Pretty good advice, right? Well we were filled with all 3 of those things this past week when John brought a little package up from the mailbox. Inside the package was a t-shirt, 3 bracelets, 2 necklaces and a lovely note to my husband.
As you may or may not know John was diagnosed with Neuromyelitis Optica (NMO) when I was 7 months pregnant with Ella. Actually he was diagnosed with Transverse Myelitis, then misdiagnosed with MS….then thru total happenstance we found out that what John has is NMO. It’s a nasty little brat of a sister to MS, it’s rare, and where MS is not fatal, NMO can be and many have lost their lives battling this disease.
We battled thru the years with this disease, which landed John in bed for months at a time. There were times we weren’t sure if he’d ever walk again. And yes, there were times when I didn’t know if our daughter would have the privilege of having him in her life while growing up. I must have written his eulogy in my head a million times.
John and I dug in, changed our lifestyle completely and began battling this disease together thru diet and exercise. Western medicine made John incredibly sick so we decided to do this our own way and wow….it has paid off. John began running about 3 years ago and all of a sudden, he wasn’t sick anymore. No attacks for 2 whole years. Unless you have this disease, or know someone with it, you can’t imagine what a blessing that is. Unfortunately, NMO doesn’t like taking a back seat and John had some set backs. He can no longer run and his imbalance sometimes gets the better of him but his level of health is still simply incredible. We bike now, together, and it has replaced running for him and we have even begun trying to retrain his legs to run as we take a light jog around the high school track when we can. I believe he’ll be running races again soon. 🙂
John still gets sick sometimes and he still carries around all of his symptoms, which range from numbness and tingling to pain to imbalance but he is still and always be my hero. In the midst of dealing with this illness he began to tailor his blog to journal what life is like with NMO and then he began writing inspirationally in an attempt to get it out there that if you have NMO or know someone that does, you can still be healthy. You can still have a life. He began receiving email after email from those battling the disease thanking him for his inspiration. And I remember the day that a woman wrote on an NMO page in Facebook that for the first time in 2 years she decided to walk out to her mailbox and get her own mail because “if John Craig can run a race, I can surely get my own mail”. That was a happy for us. 🙂
The t-shirt and other items came from a woman named Nancy who has a son, Riley, that has been battling NMO for 2 years, since he was 7 years old. Yes, only 7 years old. Upon her son’s diagnosis she began researching NMO on the internet and came across John’s blog. They wrote back and forth a few times and she thanked John for his inspiration. Since then, Nancy has organized charity races and walks in an attempt to bring awareness to NMO and raise money for research. She sent John these items, which she designed, to thank him again for encouraging her to get out there and be an inspiration herself.
So we thank you right back, Nancy. 🙂 Thank you for making my husband’s day. There were no dry eyes when we read your note. You and I know what it’s like to walk beside someone with NMO and watch them struggle day in and day out. To watch them attempt and fail to do things that the rest of us take for granted. We see them in pain, we see them try, struggle, fail, achieve, win, lose…and then start all over again. As I am sure Riley is your hero, John is mine. He could have given up. He could have simply thrown in the towel and no one would have blamed him. But he didn’t. Each day he beats this disease a little more simply because he WILL run with Ella in the woods. He WILL climb that tree with her. He WILL chase her around the house, pick her up when she falls, ride bikes with her and yes, walk his daughter down the aisle one of these days. He WILL live.
I am so happy that John inspired you to do your own thing with this disease in order to bring awareness to Riley’s struggle…but I’m not surprised John inspired you; he inspires me everyday. And though this disease will fight back and John will take a few low blows here and there, this disease will never win.
Ohhh NMO…I believe you’ve met your match. 😉
“You do not need to be STRONG enough for whatever life throws at you…..You need to be COMPASSIONATE enough to be of service to it.” –John Craig
Want to be inspired?? Go here.