bandages

Covered in scars

If you could see my insides, you would see scar after scar after scar. I guess it makes sense that Multiple Sclerosis actually means Multiple Scars. You see, the nerves in my brain and spine have been chewed to bits…literally. Because of that, some of my nerves are short-circuiting and signals are getting crossed causing terrible chaos in my life. I guess you could say I’m a real live wire.

I have some nerves with such extensive damage that repair cannot be made. In their place now exists a black hole. A scar so deep that nothing could ever live there again. If you took the time to learn of my scars, you would hear about what life is like for me. You would hear of the pain I endure, the way my brain confuses thoughts and words, how my tired is different than most people’s tired, and how parts of my body have gone numb and lost their ability to function.

But do you know what else you would hear? You would hear about how strong I am and how at the end of the day, I’m still standing (even if only on the inside). I won’t quit even though I’m covered in battle scars. Those scars are my story…they are my life.

You may see me and think how amazing I look with the smile I wear or the cute outfit I have on, but if you took the time to really get to know me, you would see my insides and realize that my pain is real and that there’s beauty in my scars.

I may not be able to do the things you do because my wiring is a jumbled mess, but just because you can’t see what’s happening inside my body doesn’t mean it’s not there. I wake up each day to a fight…a war. Not one that I chose, but one I must endure. At times I am battle weary, but I will never be a quitter and I will never lay down my sword. I’m a warrior that way.

My scars are laid out like a constellation visible by an MRI. They shine bright even though they are hidden in the dark. When I pause to look at the stars in the nighttime sky, I see amazing beauty as I watch the lights twinkle and glow. But did you know stars are just broken pieces of matter? They are the scars of the universe. And yet even though they are caused by tragedy, they give hope to millions.

Today your sword may be heavy and your body tired…but you will go on. Each step that you take is a victory. Each muscle you move is a triumph. No mater what the day holds, you will not be defeated. You are a winner covered in scars bringing hope to others without your even knowing it. If I can endure, if I can keep going, if I can hold on…then I know you can too. Together we create an amazing display of sparkles in the universe. Together we shine.

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.

30 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I could say ‘Shine On you Crazy Diamond’ but that was fo Syd Barrett but the sentiment is similar enough to use. What you have given us encouragement to carry on. I still claim I’m not brainless and can prove it by the MRI scan copies I have. There is still a lot of good left there so I’n trying to use that the best way possible.

  2. Pam Harper Houser says:

    Yes, today I was awakened by a phone medical call reminder from a friend…,who had been trying to get me for 15 minutes…I was still in bed sound asleep at 9 A.M. I never heard the phone….my service dog even let me sleep. I had a bad time getting to sleep…went to bed at MN to get up at 2 not sleeping, fell asleep in a chair…then 1/2 hr later to bed to wake up at 9:30. WOW!! Now, it’s 11 and my head hurts and I’m restless. Ugh! Bad day. No real pain like usual, just dragging with some vertigo. ???

    • Kathleen Sweatland says:

      Hope your day turned around, its hard to deal with this and sometimes it just doesn’t seem worth it to get out of bed, but it always is. Besides if you don’t get up and get dressed you are sure to have unexpected company 🙂

    • Stephanie Beck
      Stephanie Beck says:

      Glad you finally got to sleep and even happier that your dog sensed your need for extra sleep, that he or she let you sleep.
      I have a lesion on my sleep center, my dr says that is a rare place for a lesion but MS doesn’t seem to know the meaning of “rare”. My sleep is ALL MESSED UP. My family in NO WAY tries to understand this nor do they accept it as the reason why I might be asleep at 2 in the afternoon. Because of the lesion my drs have worked hard to find a regimen that kinda helps with my sleep but more nights than not does it work. Last year I went through a 3 month period of sleep walking and I fell 19 times. I would fall, hurt or not, and then go right back to sleep wherever I fell. Most of the time my 14 year old son would hear me and come find me. The last big fall I had, I pulled the glass plate out of the microwave and it shattered everywhere then I fell on the glass and was sound to sleep when he found me and went to wake my husband. When my husband, Jeff, got to me, he thought he had woken me up and he stood me at the end of the bar so he could help our son get the glass up. I wasn’t awake and down I went while hitting my head on the countertop and then falling all the way to the floor. The next morning I was so achy and felt bruised all over. I called and asked him what had happened during the night and he proceeded to tell me about the fall, the broken glass all over the floor and me and then about me falling again. I had no recollection of anything he was telling me. At that point, I called the dr and he began a 3 month challenge of finding a regimen of meds to stop the sleepwalking and to help me sleep and he also made me get a lifeline alert system. The thing is, even when I still have an occasional episode of sleepwalking and falling, I’m asleep and don’t know to hit the button.
      My family loves to get together and talk about how much medicine I’m on and how they feel I’m over-medicated but they’ve never had to see me sleepwalk or find me after a fall. They are in complete denial of most of my MS symptoms and feel that I am just seeking one more drug to add to my long list of meds. They have never tried to educate themselves about MS or any of the symptoms that I have. My mom is in denial the most. When I have a relapse she never calls or comes around to try and help or just be there for me. It use to make me mad but my bitterness was eating me alive so I had to get to the point of realization that she is my mom but she’s in total denial of my life that I live everyday, I no longer ask for help because I can’t handle her giving me more excuses of why she can’t help and I just try to not talk about anything MS related. I had to remind her just last week that I have the lesion on my sleep center when she was giving me a hard time about being asleep at 3 in the afternoon when she called.

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