You know when you have someone who you feel like is your rock? My daughter is my rock, the person I can talk to about anything. She knows just when to give advice, and when to simply be an ear. She has been the only person who I have accepted correction from. There has been this major shift though, following her MS diagnosis. I don't so much want to stand on my rock anymore, as much as I need to allow her to help me step up to something higher. She is teaching me how to step up.  

I will never learn to love this evil that has a hold on us, but I will love her even more than ever. When I had my daughter, and I counted those fingers and toes, and listened for that breath, I thought, "okay, it's all okay." And with something like this, I feel like a little of her breath has been taken away. I want to protect her no matter what, and I cannot. This is the hardest part of being a parent that I have known. If we ever have a cure for MS, and I am still on this planet, you can bet I will be the first to spit on MS's gravestone. 

I was going through old pictures and memorabilia the other day, and found a card that my daughter sent me. There was no date on it, but I could tell by her handwriting that she was grown. She wrote, "I love you more than the stars in the sky." And I love her more than the sand grains on the beach. It was a game we would play when she was little, and although she is grown, and we are facing new challenges, I am grateful that we have these little things that will always stay the same. 

The nurse was the one who spilled the beans. Can you believe it? She just assumed that my sister’s steroid treatment was for MS and she addressed my sister with some nonchalant statement that began with “lots of my MS patients…” She had no idea that I would be the one who Jackie called, asking, “Does this mean that I have MS?” I didn’t even know what MS was, and I sure as hell didn’t trust the blabbermouth nurse, but something in my gut told me that there was no way she could have gotten that wrong.

I remember listening as my sister confirmed the nurse’s words after an appointment with a neurologist. I sat in front of my classroom computer late at night (I am a recovering workaholic) and I did what any other normal person would do: I shoved the phone between my shoulder and ear, double clicked on Internet Explorer, and googled it. Then I cried. Silently. And told my sister it would be fine. She is my baby sister, for pete’s sake. Even if a Tsunami was headed directly at our heads, I would tell her it would be fine.

In that moment I realized how lucky we were. We had suffered some unlikely tragedies in our family, but we were all still alive and happy. Even my father, who had been diagnosed with a weak heart after a series of small heart attacks, had outlived the original 5 year timeline we were given.

And as I processed the diagnosis, I wallowed in a ton of guilt. At that point in my life, I had a successful and rewarding teaching job, a stellar long term boyfriend who had recently proposed, and a house in the suburbs with a gym membership that kept me remotely healthy and active. Jackie was living at home, struggling to find a job, struggling even more to keep her relationship together and couldn’t afford a pair of running shoes. Why her? And how the hell was I supposed to help her, when just being me was probably nauseating?

I remember feeling like I couldn't possibly understand what she was going through. She needed other people who has been diagnosed with MS, young and old. She needed to find community, and I was so proud of her when she decided to try and unite the young MSers by using her talents in writing and design. MS.Understood was a feat of strength, as far as I’m concerned, and I hope that TheMSBlog creates an even bigger community of people who “get it.”

If you have someone close to you with MS, we'd like to hear your side of the story. How has it been for you dealing with the cog fog, memory loss, and other day to day symptoms?

What is it like for you? What has the hardest part been for you?