NoMOreNMO’s 5K Raises $30K for NMO Research
“Mom, there are no words to tell you how proud I am of you!”
Riley Reimer
After her most successful event to date, the Founder of NoMOre NMO, Nancy Reimer, reflects on the past five years since her son Riley’s NMO diagnosis and shares her story in her latest blog post.
It was in that moment that it all made sense…I realized that it was all worth it and that it really, truly mattered. All that I had worked for, all the stress, the hurt, the struggles, faded away in that moment with that one statement…why?…for no other reason than it mattered to him, and he, after all, is the very reason it all began…
Yup, 5 years this event has been happening…we have just celebrated our 5th Annual 5km Walk/Run for Neuromyelitis Optica (NMO) and it was amazing! I must interject here with some brutal honesty. The last couple of years have been very difficult for me personally. I started to experience some pretty scary symptoms in addition to the chronic pain/chronic fatigue that I’ve been dealing with from a car accident in 2013. It has been a real struggle for me to admit that I am not the strong warrioress that I may appear to be sometimes, but rather I am, in fact, human (shocking but true!). This is where the living constantly in a state of fight or flight mode reared its ugly head for me. I had stuffed so much of my feelings and emotions around Riley’s diagnosis and what he endured at such a young age, that what I had stuffed began to overflow. I was having vivid flashbacks to his times in the hospital and I started to have horrible anxiety/panic attacks. My point in sharing this is by no means a cry for sympathy, but rather to expose the dangerous repercussions of not allowing myself to deal with my emotions when he was first diagnosed. I am learning and say often to others who struggle, that it is ok not to be ok…it’s ok to feel hurt or anger or depressed, but it becomes not ok when you set up your tent, unpack your bags and camp there. I personally do not have NMO, but I can tell you that it has affected every single area of my life in one way or another.
In March, while at the NMO Patient Day in LA, I experienced an epiphany moment where what I have been dealing with…basically why the journey of NMO and the journey of struggle from the car accident had overlapped, finally made perfect sense. All that I’ve experienced…pain, fatigue, anxiety, depression etc. are all things that Riley has experienced or is experiencing. It occurred to me that maybe the very reason I have had a rough time is so that I would have a better understanding of what he has and continues to deal with. I’ve always prayed that Riley’s NMO be taken from him and given to me…perhaps in some way that prayer was answered…not that I have been given NMO, but in experiencing what I have since the accident, that I would understand what it’s like to live with NMO, and in knowing and feeling this, be able to bear some of the diagnosis for Riley.