A Long, Winding Journey

Hi there! My name is Chris Anselmo. I am a 31-year-old living in Westbrook, CT, and by day am a marketing consultant and freelance writer. Over the last ten years, I have battled a neuromuscular disease, Miyoshi Myopathy, that has taken over every aspect of my life. It is because of this disease that this site exists.

If I wrote this seven years ago, this would be the point where I would start complaining about how hard it is to deal with my condition. It took me a long time to come to grips with my situation and accept my physical limitations. Now? It is not your pity I seek. Trust me, I don’t want it. I can find you plenty of people who are deserving of sympathy and support. Instead, I ask that you listen to what I have to say, and if you can, take the lessons I’ve learned as I transition from ability to disability and apply them to your own life. For better or worse, I’ve accumulated a lot of wisdom for someone my age, mainly because I have been forced to see the world from a different perspective. It is through interactions with others that my life has meaning, and I find strength in battling this debilitating disease.

I don’t want to be just another inspirational story you read about and then forget. I can write until my wrists can no longer type, but if my words don’t inspire someone to improve their life, then my story won’t matter. In short, I want to help. If you are struggling emotionally, I want to help you overcome your sadness. If you are facing a health challenge, I want to show you that life goes on. If you fall, I want to pick you up.

The only way I can accomplish this is to lay it all out there, through my writing, for the world to see. My story may resonate with you, or it may not. My goal is to update this site regularly with observances from my day-to-day life in the “Through My Eyes” section. I experience a lot over the course of the day – good, bad, and sometimes, frustrating.

Other tabs include “The Adversity Playbook”, a series of posts where I talk about ways that I have dealt with adversity in my life, and “Daily Musings”, shorter posts on anything that inspires me to write on that particular day. I’ve also recently created a new section called “Long-Form”, which will be longer storytelling pieces that I like to write from time to time.

Lastly, on the right-hand side of the home page, you will see links to blogs I write for regularly, projects and initiatives I am a part of, and published works.

This site will chronicle my ups and downs, my trials and tribulations, my successes and failures. There are still going to be dark days ahead. I am at a precarious point in my life where I will probably lose my ability to walk in the next couple of years without some sort of intervention. I am one fall away from a serious injury. These fears loom over my head, but as Mark Twain once said, “Courage is resistance to fear, mastery of fear, not absence of fear.” I won’t let fear stop me.

This has been a unique, bumpy, strange journey, but it is one that I have every intention of enjoying.

“The greatest glory in living lies not in never falling, but in rising every time we fall.”

– Nelson Mandela

 

18 thoughts on “A Long, Winding Journey”

  1. Jon Muirhead

    Hi Chris,

    WOW! This website is AWESOME!!!!
    I have heard so much about you through your Mom Terry. She and I work at Town Hall in WH., CT for WHPS. Boy, do I wish you were around for me when I had to deal with my disability! Of course, I’m much older than you are and I’m dealing with things much, much better now. But I did not have the self-confidence that you do back when I was a kid. I’ve learned many things; self-esteem takes a long time to build. Keep up the GREAT work, Chris. Your mom is a GREAT, CLASSY lady and she is so proud of you!
    All My Best,
    Jon.

    Reply

  2. Thank you for your writing, Chris. I really wish that I could have heard you speak at the state house today! I am almost 52, and probably had limb-girdle muscular dystrophy 2A since I was 20. I wasn’t diagnosed until age 27. Guess that my family and I were in denial. But appreciate your sharing your story!

    Reply
  3. Brian

    Chris,

    I stumbled across your site while looking at a post on parenting a child dealing with chronic pain. Your site made me cry and gave me hope for the future all at the same time.

    I am the parent of a 13 year old child living with a disability that has gotten worse over the years. Our daughter went from walking to using crutches and now in a wheelchair. She has endured many years of chronic pain and 25+ surgeries in her lifetime.

    I have been sickened by rude comments or stares that both children and adults make when viewing my child’s deformity that causes her disability. She has now accepted this as normal, and tries to educate people about her condition. I have spent many nights crying myself to sleep when she tells me of yet another offensive comment made at some point during her day. Yet she takes it all in stride and it makes her stronger.

    Your situation gives me hope for her and her future, through her high school years, college and beyond into her chosen career. Thanks for sharing your story and the hope it gives a father as he looks towards the future for his disabled child. I look forward to following your journey as it is truly an inspiration.

    Reply
  4. Barbara Lievens

    Thank you Chris for sharing your life. I live outside Boston so know your college town well. I see Boston and all of outdoors diferently since becoming disabled. I’ll take strength from your blog. I have cerebellar ataxia and have much difficulty walking and many other neuro symptoms. Staying in the present is the challenge as you know. I am so thankful for my supportive husband and adult children and friends who accept me as I am. I admire your courage and will be reading your blog. Thank you so much and best wishes. Barbara

    Reply
  5. Caroline Grace

    Hi Chris!! I just read the article that NPR posted on Facebook. I just wanted to drop in and say you’re not alone! My twin sister and I were finally diagnosed with HIBM or GNE-myopathy in 2013. It is a similar disease where our body stopped producing sialic acid which helps in muscle repair and continual strength. We first started showing small symptoms in 2005 but both of us graduated from LSU in 2011 with barely any progression but within 6 months both of us had complete drop feet and continual rapid acceleration of atrophy and weakness. We are both contimplating wheelchairs at this time with the same hope for positivity but reality of frustration, anger and grief. I am so glad I found your blog and will be subscribing because if I know anything, it is hard to find contemporary individuals whom share, as it seems to me, similar diseases.

    Reply
  6. Mario Villarin

    Hello Chris

    Your story and life is very inspiring which I can relate to, I contracted polio when I was 2 years old I had to learn how to walk with forearm crutches and full leg braces just like Forest Gump. I had leg braces all throughout grade school and high school. I decided to get rid of them when I was in University where I met my beautiful and loving wife of 35 years, we have 4 grown up kids and 2 grandchildren.

    I decided at a young age that I will fight this dreadful debilitating disease and not be a victim. I learned how to swim, bike and scuba dive. Now that I am 55 years old, I am experiencing Post Polio Syndrome and it seems that polio is back with a vengeance. I had to go on long term disability after working for 25 years as an insurance broker here in Toronto Canada. I am now back to using forearm crutches and leg braces, I also have a scooter and eventually will be confined to a wheelchair as well.

    Yet despite this I continue to be active and I pray a lot, for strength, courage, humility, and guidance. Initially I was depressed just like you but I realize life is too short and we should always live it to the fullest, so don’t despair in using a wheelchair, because it will give you more freedom to move around and interact and see the world. Maybe someday I can come visit you and we can have a wheelchair race, until then keep up the good works and inspiring life, all the best to you and God Bless you.

    Sincerely
    Mario Villarin

    Sent from my iPad

    Reply

  7. Hi Chris,
    I too have MD, FSH to be specific and I wrote a book called The Happiness Toolbox: Finding happiness regardless of circumstances because of what I learned going through the health challenge and other life events. Just thought I’d share with you the book and to provide what I hope is another resource for people who struggle moving through life altering events.

    Reply

  8. I just read your piece on WBUR, and had to congratulate you on another well-written piece and thank you for telling it to such a broad audience! Well done, as always, and much appreciated.

    Reply
  9. Becky

    My husband has been losing strength and muscle mass in his arms and right leg over the last few years. He loses his balance occasionally. He is currently having pain in his right arm and thigh/knee area. He is in his early 60’s. He had a sister diagnosed with MS in her 40’s. I am concerned he may have a neuromuscular disorder.
    How did you get diagnosed? Any special tests?
    The medical providers in our rural area have prescribed Lyrica and narcotics.

    Reply
    1. Chris Anselmo

      Hi Becky,

      Sorry to hear that about your husband.

      My diagnostic journey is kind of atypical and unique in that I was actually diagnosed 4 years before I had symptoms. I was in a car accident in high school, and when they did a blood test at the hospital, it flagged that many of my protein levels (such as creatine kinase) were off the charts high. I went to an endocrinologist, then to a rheumatologist. They did a thigh biopsy of my leg and it determined that I was missing a protein called dysferlin. I was diagnosed by a pediatric neurologist that I had something called “dysferlinopathy”, a rare form of muscular dystrophy, at age 18, but again, with no symptoms yet. My first symptoms started when I was 21. I went to another neurologist and he confirmed that diagnosis. Ultimately , I had a genetic test done to find out the genetic mutations in the dysferlin gene.

      I’m not sure the best advice to give since every situation is different and I don’t know how MS works too well. There are muscle diseases that start later in life, so it is possible it could be that, but I am not sure. Have you seen a neurologist yet? I don’t know where you live so I don’t know the nearest hospital that would have a large neurology clinic. And if you do see one, and they aren’t definitive with a diagnosis or course of action, I’d see another one to compare opinions.

      It is worth pursuing though! If you need help through this process, feel free to send me an email, chrisanselmo@gmail.com. Maybe I can help brainstorm with you.

      Chris

      Reply
  10. Tanmay Gaonkar

    Hi Chris,

    I’m Tanmay, from India originally but currently live in Fremont, California.
    It is a mere coincidence that I found this blog via the ‘News at Northeastern’ website from a random post shared by one of my colleagues on LinkedIn. Having said that, I was for a short course at D’Amore McKim-Northeastern, Boston (2015 batch).. Hello co-alumni!
    Giving a read to your ‘About me’ section & the related video, it really felt so connected to this subject of matter. I recently understood that I have what is a type of Muscular Dystrophy (Beker’s), which is in the initial stages.
    I’m really finding this website helpful as a medium to relate & find motivation to overcome what may seem to be initial hurdles!
    Looking forward to read more & take a page from your blog.. I being an amateur blogger myself.. 🙂
    Also, if you don’t mind would love to connect & share experiences!
    Keep up the great work! More power to you, Godspeed!

    Warms regards,
    Tanmay

    Reply

Leave a comment