Nurse conversation, Friday morning:
“Swallowing is uncomfortable.” (She offered pain medication.) “Maybe. I think I should endure it, but maybe not. I had Tylenol this morning.” (She asked some general question like how was I feeling about having the trach tube.) I kind of unloaded a little bit of emotion on her with my facial expression and body language and I wrote, “It’s awful — just ugly, gross, disgusting.” She said things to console me and I answered, “I know, I know.” (She asked if I knew when I could go home.) “Doctor this morning was saying 2 – 3 days.”
(More nurse conversation, probably the next shift.) “The skin is stinging a little.” Now, the skin would be stinging because it had been cut into, because it had been wiped and wiped for two days now, and because the oval plate of the tracheostomy tube was at that point sewn to my skin with stitches. “The pain med last night was nice, thanks.” “Did my O2 come right back up? Maybe with a little activity?” It had, of course. There was a learning curve to making this silly O2 monitor work.
“Doctor visit: plan is for me to go home on day 5 (Monday.) Smaller trach on that day plus home care stuff like portable suction.”
(The hospital social worker visited: ) “Yeah, no fun. I unloaded on one of the nurses a while ago… (pointing to the other side of the page.) She wanted more privacy for our conversation at that point and decided to come back later.
(Nurse conversation: ) “There’s a little discomfort swallowing, a little stinging on the skin, I can feel the stitches(?) pulling.” “Can I take a bath or shower?” She answered me with a bit of a maternal voice, I thought, saying, “Oh no, honey. You have a tracheostomy!” I helped her organize accumulated clutter on the little bed table. “This mirror is an extra.” “and, I read about the TV charges?” “Oh no,” she answered. “There’s no charge for the TV.” This turned out to be wrong. I later got a bill for $60 for using the hospital TV that I never watched for one second. They’ll have to pry that $60 from my cold dead fingers. Fuckers.
(Later) “I haven’t done suction yet.” “I took a sponge bath. That was nice.” (She helped me do the suction thing.) “What’s the schedule for doing this?” I was asking because like everything in the hospital, nobody ever says the same thing, and what actually happens is never what people say will happen.
(Finally the social worker was back.) She had heard me say a word by covering my trach and asked if I could talk. “I think it’s more stressful to talk.” I answered, indicating that I would use the pad. She asked about how the problems started and what was going on currently. “I’d been having trouble breathing.” “‘preliminary diagnosis’ now is lymphoma. This is a new diagnosis.” She asked for clarification on the diagnosis and I indicated I knew nothing more by writing “doctor’s term yesterday,” and drawing an arrow to my words “preliminary diagnosis.” I was starting to get fed up with doctors and nurses asking me questions that I didn’t know, but she understood then that the offical report would come later. “I think that report won’t even be back by Monday when they discharge me.” She asked more about the history of how the problems started. “It was harder to breathe. CT scan showed a large “mass” around it.”
She shifted the topic to my transgenderism with some sentence including the phrase “I’ve heard…” “What have you heard?” I asked, encouraging her not to mince words. She was good then and wanted to establish terminolgy that I liked or disliked. I explained my ambivalence. “Nobody agrees. I’m not particular about terms.” I went on. “It’s been 1 yr now. Life’s been good.” … “Everything is ongoing.” … “1 yr ago is when I ‘went full time’ meaning going to work finally as a woman.” (She asked about surgeries, I think.) “I’ve had very little done physically. Everybody’s path is different. Mine is a bit unusual, but not unheard of.” … “No, not yet.” (Not sure what she would have asked about there. Name change, maybe?)
She asked about my support network. “Rather shallow. Lots of friends.” She asked about family. “I was out of touch with them before.” “Kansas.” She asked if I lived in an apartment or if I had roommates. “Apartment. No, it’s pretty new — a few months.” “One of them is a very good friend.”
Work now. “I’m an astronomer. I work with asteroids.” Of couse she commented on scare stories in the news. “I’m the person behind all of those stories. They take my boring data and make it scary.” Funding: “Congressional mandate that NASA funds this. I’m employed by the Smithsonian.” Telescopes: “Arizona. But we control them from here. Observe remotely from Cambridge.”
She asked questions about my past before that. “Missouri.” (where I was living before) “5 yrs.” (How long ago) She asked about my education. “It’s not really my academic background. They just liked my work.” (They being Tim, who basically got me the job here.) “Math, Comp. Sci.”
She asked about health benefits. “I hope so. We’ll see. You hear so many horror stories.” “Harvard Pilgrim.”
I think she knew I had bigger problems and asked something to bring them up. “I do have problems. Legal.” She must have commented at this point on how much was wrong in my life. “I seem to smile anyway.” Then my pad has some things I can’t remember the significance of: “No. ‘Community?’ What do you mean? I would love any information.” “I have very little money.” “I’ve found lawyers generally won’t do email. Just phone. I think they don’t want records to exist.”
Then for some reason we’re talking about my trach tube. Maybe she was frustrated with the pace of conversation using the pad? “He said this, but I don’t know what it means.” “I don’t know what parts are replaced or smaller. I’ll find out Monday.”
Back to the issue of support. “I might try my sister but i don’t know her # or address.” She asked how long I had been out of contact. “2 – 3 years.” She asked if my sister knew of my transgenderism. “I don’t even know.” “No, it’s that new to me. ” “< 2 yrs.” “I haven’t regretted a day.” She left then. It was lunch time for me. She wandered back through right after lunch and I flagged her down.
“Do you have a few more minutes to talk?” “I’m not sure my apartment is suitable….” I’m nearly homeless. What are my options?” Not good, she answered. She said that shelters aren’t suitable either and wanted details on why I didn’t think Stacy’s apartment was good enough. “Too many people, no space, and maybe worst, unsanitary.” “No, it’s worse. The plumbing doesn’t work well.” “I give Stacy a little money. She actuallly pays the rent.” The social worker asked if I couldn’t do various things to improve the conditions there. “I’m not in control of the situation.” She tried rewording and I emphasized by underlining my last statement and writing, “I don’t control Stacy.” “They choose to live this way.” “The courts have taken all of my money. All of my salary.” She asked how much of my salary they want. “more than I make at the Harvard-Smithsonian Center for Astrophysics” I wrote out completely, to make it look impressive. (How much I give Stacy: ) “$50 / wk.” … Now I explained to her why I was bringing this up with her now: “But I asked you back [to sit and talk more, because] you mentioned a nurse visiting me [at home.] I wouldn’t survive that. I imagine she would be copelled to report the place and it would be condemned.” I think she conceeded that I wouldn’t actually be required to allow a home visit. “Well, then there’s the issue of what is health for me. Like, I shower at work.” She asked how long I had been living there. “about 5 – 6 months. I had a nice apartment. I was jailed over this issue and lost my apartment.” She asked again how much of my salay goes to child support. “It’s more than I make. Thus I am continually in contempt of court.” She began grasping for ideas that might help me. “That would help.” … “I don’t know where your responsibilities end.” “Maybe.” “Ok.” She said goodbye and left.
Stacy visited:
I had been moved by now to a new room. The previous room was an intermediate care room with four beds. Three full at first, then all four. Very busy place. This room was a double and the other bed stayed empty for the rest of my hospital stay. “It’s nicer here, quieter.” “Did you tutor?” “They’re saying Monday.” I think I shook my head no when she asked about news, then I backed up. “Ok, so maybe I do have news. Maybe I only told Sheila this… The preliminary result of the biopsy is lymphoma. Final results will take a few days yet. So, he says lymphoma (if that’s what it is) is the easiest to treat. Radiation, chemo, no surgery.” (I’m sure Stacy’s heart sank at that news. She’d been reading up on crimes of the cancer industry and triumphs of alternative medicine.) “Hopefully the mass will go away completely. Then trach can be taken out & my neck would heal over.” She asked about an MRI. “I’ve been wondering about an MRI. MRI is best, I think, for showing exactly where cancer is. I saw a great display on this at the Science Museum.” She asked how symptoms could have come on so suddenly. “Well, maybe I do fine as long as I have 5% breathing capability, but I’ve been losing 10% / year for the last 10 years.” She asked if I thought I had really had cancer that long. “No, I was just giving an example of how it could have…” “Exactly.” She asked about those boxes that people hold to their throat to talk. “No, that’s for if the larynx is removed.” (‘In an injury?’ I think she asked.) “Or cancer.” … “would you mail a letter?” By this time in the day, the social worker had used a computer to find my sister’s mailing address and I had written her a letter. It was a numbingly pathetic letter telling her of my medical, legal, housing, and financial situation, and also telling her for the first time of my transgenderism. … “wait, I have to pee.” … “Address this to my sister, Sharon. Sorry, could you look up the zip code?” Stacy, computer illiterate, was having trouble understanding the printout of the search results that yielded my sister’s address. I had to cross out everything that was irrelevant and circle the important parts for her and explain, “That was a printout of a web search that someone here at the hospital did for me. All that other stuff on the page has nothing to do with Sharon. It’s just the way web searches work.”
She asked about my energy level. “Maybe recovering from the surgery. I guess that beats you down. Plus there’s a pretty big wound that is healing.” “I’ve been eating and stuff. I ate cooked carrots and a tuna salad sandwich.” “Yeah, I’ve been picking soft things on the menu.” She pointed out the lettuce and tomato I had left behind, amused that that was the only part that she would have eaten. “I didn’t pick that. They just thought it would complete the sandwich.
She asked about my hair net. I asked for it. To mark the boundary of where my hair should be. It’s modesty. Look in a women’s chemo unit and I bet they offer them something to cover their balk heads. So, I’m sure some women are okay with a bald head, but I shouldn’t be forced to, ya know?”
She asked about the book she brought me on evolution. “It’s a little dry. I had started it already.” She commented on my request for a lightweight book. “I just imagined being on my back and it’s tiring to hold a hardcover.” I think she mentioned visiting her ex, Julia. “How is she?” … “You spread yourself to thin.”
Clogs: “They’re expensive. Dansko.” She wanted to climb in bed with me… Pointing out the monitors, I noted, “They’d see my pulse spike.”
She apologized that she didn’t get word to Ethan that I was missing Youth Pride. She explained that she asked Jessica to send the email but that she didn’t. No surprise to me. It’s beyond both of their capabilities…for different reasons. “It’s no big deal. He knows, well I don’t remember exactly, but he knows I didn’t know for sure if I could go. Ethan won’t panic or be lost if he doesn’t hear from me.”
Random bits of conversation: … “We’ll both have to pretend.” … “Not sure if I saw the whole movie. Parts of it anyway, on Logo.” She didn’t know what Logo was. “The gay cable channel.” She was surprised that such a thing existed. … “Don’t know when that would be possible. I’d like hormones, I’d like my Prozac again.” “Breathing is a higher priority [than hormones.]” Talk of transition health coverage: “All depends on the insurance company. Actually there’s a strong case that its economically in the interest of insurance companies to pay everything, even surgeries. Depression, suicide, wrecked lives. Cost is extremely low compared to lots of other stuff.”
She asked about morning. “6 ish. Breakfast is much later, but they come and do stuff — rounds.”
Notes end there. Sometime after Stacy left I added, “Was very sad when Stacy was here. Couldn’t tell her that I couldn’t go home with her.”
Discharge nurse visit:
She introduced herself and asked if I had someone who would be able to meet me at the hospital to help me home. “Maybe, depending on the time of day.” “What are the hospital requirements?” “But do I have to have someone here?” I think every one of her sentences so far had included the word car or drive so I explained: “I hate cars. I ride public transportation.” She said something about doctors expecting people to ride in cars. “Have them look up accident statistics if they think a car is safer.” She was amused. “It’s total insanity.” She questioned if I thought driving was particularly dangerous in Boston. “Anywhere in the world!” “The first two cars ever made crashed into each other!”
Dropping that, she asked about religion. “I’m a Bright. Ever hear of this?” She hadn’t. “It’s a ‘naturalistic’ worldview, as opposed to anything supernatural — gods, magic, etc.” “Not exactly a religion. Look it up 
” She promised she would.
She commented on Josh, the hospital dog. “Stacy brought the dog.” She commented on the Jennifer Boylan book I was reading, “She’s Not There.” She said she had seen the movie Transamerica. “I thought it was well done. My message to everyone is that it takes hearing many different stories to start to get any idea of the complexity and challenges. Transamerica was one story, this is another. 1 + 1 = 2 = hardly anything. I mean, if you know only those two stories, you still hardly know anything.” She asked about Stacy, and how I ended up living with her. “She’s pretty visible around Cambridge.” “I was in jail. 35 days, then 5 months house arrest.” (Age of my son: ) “teen.” (Where?) “Kansas.” (How long in Boston?) “5 yrs.”
She said she had been to First Event(!) and that she really enjoyed seeing everyone in their finest for the awards ceremony. “Last year I went. It was the first year I knew I was trans.” “In the trans community, I have a huge network, but friendships are all very shallow.” … “Nothing in Kansas.” She tried to remember where FE was this year. “Peabody.”
Sock had just gotten off duty and made a brief appearance to say goodbye. Off the clock now, her smiling work face was gone and I observed to the discharge nurse, “poor thing looked beat.”
My notes got pretty scrambled around here and I’m not exactly sure of order or attribution. I think my conversation with the discharge nurse continued here into the more serious matters that perhaps she had been briefed on by the social worker, but possibly she left and this conversation was actually with the social worker: “Technically, I’m in the red every month. Stacy, who was here, took me in for free for a couple of months.” She asked more about the apartment. “Brewer St.” “Harvard Sq.” “Darwin’s” She seemed vaguely familiar with the location. “There is running water. Some drains don’t work, toilet doesn’t work well, hot water has to be turned on and off for the whole unit because some faucets run open.” “Filthy.” I caught a bad cold… that may have tipped me over the edge to land me here.” “It was.” “Honestly, I would probably take the suction unit to my office and sleep on the floor there.” “Harvard Smithsonian Center for Astrophysics.” “They do have a place [for sleeping? showering?]” Official policy is no, I can’t stay there. I’m not sleeping there now.” “It’s a 15 min walk.” … “Preliminary diagnosis is lymphoma.” Brainstorming, she asked if I was a veteran. “Navy” “79 – 81″ “All over” “California” “For a week, probably” “Stacy’s not computer literate.” She had suggested by now the idea of me staying at the YMCA after discharge from the hospital. Feeling desperation at this point, I was receptive. “If there is a room at the Y on Monday, does that work?”
I called the nurse after napping, about 4 pm Friday. Not sure how the day’s conversations fit around this. “I thought I should suction and clean soon. Can I get this [cafeteria tray behind from lunch] taken out so I have space to work? Also, a question — I should use fresh saline in this little tray, right?” “Could I get more paper?” (Sheesh, I was being a little demanding!)
Sheila visited Friday evening.
She had brought me a book, Terry Pratchett’s “Night Watch.” The author sounded vaguely familiar but the title sounded more familiar to me. “There was a Russian movie with that title a couple of years ago. I saw it at the Kendall.” “Thanks!” She asked about the new room. “The other room is for more intensive care. More equipment. More expensive.” “Of course, also possible that they finally faced the truth that they had a tranny here and though isolating me would be easier. (Sorry, paranoid thinking, as usual)” (No idea why I came up with that bizarre comment. I must have just been stressing over something trans related before Sheila walked in.) “They’ve done pretty well even without me coaching them or asking for anything special.”
She asked about my release. “Everything here is qualified with a “maybe.” “Monday release now seems mostly contingent on me having a suitable home. Stacy’s place really isn’t.” “It’s been a stressful day.” “They’re saying maybe they could release me to the YMCA.” She asked if I could go back to my old apartment, Al’s place. “Al would probably agree to that, but his landlord is out of town.” “I dunno, I could do it, but it would be a stunt, you know?” “Al really can’t make decisions like that. It would be taking advantage of both of them. Do I do that in the interest of survival?” “The Y is $50 / day.” “Al might take me as a ‘guest’? until the landlord returns?” “I could give him money. I wouldn’t have to be a guest in that sense, but he can’t really sublet or lease to me, legally.” “I hadn’t really considered this until talking with you just now, but I desperately need a week of stability here. May 20 is when the landlord returns and also coincidentally when my court date is.” She asked if I was ready for that. “I need lawyers. A social worker here gave me a couple of phone #s…” “I need lawyers because when I go to court alone, they throw me in jail.” “I wouldn’t be optimistic about guessing what they would be sympathetic to.” Poor Sheila argued that the courts couldn’t be so cruel. “They can. They do.” “They say with a straight face that it’s their job to throw me in jail, that those are the laws.” Sheila asked more questions to try to understand my situation. “It’s base on court orders from Kansas. They say they can’t listen to any arguments about the fairness of those orders. They just enforce them.”
I started a new topic: “So, related, I wrote to my sisters in Kansas. I felt so bad yesterday for dumping all my problems on you, with you powerless to help. You helped most by talking about my sister.” She indicated I shouldn’t have felt bad but was happy I had written to my sister. “No idea how how she’ll react. I dumped lots of news on her — medical, legal, gender. I asked for help finding a KS lawyer and asked to start talking with her again. I gave her the 8 Brewer St. address and my email.” Sheila asked about contact with my mother. “She’s very close with my Mom. They’ll talk.”
Back to the housing problem: “When they discharge me, thy want nurses to come and visit me a couple of times at home. When they said this, I realized they wouldn’t likely tolerate the conditions at Stacy’s, then immediately saw that i couldn’t do that to myself anyway.” “I haven’t told Stacy yet. She’ll be crushed.” (Sheila told a story then about some place she had seen or lived where the place was packed with clutter and garbage.) It’s EXACTLY like that with Jessica. They don’t have dogs, but the place is filthy. Plumbing doesn’t work, etc.” … “I should ask Al for one week, huh.” “The world changes on May 20. The court date and the landlady returning.” “So, I have one week to talk to a lawyer. If I can’t do that, I think I’m going to jail anyway. Only after that date will I have any idea of what I can afford. Could be just a homeless shelter.” “Or beg charity from people I know…” “I might have to ‘couch surf’ for a while, being careful not to wear out my welcome.” Work: “I have sick days.” “Not a problem.” “Anyway, if I have a computer in front of me, I can work now.”
The topic was hard, we took breaths and looked around the room. “Thanks again for the book.” She asked if I had heard of the author. “Well, I thought I had, but I don’t recognize any of those other titles. Maybe I haven’t!”
She asked if I would like her to invite Al to come to the hospital but not mention to him the question about housing. “I don’t know… hm… Because, if you just say that, he might choose not to visit.” She saw that she would have to be upfront. “That would be fair to him. It would give him time to think of a way to say no if he really didn’t want to.” “You know, saying no is the hardest thing in the world for him to do. That’s why I feel gu8lty asking. I think he would say yes, then leave town for a week before he would say no.” “Al’s mental illness is that he can’t value his own interests enough to say no to inappropriate requests.” Sheila was at a loss then, as to what made sense to say to Al. “You can tell him the situation. He’s seen Stacy’s place, he’ll understand my problem. You can tell him that I need a place for one week and ask if he would come and see me (or, I suppose, he might rather say yes or now on the spot — some people hate hospitals. Done’ know if he’s like that or not.) She asked if she should come with him. “I think he would really appreciate you offering to come with him.” … Silence. … “There. That’s settled ” Sheila smiled, looking definitely unsettled. “(I was just being silly there) I have to laugh at myself.”
“Omg, I hate to tell people all my problems but I kind of had to with this social worker. Our very long talks today started with her observing how happy I seemed and me saying how everything was good. Then the conversation spiralled out of control as I had to tell all.”
“Otherwise, recovery is all going well.” “The diagnosis has to be finished first.” “Several days yet.” “Sometimes next week anyway.” “Just in time to tell the court.”
The nurse came in to check on me and ask if I had really eaten my whole dinner. “Well, I left a couple little pieces of turkey but ate the cranberry sauce not on the list.” If it’s hard to swallow: “It’s just that the stitches pull.”
To Sheila then, “So, I’m missing my social events this weekend, but a friend at work invited me to to a thing Wednesday.” “I hope I can go.” She asked about some Pride event. “It already happened.” I forget the date even, but by pure coincidence, it was the day last year when I started work as Sonia. They celebrate and recognize this every year now. It’s one of the first events of “Pride season” — events that run through spring and early summer.” “The work thing is to celebrate 20 years of the Harvard Union of Clerical & Technical Workers.” “So one of the office workers invited me. It was a sweet gesture so I hope I can go.”
Picking any little thing to talk about then, I said, “And I saw a helicopter outside today.” “Sorry That’s about all the news I have.”
Sheila asked about our mutual friend and ex-roommate, Lynn. “Haven’t talked to her in a long time now. Don’t even know where she is on her wedding schedule.” “No. The quick wedding for convenience is over, but she’s planning a big white wedding for sometime, 2009 maybe?” She asked if I was tired of writing. “I’ve been writing all day like crazy.” “One little nap, a little reading, otherwise all writing.” She asked if she should try to get Al to come tomorrow. “Or Sunday, that’s his day off, you know.” She thought he had Saturdays off too. (Actually, she was right.) “One of us is wrong, bet he’s worked 6 days a week for as long as I’ve known him.” We said goodbyes. “Thank you. You’ve really helped.”
” She asked if she could bring me anything, like a book to read. “Something paperback — lightweight to hold. Ask my roommate Stacy and she’ll pick something.” I gave her Stacy’s phone number and she said goodbye and left.