It’s 8 AM on a Saturday, and rather than sleeping in as you might expect for a college student, I’m lacing up my running shoes and getting ready to bolt across town.
However, this weekend, when I opened my blinds, I almost pulled the covers back over me; I saw it was raining with no sign of stopping.
I’d never run in the rain before, and the mere idea of it caused the shivers. I had so much homework, and the only time I had to spare was in the morning. But I love running so much. How could I let a little bad weather keep me from it?
I realized that if I waited for perfect conditions, I would never run. If I waited until I truly felt like going, I would never run. If I waited until I was completely prepared, I would never run.
So I decided to run in the rain…
Many people have asked me why I’ve continued to go to college in spite of a mentally and physically crippling neurological illness. They wonder why I continue to chase dreams that seem outlandish even for a healthy person. Why not at least take a year off and wait until I’m totally better? Why not wait until I stop having flares? Why not wait until I can get the most out of my educational experience?
I don’t know when it will ever stop raining, so if I’m going to run, it might as well be now.
My life over the last three years has been pouring. Nothing has been the same since the day my OCD hit me like a train during my senior year of high school. It would have been perfectly reasonable to defer college. Even now, I could almost justify being at home, considering my ongoing lack of concentration and other executive functions.
Yet no matter how badly I wish it would stop raining, I have no power to clear the skies. For better or worse, my life is one of rain for now—but I can still choose to run on in spite of it.
I only have one life, and I have to make the most of the cards I’ve been dealt. If I stay indoors and wait until I’m well enough to start living and going after my dreams, I may never do anything at all. How could I know what “healthy enough” is if I’ve forgotten what that fair weather even feels like? This disease has taken so much from me already, and I don’t want it to take anything more. So I have to keep dreaming and keep pushing forward and keep living as much as I can, even if I get soaked out in the rain.
I may work three times as hard as everyone else to produce the same results. I may have to live at a much slower pace than I would like. And there may be some things my illness prevents me from doing, but I do my best to focus on what I still can do. As long as my heart keeps beating, I have to keep running, in the hopes of finding joy and purpose in the middle of the downpour.
No, it’s never been easy to try to live my life while fighting PANDAS. There are plenty of days when I find myself wanting to go home and stay inside where it’s comfortable and warm, rather than working so hard and getting drenched by the rain. And certainly, I would never run if my symptoms were a hurricane or a thunderstorm, because when the weather is bad enough, it simply becomes unsafe to run. But this is not my situation anymore, so I have to keep going as far as possible.
I run in the rain because I know that every stride, no matter how slow or difficult, means I’m overcoming something beyond my control and that I’m doing what I can to take back everything I’ve lost.
I absolutely LOVE this post. Your writing is amazing, and your message is loud and clear: PANDAS is not going to win. My son faced similar choices when he had to decide whether to return to the college he loved, even though he was advised not to when he was in residential treatment. Like you, he wasn’t going to let OCD win. I wrote about this years ago: https://ocdtalk.wordpress.com/2011/11/02/keep-the-bar-high/.
Keep running, and we will keep cheering you on!
Thank you, Janet. I’m glad you enjoyed my post so much. I read your post, too, and am glad your son was also able to keep running in the rain towards his dreams… Thanks for cheering me on!
You continue to amaze me and give me hope. My son was accurately diagnosed with PANS in Sept 2012, after 4 years of (mis) diagnosis and (mis)treatment with psychiatry. He was diagnosed bipolar, Tourette’s, ADHD, etc none of the drugs helped. He is better, slightly, but the cognitive impairment and executive functioning continues to be a significant challenge. He is 14 and his sudden on-set occurred when he was 8. Permanent brain damage? I refuse to believe that. He will get better, he will thrive…someday soon, I hope.please keep writing and sharing your experiences. You give us hope.
Hi Alisa! I’m glad you are enjoying my writing so much. That means a lot. I’m sorry your son went through all those years of misdiagnosis and improper treatment, but I’m glad he’s doing better now. My doctor has always said to me that PANS does NOT permanently damage the brain like other forms of encephalitis can. Whatever changes happen as a result of PANS are all reversible, I’m told. And unfortunately, I’ve heard that the executive function problems can be one of the last symptoms to go away. But hang in there… He will get better!