V's Version

Dani suggested and then bought me some live pro biotic cultures to help get rid of the thrush in my mouth (a yeast infection due to long-term antibiotics). I had been eating yogurt but it wasn't enough. I was cool with trying to get rid of the thrush because it's a drag. My first reaction to seeing the pro biotic cultures was that if I can repeatedly down 3 bottles of the most disgusting and horrid CT scan contrast - I can swallow a half of a little bottle of what looks like curdled milk and yogurt. But it still looked nasty and I said as much as I reached for a cup. Dani said, "Of course it does."

Her words would indicate that she agreed with me but there was something in her tone of voice that seemed to me like she was mocking me - sarcastically indicating that she wasn't surprised that I complained about it.

Dani knows more than anyone how much I do NOT complain so my reaction to her tone of voice was immediate and strong: "Oh - yeah - well I would like to see YOU try to deal with being sick and in pain for this long. You. would. never. MAKE. it!"

It was then that I realized that I am holding some resentment. Not much - but some. I think it is very hard for the able bodied to understand the disabled (or differently abled), especially when the disability is hidden. To the outside world - I might seem fine. They might hear me once or twice with a wet rattling deep cough in our shared time and dismiss it with "Hmm. Bummer." They would have no idea how many times a day I do that or what it is like to have a dizzyingly low blood pressure of 90 over 50. They would have no idea what it's like to be constantly wanting more air than I can get. They cannot taste the bitterness that taints every taste or see the sores (and now the thrush) in my mouth unless I show it (ewww - don't bother.) And there is no way - even if I describe my eyes as having sand scraping under my eyelids - that a person would GET that (unless they really had had sand scraping across their lids... for years.)



I bear it. I have to because what the heck is the alternative? I have NO desire to be a whining immobilized person who lets the pain take away what is best in me. I keep going. I home school (see below) and I try my hand at art and I am a Unitarian Universalist youth group leader and I try to look sexy on dates. I transcend the hidden disability. Damn it. That's my job.

If I answer honestly when someone says, "Hey! How are ya?!" - ulg. It is too ? sad. Too down. So I rather focus on the positive - sometimes mixed with honesty. But all that focusing on the positive doesn't give me much outlet to say that my health really sucks and sometimes I am sick of it - OVER it completely. I wrote about it a bit last week but even then - I put a positive spin on it. I am beginning to see that all this cheeriness (while real) does not give space for the darker side. To deny that darker side is to disconnect with myself and when I do that - I end up with resentment.



Seeing the documentary movie "Crazy Sexy Cancer" last week sent me into a tail spin. There was one lone dissenting negative review for her (follow up) book, so I wrote this review today. It felt good to write it.

Seeing this movie sent me into a tail spin. Maybe it's because the movie was so highly recommended to me. I have been battling cancer since 2002 (with 5 years of chemo and more alternative-medicine treatments than I could possibly list here.) Because I have (an incurable) cancer and a crazy (unsexy) skin blistering disease that not many have survived, I have some street cred. Because I have had just an amazingly positive kick-ass attitude throughout, because documentaries are my favorite genre, because I am young and full of life, people figured I would love this movie.

Well, they were wrong.

It's not personal. Kris Carr was very clever to document her journey. I am happy for her as a person. The title is engaging and the follow-up book(s) and blog and product placement and advertising are marketing genius. Kudos for Kris and her beautiful friends.

What I want people to know is that there is a negative review out here for "Crazy, Sexy Cancer". WARNING: not all your friends with cancer are going to like this movie.

Some (like me) might jealously wonder what it is like to have a mother who can drop everything and set up headquarters in the dining room - a father to drive them to Dana Farber in Boston. Some might wonder how it was that an unemployed actress could afford expensive alternative treatments, yoga classes and an in-home macrobiotic chef. Some might wonder where the money came from for a film crew to document the whole glittering journey that launched a woman with cancer (who never had to face radiation, chemo, stem cell transplants or blood transfusions) to fame. Some might wonder, because they have not yet tried an anal dose of wheat grass juice, if they are somehow to blame for their condition because they have not, obviously, done everything to cure themselves.

I'm just saying that not everyone is going to like this movie. They might. It is, after all, entertaining and her journey is as real as anyone's. But they might not. Maybe you could preface your recommendation with, "Not everybody liked it..."