Thirty years of misdiagnoses, bad doctors, and medications led me to the thousands of people who are of the same mindset- Our doctors are killing us. Let's find out what we can do for patient advocacy, and help educate and be pro-active patients.
Sunday, December 21, 2008
Being Different Is Being Better
Tonight the Learning Channel, a branch of Discovery Television, showed a special taped over the last year or so called World's Smallest People. Because of my own illness, I wasn't able to view the last few showings because I was wiped out. But, tonight it's on early enough, and there as big as life is my friend Tanyalee Davis.
Many of you know me as a stand-up comedian. I met Tanyalee online years ago, as part of a group of comedians who talked about our road gigs, clubs, and comedy in general. She always struck me as someone who just got life by the balls, and knew exactly where and when to tug. She's also the most secure person I've ever met, as far as being who she is in her own skin. Tanyalee is also, coincidentally, a dwarf. This makes sense about why she was on the show I'm watching. When I first saw her on stage at the Improv, we were doing a show reuniting all of the comics, including Doug Stanhope, Steve Marmel, and Rob Little. Just a great group of people who had a love of making others laughing.
When she met me, I was going through some major depression, or at least was told I was. I was not as thin as I wanted to be, but certainly not large. The meds put on about 12 pounds, and it made me uncomfortable with myself. And, she was just all out sassy, sexy, and never once came across as "dwarf", like people would remind us she is. In case she forgot, there occasionally were those who stared, pointed and made comments. It bothered me, but not Tanyalee. She used it as an opportunity to pitch her show. That's when I knew I'd be friends with her for a long, long time.
Not too many years ago, I started feeling uncomfortable with myself again. I wrote to her, and asked how she could be so secure with who she is, and not feel depressed about feeling "not the standard of pretty". I asked this as I was feeling very unacceptably of who I am, and what was becoming of me. Prednisone was coursing through my system, and I was getting depressed over my upcoming wedding. She wrote to me, "Who cares? What do you feel like?" And that made more sense than anything I could have gleaned in Self, or via a chat board.
She and her sister stayed at my apartment once, back when I lived in a two room studio. I marveled over the life changes she had to make that I completely took for granted. When she had to use the restroom, she needed a stepping stool, and a scratching stick that allowed her to wipe herself. When she wanted to go to bed, she used a stool to get up to the mattress I had laid on the floor. To open the fridge, or even to pat my dog, (a shepherd mix), she would have to use furniture to position herself. Her sister, my height, let me know about their childhood in Canada and the ways Tanyalee would handle things like a water bubbler in school, or the gawks of strangers. Her sister was a big fan of what was accomplished simply because Tanyalee wasn't different- she was better.
I think that attitude made a huge difference in who Tanyalee is. She can get on stage in front of hundreds, or thousands, and confront them with their own assumptions of a "midget". She doesn't wear kids clothes- she wears breast revealing, sexy, adult shirts and dresses. There is a little alteration here and there, but she isn't a doll, nor does she dress like one. She's a married woman with a full sexual life, and she really LOOKS like a woman who is comfortable being sexy.
Almost a year ago, she had to start a series of spinal surgeries due to an issue that is part of the type of dwarfism she has. Spinal stenosis constricts her spinal column, and was leaving her with pain when she walked. It wasn't too long ago that she had also been hit by a driver who claimed she "fell from the sky". Marty, her husband of ten years, stayed by her side as she went into hospitals, and again for the weeks of recovery she faced in a rehab hospital. I was fortunate enough to be there when she was walking for physical therapy, and got to see how powerful she truly is. Where most people going through this surgery would take months to walk, she was on her feet in a matter of weeks, and walking in circles around a big room. She is simply too stubborn to be "disabled".
Tonight I got to see a bit more of Tanyalee's determined spirit. She is shown hiking with her husband up Red Rock Canyon. The show reveals her horrifying issues with her spine, and her surgery. I got to hear the behind-the-scenes stories as she was filming, and how difficult it was on she and her husband to handle cameras being part of their moments. I got to hear her husband as he called to let me know, "she walked- it just hit me she could have died, but she's walking. I love her so much." Marty is the best. He even helped ME on Thanksgiving, get food out to 40 people!
There was a time in the rehab center when I wanted to strangle doctors. They started to talk to her as if she was a child. The woman is in her 30's and lived a bigger, richer life than most of the staff there. She was in great pain, and needed assistance after a session of vomiting. A nurse let her stay in that state for hours until her roommate finally called for them to come help her. That was all I needed to hear, and I had to be at the place every day just to know she was getting SOME attention. She doesn't ask anyone for special help, so the idea that she was in tears or needing some one to listen just burned me up.
At one point, I was in the Patient Advocate's office, demanding that she be heard, and at least told what she was to expect of her care. No one was giving her answers. They kept putting a later date for her release. Had she been allowed to do therapy as she felt stronger, she could have been out much earlier. I said, point blank, "You need to treat this HUMAN with humanity and dignity, and NOT like an infant who needs coddling." I think that was what finally got through because in just minutes, her doctor was by her side, and not speaking in the condescending tone he had been for days. Her body is small, but her mind is ginormous.
My friend Tanyalee isn't a "dwarf", nor is she a "midget". She's a big heart who happens to live in a small body. I watch her struggle with things other people don't even think twice about, such as getting on stage, or riding in a car, or even going out drinking and having a karaoke night. But she's not going to NOT live her life and that's inspiring. There are days when I can't even get out of bed, and I think "I wish I could be like Tanyalee and just do it anyway." Some days I take that challenge, and other days I simply cannot. I still struggle with self-image, as any woman may, but I think of how absolutely alluring my friend is, and remember that not everyone thinks Cindy Crawford is pretty either. Tanyalee is just a wild red head who is easier to pick out of a crowd, but she is who she is- and better.
Today's questions: Who inspires you? Who helped change your view of yourself? Are there people in your life who are considered different, but are part of your normal world? What do you feel like when others point out the differences?
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