In my last post, I told you about my friend "Eva" who is going through her own personal nightmare.
She has something called dermatomyositis. You can google it to see the symptoms. Web MD describes it as "a rare inflammatory disease that causes muscle weakness and a violet-colored or dusky red skin rash." I describe it as Living Fucking Hell.
Web MD doesn't tell you that the muscle weakness also means that you are too weak to walk. . . or to breathe. It doesn't mention that the violet or dusky red skin rash feels like an acid burn.
I'm really pissed at dermatomyositis.
As I mentioned last post, "Eva" has counted her blessings through this whole thing. As far as I know, she hasn't said FUCK THIS even once. She isn't really a "Fuck This" kind of person. So I am saying it for her.
A week ago last Thursday, she & I chatted on the phone for about 45 minutes. We laughed and shared stories. We planned on me taking her to lunch and a movie for the following Tuesday. I was psyched. She is always so fun to have lunch with.
I bought her a journal as a Christmas present. It's chocolate brown with purple, violet and pink circles on it. I figured she could write down everything she is going through and then use it to write a book which will sell a million copies. Or she could use it for grocery lists -- either way.
We didn't make it to lunch on Tuesday. Instead, she went to Houston to receive a chemo treatment at M.D. Anderson. She really hoped that getting chemo would help get rid of this fucking disease. Unfortunately, she wasn't strong enough for the chemo.
She had an awesome Christmas with her family. She and "Tom" have 2 incredible kiddos -- "Molly" and "Evan". "Molly" is about 9 and "Evan" is 7. These kids have been so great with their mom -- helping around the house without being asked, and cuddling on her when she needs it. "Eva" spent her Christmas with them and by all accounts, it was awesome.
December 26th she was in ICU on a ventilator. As of this writing, she is still on it.
In my last post, I told you that she & I met when we were in the Junior League (JLCC). Neither of us had kids yet. The first year of JLCC, the provisional class spends each meeting at a different community resource, learning about areas where we might want to serve our community. It's really cool.
One meeting we were meeting with nutritionists who were explaining the problem of childhood obesity.
The Junior League tends to be composed of women who range from a size zero to a size 10. I am not picking on them --they are nice people and they are my friends. It's just that "Eva" and I were hovering around the 22-24 mark.
When you are a size 22-24 in a room full of size 6s, you tend to be self conscious when discussing childhood obesity. At least I was. I was a fat kid. A really fat kid. The kind of kid who gets sent to nutritionists to deal with my "problem". All of those memories flooded back to me as I listened with my petite friends. I felt gawky and morbid as hell.
During her presentation, one of the nutritionists affectionately referred to her patients as "Chubbos". The other ladies tittered.
"Eva" looked at me and said "How insulting".
Here I was feeling like a circus freak and feeling guilty for being fat. Eva had the presence of mind to be insulted.
Because insulting is the perfect word.
This nutritionist is trying to help these kids. But she didn't respect them enough to keep from calling them names behind their backs. She didn't mean to be hurtful. She just didn't think. She didn't know what it is like to be a fat kid and to be called names.
I know what that is like. And so does "Eva".
Instead of being self conscious and uncomfortable, "Eva" brought the insult to the nutritionist's attention. She did it gently and kindly, instead of angrily and defensively. She used it as a teachable moment.
That was in the year 2000.
"Eva" is handling this illness with class and courage, but she's always had guts. She's always had self respect and she's always seen the best in people.
In the year 2000, "Eva" gave me the courage to start standing up for myself.
I never told her that.
As soon as she is able to have visitors, I am going to go tell her.
Pray for her, OK?
I'm praying for your friend momma!
ReplyDeleteDone!
ReplyDeleteOh mary. praying as well. and as a size 24 i too was insulted!!!! you are brave and beautiful! never sell yourself short! you always have been a strong beautiful woman!!!! xoxoxoxoxo
ReplyDeleteNothing but good thoughts and love heading her way from me.
ReplyDeleteLots and LOTS of prayers... I'm on it, Mary. (And tell "Eva", too!)
ReplyDeleteOh, how I've missed reading your blog. SO much. I love your honesty and insight. Finally had time to catch up reading over coffee this morning.
I passed your blog on to my "mother-in-law" (the BF and I have been dating 9.5yrs, so I guess she's common-mother-in-law?). Anywho, I'm hoping she'll find her inner Mary: someone who isn't afraid to call someone's bullshit but who also has the capacity for humility, appreciation, and sense of accomplishment. She's also a sassy Texas lady, so I'm hoping a break from the "Suuuuthun" SC gals will refresh her - she's starting her own fitness/health journey, and I'm so proud.
Thanks for taking the time to write, Mary. Your voice is always a good one to "hear" :)
Sending her positive thoughts. And I thought I would let you know that I have a patient on a ventilator for this same condition right now as we speak. She's young, too. It's times like these when I hate my job.
ReplyDeleteAndi I'll pray for your patient too. SUX
ReplyDeletePraying for her.
ReplyDeleteAnd yes, even though we may appear tough on the outside, we all go through "Fuck This" times. We just don't let anybody see them.