When the road seems broken

I fell asleep last night in my recliner. I just didn’t have the energy to get up and make my way to the bedroom to climb into bed. I’m thankful that my recliner is comfortable. I didn’t wake up with any neck cramps or unusual body aches…at least none different than my normal MS aches and pains.

It would have been wonderful to have awakened to a life without Multiple Sclerosis. I dream about that sometimes. I think it’s more wishful thinking for me than anything, but who knows, if not today, maybe tomorrow. There’s always hope for tomorrow.

And even if a future cure won’t give me back my mobility due to continued atrophy in my brain and spine, if it will help the newly diagnosed patients or those with less progressive types of MS, I would gladly jump for joy…even if only from the inside. I would celebrate along with everyone. That would be a monumental day.

I never grew up dreaming that I would have a life with a chronic illness filled with constant weakness, problems and pain. I don’t think anyone does that. On career day, Multiple Sclerosis wasn’t even an option put in front of me.  I wanted to be a teacher, a singer and a graphic designer. What a crazy combination, right? I would be able to sing and illustrate my way through a classroom. (grins)

Now, I don’t speak well enough to teach, my voice won’t squeak out a proper note to something as simple as Mary Had a Little Lamb, and my color clarity is all screwed up causing my art to be a bit off. But you know, I still use those skills. I just use them in different ways.

My speaking has become best understood in its written form. Writing my thoughts down gives me enough time to pause in order to keep from jumbling things up too bad. I still make a ton of writing error, but they are easier to correct than losing my train of thought in the middle of a conversation.

Singing is now a long past memory and my hands are much too weak to play the guitar. (I was a classical guitarist at one point in time.) When I try to sing, it sounds more like a wounded cat than an intelligible song, but that doesn’t stop me from humming a tune when my heart is glad or from enjoying the beautiful music others create.

As for my graphic design skills, it just takes me a whole lot longer to create something that I see in my head. I find that I have to rely more on learned color theory than my actual eyesight. That makes it a challenge, but somehow I still produce great work.

Because of MS, I have learned to appreciate the things I am still able to do. I can’t let the fact that I can’t do something get me down. There’s always a way if I get creative enough.

Don’t lose hope on finding an alternative way to use a skill you’ve built out of passion. Never stop pursuing your dreams just because Multiple Sclerosis got in the way. MS may have ended your career, hobbies, or talents, but don’t let it stop you from dreaming.

Get creative and never give up, even when your body limits you. Give yourself the needed time to grieve your losses but never lose the ability to dream. Those of us with disabilities are some of the most creative geniuses around. Just look at how well you have already adjusted your way of living  to compensate for a weakness. Some of those things you do are incredible inventions.

Remember…your body’s weakness isn’t your failure. It’s simply a stepping stone to a new way of doing things and a better you. You are stronger than you give yourself credit for.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

33 replies
  1. Kit Minden
    Kit Minden says:

    I lost 5 octaves and my guitar, too. I have regained 1 octave though, working with diet and nutrition. I also got enough brain back to tutor and I love it. I can’t do more than 1-2 kids on a given day but it feels great! Be glad to share what I do – it’s good to see others fighting MS and getting a little better with it 🙂

  2. Melissa B
    Melissa B says:

    This is the one thing I fear for when I get older, I am 20 with RRMS. I’m a budding designer, off to do Fashion at University in September, just hoping if I lose my dexterity, I lose it later rather than sooner 🙂

  3. Leslie Beaver says:

    Fine piece. Heartfelt and honest. Can we do as we did before our MS? Of course not. I am actually relatively fortunate as I can still walk (with cane) and talk. But I no longer work or drive and am unable to read books. A great personal loss for me, a voracious reader previously. With degrees in history and English. But things changed and I adjusted. Not my choice of course. But my reaction IS my choice. And I chose to be positive.

  4. Jane
    Jane says:

    I feel worse for you with such talent than for myself. I can do some artsy things but nothing great. A musician has only lived in my heart. To think your external talent is stilled is a tragedy.

    So glad you still are able to let your light shine.

  5. Aileen Brown says:

    Brilliant as always I was lucky in as much I wasn’t diagnosed with PPMS until I was near the end of my career but like you I still dream and get angry that it was cut short but because of you I am a lot more positive cleaned out a large cupboard should have taken a few hours but a day and a half later I finally finished – exhausted but elated especially as I didn’t ask for help

  6. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I have found that I have done a lot of things since my diagnostic of MS came through. But also how things lasted for me. Like doing presentations for the U3A group lasted me 6 years, my time at Community Patrol lasted 7 years, my painting time was over a solid 5 years 9I;ve done about 180 paintings in that time). So things have changed but times haven’t
    It comes down to accept the end of a process not dwell on the fact you can’t do it anymore I am still involved in our mainly music group an that is a good time to spend with little kids.an their mums anddads.
    All the same time spend time with the things you feel that you are good at and don’t despair at the things you can’t do.or that the end has come. Just look around and something will show up.Keep your options open.
    Sounds a bit like an employment pep talk. lol

  7. Amy
    Amy says:

    Your writing voice is beautiful. My recliner/bed is named Roger…does yours have a name?

  8. Rachel Cytanovic says:

    Penelope, this is one of your best articles ever. It really hits close to my life. My first major attack happened about six months before I finished my PhD in music. At the time I was teaching piano lessons to work my way through school. I had to quit that when I became afraid to say, “Do it like this,” for fear that I wouldn’t be able too demonstrate my instruction. So there I was with a PhD and unable to play the piano any more- no teaching, no concerts. Now I play for church choir sometimes, with my right hand. Fortunately I am still able to write music for the choir and they are eager to sing it. That is good. Sometimes I am able to direct the choir. Sometimes I am not.

  9. Leslie
    Leslie says:

    I love your writing voice Penelope…it is Perfect!
    It’s taken me a long time to understand that grieving my losses is important to finding peace. To me, grieving the loss, meant I’m okay with the loss..I definately am not! Now I understand now that it’s really accepting what I can’t change…then that brings me to that place of creativity that you talk about Penelope. Where we take a challenging problem, like putting those socks on, or getting into a friends car that’s just a bit to high, and come up with a workable solution. We are all Masters at Solving problems! I’ve learned to pat myself on the back daily…good for my mental wellbeing and stretching those upper arms!

  10. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    “Alternative Ways” now part of my job description. The things you can create. Thank you for your words.

  11. Marcus Brown
    Marcus Brown says:

    Your post was spot on Penelope! I can relate to much of what you said in your post. I used to play the piano and played in a band at one time. I even gave up DJing because of the strength that’s required to lift the equipment, the memory required to remember your songs and speech challenges. On the bright side I can write and I do.

  12. Nancy
    Nancy says:

    You teach us with your writing with every post. You have an incredible talent for depicting life with MS, and nailing it every time. Thank you for sharing that with those of us who have different skills or gifts! Sending hugs to you…

  13. Sara Reitz says:

    I understand completely!!! I had goals that I can still meet but it’s a way longer tougher road and I had to tweek the goals a bit. Also some of my favorite hobbies which kept me sane are just too risky or not doable anymore. Yup I get how you feel. Stay strong x

  14. Lynlee Tomos says:

    Thank you, Penelope. I really needed that today, as I’m sure others did and will. Once again, you have blessed me with a renewed hope. You sharing your journey is much appreciated. Love and prayers ❤️

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