Suddenly It’s Autumn

October 10, 2013 at 8:07 pm (Uncategorized)

Suddenly it is autumn. The seasonal changes here in the North always feel precipitous. But the clicking over of the seasons to vibrant leaves and cold nights happened especially quickly for me this year. I had to spend 17 long days in the hospital in the depths of one of my worst ever neurosarcoidosis flare-ups. When I checked into the hospital, it was hot and almost sultry, as Montana’s usual Indian summer flexed its muscles and ran a few days longer. When I emerged from the hospital, it felt like the trees could barely hang onto their lurid russet, marigold, and pumpkin colored leaves. The wind drops a few degrees every night, and the branches clatter a little more loudly.

I know it’s been a long time since I’ve posted. I ended up taking the summer off writing of all kinds. Andrew will be 10 in a few weeks, and it felt like there might not be many more summer vacations that he actually wants to spend with his Mom. To be honest, I think I also felt like if I didn’t write about any aspect of chronic illness, I could magically be done with all things sarcoidosis. So instead of blogging, writing my book, or pitching magazine pieces, I did my best to keep up with my 9-year old son. We swam and went to different water parks. We went mountain biking together for the first time—and had our first simultaneous crash. We went on a family camping trip to Canada, where we saw grizzly bears, glaciers, miles (er, kilometers) of spectacular countryside. We read books together. I finally got to read Andrew A Wrinkle in Time, one of my favorite childhood books. We hosted many sleepovers, and delivered Andrew to many more at his friends’ house. We tended our tomato plants and lazed on the deck in the new chairs Jay’s Mom got us. Of course, I also kept getting my monthly chemo and ivig, in the hopes I could keep the sarcoidosis at bay.

I don’t think I “overdid” it this summer. I don’t think too much fun in the sun is what landed me in the medical clink for my longest ever hospitalization. That said, a couple of orthopedic injuries and a lingering sinus infection likely didn’t help quiet down my hysterical and over-reactive immune system. But I’ve been around the flare-up block enough times to know it wasn’t my fault that I fell apart.

I spent over 2 weeks in some of the worst pain and with some of the worst vertigo of my life. It got so bad that for a couple of days I could not stop throwing up. I am trying to look on the bright side. Maybe I lost a pound or two that will help offset the inevitable weight I will gain from the 3 mega-doses of 1,000 mg. of prednisone the doctor had to give me to try and quiet my inflamed cranial nerves.

I feel exhausted and broken. I know that’s normal. I am still in a fair amount of pain. I know that’s normal too. I can’t shake the sense of having “lost time.” But then, I guess that’s also normal, given I did lose track of who and where I was.

I would say it’s rebuilding time, but I don’t think I am well enough for even that yet. Right now, I’ve got to heal. Taking it day a time is wholly too ambitious for me. It’s back to living in each minute I have.

12 Comments

  1. Leanne Shirtliffe (Ironic Mom) said,

    Wow, R, wow. What a challenging few months. I think a lot of us lose track of time, of the present, even in physical health perhaps without perspective. In no way am I trying to romanticize illness but many of us are walking in numbness, taking good health for granted. Your posts help me realize this.

    I hope you are given the energy and the health to write again. We need your voice!

    • Rebecca Stanfel said,

      Thanks, Leanne. Yes I think you’re right. Time passes quickly for us all. As I’ve said to many an agent, my hope with my still theoretical book is to use illness as a lens onto life in the “real” (healthy) world. So it makes me very happy to hear that my writing provides this for you. Plus, I definitely am trying to embrace the make lemonade worldview. If I’m going to keep having this shitty illness, I am at least going to try and make something meaningful and beautiful out of it. I so appreciate your reading and taking the time to comment. And speaking of agents, I just am not well enough to travel to siwc this year, which makes me grumpy. I will miss seeing you and the other wordbitches. But please have a glass of red wine for me…and a great conference! Thanks again for the good wishes.

  2. Rayna said,

    Sounds like a fabulous summer filled with lots of lasting memories! Glad you’re home and on the mend!!!

    • Rebecca Stanfel said,

      Thanks Rayna. I really appreciate your good wishes. We are looking forward to seeing you guys soon–hopefully without dramatic changes to travel plans this time. 🙂

  3. Danna said,

    You are such a gifted writer. I’m immediately drawn into your posts. Thanks for this!

  4. carol schaake said,

    Thanks for sharing what’s up … great family summer and lousy late summer/fall. You did it all, once again. Your parents are dear friends of mine. I follow Chronicville and you with my heart and deep caring. Keep writing and living. It all matters.

  5. Patricia said,

    The tension in this piece strikes me: The bit about not writing/not paying attention to the illness and maybe it will “go away” (part magical thinking, maybe, and part just trying to find that g.d. balance). The glorious description of your summer w/ Drew, then the nightmare flareup. The fact that you had to write that paragraph about it not being your fault. Each of these speaks (roars?) volumes…or leaves the reader wanting those volumes, if they can’t fill in the blanks themselves.

  6. nancy m hayes said,

    It so good to hear your voice again Rebecca. Your strength in trying to move out of illness to a summer of wonderful activity is inspirational…as is your awesome talent for writing.

  7. nan said,

    Love to hear your voice again. You have been in my thoughts – nan

  8. Debbie & Larry Letvinuck said,

    God bless you Rebecca! I cannot believe Andrew will be ten. We were diagnosed within months (possible weeks) of each other. I remember telling Ken about my MS and him telling me you were just diagnosed. I too try not think about illness, MS, whatever and it has been almost 10 years. Wow. I am thankful to be in the good shape that I am in. Hopefully you will be in good shape again soon. God bless you peace, Debbie Letvinuck

  9. Amy Pridemore said,

    I don’t know how I missed this new posting. So glad to read your words. So sorry to know you are back in the hospital. Love you so much my dear friend.

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