared. Scared when alone in my thoughts, but strong when in the company of my strongest supporter, my husband. As always Nicole, your topics reach out and seek a little something in me.. that I relate to whether I want to or not. And always on time.. thanks..Ella

  10. I remember when I was 1st diag in 2001 & went to an MS support group meeting. Seeing other MS sufferers in various stages of disability, I thought, I would never be like them. Flash forward to 2013 & I have become them! Confined 24/7 to a scooter, relying on others for help, I was so naive back in 2001! It is very humbling & I have learned that at first as I resisted assistance, now it is much easier to ask. God bless my husband, he sounds like your husband Tom; always there for me, helping me….a good man who I adore. It’s funny how you mention racing to the restroom; that’s me whenever we go out & upon returning I race into the bathroom, shoes, jacket, everything being torn off along the way. I can still get on & off on my own which is a plus. Have you considered one of those suuport things that go over the toilet? I have one (the kind without the toilet seat) and it is so much better to have the support arms on each side. Mine folds so that if you were going to travel you can take it easily. Look into it. Have a great day.

  11. Oh Nicole! Once again just thank you for putting it to words and making me feel less alone. On the news the other day there was a report that “the experts” determined that successful people became so because they kept their eye on the goal, not on the journey. Oh Nicole, I’ve been lamenting that knowing for me (us) it is just not the case. We are successful in our journey!

  12. Thank you for this very tender share about such a private concern for many of us. You share my resume thoughts on the way that MS has humbled my own pride in a slow steady way. Keep up the great writing!

    1. Marie C. Your comments echo mine, and I am so “happy & excited” for the first time in the longest time to have found this site. It’s the best one I have ever seen ..and over the years I have looked at many and never joined one of them. Nicole I think you are ” a very wise old soul ” -;)
      Big Hugs to you both
      Marie B.

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