Not What We Expected
You pour everything you have into a project or goal for months or years, only to have the universe seemingly attempt to thwart your efforts in what feels like an act of deliberate cruelty - except there’s no one to blame because it’s all random. Welcome to our start of 2022.
When we launched Distance To Empty in February after working on it all fall and winter, we had no idea we were days from facing yet another set of serious health struggles that would impact at least the rest of the year, and reinforce why we started Distance To Empty in the first place.
Despite being vaccinated and boosted, and taking all the precautions to stay safe, we both contracted Covid in late January. We’ll never know how we got it because we’ve been so careful. Fortunately, we both got through it, with Gino needing to receive the monoclonal antibody infusion due to immune suppression from his 2017 kidney transplant.
After ten days, we were testing negative, and that’s when things started to rapidly decline for Starla. First, it was a wildly erratic heart rate and swollen left arm that led to scans for blood clots and heart function in the ER. They showed clear results. Next, her hands went numb, and she started to lose muscular control of her left arm and hand, nerve/numb/tingling/burning sensations and weakness started to affect her entire body, and breathing was more and more difficult. It was an all-out fight with the medical system for Starla to even be seen, much less heard. After fighting to get into a neurology appointment, a neurologist told her because she is a professional athlete she was surely high strung, and most likely manifesting these symptoms due to being anxious. Anyone that knows Starla knows that anxiety is the opposite of how she lives her life. As you can imagine, this did not go over well. This was the beginning of an all-out offensive to seek out a medical team who would listen and actually work as a team, and this landed us in Los Angeles due to help from dear friends who happened to know the right people there.
When you haven’t been on a plane since 2019, but you love to travel, you don’t have fantasies of your first flight being to fly to a crowded city to find answers to a mysterious neurological illness that is rapidly degrading your ability to function. We’d envisioned our first flight would maybe be to Australia, Hawaii, or Belize rather than to specialists in LA, and ultimately the emergency room at Cedars Sinai followed by nine full days in the hospital.
Multiple MRIs found a lesion on Starla’s cervical spine on the C5 and C6 vertebrae, along with potential spots on her brain that could lead to an MS diagnosis, but this diagnosis is still TBD, and could take months or years, if ever. Blood work also came back with Antiphospholipid antibodies posing a potentially dangerous blood clotting problem. Starla was diagnosed with acute transverse myelitis first treated with a three-day course of steroid infusions, hoping to calm down the autoimmune attack, but her health continued to decline, and she was losing control of her legs. She couldn’t close her eyes without falling over, couldn’t get onto her tiptoes, and couldn’t walk a straight line. At this point, she was admitted into the ER and over a 9-day stay, she received 5 treatments of plasmapheresis to remove the attacking antibodies. Plasmapheresis, or plasma exchange, is a process where they put two IVs (one in, one out), and are able to separate your blood into its various components. In Starla’s case, they removed her plasma holding the antibodies that were attacking her body and put the “cleaned” blood and a plasma substitute back in. She then received an infusion to suppress her immune system, and to prevent further production of the “misguided” antibodies. Little bastards.
Now back at home, with the help of the LA medical team we have built a solid team of doctors in Colorado who are taking over Starla’s short and long-term care to get her stable, and, hopefully, eventually back to racing. It will take an unknown amount of time for the daily symptoms of nerve damage to heal, for her to regain strength, and to diagnose the underlying autoimmune condition that was triggered by Covid. The day-to-day is a new experience for Starla, for as long as she can recall she has had rigid structure, a schedule that separates her days into blocks, of training, recovery, work, and daily chores and tasks. Now she wakes up to no alarm, she assess her energy and pain levels. Because of where the lesion is on her spine (base of her neck), whenever she looks down it triggers an electrical shock sensation that shoots into her legs. She has roaming vibration sensations, and sensations like sunburn on her legs, feet and sometimes torso. Her hands are still hypersensitive to touch, with ever changing sensation and sensitivity that becomes more intense with an increase in her body temperature. She is learning to navigate what she can do and when she needs to ask for help. We are taking walks, and she has gotten on the trainer a few times to spin her legs and remind her muscles what they have been trained to do all these years.
From Starla:
"In some ways I feel at peace, maybe even free. I’ve never not had a schedule, which was a longer term goal I was working towards. I’ve always had internal and external pressure to perform, to produce work, or to show up and be something or somewhere for someone. Now, I’m living minute by minute, focused on healing my body and learning to listen to it. I have spent the last 15+ years training my mind to ignore pain, to push through in order to make gains, and to quiet my mind when it is screaming at me to stop. I’m learning to listen and be patient, while preparing for what is next. To be clear, this has all been traumatizing, and letting go is hard. Seeing my body change, the hard work that I put in for the season, turned to trembling muscles and a soft belly, it’s hard to love my body in this moment. I’m covered in nasty bruises from the infusions and blood thinner injections, and getting softer every day. It has been so hard to watch the race season kick off, and know all the hard work I put in to build the Distance to Empty racing program will not be realized. I received an email from Leadville Trail 100 MTB race notifying me of my corral placement (starting position); in big bold letters it read, “GOLD.” I am both beyond proud to have done the work to get that starting position, and heart broken I will not get to take to the start. I never fully believed I was capable, and am disappointed I will not get the opportunity to prove to myself that I belong. I experienced a very clear moment when I felt I was mourning the loss of myself, of who I was, and who I believed I could be. I will never be that person again, with the perspective I had. But another version? Yes. I am hopeful, I remain positive, and strong. I am feeling the sadness, fear, and anger that comes with any chronic illness, but I choose to live with joy in every moment as much as possible. I haven’t lost my sparkle, my fight, or who I am at my core. I’m learning to navigate life as I know it now, and continue to dream of what’s possible".
This has been a life-changing experience for us that will take time to process, heal from, and eventually put into words. So many people have reached out with similar stories of having to fight for their own healthcare, and we believe these are stories that need to be told with the hope of empowering others to fight for the care they need, to trust that they know their bodies and that they aren’t alone. We are committed to our mission to growing awareness around everyone pursuing their own Distance To Empty more than ever. We get one go in life, and we’ll live it to the max.
Starla & Gino