All of those thoughts are true: I am very grateful that I don't have a brain tumor, MS, cancer, and that I am not paralyzed. On the other hand, just because it isn't cancer doesn't mean it doesn't suck. My sister is a cancer nurse and she said this to me one day: "Many people make a full recovery from cancer and go on to live full, happy lives."
Just say the word cancer, and the casseroles and the sympathy will start piling up. Say IC, FMS, CFS, or back surgeries and people's eyes will glaze over from boredom. Trust me. In my non-blogging life, people know that I have health "issues", but they do not know the extent of it. I really try not to mention it too much or complain about it too much. But when I do voice a concern, there is nothing I hate more than someone trying to get me to see the bright side. Like, I spend all day, every day, trying to see the bright side. When I can't, I just need a little validation that there is in fact a dark side. I cannot be relentlessly upbeat.
Today on Facebook I posted something about how I wish it were summer and I was swimming in my pool. Someone posted back and said, "Well at least it's not November and you don't have the whole winter in front of you."
Uhm, first of all, no shit.
Secondly, if it was November, I wouldn't be so sick of winter.
And for the record, I wouldn't turn the clock back to November for anything. Since then, my mother's husband died, I went through a medical detox for a drug I never abused, and I have endured my daughter's two hospitalizations from drug/alcohol overdoses.
(On the bright side, I don't have cancer.)
At the end of the day, a little validation goes a long way. For example, to my Facebook post where I wished it were summer, my
See, I always end up seeing the bright side; I am an optimist.
But every once in awhile, I need to acknowledge the dark side.
Chronic illness isn't pretty. It is painful and sad and well, boring. And exhausting.
I am exhausted.
(At least, I have a warm bed to sleep in.)
It is entirely possible, although being at home alone and being inside your head with illness are most definitely lonely, that you are not alone. Last night, at 1:30 am, I finished a marathon of Upon the Heart blog reading to get through them all. I have been waiting for your latest post.
ReplyDeleteYou blow me away. I though I was going to cry, but I could not cry. The only explanation was that your writing and attitude are sublime. It is the first time I have read anything that expresses not the physical pain of chronic pain, but the psychological pain of pain. While running, I composed in my head a blog about your blog. I just hope I can do your words justice.
It took me a long time to get to the psychological pain of pain. Now I am being flooded with it so I hope soon there is more of a balance. It does help to write about it, and I am really looking forward to reading your blog! Let me know when you post it.
DeleteThese are my blog posts for this year's MS150 training and fundraising.
Deletehttp://main.nationalmssociety.org/site/TR?type=fr_personal&fr_id=20226&px=7044512&post_id=57069&bpg=rlist&pg=personal
I was able to write this first blog post only after writing and then rewriting and reading my story "The Girl with the Scars" to a public audience - writers, their spouses and friends. In this, I tried to express the layers and layers of psychological pain of pain (mine, a quite different experience and reasons) and the impact of pain on personality.
DeleteTell me how to find your story The Girl with the Scars.
DeleteIt's not published or posted anywhere. I can send it to you, if that is possible (given your anonymity, which I understand and respect).
DeleteI am just back from the opening of the Sketchbook 2013 tour, Austin stop. Last year, signed up to participate, and then visited the tour in Austin. It is an incredible story about the first book I was handed. This year, mine was in the collection (and it did make it to Austin). I hope you check it out. The digitized collection is beautiful.
http://www.sketchbookproject.com/sbp2013
Deletemrs.dubose1@yahoo.com
DeleteTo Kill a Mocking bird is one of my favorite books. I just bough it recently to re-read it to see if I still felt the same. And I do. Today, I opened it up to see if I could find the section about Mrs. Dubose. Oddly, I opened it up to exactly that page and read it to my partner.
ReplyDeleteBest book ever. I love it differently at different ages.
DeleteBy the way, I posted as I went along reading your blog from Oct. 2012 to the present. I found I could not stop because, as with a thriller, I needed to know what happened to the character. You kicked opiates! Horrah!
DeleteGetting off the opiates was a huge achievement. I never knew that you would become physically dependent if you didn't abuse them. A lot of the mopiness, anxiety and insomnia is from not having bounced back yet. Hoping still for much better days ahead.
DeleteThe thought I have on the commenter is that, in my experience, vp never complaining and always looking on the bright side, people will find it hard to get used to allowing you to be dark. You've presented this optimistic presence for so long that there will be almost a backlash when you try a different perspective.
ReplyDeleteEh, or maybe I am crabbier than I think I am!
ReplyDeleteWell, that may be true! I shared your blog on FB with a writer and chronically ill colleague. She read and replied that she is not anonymous on her blog, hence her choices. However, she said "This is a beautifully written, poignant post." She shared it with 10 friends.
DeleteThis is her blog: http://www.lanedev.com/
Thank you for sharing my blog. I am hoping to form a community here of people who know the heartache of pain and illness. All are welcome to join! (I am going to read your blog tonight, so I will get back to you on that.)
Delete