She Had Multiple Sclerosis

Tonight as I was folding laundry and attempting to think up a funny MS article my thoughts turned to Joyce. Technically we were not related. She was the daughter of my mom's first husband's sister and therefore cousin to my 3 half-brothers and sister. The only occasions during which I saw Joyce were those celebrations that centered around one of my siblings, baby showers, bridal showers, etc. Recently, she passed away from breast cancer, but before that she had MS.

The first time I truly remember noticing her was at the baby shower of my sister-in law. Of course we'd bumped into one another at other occasions but for some reason this day sticks in my mind. She had long dark curly hair, the wild kind I always wished I had, and a huge smile. I recall her wearing some truly hip outfit with a long skirt and watching her with appreciation. She was confident, vivacious, and always laughing. This was a woman who was comfortable with herself. Living in the Bay Area with a prestigious job, she was the type of person I admired and hoped someday to become. I didn't talk to her.

About 3 years later, right around the time my first book about multiple sclerosis came out, Joyce was diagnosed with multiple sclerosis. More than one family member mentioned how fast she seemed to be deteriorating. More than one thought "maybe you should call her?" Why would I call her, I thought, who was I to suddenly pop out of the blue, a sort-of relative, and say "oh hey I heard we have the same neurological condition! Is there anything you'd like to share?" I rationalized that I was not a counselor or a doctor. I wasn't even her friend. How dare I call up and think she'd like to speak with me? So I never did.

The next time I recall running into her was at my sister's bridal shower in 2004. I was newly pregnant with Aidan and my MS was in remission. That day I was thrilled with myself for being able to risk wearing my black high-heeled suede boots. Those dang shoes had originally been purchased for my London trip in 1999 when I came crashing down with MS symptoms and now I was finally in them! I was proudly sashaying about in a long skirt with my knee-high boots and feeling damn good about myself, when Joyce arrived.

The first thing I noticed was that her beautiful long hair was cut short. Next I saw that she moved slowly, almost shuffling her feet encased in thick rubber soled shoes. The comfortable kind more often seen on nurses. The kind I had now shoved into the back of my closet. The rest of her clothing was all about comfort, yet she looked uncomfortable. I could not believe that this was the same woman I'd envied years before. Her sparkle seemed lost, her will almost crushed. I was shocked. I was shaken.

What was I supposed to do? Here I was, pregnant and doing great while she appeared devastated. This was unfair! I felt that I shouldn't be around her. That seeing me would be like rubbing it in her face. Why was I doing so well, while she slid further into disrepair? True, I had been through some rough relapses in the years since my diagnosis, but for Joyce it seemed it had been nothing but a downhill march. How could I even begin to tell her I understood while I walked about in high-heeled boots, looking as fit as anyone? Surely she understood how MS can change? But what if she didn't? What if she had never seen a better day? What if it had always been black? I spent the rest of the party being a big fat coward and avoiding her.

When it was over, we collided in the driveway. I was gabbing at my brother, when she came out, her arm hooked with her mother's for balance. Only years before I had leaned on my mother for support while walking, yet I couldn't think of a brilliant thing to say. Something t let her know that I did understand, that I did want to help if she only wanted me to.

"I read your book."

"You did? Yeah it had some printing problems." I felt like an idiot.

"It made me laugh." She said quietly. I smiled back.

"Thank you! That was my intention you know, to take this horrible condition and try to find some humor in it."

"Well it worked." Again she gave me a soft smile.

"Good." I honestly don’t remember for sure what was said after that. I think we talked about MS MOMS. I may have babbled about advocating to doctors and how to do research. I possibly told her to email or call me anytime. I can't say for sure. What I do know is that I left that day feeling low.

I was amazed at how fast MS could take someone apart. Until that point I had only my own experience and the postings of others to go by, but I had never truly seen it. I felt relief that I was not that bad off at the moment and then guilt for being relieved. I didn't know what I was supposed to do. What was the etiquette for this situation? Should I have said more? Should I have sat her down and made her talk about it? Why didn't I, the fonder of MS MOMS, the author of a book about MS, know what to do?!

That was the last time I saw Joyce. The next thing I heard was that she had breast cancer. And soon, she had passed away. I did not attend the funeral. I was, as it was put to me, "not expected to. She wasn't really your family." But she had been family. Part of a family that grows larger each year. She had MS. And I will always regret not telling her that.




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