mail2

NMOtion Blog

Discussing NMO Research and Advocacy

Race of Joy, Race of Wonder

Jasmine Lellock ran in the “Race the Rhode” Providence Marathon on May 7, to honor her mother, Patti, who passed away from an autoimmune disease called neuromyelitis optica (NMO)A well-known advocate in the NMO community, Patti was a runner who had purchased a new pair of running shoes she planned to use to resume training after battling through multiple NMO relapses. Unfortunately, she never got the chance to use her new shoes. 

Channeling her mother’s spirit, Jasmine wore her mother’s running shoes, gaining a new perspective on what struggle means, mile by mile. Through her support network, Jasmine also raised over $3,000 for NMO research. Read Jasmine’s blog post, Race of Joy, Race of Wonder, as she recounts racing in her mother’s shoes:

“The marathon can humble you.” Famed marathoner, Bill Rodgers, recognized how brutal running a marathon can be: your feet pound on hard pavement for hours, your calves form tight balls, and your brain stops working properly. By the last few miles, you are limping along, praying for the suffering to end, fearful that you may not make it to the finish line.

I told her, “You can do anything for 20 minutes.”

By mile 24 [of 26.2] of the Providence Marathon, I feared I couldn’t take one more step, much less run for 20 more minutes. But I remembered when my mom started running, and I forced her to finish her first-ever mile. I told her, “You can do anything for 20 minutes.” She did it, and she even worked her way up to a 5K. Later, after being diagnosed with neuromyelitis optica (NMO), she explained that she often thought of my motivational words every time she had a treatment or procedure. They helped her get through many painful medical struggles over the years.

I felt empty without her in my life, afraid I couldn’t go on without her.

Her tenacity and her strong spirit helped her not just to survive NMO but to do so with grace, dignity and humor. For instance, her doctor estimated she would only survive five years, but she was strong for nearly 10. She lived to play with both of her grandchildren, to create a book of photography and poetry, and even to chase away a bear. Her persistence and strength inspired us all. She was the life of the party at her full moon gatherings, and she gave love and hope to her community and to the NMO online community, as well.

In her final three months, she was starting to feel a little better, so she bought herself a pair of running shoes. She planned to hit the trails again, despite her doctor’s warnings that she might not be strong enough. Sadly, she never had the chance to try them out; she died at age 58 this January.

I felt empty without her in my life, afraid I couldn’t go on without her. The day after she died, I found her shoes, and I ran one mile in them, trying to feel connected to her in some way, trying to run the grief out of my system. I sobbed every step of the way, but I somehow felt stronger. I decided I would try to run a marathon in her shoes. I wanted to run for her, to cover the miles she would never have the chance to run. I wanted to honor her struggle. While running a marathon is nothing like enduring the pain of her disease, it offered me a chance to experience (in a very small way) her perseverance through suffering.

So many people loved my mom and relied on her strength to get through hard times.

I was limping at the end of the race, but my mom’s shoes and spirit carried me to the finish line. I felt her with me, in the tailwinds pushing me forward, in the footsteps of my daughters as they ran with me for part of mile 21, in the cheers of my friends and family who sent me texts and emails before and during the race, and in the joy in my heart as I ran one of the fastest and strongest marathons of my life. I never felt such joy during a marathon, and it’s because my mantra was, “Running for My Mama.” Part of that joy was knowing that our friends and family raised over $3,000 for research to find a cure to stop this disease from taking our loved ones from us too soon.

I think of my mom’s experience with NMO not just as one of suffering, but one of joy and wonder.

So many people loved my mom and relied on her strength to get through hard times. Even when she was at her sickest, she was concerned for the wellbeing of her friends and family more than for herself. I know I have big shoes to fill, but I hope that I can do so by living a life full of strength, compassion and determination. She has taught me to live through grief and pain with joy and hope. Running in her shoes has helped me to see that the struggle is only a small part of the story; living a life full of joy and faith can help us overcome hardship.

Marathoner and coach Hal Higdon so eloquently captured the uplifting aspect of the struggle of the marathon, “The marathon never ceases to be a race of joy, a race of wonder.” I think of my mom’s experience with NMO not just as one of suffering, but one of joy and wonder.

 

 

Further Reading

Leave a Comment

  • Learn About
    Clinical Trials

    Learn how clinical trials work, whether or not you're eligible to participate, and the possible risks and benefits.

  • Advocate

    A disease is not rare if it affects you, so get the resources you need to join the community and get NMotion to solve NMO!

  • Give Blood

    If you know someone who has been diagnosed with NMO, please help us with blood samples and/or clinical data donations to our Biorepository.

The Power of Rare.

Power of Rare Book Cover

Victoria Jackson’s new book, THE POWER OF RARE: A Blueprint for a Medical Revolution, shares how a revolutionary model was created to speed discoveries that help empower patients and save lives.

No Thanks