So Let Me Get This Straight

The more our bodies fail us, the more naked and more demanding is the spirit, the more open and loving we can become if we are not afraid of what we are and of what we feel. I am not a phoenix yet, but here among the ashes, it may be that the pain is chiefly that of new wings trying to push through.

May Sarton,
Recovering: A Journal

Full Snow Moon

So let me get this straight: I have to have it well documented that several treatments did not arrest my symptoms of RA before I’ll be approved for the one treatment that has an 85% chance of being effective for me ? And when I’m finally approved for that treatment (four years later) it comes with a co-pay that is 10 times higher than what I have paid for any of the others ? It’s like a car payment without the car. Have I got that right ? 

No wonder healthcare is such a mess in this country. It shouldn’t really be called healthCARE at all. It’s really just an insurance racket. Sigh .. That said, I have begun a new treatment and while the cost is alarming, I’m optimistic. It’s hard to put a price tag on being able to get out of bed in the morning and stay asleep at night. Harder still, to quantify the value of being able to do what I love, pain-free. 

While most people around my age and older are working out the particulars of getting a vaccine, I am trying to find something that will boost my energy beyond 2:00 pm in the afternoon and erase the fatigue that grips me most nights. I really don’t need sympathy. What I need is an effective treatment. We are all dealing with “something”. There is endless mystery within these bodies we inhabit. There is no charted comparison or measure for what brings us to our knees. We forge onward with hope and a little optimism. Better living through chemistry ? Yeah, we’ll see. I have ambitious spring and summer plans, none of which involve the couch.

Spring 💛

Covid has factored prominently all year. While I have not seen my doctor for an in-person appointment for over a year, my good sense and reasonable caution (because of Covid) have kept flu and cold season at bay. I have met fewer people in person and yet forged deeper bonds more quickly than I might have otherwise. I wonder what else Covid has taught me; the lessons, the take-aways, the new behaviors that I may keep forever …

Kelly and I laugh as we watch a show or two at night. Most were filmed pre-pandemic. We laugh because the days of handshaking may be gone forever. Not just that though. I can’t imagine dipping my hand into a communal bowl of chips or peanuts (or pick up a communal towel in a bathroom). I also cringe at the idea of someone blowing out candles on a cake that others are expected to consume. Cupcakes with a candle for the birthday boy or girl from now on .. 

And these are just the ones I could find !

A friend recently wrote about having more masks than underwear. Yep, here too, and just like my drawer full of panties, I have my favorite masks. I think more carefully now as I buy them. These strips of cloth have replaced my crooked smile. What can my face-covering possibly say that my smile used to convey ?  I’ve met people recently that I wouldn’t recognize on a warm summer day in a post-Covid world. I have never really seen their faces. There is no substitute for a warm smile. An “elbow bump” will never replace a hug. 

Double-masked with my folks until their second vaccines.

There may be many new behaviors that stick: hand-washing, mask washing (and wearing), gloves while pumping gas. I’m rarely without sanitizer and I love my neck  buff (gaiter) for outdoor adventures. I never really cared for my neck before, so any excuse to cover it is welcome. 

I started listening to a book last week as I awaited a couple others. Now I find I can’t stop listening. The Body by Bill Bryson is absolutely fascinating to me. Every chapter, every system, every body part. We are truly miracles. I’m not sure he will address auto-immune disease in this book but I’m now plotting a way to be in my car for hours so I can finish it and find out. Road trip !

Nature and knowledge have made my cup feel over-flowing. There is the physiology of just how beneficial walking outside can be and there is also something much less easily defined. I spoke with two women on my walk yesterday about what a healing place it feels like in this refuge. It’s the place we turn to for comfort and understanding. It is true sanctuary to be outside and immersed in life. 

For some things
there are no wrong seasons.
Which is what I dream of
for me.

Mary Oliver
A Thousand Mornings

Covid has changed us. It feels like a long season of grieving in many ways but none of it feels wrong. Well, not exactly. It just feels unusual. Unexpected and unwanted, but necessary. 

Nature doesn’t have all the answers. Even some of the biggest questions of the body remain unanswered in this miraculous mix of muscle and tendon, chemistry and air, oxygen and energy. I suppose we are as much mystery as we are anything else. 

Being immersed in nature shows us the life cycle, up close, every single day if we are just open to observing it. Growth and decay, living and dying. It’s all right there. The snake becomes the heron, the duck becomes the eagle, the vole becomes the coyote. You get the picture. It is all part of a greater plan.

A snake being transformed

Nothing is lost, but all is transformed.

Karen Maezen Miller

I love this so much ❤

So I begin the week hopeful. Maybe another trip to the blue sky, clear air church that I so often frequent. If the timing is right, I will unfold in movement as the crocus begin to push through the frozen soil. Life is returning. The awakening has begun and I can’t wait to join in and be a part of it.

10 Comments on “So Let Me Get This Straight

  1. Thank you so much for writing. Hearing from people means more than you know. I feel like we are all getting to a more reflective place about the past 12 months. A year ago I was on my last hike before the world started shutting down. It feels like a lifetime since then.

  2. So many things to think about in this post. Thanks for your honesty, your reflections, and amazing photography! I read you posts often, but this is my first comment.

  3. Wonderful post. You make me stop and think a lot-I appreciate that!

    • The world spins madly on … thanks for the note and encouragement. Glad to know there is a kindred spirit on this journey ♡

  4. To say, I feel your pain, sounds flip, but, Bon, I am right there with you… or rather, I am 11 years ahead of you, and I wish I could report back that it gets better… aging, when it attacks our structure, is truly a slow death. Rather that than the mind, but it is humbling, every move I make. And worse, the places it keeps me from, break the spirit. Pay the $$$ if it keeps you moving. Or while it does. A time will come, when money doesn’t get you where you want to go…*

    • Oh, I will do what I need to do for sure. I see aging and disease differently. Aging, I feel better prepared to deal with. A disease that tries to steal my last active years is in for a fight ! I know what you mean though. When the list of “I’ll never do that again” begins to grow, it’s pretty hard to swallow. Hang in there, dear ♡ Thanks for writing*

  5. With your inspiration, I’m renaming the recycling stump out front–it’s now the transformation stump. May the new chemicals work–and come down in price!?! Healthcare should not be a for-profit industry.

    • I love that. Yes, nothing is lost, all is transformed. Maybe even people can regenerate some different version of self. I’ll keep you posted ! Thanks for writing ♡

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