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HANNAH, Hospice Social WorkerTOMMY'S story, part 2* [part 1] [part 2] [part 3]This conversation occurred very late at night on AIM. The entire conversation is presented with very few changes.
Age 28 AIDSA LIVE INTERNET CHAT BETWEEN
HANNAH* AND STEVE SCHALCHLIN.
A note from Hannah*
Hannah: we've had another big turnaround.Tommy told me that he wanted to die at the Hospice House, not at home. Told me that we were getting close and I needed to hurry and get him there. I drove the unit mad advocating to get him in. Long story. Insurance crap to contend with. Went straight to management... pleaded his case, blah blah blah.
called this morning to let him know we had a bed. he was real happy.
called again closer to the time the ambulance was coming to get him.
Steve: this is so heartbreaking i don't want him to die.
Hannah: oh god, I don't either.
Hannah: his mom got on the phone crying and asking me if this was it. this is a really hard situation.
Steve: but he'll be close to you.
Hannah: I cant promise anything. I don't know if this is *it*.
I explained to her that we just have to take it one day at a time... i hate saying that, but it's true.
she said she didn't think she could handle him leaving and I asked if she wanted me to be there when they came.
Steve: oh good. she wanted you there for the ambulance?
Hannah: she said she did. yes.. i think it meant a lot to Tommy. He's so very protective of her.
then she put Tommy on the phone and he was just so surprised that I would do that... (????)
so, I went. and he greeted me with a bucket of
vomit.Steve: LOL
Hannah: He was an absolute wreck.
Steve: oh that poor baby
Hannah: said he wasn't ready to die. it was awful.
I told him he didn't have to stay on a
schedule. we have no agenda, i told him.Steve: great great
Hannah: he kept apologizing to me!!! Said over and over i'm just not ready, i'm just not ready.: i just kinda rocked him and said it was okay. that no one was mad at him or expecting anything of him... it was KILLING me.
Steve: oh i guess so.
Hannah: anyway, his sister was there and I met her and loved her immediately.. she kept thinking she screwed up because she told him that she wanted him to come back home when he was all ready to go to Hospice. and die.
Tommy's mom wanted to stay and talk to me at the house and the ambulance was ready to leave. the driver came back up to the house
and said "Tommy would like someone to ride with him"Hannah: his mom says, "tell him we'll meet him there". I think she was so emotionally distraught that she didn't realize what she was doing. I stepped in and instructed her to get in the ambulance. Told her I'd meet her at the Hospice House. I think I was a bit pushy.
Steve: LOL GREAT
Hannah: I followed them back. Stayed in the room with him all afternoon. His sister brings in this tiny bag that he had requested. he pulls out his baptism certificate newly framed. and the ROCK I gave him.
so I of course lost it. god, it doesn't take much. had a long talk with the chaplain this morning. it was really helpful.
Steve: i'm listening to all this. just letting you know.
Hannah: I know you are.
i'm pretty chatty, huh?
you knew I was gonna talk about this, didn't you?
Steve: what did you talk to the chaplain about?
Hannah: just how I can't stop thinking about him and I feel like I'm missing something big. I'm just struggling with how to actually help him.
Steve: i WANTED you to talk about this. in fact, i'm going to save this conversation in my files.
Hannah: I feel like I've come to a major roadblock.
It's so frustrating for me. I just want to be sure that I've done all I can and said all the right things. I know that so much of this has got to be up to him.
Steve: it always feels this way on THIS side of having a revelation
Hannah: so what do you mean by that?
Steve: as you said, all of it is up to him. what you do is create an atmosphere of love and freedom.
Hannah: Here's what I told Tommy. I said after watching this movie last night (What Dreams May Come) I feel like I have a better understanding of his images. and I told him what I made of the
movie.... the message.. it's all in our mind. Hell is what we imagine it to be. Heaven the same.I told him that he's received forgiveness from everyone...friends, his father, his family. God know's I'VE tried to reassure him that he's such a good person with such a big heart.
I told him that I think the only thing left is to forgive HIMSELF. I told him I wish I could take away all the scary images. all the evil thoughts.
I told him that I wanted him to picture himself in heaven.. to describe it to me. He said he doesn't believe what it says in the bible about the pearly white gates.
Then he describes this beautiful landscape. down... a wide open field, one weeping willow. a pond. very lush, green. I asked all kinds of questions until I too could picture it. perfectly picture it.
THEN I grabbed the art therapist and gave her the description. And she sat and sketched it for us. Tommy corrected her when she was off a little.. and added a few things.
Steve: brilliant.
Hannah: and she's going to paint it for him this weekend and we'll make a ceremony of sorts to hang it for him. in the meantime, I'm going to take my Bill T. Jones tape to him tomorrow and watch it
with him. AND, I copied Jess Carey's play and plan to read that to him. i think it's such a positive and
beautiful image.and.. here's where YOU come in. his sister mentioned to me that Tommy had shared with her the tape I gave him with your songs. she wanted to know more about you so of course I told her the story. She said that she thought she understood her brother until she heard Friendly Fire and then realized that she hadn't been listening to him.
it finally made sense to her. she could understand where he was coming from and accept it. then Tommy chimes in.
he said that his sister had asked him if he wanted to pack "Hannah's tape" to bring in. he said there was no need. he had every song memorized.
isn't that GREAT?
I had no idea he listened to it so much, but he has. and it was very important to him that his family listen to it as well.
I told his mom that I would be sure to let her know when you might be coming here. She'll want to meet you.So will Tommy's sister.
Steve: you know, this is a play.: it's a beautiful story, the two of you there. him looking for absolution for imagined sins, you trying to learn his whole life story before it's gone forever.
death is hideous in its presumed inevitability so you have to just roll with it.
Hannah: He was so touched when I told him
I've written about him. He says my writing will be his legacy. I think he's still shocked that I talk about him so much.Steve: oh yes. i want to tell him that having someone like him hear the songs is so different from just singing them for people who haven't lived through the experience.
if he's practically memorized them, then it means he "got" them. i mean REALLY got them.
Hannah: yes, I know you are right. I know he got them. I had asked him if he wanted to talk to you and he is interested. It was just a real hectic day and he was so nauseated and so sick.
Steve: i would be so nervous.
Hannah: huh?
Steve: what?
Hannah: what?
Steve: i said i'd be so nervous.
Hannah: nervous about what? talking to him?
Steve: it's not obvious? really? yeah, talking to him. he's the real thing. he's actually going thru it.
Hannah: oh you wouldn't be nervous if you could meet him. he's so calm and gentle and so appreciative of every little thing.
Steve: my heart will be breaking.
Hannah: yes. i can promise you that. there's one piece that I am kinda worried about now after telling him your story...
I just told it, but I think I may have screwed up here... he's said all along that he is not living. he's existing.
Steve: i understand. dickie and ghost both got to that point.
Hannah: he's completely emaciated. he has CMV and MAC
Steve:i've seen this place. cmv and mac are absolutely hideous
Hannah: he feels that he's getting so much pressure to LIVE. and he hangs on for his family because again, he worries so much about them.: and they have reached a place where they accept him. and where he's coming from.
then here I go, talking about how you are near death and you started writing music.
Steve: i remember just kinda hoping ghost could die. he "only existed" for two or three years.
Hannah: oh, i don't think I'm explaining this well.... I feel like Tommy was covering his face as I was saying this, because here I was, the one who accepted that he is ready... and I'm talking about being motivated and getting the will to live. and I started to justify it, felt so awkward. saying that Tommy is different.. there's so much more happening in his body... and I was just burying myself deeper... and all along I can see his family hanging on to this idea of the will to live... being "almost dead" and I regretted saying it.
i don't know if I'm making sense.
I don't know what I'm saying anymore.
Steve: "I was looking forward to the end but still I'd fight for each new day." [lyric from Lazarus]
Hannah: yes, but Steve, you started writing. you found a reason to live. You got BETTER. Tommy can't do that. He has drilled this in my head. He has pleaded for me to help his family understand that his body can't take anymore. he has nothing left to lose in his body mass. nothing.
Steve: i was never able to write or create when i was as sick as he is right now.
Hannah: he shows me his body and says how much more can this take??? he vomits every pill. oh god.
And I know that you want to give him hope. and I want to give him hope too. but i also want him to be able to go peacefully. and that's a little different. you just have to change what you are hoping for.. but you never lose hope.
I would betray him if I started to talk about the will to live. it's so difficult to talk about this with you. not that you make it difficult, I do.
Steve: i would want to tell him that i have been close to where he is, that i had every moral right to give up, but i just didn't. it was my first time to get sick. i didn't know i had the option.
Hannah: its' just different. But it's very important to Tommy that he NOT be viewed as giving up. I think I just can't talk about this anymore... I just need to go to bed I think.
Steve: yeah. take a break. get some sleep. you done good.
Hannah: I'm sorry
Steve: you done REAL good.
Hannah: good night. xo
Steve: good night angel.
Tommy actually improved somewhat during his four day stay at Hospice House. Not so much physically, but emotionally he achieved a new level of awareness and understanding. We'd had some pretty amazing conversations in those four days.Although his insurance had approved a 5 night stay, Tommy decided that he didn't need to be away to die. He decided that he was homesick. He decided that he belonged at home.
On day four, we discharged Tommy from the Hospice House to his home. When I started to make the arrangements for an ambulance, he told me that he wanted to go by car. His mother drove him home.
HANNAH*
*All the names, dates and locations in Hannah's story have been changed to protect patient privacy. These stories are offered to the reader as part of our ongoing patient/caregiver communications program. All materials © 2000 by the author. http://www.bonusround.com.