Slice of Life Challenge #25: Coming to terms with fibromyalgia

The March Slice of Life Challenge is hosted by Stacey and Ruth at Two Writing Teachers
Yesterday, I missed the annual March Saturday Reunion at Teacher’s College.  I had been looking forward to this so much, especially after receiving the list of workshops and presenters – it would be another fabulous day of learning and being inspired.  But, by Friday evening,  I knew that the reunion was simply not in the cards.  A day later, I’m still thinking about it, and decided to slice about  why I could not go as a way to address something I have not been able to write about before. 
Four years ago, I was diagnosed with fibromyalgia.  After a summer in which I could not summon the energy to get out of bed or rid my body of its all over pain, I began a year long process of trying to identify what the issue was.  Fibromyalgia is usually diagnosed through a process of elimination – there is no known cause, trigger, treatment or cure.  It is a most maddening and frustrating disease, especially if one is a type A person, whose only issue with energy was in finding enough outlets for it.  I remember sitting in the doctor’s office, and listening to this diagnosis in disbelief – surely there was some medication, some therapy that would restore me to my previous high energy self?  What do you mean “learn how to live with this”? I did not have time for this crazy-sounding disease!!!
Well, that was then, these days, I make many decisions based on “if I do this then I can’t do that”: if I spend time gardening, then I can’t take Sophie on our usual long walks…if I take an afternoon to kayak around the lake with my husband, then we can’t also go to the movies that night.  It’s a weird way to live.  I don’t like talking about it because I find that it makes me a little crazy, actually.  When I do, I feel a tight knot of anger and (I must confess) a degree of “feeling sorry for myself” begin to form, which pretty much gets in the way of doing what I can do.  And, when I reflect on all of those who suffer from things much, much worse than my little fibro, I feel pretty stupid and shallow.
So, I needed to weigh what to do.  The Saturday Reunion at TC is a high energy day – there is the commute from New Jersey to Morningside Heights, the trek from the opening keynote at Riverside Cathedral to the TC buildings, and then the daylong rushing from one workshop to the next through the maze of stairwells and passageways that connect Horace Mann, the Millbank Chapel and Grace Dodge.  By Friday afternoon,  I knew it was probably not a good idea…if I did go the the reunion, then Sunday would have to be spent recovering rather than preparing for the week ahead. 
So, Sophie and I walked to the top of of our street and took in the view instead:
The “View” on a summer morning
I looked over at the city, and imagined all the activity at TC.  I knew Pam Munoz Ryan would give an inspiring opening speech, that Lucy Calkins would have another great presentation on the common core and literacy, that Mary Ehrenworth would have yet another amazing session about the possibilities of expanding our students’ reading and writing…and that I would have to wait for another time, another reunion.  

11 thoughts on “Slice of Life Challenge #25: Coming to terms with fibromyalgia

  1. I'm sorry to hear that you suffer. There is a time when choices have been made for us, rather than by us. That stinks, especially when you are so used to living a busy, active life. You are wise to understand what your body will endure.

  2. Goodness! Life is about choices, but I imagine it is not fun to constantly have to choose between this and that, especially after a life of being able to do both and then some. Thank you for sharing your struggle with us. I know you will have more wisdom as you figure out the balance to life.

  3. I understand completely. I also suffer from the dreaded Fibromyalgia, RA and lupus. When I am teaching, that is pretty much all I can do. Many do not understand that I cannot have both a social life and a teaching job. It just doesn't exist! So I do all my socializing in the summer and spend my school year with my students. I hope that you all feeling better and at least enjoyed your time with Sophie.

  4. It must be difficult to make these choices when your life before this diagnosis was one so filled with energy and action. I'm glad that you shared your disappointment at missing the reunion. Giving voice to our real feelings is liberating. I hope you have a friend who attended and will share her notes with you. On another note, I noticed the button for Poetry Advocates for Children and Young Adults on an earlier visit to your blog. I checked it out and subscribed! Thanks!

  5. A beautifully written post. I am sorry for the pain and frustration you have because of the "fibro". I hope by writing about your experience has helped. I am sure it will help others. Sophie and you had a gorgeous view!

  6. I am so sorry to hear that you missed out, and of your fibro diagnosis. I nannied for a family once, in which the mama had fibromyalgia… and five children. It was an eye-opening situation for me. Hoping that life continues to be YOURS, even if you have to redefine YOURS from time to time!

  7. I'm so sorry about your diagnosis. My former father-in-law was diagnosed with it and spent so much time in pain. I think your post has a powerful idea in it for everyone, though, about priorities and making choices. I know I could stand to take a step back and think about what's important, as you have done.

  8. Tara, my husband & I did spend time talking about those who had it 'worse', but no matter, it doesn't help those who are ill from something. Don't feel shallow because you aren't suffering enough. I am sorry that some days you don't have enough spoons sometimes (someone has shared that with me as Tabatha referred to). I have told about all the things you do to my colleagues as such an amazing teacher that I'm shocked that you do all that you do. You have been such a support to me & now I want to fly over and offer a big hug too. And it's rotten that you had to miss that reunion. But, it's wonderful that you did something about this, like take a walk with your Sophie. It seems your heart is in a good place, even if the fibromyalgia is not! (that was a joke, BTW). Best wishes to you in these challenges & thank you for sharing. I hope that it gathers needed support.

  9. Your post has me reflecting on the choices we make. How sadly ironic that when we don't have to make choices as you unfortunately have to do, we often choose the wrong things, spending time and energy on stuff that doesn't really matter in the end. We could all use a dose of your wisdom, and use our time wisely without taking it for granted. I appreciate your bravery and honesty in writing about this. Thanks.

  10. Tara, I'm sorry to hear about the judgment and balancing you to have to do to accomplish all you do, and cheer on others through your example– which had amazed me before hearing of what you have to contend with. I'm in awe of people like you.

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