Reflections on a New Year

January 7, 2013 at 2:19 pm (Uncategorized)

I made a poor choice a few weeks ago.  “I’m so tired and sick, and there’s so much to do,” I told myself, “I’ll just wait until I’m feeling better before I write my next blog entry.”  That was two rounds of chemotherapy, one sarcoidosis flare-up, four solid weeks of antibiotics, the holidays, and many days of solo-parenting while Jay travels for work ago.  Waiting for the right time to do anything is the perfect solution for staying exactly where you are.  I should know because I’ve done it a lot. 

I take up writing this evening still exhausted, still sick with the world’s most pernicious sinus infection, and still having trouble typing because my hands are swollen from the sarcoidosis.  I am on the third day of a week’s course of daily doses of IV antibiotics.  I’ve moved into the guest bedroom in the basement because 9-year old Andrew is sick with yet another form of The Crud, and he’s probably already passed it onto Jay.  My doctor told me on Friday that I need to avoid “further exposure” to any other bugs while I’m on these ass-kicking IV antibiotics.  Easier said than done when one has a compromised immune system and lives with a walking—and hacking—petri dish.  One might be tempted t say, “Oh the hell with this,” and go lick the slides at McDonald’s Play Land—just to get it over with.  But instead, one finds herself lurking in her own guest room, washing her hands like Lady Macbeth, and going a little overboard with antibacterial wipe usage—not to mention formal pronoun choices. 

It’s the New Year, which in the past has meant ritually pledging to do everything from losing weight to writing a book to making my bed every day to stopping swearing.  Not this year.  I am too tired, too sick, and too worried about the next acute illness landing on top of the chronic sickness.  My enforced quarantine in my own home and my overall siege mentality have helped me appreciate the life I have.  I want to live it.  It’s so easy to wait for things to get better, for things to go back the way they should be, or the way they used to be.  But what if by waiting for better times to roll in, we let the ground we still have wash away?

I am writing tonight, even though I’m not feeling up to writing.  I called a friend this evening, even though I didn’t quite want to chat.  I am staying in the guest room for another night because I want to beat this infection and not catch another one.  I am practicing what I preach—or, at least trying to—and living the life I have.

Recently, I’ve had friends pass along links to new blogs by others living with chronic illness.  Reading these has prompted me to think about my writing here and why I do it.  In some ways, Chronic Town is a personal story.  For the past seven years, I’ve shared the details of my very specific journey.  As a new mother, I became ill with a strange-sounding and serious auto-immune disease.  I’ve grown up, and I’ve grown into a new life with the unique responsibilities and challenges that parenting and illness brought me.  I’ve written vignettes about Andrew in his toddler years, meditations on chronic pain, and tirades at losing so much of myself to sickness.  I’ve written about my family, my feelings, my disease, my treatments. 

As years passed, and my archives have grown past 275 essays, though, I hope that I’ve transcended the specifics and contributed to a bigger—more universal—story.  We all live in a state of siege.  There’s always some invisible threat to our plans looming just past our control.  We all live with exhaustion, in bodies that don’t always obey our wishes, in lives we didn’t necessarily construct.  But we live.  There is such joy, such hope, such beauty—even on those days we don’t feel quite up to it, even when we’d rather wait to feel better.  I hope all these essays go past a macho (or masochistic) recitation of all the hard-ass things I endure and the implicit claim that in enduring them I am somehow more special. 

Because I am not special.  Chronic illness doesn’t make me special.  Or tough.  As I hopefully embark on the next 275 essays and seven more years of writing on this blog, I think it’s important to make this clear.  If chronic illness taught me one thing, it is this: we all live in Chronic Town.   I don’t mean that we’re all sick, but that we all live on a ledge between life and death, that we all live with the constant possibility that everything might change in the next breath, that we all make do with what we have here and now.  This is terrible.  This is wonderful.  This is what we have. 

May this year be healthy and happy for you.  I hope 2013 brings you all peace and adventure, new opportunities and stability, and as much love as your hearts can hold (and then a little more).  May we all have the courage to live the days we have right now before us.  Happy New Year.

12 Comments

  1. Patricia said,

    Thanks, Rebecca. I needed that!

    • Rebecca Stanfel said,

      I’m glad I could help, Patricia. I am going to forget about waiting for the time to send you a proper email (as in, follow my own advice) and touch base soon. Hoping all is well in California and 2013 is a good year for you 3. xo

  2. Amy Pridemore said,

    Love this writing. Love you.

    • Rebecca Stanfel said,

      Thanks. I love you and love that you are always excited to read my writing.

  3. Barb Barnes said,

    Can one really overdo antibacterial wipes? I challenge that notion.. whatever are the super sized dispensers from Costco FOR if not to liberally and diligently and absolutely USE them whenever and wherever possible?? My heart rested a bit reading that you are doing what is necessary, albeit not wanted… thank you for taking good care of the you who wants to live. I want that for you too. The way your words express your experience, from your very marrow is captivating and inspires me.. thank you. Oh, and I gave up swearing too, except for good purposes, and I don’t know what the fuck I was thinking!!! Love you.

    • Rebecca Stanfel said,

      You made me laugh out loud, Barb. I love your humor and appreciate the care and kindness you give to me. Yea, don’t give up using all profanity. I mean, how many other words can be as versatile and multi-faceted as fuck, which seems some days to be my verb, noun, adjective, and interjection of choice.

      As always, I appreciate you reading my stuff and sharing your insights and humor. I hope 2013 is fabulous, Love you too.

  4. Theresa Boyar said,

    I think this is probably my favorite Chronic Town post ever. I needed to read this today. Happy New Year to you and your family, Rebecca!

    • Rebecca Stanfel said,

      Wow, thanks Theresa. I’m so pleased this resonated with you. This one is a little different. I’m wanting to push myself a little here. I’ve also been thinking about what it is that I’ve been working towards with all these individual pieces over these years. And now that so many people are writing about their experiences with illness, I also wanted to stake out for myself my terrain. Hopefully it will help put me in a good book writing point of view.

      Happy New Year to you and yours too.

  5. nan said,

    Good New Year to you – love when you write from your heart. Thanks again. I started this journey when I was 49…and I will be 60 this year. My siblings and sibling-in-laws have all been racing through this birthday – “just wait when it rolls over you……you won’t be so happy about 60” – it Will be a happy day. We are all rolling through time, some bumpier then others. Keep writing – it keeps many of us rolling. n

  6. Rayna said,

    Inspiring, as always. Wishing you all the best for 2013!

  7. Ericka O'Connell said,

    Hi Rebecca,
    I have an autoimmune condition, also. I have to find and manage my triggers in an attempt to prevent flare-ups. One of the major ones for me seems to be diary products, not so much because of the lacose but the milk protein which my body reacts to. Soy products have become my substitute, although I still cheat with some cheese (hard to give up pizza!). Takes some getting used to, but so much better than feeling sick all the time. Another big one for some people can be petrochemicals, like those that leach out of plastics. I don’t drink milk anyway, so I don’t have to worry about plastic milk jugs, but lots of food items come in and are stored in plastic containers at home. I would guess microwaving them could potentially cause more chemicals to get into the food. Some things to think about…I so hope your sarcoidosis goes into remission some day.
    Take care,
    Ericka

  8. Nedra Chandler said,

    Okay dear dear Rebecca whom I met just as you were entering and discovering Chronic Town. I just now experienced your Jan. 7 (and also the more recent and also wonderful blog entry). I’m stunned at the beauty of what you wrote. I mean it you know.

    For example, emblazoned on me now are your words, ” Living the life you have” …and an unforgettable cadence, a universal story as you say in these lines: “we all live in a state of siege. there’s always some threat to our plans looming just outside our control …we all live with exhaustion in bodies that don’t always obey our wishes in lives we didn’t necessarily construct — but we live. There is such joy, such hope, such beauty — even on those days we don’t feel quite up to it…”

    I love your insights. I take them with me here. Thank you. Nedra

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: