Since learning that you have multiple sclerosis (MS), we’ve rarely spoken of how I feel about your diagnosis, symptoms or neurological appointments. Almost as seldom, I’ve asked how you feel about them. Rather, we stick to the black and white of what is happening, which most likely makes me seem distant and causes you to feel isolated, so there are a few things you should know.
I see your symptoms, but not as much as I see the woman who played softball even after having a daughter, who nearly exhausted herself to be involved in PTA and who made it to every field trip. I see the woman I spent my entire childhood watching take first place in martial arts tournaments time and time again.
I still hear you telling the grade-school me that I know better than to leave so much white space in my drawings or asking me why I’m so “comma happy” when I wrote essays for class. Thanks to you, I’ve become an adult who paints her entire canvas and challenges herself to be better at what she does. I’m still comma happy, but hopefully I do you justice anyway. After all, I can’t forget the art and poems you crafted while I watched.
Since your diagnosis, you’ve expressed feelings of isolation, suspicions that you’re largely misunderstood or, even worse, invisible and insignificant. Understandably, you feel as though I forget about your illness sometimes, and, honestly, it usually isn’t in the forefront of my mind. This isn’t because I don’t pay attention. I just still see so many other things along with it.
Unfortunately, you don’t often get to see the fruits of your past and even current efforts. Even though I don’t get to watch you spar or paint murals on the wall anymore, you continue to influence your daughters, son and the world around you in other ways.
Your glowing spirit hasn’t dimmed. Your silly sense of humor still makes the world laugh. Each day, you get up before dawn, walk out the front door as gorgeous as ever despite the physical struggle that managing your curly hair has become and power through work with a smile on your face — all to touch the lives of students and teachers who need you.
I’m scared. I’m worried and sad and angry. I’ve had every reaction you’d expect, but you need to know that those feelings don’t dominate how I see you or how I conduct my relationship with you. The condition that robbed you of most of your vision, your athleticism and so much more hasn’t robbed you of the way your children look at you.
Love,Your oldest (and obviously favorite) child.
To My Friend With Multiple Sclerosis Who Passed Away
It has taken me a couple of months to write this letter, but I will try by best to speak out as much as I can, no matter how much it makes me cry.
I knew you for one short summer — the same summer I got diagnosed with Ehlers-Danlos syndrome (EDS). It was too short in my opinion. But the talks we shared were long and personal, and through work, I made a friend.
I lost a lot of people last summer. From cancer to addiction, I said goodbye when I didn’t want to.
And then, I lost you.
I was thankful the universe gave me you, a spunky, fun-loving 33-year-old with multiple sclerosis who told me stories about traveling and working hard for what you want.
Then I became angry that the world had taken you back and left me to wonder how short life is.
In October 2016, I boarded a plane for Europe. I bought the tickets while working with you and told you the minute I made plans.
After my EDS diagnosis and losing you, I didn’t want to get on that plane. I didn’t want to walk anywhere, see anything or do anything. I was tired, emotionally and physically.
But then I remembered how you told me that you wanted to see pictures; you believed that I could live to the fullest, despite everything, so much that I wanted to believe it, too.
You told me once you didn’t believe in God after fighting in Iraq and seeing everything you saw. I couldn’t argue with you, but I now wish I could go back and tell you I believed in you. And that I believe good people don’t come around too often enough. I believe in you and believe that God believes in you, whether you believed or not.
I believe because you believed in me more than I believed in myself.
I know I’m going to use the word “believe” a lot, but I believe that with your spirit, your genuine kindness towards people and because of the fact that you took a chance and believed in me, I believe I will see you again.
And you’ll save the best seat in the house for me, and we won’t be battling these diseases any longer.
I can’t promise any new medical breakthroughs by the time I see you, but I can promise you that I’ll fight just as hard as you did.
We’ll be so healthy up there that we might not recognize each other. But I loved your spirit, and I’ll recognize your smile.
Love You Forever.
By Christa Harkins and