I can still remember the very last time I called to schedule a blood donation. Donating blood was something I used to do regularly—it was a way I could give back.
But, this particular call was the first time I tried to donate after being diagnosed with multiple sclerosis. And that day, I learned a brand new phrase: “permanent deferral.” It’s an odd phrase, really, and full of a harsh finality...
“Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.”
- Michael J. Fox
It’s a punch in the gut to hear “your disease is progressing...”
Life is tough. You get thrown curve ball after curve ball, and when you first start to play the game, you might get a black eye, a broken bone or knocked down. You get so frustrated because you just can't play like everyone else.
Then one day, you dodge the ball. You catch it and throw it right back. Even if you do it your own way, you manage to play...
Sincelast summer’s failed congressional efforts to repeal many provisions of the 2010 Affordable Care Act (ACA), the hashtag #IAmAPreExistingCondition has peppered countless social media updates.
Current and former cancer patients use it on Twitter, Facebook, and Instagram. Asthma sufferers post it, too. Ditto for people with diabetes, mental health issues and heart ailments...
“Oh, me too! I know exactly how you feel! I went to bed really late and haven’t had my coffee yet!”...
After our last holiday to Nashville, Tennessee, I had to do something about how I navigate the airport. I could not be ill on this holiday. Not like last time.
I had never heard of “airport assistance” until I came across it on an MS group on social media...
“One of the most important things to someone with a chronic illness is to be treated as an equal. Having MS does not make me any different than someone who does not.”
This was something I used to tell myself every single day since my diagnosis—it got me through the hard times and inspired me to live my highest quality of life. But as I get older and the 4 year anniversary of my diagnosis approaches, I find myself questioning if this is really the case...
I still check on my boys every night—I don’t think they will ever be too old for me to peek in while they sleep, marveling at these gifts I have been given.
They’re growing up so fast, and some nights I can’t help but worry. That the world won’t be kind to them. That life won’t treat them fairly. That I won’t always be there to protect them...
Resilience is the capacity to recover from difficulties and finding your strength within.
Where do I begin? I’m 39 years old and have been through my share of difficulties. If I’ve learned anything, it’s that no matter what happens, you have to get back up and fight all the curve balls that this life throws you...
The date was October 24, 2007.
It was my second year at the University of Pittsburg’s Anthropology Ph.D. program when MS hit. Within minutes of arriving at the school’s Halloween festival, I lost my vision, ability to talk and walk. Rushed to the hospital, I was diagnosed with MS and placed on a disease-modifying therapy, Avonex, within hours...
I recently walked our two boys to town to get pizza, and I ran into another mother from the neighborhood. She was alone and bringing pizza home for her kids because she and her husband were going out for a much-needed date night.
"It's so important to make time to do that, you know?" she said to me, looking for relatability as I tried to wrestle a handful of napkins from my three-year-old before he tore them into confetti in the restaurant...