Square Peg

At the heart of multiple sclerosis lies loneliness.

“I’m just a square living in a round world.” – Philip Phillips

One of the things I hate most about being sick is that I feel as if society has forgotten about me. It’s just so hard to fit in when I can’t drive, I get tired so fast, and going to the restroom is an adventure. So since I just can’t do normal things, it’s as if I’ve just disappeared. The old Nicole is missing without a trace and the new Nicole is so misunderstood that most people shy away from spending time with her.

So instead of just sitting on the sidelines waiting to be accepted I have to remember that there are a group of people who I always have a great time interacting with. They are those who are on a similar path as me. My MS peers.

At a recent MS Blogger summit I attended, I felt a certain comradely with fellow attendees. At the heart of multiple sclerosis lies loneliness. Sometimes, no one is there to dry your tears. No one you tell understands your difficulties. No one in your life can comprehend the emotional and physical pain you can experience every minute of the day.

But this weekend, I had a group of people who did understand. So in consequence, I welcomed the chance to be surrounded by folks like me. It doesn’t happen too often. So during the event at every meeting and every bathroom break that forced interaction was welcomed. And when I talked, I felt heard. This made my insides smile. The event reminded me how important it is to get out and mingle with peers.

So for one weekend, I was happy the entire time. Maybe because for the first time in a long time for me, the square pegs out numbered the round holes.

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.

40 thoughts on “Square Peg”

    1. First time I have read this blog. Wow sure hits home, (which I am always at)
      I don’t drive, no friends near by- gets pretty lonely! But I try to look at possitive, I am still mobile- lot of cognitive issues – also bi-polar and glutten intolerant which makes very hard to eat out, on rare occasion I get out.
      Looking for some connection to out-side world

      1. I’m gluten intolerant too, as well as vegan. So eating out is almost out of the question. There are very few prepared foods at the grocery stores I can eat. I have to make everything from scratch, which is difficult since I don’t have transportation, can’t walk one step, and have very limited use of my hands and arms. I guess I’m lucky to have a few social activities right in my neighborhood like a swimming group and a book club.

  1. I so understand what you so eloquently wrote. I have RRMS and have been in remission for 3 years BUT I am bipolar and often think I am alone in my struggles. I know I am not as strong cognitively as I was 10 years ago and I am missing out on a lot as I battle with MS fatigue so don’t socialise too much and yes I am so lonely. I have two chronic conditons that I fight with every day. But we just buried a work colleague who succumbed to Cystic Fibrosis – she was only 39 and I try to learn from her example. I love that I can come here every week and be a witness to your daily struggles and the fact that you always find something positive to give us – I really do admire you Nicole. Bless you and thank you.

  2. Hi Nicole, I’ve been following your blog for some time since learning about a friend of mine who has MS. I do not have MS, I’m just a concerned nurse who would love to see more research toward a cure for this horrible disease. I’m sure you keep up with the most current literature so this article may be of no use to you; however, I wanted to share anyway. Best of luck – stay as strong as possible! God Bless you.

    Striking a Nerve: Allergy Drug Tested for MS

    Published: Feb 6, 2014

    http://www.medpagetoday.com/Neurology/MultipleSclerosis/44165?isalert=1&uun=g743702d703R5910797u&utm_source=breaking-news&utm_medium=email&utm_campaign=breaking-news&xid=NL_breakingnews_2014-02-06

  3. Hi Nicole, I have to say I isolate myself. My disability is mental. I don’t work, drive, shop or have much of a social life.

    I have read 1% of PPMS patients are cognitively challenged. I unfortunately am one of them.

    To always be unsure of yourself makes it hard to fit in anywhere.

    I am glad you went to see all the bloggers. I have met up with members of an MS group I belong to. It was wonderful to meet people you have so much in common with. Take care.

  4. When will I be brave enough to introduce myself to “the new me??” I pose this question sitting inside my house not more than a dozen minutes away from the hometown on Philip Phillips.

  5. Nicole, this post addrsses so accurately how we fall off the grid…not meaning to, but not able to join in activities like we used to. I dropped out of BUNKO in our neighborhood because it was so hard switching to different tables after each round. I so enjoyed all the ladies in the group but finally, agreed to be a substitute when they “really” need one. It starts like this, slowly. I used to think nothing of going to a movie by myself during the day…now it is impossible to walk all the way into the theater and forget the refreshment stand! I am not strong enough to unload my scooter by myself…so I just don’t go without my husband…and we rarely want to see the same movie. Days go by without leaving the house and I am such a social person…(shallow and superficial) as my husband would say…so it is lonely. You are right when you picked a group with the same challenges. I am still focusing on what I CAN DO…but that list keeps getting shorter.

    This blog post is such a gift to all of us here. We know we are not alone and can relate to each other. Thank you so much for writing and communicating with such a command of the ordinary day to day of MS. Linda

    1. Linda, like you I can no longer go to most theaters. Sometime ago I met two friends at a theater. When we parted in the lobby, one went shopping and the other said, “You’re OK to go to your car, right?” and walked away. I could have cried but made it to my car OK and managed to load my rollator walker. Last time I went with my partner I needed to leave to use the bathroom and just sat on a bench after and didn’t even attempt the walk back into the theater. Thank God for DVDs and the Internet.
      I’m still going to Bunco. Someone from the group always carries my score card and water bottle from table to table for me. I’m not going this month because it’s at a house up a bunch of stairs that I can’t navigate.
      Thanks to Nicole we can talk about these things.

      1. Bunco was one of the first things I had to give up. Too hard changing tables after each round, and the ladies want to move FAST! I just slowed them down. Theaters are uncomfortable for me, to say the least. I’d much rather watch a movie at home. Or read a book, more likely. I can still drive, but need someone to load and unload my 300-pound wheelchair. So socializing is almost completely out for me. People invite me over, but not one person I know has a wheelchair accessible home.

  6. “At the heart of multiple sclerosis lies loneliness.” For all the reasons you cited, this is so true. Let me add another: through our body’s continuing deterioration, we are also increasingly made lonely from ourselves. The person we knew is altered. We have to reacquaint ourselves with him/her; in the process, yearning for his/her elusive company.

      1. Judy, I liked what you said. I am still having trouble with re-acquainting myself with the changed me. I don’t like the changed me. I want so much to be like the old me, very active, surrounded by friends, and happy, I don’t know how to get to that place though!

  7. Nicole, well said. I also think that weekend brought together not just a group of people with MS, but a group of people with MS motivated and determined not to let this disease get the better of them, no matter what it rains down. And that hope is contagious. Heck, I’m still feeding off that many days later! Thanks for motivating me, and all of us square pegs.

  8. Nicole, I so understand your feeling. I just returned from the MS Foundation’s Cruise For A Cause annual cruise. It was rough traveling across the country (from Las Vegas to Miami) to cruise but being with the group and meeting so many wonderful MSers made the struggle worth it. I felt like all of the arrangements were about ME! Even though I was on a ship of over 3000 folks I never felt like I did not “fit” in. I treasure those moments as I do all of the moments I get to create. I also smile inside for the moments other MSers create. KimC

  9. Square peg in a round hole… I often felt like that at work, having been part of a smaller company that was bought out by a larger one.. never did feel as though I belonged. The same is true of what I feel today.. I am still a square peg just in a different way. In recent years it’s been said by the ADA that 2 of 5 Americans has a disability. It’s also been found that this number is on a steady increase. Seems as though the square pegs are becoming more and more common now. The loneliness is still there, as there will always be those in this “round world” that just don’t get it. And that’s okay. That’s where we come in… just filling up the world with our new found squareness!!! Thanks Nicole for sharing your blogs, your pictures and your wonderful smile that reminds us all that being a little “square” is okay.

      1. I went once, 11 years ago. I felt so out of place I fled! It’s at least a 2 hour drive from where I live, and they hold their meetings when the traffic is at its worse. In the condition I’m in now, I’d never be able to get there. I only travel as far as my wheelchair will take me, which is about 1.5 miles in any direction.

    1. Please try and connect to a group. I dont know where you live, but can you get your Doctor or nurse involved in forming a group, if there is a need?

      1. I live in Hawaii and there are very few people with MS here. The group meets in Honolulu, which is where most of the population lives. My (ex) doctor is involved with the group. (I haven’t been to a doctor in years.) But I live way out in the sticks with no possibility of traveling that far. No real interest in making a trip like that either, it’s just too hard on me.

Leave a Reply

Your email address will not be published.