I went to go visit D today. They took him out of the burn unit and now he is in the regular hospital ward waiting to get the staples out of the foot they grafted and go to rehab. So still don't know when he will be out. If he is in for 30 days (and its already been, like, 18) I lose my CNA money for the month for caring for him. Even though I've still gone over to his apartment and have cleaned infection off everything, feed the cats, get the mail, I'm getting the carpet steam cleaned, etc. Oh, well.
The good news about him moving over to med/surg is that the babies can come visit him. I don't want them in the hospital too much because hospitals are horribly infectious places. But today I took Aaron up while Naim slept in his car seat with my dad in the hospital lobby. Aaron sat in the bed with D and was fascinated by the mattress (an air mattress with a pump that adjusts the air pressure based on movements). D played with him and he laughed and laughed. He has a more normal, cute baby laugh now. For a while there, he had more of a beavis and butthead grunt of a laugh. Made me worry for a minute, there! D says my pictures don't do Aaron justice, and I think he is right. Aaron is just an easy-going, very smiley baby. He smiles all the time and it can just light up the day. But every time I hold a camera up to my face, he clams up and gets a serious, confused look on his face.
I wanted to show Aaron D's foot--or lack thereof--but I forgot. I wanted to see if he would notice or not. The foot is amputated just a few inches above the ankle. It looks exactly how you'd expect it to look, but whenever I look at it, my eye or my brain seems to complete the picture of a whole foot in my mind. It's weird. It seems like I shouldn't be able to pass my hand through the space where his foot was. I guess it will take some getting used to.
This seems like as good of time as any to explain D and my relationship/living situation. In brief:
We met in 1994 when the University of Kansas accidentally assigned us the same university housing space for people with disabilities. (They put us all down in the basement together.) We lived there together for three years and I served as one of his attendants. I dated his older brother, Q, for a bit. D and I became good friends.
In 1997, D decided to transfer to Oregon State University. He did so at the urging of his brother, M, who lives out here, because of the weather, and because Oregon is a Medicare Waiver State. (That is when a person dependent on attendants can get the medicare money to pay them rather than that money being used to place them in a nursing home. More on that some other time.) I came out to help him get settled for a few weeks. I really liked the Northwest so I went back to Kansas, finished my master's thesis, and moved to the Portland area later that year. He lived in Corvallis and I lived in Portland and we saw each other on weekends and continued to call each other nearly every day.
In 2000, D took an internship with Sequent Technologies in Portland which was soon to be eaten up by IBM. D lost his job during the IBM merger. He had a few credits left on his degree. Shortly after that, I lost part of my grant-funded FTE at my job at a Medical Center and D and I decided to move in together to save expenses and so I could again work as his attendant.
Then began our series of tragedies and crisises. In 2000, I had five surgeries on my kidneys for kidney stones. In 2001, D's mother had a benign brain tumor that was operated on and took several months to rehab from. In 2002, D became deathly ill for months with a decubitis ulcer and a serious MRSA infection. This took around 8 months of intensive medical care and hospitalization to heal from. Virtually immediately after D's illness, my mother was diagnosed with a terminal brain cancer and died in 2003. In 2004, I became pregnant with twins (good, but medically complicated and scary) and I had a retinal detachment and lost my vision in my right eye. Oh, and D fell and broke his leg in three places. Now here we are in 2005, and D gets his foot cut off. (You can see why I was so angry with him. I wanted some relief from this stuff and he went and got sick almost on purpose!)
But let me back up a bit. In late 2002, I missed a lot of work because of D's illness and my mother's illness. I was not picked up on any new grant projects at work. (Also due to W's administration cutting a bunch of educational and research funding.) I continued to work for them as an outside contractor until 2004. Prior to her death, my mother wanted to buy a house out here and perhaps live part-time and retire out here. After she died, my father bought a house out here. When I became pregnant with twins, I really worried about the space and stability issue with the apartment that D and I were sharing. So I made a deal with my father that I would move into the house and pay all the expenses. (utilities, taxes, insurance, etc.) So I am a renter and have the upstairs to myself and the kids. My father has a bedroom downstairs and lives part-time here, and part-time in Kansas.
This house is not ideal for D. He can get into the bottom floor by going through the garage, but he only really has access to the kitchen and living room. He moved into a smaller apartment that is about 3 blocks away from me. This is not an ideal situation for us, even though I get to live in a nice house for below market price, ideally we would have our own place somewhere that he has total access in.
So what is my relationship with D? I don't have a word for it. Well, the best I can do is he's family. He is my partner. We can't get married or he will lose his medical insurance and Medicare Waiver. (Gays aren't the only ones who can't get married...Lots of disabled people can't, either.) We've been together for 11 years now. I dated other men during that time, but my relationship with them was never as good as it is with D, so slowly I just sort of quit dating. We plan our lives and our goals together. Our extended families treat us as partners. I have been called his wife, his girlfriend, his "special friend" (eeww!) his Significant Other, his "caregiver" (double eeewww!), whatever. I don't care anymore. It is what it is and it works for us.
I don't know how long we'll stay in this living arrangement. There are things I like about it and things I don't. I'd love for us to maybe be able to move out of Portland to a college town or smaller, more rural town like Corvallis. But I have a need for public transportation and he has medical needs, so we can't go too far away from a big city. I like Portland a lot. But being from the Midwest, I miss the open space and land, too.
I will tell the story of how he became the father of my children another time. I'm getting tired now! This quick update turned looong!
Hey there! Glad that D can see the boys now! I do get it about the missing body part. I think we form an idea in our minds and it just stays. And thanks for the rundown on your relationship. That is a real stupid drag/ beaurocratic bummer about the marriage thing (if you want to marry that is). I hope you get a better living situation that is more accessible when D gets out of the hospital.
Posted by: cluttergirl | August 17, 2005 at 09:07 PM