It’s early September 2018. A few weeks ago I was running 7-minute miles and training for an ultramarathon named Badwater. It describes itself as “The World’s Toughest Footrace”. And as a 135 mile race from the lowest point in the continental US to the highest point, that very well might be so. I got into that race by winning two Badwater qualifying races in 2018. I was also invited to run at Desert Solstice, a 24 hour race that would give me the chance to qualify for the US National 24 hour ultra team. Overall, the past two years have been pretty good in my running career.
Those 7 minute miles were three weeks ago. Three days ago, I could barely stand up without help. Last week I almost fell down the stairs because my left leg wouldn’t cooperate. Walking takes so much effort that I need to nap. My face tingles on one side. My pinky is numb and my hands burn. I can’t turn my head without getting so dizzy that I almost throw up.
What’s going on? A little over two weeks week I suddenly began having a strange weakness and tingling in my left leg and foot along with a pretty severe loss of balance. I saw my rheumatologist and was sent for an immediate MRI of my brain. I wish it had been of my knee or my shoulder or something that would be able to heal quickly. Unfortunately, according to the MRI I’ve been having small strokes. And the last stroke was significantly larger than the previous ones. The white matter of my brain has the appearance of an 80 year old.
Some background: I was diagnosed with an autoimmune disease called “systemic lupus” and another called “antiphospholipid syndrome” 16 years ago. We knew something was wrong after I had had three miscarriages. My immune system was literally attacking my own body. It took several years of steroids and even chemotherapy drugs to finally get these diseases under control. I lost my hair and felt every bit of sickness from chemo.
With the disease seemingly ‘under control’ over the past few years I’ve been feeling much better. Pretty good actually. I’ve been running consistently and performing well. I even recently told my husband I felt so good that maybe I really didn’t have lupus.
And then, out of the blue, it returns with a vengeance. Before it attacked my joints, skin, kidneys, and blood. This time it appears to be going all out against my brain…also the most vital organ that has the least ability to repair itself.
Antiphospholipid syndrome is common with lupus and can lead to blood clots. It caused blood clots in my placenta during pregnancy which caused a lack of oxygen and nutrition to the fetus. It is also common for this to cause deep vein thrombosis, pulmonary embolism, and stroke.
I’m scared. I’m angry. I’m frustrated. I have high goals for the next year in ultrarunning. Really high goals. I want to run 140 miles at Desert Solstice. I want a shot at being on the national team and traveling to Austria next year. And I don’t want to just complete Badwater, I want to be a top finisher. Everything I ever do I put my whole heart into and these are no exception.
But now things are different. Instead of going out on a 10 mile run with speed intervals, I have to practice walking in a straight line and turning my head without puking. I have to learn how to balance again. I have to make new connections from my brain to my muscles so they do what I want.
I have to start from scratch and build back up again. This will be a long, uphill climb. I’m thinking I’m at the bottom of Mount Whitney and looking up into the clouds where the Badwater finish awaits. I will trudge my way there one step at a time. I don’t quit. I’ve never DNF’ed in a hundred (or more) miler and this won’t be my first.
The strange thing is that running almost seems easier than walking does right now. After being almost bedridden with fatigue over the last week, I ran a marathon yesterday to support my brother Tom. My left foot was numb the entire race and I had trouble moving my left hip, so by the end of the race my right leg was hurting from the increased work. I lost my balance and knocked over a table of water cups. I stumbled around some. It might not have been pretty, yet I had a time that qualified me to run the Boston Marathon in 2019. I finished in 3:15.
I AM MORE THAN A RUNNER
Running has been an outlet for me, a therapeutic lifeline that at times has given me the purpose I needed to continue on this life journey. When I run I am free and alive. I have control…. control over my breath, my stride, my body. I feel strong and powerful. I feel capable and hopeful.
If you’ve ever been in a situation where you had no control over your body or what happened to it, then you know what I’m talking about.
What will I hold on to now if this is taken from me? Where will I go when I need to escape the unending pain? Being successful when I run gives me something to be proud of when I can’t find much inside myself.
My coach pointed out to me today something that is resonating pretty deeply as I lie here pondering all of these changes. She told me maybe all of this is happening so I have to find self-worth in things other than running. I have to see that there is worth simply within ME.
So I am trying to see that I am more than a runner. I am a mom who teachers her children to spread kindness, to accept and love everyone. I am a sister, a friend, and a daughter who cares, feels, protects, and loves deeply. A coach who strives to see others achieve their goals. A therapist who works to bring joy and a better quality of life to her clients. I am a survivor and an overcomer and a human being who desperately wants this world to be a safer and kinder place for all of us.
I am not just a runner. Maybe I have a lot more to give the world.