Sunday, August 31, 2008

Happy Anniversary to My MS

It's Labor Day Weekend. To most people, this is the unofficial end to summer or just another 3-day holiday weekend. To me, it's the one-year anniversary of when I was diagnosed with MS.

Yesterday, the kids and I went for a ride on the bike path near our house that runs from Milton to Dorchester. Well, they rode. I walked so I could be available to help Zane with his new training-wheeled big-boy bike. There was one spill and one tantrum but we had a lot of fun.

Last night, we went to Ken's house for dinner and to bid Alli farewell as she headed back to college. I brought her a shopping bag full of non-perishables to curb the hunger if/when she ran out of money for food. Alli is a very smart young woman and I am really glad the kids and I know her. Matt is going to miss her like crazy...not that he'd admit it. Brothers are so funny.

Today, we spent time at two beaches. There were two tantrums (one was mine), lots of sunshine, climbing on the rocks during high tide at Nantasket, and collecting weird-shaped stones at Wollaston Beach.

While we were out, I left homegrown tomatoes from my landlord cooking in the crock pot with broth and herbs. When we got home, the kids showered and I made a great dinner with ground turkey, broccoli, pasta, and my sauce (or gravy as Tim and other East Boston natives like to call it). After dinner, we watched Chitty Chitty Bang Bang which was a hoot and a half for me. I think I was Ruby's age the last time I saw the movie. Ruby couldn't get over how everyone rode in the car with no seat belts. Zane liked the singing, although he did think they said "farting friend" instead of "fendered friend" in the title theme song.

Then it was jammies and bedtime. I read Miss Bindergarten Gets Ready for Kindergarten to Zane and the last chapter of Harry Potter and The Sorcerer's Stone to Ruby. They're asleep now and I'm watching TV...and remembering.

I tell people all the time about what a gift MS has been in my life. Most of the time, I'm not lying. My writing has taken off, I know how to take care of myself like never before, I made some major changes in my life that are all positive (namely my work and living situation), and I mostly focus on just the one day I'm living right now.

But I also grieve. I miss my freakish strength. I grieve the loss of my perceived invincibility. I miss my seemingly boundless energy.

I miss pre-MS me.

But she's gone.

Now, I'm Julie with MS. Lazy Julie. Julie who would love to have time to take a nap every day. Julie who is going to finish my book proposal by the end of the year and then find an agent and then get my book published. Julie who has MS but also has dreams, goals, talents, and a sense of humor. Julie who is still going to rock the world.

It's been a year. It feels like yesterday. It feels like forever.


  1. Happy Anniversary to you!!

    Sounds like you had a great time with the kids and that you have a strong plan for the book. Maybe after you've got it all completed and a publishing house has signed on the dotted line, you'll have to tell me how it's done. I've been tossing around the idea of writing something for a little while now.

    In my experience, the first year was the hardest. From there the MS got much easier to handle. Hopefully, it will be the same for you.

  2. Good wishes to you for the next year! I liked this post very much.

    It has been almost ten years since my positive diagnosis and I can really relate to this post. I'm open to the new gifts that having a chronic disease bestows like being more focused on what is important and exiting the rat race. But I still grieve for the energetic Joan, the one who could take two college courses plus dance lessons while working 40 hours. The one who had lofty career goals. The one who once walked 40 miles in three days for the MS Challenge walk, and used to walk 6 miles every weekend.

    The grief still hasn't gone away, but I've gotten to used to it being there.

  3. I am glad you had a good aniversary and you can still do so much with the kids. I want/need a nap every day too. There's nothing wrong with that.

  4. I wish I knew whether I could blame The Loss of My Thyroid for all my aches n' pains, low energy & other assorted woes... Or is it just "normal" aging? I still grieve for the death of the Bionic Woman [my HS nickname] but have to make do w/what I still manage to accomplish...

  5. Hello. I just visited your blog for the first time and saw that you have Jake and Mandy widgets, among others. Just wanted to thank you for your support.

    By the way, "lazy" probably doesn't apply! It's just one of the many tricks MS plays on you.