Something Worth Fighting For

I must admit that yesterday, for the first time, this experience brought me to tears. I’m usually incredibly poised, but yesterday I lost it. My feelings were just too strong. Here’s what happened.

Given my recent flair-up of tendonitis in my knees, I’ve had to cut back almost entirely on my running to concentrate on my rehab. My physical therapist has designed an elaborate routine for me to do every day to hopefully get me back to running in time for the marathon.

I call this routine my “S.S.R.” (Stretch, Strengthen, and Roll). Yesterday, I cleared the living room floor, plugged my marathon mega-mix into the room’s speakers and dutifully began my S.R.R. routine.

As I’ve written previously, I hate stretching. So, after about 30 minutes of stretching, I was glad to turn to my strengthening exercises. But now I know that if there is anything I hate more than stretching – it’s strengthening. My hip muscles were so weak that they literally trembled uncontrollably as I performed the exercises designed to strengthen them.

So after about 20 minutes of pathetic shaky strengthening, I was thrilled to move on to rolling around on my styrofoam log. What could be more relaxing than this? Piece of cake. Walk in the park.

The rolling is supposed to loosen tight spots in my legs. My physical therapist has taught me four different exercises to help my legs. I’m supposed to roll in each of these four positions for about 2-3 minutes each, and when I find a “problem spot” I’m supposed to stay on that spot for about 10 seconds.

I was on the last of my rolling exercises when I found a particularly strong “problem spot.” As I leaned into the tightness, I huffed and puffed. I stared at the seconds on my stopwatch, wondering why time can’t fly. I tried to un-furrow my brow; I tried to think happy thoughts. This is good for you, Julie. This is good for you.

Intellectually, I know that this dull pain is bad ugly tightness leaving my body, yet in the moment – that didn’t make it hurt any less.  I felt nauseated and lost my ability to process these feelings with my usual even-keeled patience. Tears began streaming down my face.

When I finished this last exercise, I stopped crying, mostly because I was just so thankful S.S.R. was done for the day. I rearranged the living room furniture and put my styrofoam log away for the day.

Just now, I’ve cleared the living room in preparation for today’s S.S.R. However, as I continue on, I want to make one thing perfectly clear: if I were running this marathon “for myself,” yesterday would have been the end of the road.


I don’t say that lightly; I gave up running two years ago when faced with similar rehab for the same tendonitis in my knees. What’s the difference this time? I have a reason to move forward that’s much bigger than just myself. Narcolepsy is more than just “a cause” to run for. It’s the sole reason I’m running…and stretching, strengthening and rolling. Right now, I’m out of my comfort zone and I don’t know what will happen. Nonetheless, I strongly believe that running the marathon for narcolepsy is something worth fighting harder for.


  1. tflygare on March 11, 2010 at 5:18 pm

    Good blog today, Julie. You really spelled out the reasons you are putting yourself through all this training and rehab. It was very moving.

  2. Amelia Swabb on March 12, 2010 at 9:06 am

    stay strong!! we are all supporting you!

  3. Lillian R on March 12, 2010 at 9:25 am

    I'm giving you a big fist pump from NYC! Inspiring, that's what you are. You've always been at your best in the moments when your teammates most needed you to be. It's 9-9 in the 5th game and the team score is 4-4. Look at your crowd of supporters behind the glass, bounce the ball 5 times, remember to breathe and just keep going!

  4. Sze-Ping Kuo on March 12, 2010 at 10:08 am

    We are cheering for you from MD! Your dedication is inspiring. Using this forum to make others aware of sleep disorder / narcolepsy is truly wonderful. Because narcolepsy has no cure, it becomes a management issue. You have just demonstrated an important aspect of managing narcolepsy.

  5. Meatloaf on March 12, 2010 at 10:11 am

    You're amazing! Keep fighting. All your hard work will pay off in the end. We're all SO proud of you Can't wait to cheer you on. Love you. xoxo

  6. Anonymous on March 12, 2010 at 11:03 am

    Julie, I am so glad you are fighting for this issue! Keep going, don't stop. I know you are out of your comfort zone… You are an inspiration! Thank you

  7. Amanda McGrath on March 16, 2010 at 1:57 am

    You are a strong and powerful woman! I wish I had what you have – a lesser person (me) would've given up. xoxox sending you hugs filled with strength and determination

  8. Sandy22 on October 16, 2011 at 11:36 am

    I am so happy to see individuals with narcolepsy blogging. I wanted my husband, Bruce, to do this years ago. In the early eighties, when he acquired narcolepsy, at about age 43, there were very few support groups…most being in the Los Angeles area. We were living in Ventura, CA and traveling to the downtown area wasn't much of an option. We had one son and I worked.

    When Bruce found out he had narcolepsy he was worried he had a brain tumor. He first had fallen asleep after driving to a part-time job. Five minutes later he woke with his hand on the key. He had parked the car and went to sleep.

    His most difficult task, at first, was getting use to the ritalin. He was a mad fellow and it took some adjusting until he got the right dosage.

    Trying to find organizations for support was difficult. I was fortunate we had medical insurance…even there the professionals didn't really know what they were dealing with.

    My husband had a full case of it, including the cataplexy. He had vivid dreams, sleep apnea but the worst was over coming what others though when he would have an attack while in public. I am sure you know what that is like. Many people thought he was drunk as he looked like he was going to fall down and he slurred his speech.

    If you what to know more, from a wife's point of view, please visit a lens I created in his behalf:

    My husband passed away a year ago September due to lung cancer. If he were here, I am sure he would have loved to read your postings.

    Thank you for what you are doing to help the public become aware of narcolepsy.

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