Saturday, January 24, 2009

Watching and waiting for me to die: I want to live.

I went down to my favorite video store. At first, I was going to wheel down there to “prove” that I could still do it. Yeah, ‘prove’ after only avoiding the hospital last night because we had the special mask for high concentration oxygen. My cabinet sized concentrator was going full bore and I still had Raynauds on both arms up and past my shoulders. I switched to the nose piece and in minutes it was dramatically worse. Back to the mask and after a meal and some liquids and five hours, I started to pink up. My blood pressure was so low only caffeine, pain and pure oxygen were keeping me conscious. Without that mask and without Linda there to check blood pressure, oxygen levels and everything else, I would have had to go to the hospital.

Then the pain, two opiate pills, two sedatives, and I slept, until we had to go down to one opiate or I would blow out my liver. I woke up almost immediately from the pain, tried other pills, woke up every 15 minutes after 3.5 hours of sleep from pain. Some of it, I found out was bruises from when I passed out after coming home from Badminton. As I passed out my head tilted all the way back and my arms dropped back, I flipped the chair and bruised my arm and shoulder (my head, nah, it’s fine, well except for the MSA thing). I kept saying, “I just did BADMINTON.” So much for taking that boxing class this month.

The pain interferes, it makes it hard to remember things, to remember anything, even things people say a few minutes ago, and it makes it hard to find words and to talk. It is like all the neural paths are blocked, pain makes a wall; creates a traffic jam in my head. Yesterday a man came upon me while Linda was downstairs getting them to find the key to let me IN (as I cannot go up the stairs like everyone else, odd that). He was concerned I was lost or in need. For over a minute I could not say a word, I gestured downstairs, I made vowel sounds, I went from pleading looks to ‘okay, let me start again’ looks but when people, any person, asks me a question it is now the hardest thing for me to access language. Going, “Aaaaaaaaa, uuuuuuuuuuu” for a minute, I found, is NOT the best way to convince someone you are NOT a completely feeble twit in a wheelchair who needs SOMEONE to be her keeper.

At the video store they cut my overdues in half because they know that I am dying. Sort of a super crip card. They don’t know why dying makes my videos late, maybe I vomit blood and pass out or something, but they accept that the late videos and me dying go together. Or that I never used to be late and now I am late all the time and I LOOK really sick. In fact, the staff don’t tell me about new releases for next month like they used to, and they, like Linda, like the home care staff, like everyone including me is watching and waiting for me to die. I can only come down to the video store, which I used to fly down to once a day, once every week or two. No one asks where I’ve been. Eventually Linda will come in to the store after a delay of a month or two and one of them might ask how I am doing and Linda will say, “She died six weeks ago.” And they will nod and say they are sorry but they nod because they expected that.

In fact, Badminton is the only place where I am known as a sportswoman instead of ‘That woman who is dying.’ I am accused of cheating by throwing myself out of the wheelchair to hit a birdie while in midair or that I bought a supersized wheelchair to make my reach longer. I am known as competitive; I am accused of psychological warfare (justly so). Yes, I am going to go back there.

There were for me three stages, or four, in my life as a disabled person. First stage it was kind of sucky but also kind of fun, because I got to try out new things. And I like new things. I got to figure out how to do things, try new equipment. I did a wheelchair race in a racing chair and won $100. I spent the money on gifts to send out to people. That race I won now rests in the hand of someone who holds a carved little round box and thinks of me. I think that is the right legacy.

That first stage had paperwork, but it also had advocacy and there was fun and going places. It was a pain in the bum to fight with hotel managers but it was also doing things I had never done before (like jumping a wheelchair onto a Tokyo Subway!).

Then there was the 15 or 16 months lost in tests and hope: going to this specialist, going to that one, waiting for this test, waiting for that one. Of course, I KNEW that it was MSA (plus a few friends who jumped on board my autoimmune system for a ride) but maybe the Americans who do seem to have these clever medicines and stuff like IVIG, would know what to do. And why not live a few years, after all, if I didn’t have the autoimmune version of MSA, the one where people died so fast they had never been able to get a test group together to TRY drugs on them, then I could have four years. And when you are 18 months in, or 22 months, then four years sounds like a LONG time.

Then there was the lull: a few months were I had nothing, no tests, no more doctor visits, no specialist, just sad attempts at pain control and everyone covering their ass as best as they could. Winter was here and yes, new horrible symptoms appeared. To give you a contrast, in MS, you can use so much energy that once you stop, you can’t even move. In MSA, because the little guard or signal to say, “Hey, stop now” or the feeling that you CAN’T keep going anymore is gone, as it has been destroyed or EATEN, I can keep going. So then I push to do just a FEW more postcards and when I stop, the energy for my heart to beat has already been used up. So it beats erratically and I have to lie down right then and use up 4 times a days worth of heart meds to stabilize me enough to sleep. I can talk until I pass out, and sometimes, because I CAN, hour after hour, day after day, use up ALL my reserves, the amount of time until I don’t have enough oxygen converting in my lungs and going to my BRAIN to keep me conscious, is only 4 minutes. Or I pass out and the energy to keep my ribs expanding is gone, and that has to be done by someone manually. It is hard to grasp, to understand that I can literally, and without knowing, talk myself to unconsciousness, even death. And I would feel nothing, because the part which says, “Oxygen deprivation!!!” and you feel like you are underwater and need to get to air…..it is gone. In fact what we consider almost every BASIC SURVIVAL signal for the human body, is gone. Autonomic Failure.

So the final stage is waiting to die, while those around you go to support meetings and read grief books. And you just try to get on day to day, while people watch you, and I watch myself, waiting to see what new symptom will appear and how much closer am I?

So I, when I wheel around, when I am online, I see things in a clouded way because I too am waiting to die. When I buy something on ebay, I pay too much because I want to know what it looks like and pay right away and hope they send it and that I am still alive when it arrives. I don’t wait for the best deal. I cannot save until tomorrow because there IS NO TOMORROW. Or should I act as if that doesn’t matter, try to order things that may not come for a month or two? Is that being sensible, or selfish? Am I in denial, or am I living as if I plan to live? Should I have excitement about a TV series, about when will this TV series come out on DVD? When the reality is not only, “Will I be alive?” but “Will I have ability to understand it then?” When I say I want to live, I say, “I want to go to Hawaii” which thanks to a gift, now has a fund, a little pot and like Tokyo, I am about to sell almost all of my manga to add to that fund. And then I will sell DVD’s and what I can, with the energy I can. So I am defiant, I am saying I want to LIVE….but what is that really, a few months?

There is no hope and I have no hope. I have no hope. No one whose main objective in going to another country and paying up to $1,000 to get a note from a doctor saying you are going to die in less than six months so they can have a better quality of life has hope. Hope is gone.

And yet, I don’t know what to do. Should I act as if I could live for months, order things for the long term, or live for today? Should I blame myself and feel the burning shame because of the money I have spent on stickers and stamps and postage stamps for postcards that will mean WHAT to Linda when I am gone? What will she do with them?

No one wants to talk to me about it. They want to support me. But what should I do; I HAVE tried to escape the present by going on a little shopping spree. That didn’t help. I have tried to look to the future by ordering things and having to wait until they arrive. Except then I forget I ordered them and don’t know why I bought it. Or I forget I ordered them and I order them again (that has happened MANY times). Or I am told it is backordered and I become insanely angry; I want to scream down the internet, “I am dying you idiots, I cannot WAIT for a back order.” I have tried to act as if I will live until May, when all the air conditioners are dragged out again, when I sleep ON ICE, in a vest OF ICE. And this time, I WILL be too weak and I will die.

Currently, I feel no pleasure, or little, I have very little joy. I live in a pain filled waking coma. I have pain, and I have tasks and when I am tired or in pain, I cannot talk, I feel as if I am carrying boulders in my mind, just to get out words.

Linda sat across from me today and I told her: “I want to go back to boxing.” She was surprised after the hell of last night but I said, “I know, that I will be slower, and weaker but….” And here I couldn’t find the word or words I wanted but Linda waited and she said finally, “But Ian understands.” And I nodded.

I said, “I know that I will be humiliated, going back to the same people so much weaker, but I want to….I have to know (to know if regardless of it ripping my muscles apart it might help me).

“….I don’t care how much humiliation I take, I don’t care about the pain.” I tried to steady my voice but I couldn’t, “Right now, I have no hope, I am waiting to die, you are waiting to see when I die; I talk to the lawyer a couple days ago about my living will and when you will give me a morphine overdose. Then on the phone I make out my will; I hear from my government manager what I need to do in order to die the government way. Everyone is waiting to see when I die.”

I paused and I looked around. “I don’t want to die.” I said it again and the voice was raw, ragged and honest, “I don’t want to die.”

I continued, “It is like someone is asking me to leave everything I care about, everything I know, and all the people I love in a moments notice. I know why this is happening to me….and you. I believe that God thought I could change: that I had potential.”

Linda said, “You have changed, you ARE a better person.”

“I think so too,” I said as a tear rolled down my cheek, “But did Lazarus WANT to die?”

Linda shook her head.

“Lazarus was afraid, and he send a message for his friend, who NEVER came.” I said. “The first question I will ask (whatever is after death and whoever I see) is “Why? Not why did I have be disabled or ill (that has been one of the great blessings of my life, to find people who care so much and to find a way to articulate my caring to others), but why die?”

I was crying, “A year.” I said. “A year would be beyond hope, beyond anything I can or have imagined up to now.” Linda’s head was down, and she was crying too. It was beyond what she could imagine from our day to day.

“I don’t WANT to go to heaven, I don’t WANT to rule Galaxies or rule people (I was referring to many various beliefs on post death including the taught Christian ones), I WANT TO RULE THIS ROOM.” We looked around. “I want to rule this room, I want to be able to read these books, I want to be able to watch these DVD’s, I want to play these games, I want to move beyond this chair. I want to move boxes for you, I want to stand up, I want to sort books and do a book faire…….I want…to touch your hand.” She looked up and we both were crying. “I want to rule THIS room.” and then the sobbing took over.

I was on oxygen as I had been since 40 minutes of getting up.

After a time, and a blowing of noses, I said in a voice that meant I knew what I was saying but I didn’t know how to do it, “I want to stop waiting to die.”

“…and I want others to stop waiting for me to die, and I want to live. Not denial, but a real chance at living. I don’t care what shame, what public or private degradations, I don’t care what I have to do, to get a year, to be as I am now, and live for a year and be with you and see things with you, and have a year in this room…..” We were both crying again and holding each others arms. This was our impossible dream, that time could stand still. That I might be below what most people would consider the threshold for ‘a merciful death’ but if I could, in order to live one year, I would stay happily like this (with better opiates I hope). But we both knew that we could NOT make time stand still, not by wishing and we did NOT know “Why?” except that I was dying.

I continued to talk, “I have to go to badminton. You know how I used to go and then say that getting the cardiovascular system going was going to prolong my life. I DIDN’T KNOW!” I shook my head. “But now I HAVE to try. I have to go and go and do two games, not three just two games until it stops hurting so much and then I have to do boxing. (and we both knew how close I came last night just with badminton; I was dying, slowly dying because there wasn’t enough oxygen to get to my brain and my lungs weren’t working. If it had been any worse, there is nothing they could have done at the hospital but the same thing we did and then watch, to see if I went into a coma and died). I HAVE to, I have to try.”

“I have to do it because I want to live, to live instead of just having people wait for me to die. Let them call me a liar on the comments, I don’t care, let them want their gifts back, they can have every donation back when I die from my death money. Because I have no hope, because…..” And we held each other around the shoulders and cried because she understood what I was saying; that I wanted to do this, for me, for us, to find a way, ANY way to have that promise of a year. Just the promise of it would be a blessing beyond what we could imagine.

That was a hard conversation. It was a real conversation. It was in daylight, not in the night when fear comes. It was the statement of a person who is tired beyond belief of the filter of death.

I call my bed, “The death bed” because this is where the pain is (from the weight of my body on my spine and torso), and this is where I WILL die one day. I hate going to bed, because I don’t know if I will wake up. Because I do know that I will hurt, and I will have nightmares and my body will hurt and wake me in pain for yet another day. I know that I will cry, or tears will spring to my eyes spontaneously from the pain. It is the bed of death.

Reason to live #12: Because I no longer want to be the woman who everyone knows is going to die.

That’s a really crap designation. I want to ASPIRE to be the woman for whom things are painful, and difficult, and dangerous because I COULD die if I screw it up, but maybe I won’t. I want to be the person who plans things, who accepts help, who is selfish enough because it keeps her alive. I want to live and be known as that person, the one who probably should die, but no one is laying any bets. Not to live as if I am not going to die, not to live as if I could not die, or that I should not die, but to live and do what I feel I need to do in order to stay alive.

And to do it over and over and over again, and for long enough and with enough conviction that people start to believe it.

When I came back from the Video Store (with videos I have not seen as I have been working all day!), Linda said, “Let me help you” as the carpet is horrid to wheel on. I hesitated while I pushed on for one turn of my wheelchair wheels and then sat back and said, “Thank you, I think I don’t need to prove how independent I am to this carpet today!”

Hey, it’s a start.

25 comments:

Tammy said...

I'm sobbing typing this, and can't think of much to say except I want so badly what you want. I want this so badly for you and Linda. I WANT you to be wrong, I want you to type the words "I was wrong, they say I am going to live". If it matters, I don't think of you as dying. I think of you as struggling, in pain, but taking each day for whatever it's worth.
I am not watching you die, I am watching you live!

Anonymous said...

Crap, isn't it. Of course no one wants to be the dying one. I am so sorry for you, so sorry.....shit.

Haven't got anything to say. I understand if you don't want to die.

Shit.

wendryn said...

I'm not waiting for you to die, but rooting for you to live as long as you want to.

I'll keep trying to come up with things for you to look forward to, even though it is only a little help. I'm glad, though, that you didn't have to prove anything to the carpet. When I've been injured I've never been smart enough to stop pushing until after I've done myself more damage, so you are doing better than I.

*hugs* I hope you can rest, and I hope it gets easier. We're sending you lots of love.

Lene Andersen said...

I wish we could have a Day Fund where everyone who cares about you could donate days of their lives to you and if everyone gave say, a week, it could add up to another year.

I feel so helpless having to watch you die. I try to pretend it will be a long time before I hear from Linda that you're gone, try to believe that by sheer force of will, EFM will outwit the fucking MSA and live so I can have you in my life longer (I'm a selfish bitch, what can I say). So you can live life as fiercely as you do and tell us about it, in the process cracking open the boundaries of feeling, perception and opinion, continue to challenge the world to do better.

I live in dread of tomorrow, because maybe that's when I'll hear from Linda. And I live in stupid, insane hope for tomorrow, because maybe, somehow, you'll have a day that's a bit better. Even for a little while. Thatmaybe going to Seattle will give you better days, might extend life a little.

I'm in that room with you and Linda. I love you both.

Maggie said...

Good morning-I want you to live too. I want to talk to you about the books in your room, about the sick sense of humor we share and mostly because I'm not ready for you to go yet because I need you.
Having lost another friend this week who has struggled with illness I'm not ready for you to go anywhere. So, plan away, be independent where prudent (even I struggle with this one)and do what you need to do to remain you. Not the girl who is dying, not the girl who goes to sports, not the girl who does outrageous things, but you.
Lots of love-Maggie

yanub said...

This is another beautiful post, Beth. How you manage to get your thoughts displayed so lucidly is a wonder. And then, you also always choose such magnificent illustrations to perfectly match your prose.

I can't imagine anyone being disappointed in you or regretting one moment or one dollar they spent. I don't want you to die. Another year? Another year would be great. Honestly, with you, I have come to be glad for another day, to see that you are still alive, still able to drag your thoughts to the keyboard and share them. It is slower now, harder for you, but what you say is also better, more honest, more complete, more provoking. There is a space in the world that you fill perfectly, that only you fill. You are dying, but you still live. Really live--not just exist. I don't think there is anyone in the world who lives their moments as intensely, as you do. Maybe it is appropriate that MSA robs you of the ability to know when enough is enough. Have you ever known when to tell yourself to back off, to rest? Beth, if there is one thing I wish you would do, it would be to be kind to you, to love you. You are truly deserving of love.

TJ said...

Beth,

You are so amazing, do you know that? Thank you for being alive and for wanting to stay alive. I want you to take that trip to Hawaii, so get get lots of rest and drink lots of Gatorade today, OK?

Other than thanking you SO much for the 2 incredible post cards, especially the "Spirited Away" post card, I'm going to leave my comment at that today.

FridaWrites said...

You have a lot of willpower, EFM, a whole lot. And that will keep you living longer--not long enough, I know. This life is a blessing, as difficult as it is, and I wouldn't want to leave either.

I want to master the room I'm in too, well the whole house, really--it's different but I feel such total, total irritation that I can't pick it up right now and it's bothering me as much as my pain level is today. Everything's too much for my husband to do but I can't do more. A shower and computer time were all I could do today. Grrr, internal home world, I will conquer you somehow.

JaneB said...

Oh Beth, dearest Beth. I so want you to live, to have less pain and more time for the conversations and the writing. I so want to have words which will be helpful and supportive to you, to Linda, to Cheryl. Sometimes I feel that I waste your precious, precious time by sending you messages which say 'I don't know what to say' - that the 'I' is selfish.

I can say: your writing is a revelation. your growth, your continual striving to be the best you can be starting from where you are, is... I know you don't like the word, but it is inspirational, it shouts about the wonders of the human spirit and reminds me that however dreadful some of the things I read in the news are, I'm not alone in trying, in devoting my energy to being better and helping other people to be better - and challenges me because you are so far up the mountain of growth and loving and I'm messing around in the foothills, but seeing you up there inspires me to keep getting up and trying again. You're an inspiration because, when in the dark places, the grey places, my demons tell me that there's no point and I'm stupid to try, I can argue back to them with examples like the one you set.

I'm crying as I type, because I've come to love you both, people I've never met, through typed words. Beth, I don't want you to go, I don't want you to leave Linda and your many friends here. I want pain relief, and hope, for you, a richer life. I pray for you. And I hope whoever/whatever you meet on the other side, whether you make the crossing soon or in a year's time or in many years, has a bloody good answer to your question, or there's going to be some serious upheaval in the afterlife! And they better have something at LEAST as good as a litter of kittens of your own waiting for you.

rachelcreative said...

I feel priviledged to be able to read this post and know the truths you share here.

I want to be able to give you answers. More than that I want to be able to somehow magically give you the time you want and need.

It all seems so unfair and so senseless.

For now I hope that being here to listen (read) helps a little.

SharonMV said...

Dear Beth,
I want you to live, to be here, to be with Linda. Again you make me weep, and not in a pretty way, like the lovely anime girls, but in rough, broken sobs. I'm honored to hold any part of your victories,to be held in your memories still.

I am fighting to have a life. To be able to do things, see people, make Dennis' life easier, for Dennis & me to have a life together. And I have a goal, a dream, a hope - you know what it is. I am working & fighting for that.

Sharon

Linda McClung said...

Thanks Beth for sharing with our friends, giving them glimpses into our fears and hopes. It is your voice, but I too want you to live a long time and be able to rule your room and watch DVDs, read books, relax or go out and do boxing or badminton.

I have hope each time you say you want to live because I have been with you for over 15 years and I remember the many times you say “I want to do…”. You wanted to get an MFA from Goddard… you did despite being rejected the first year. You wanted to learn to play the double base… you practiced many hours every day and within a few months were playing for two symphonies. You wanted to be honest about who you were as an individual so we came out as a lesbian couple despite alienation by family and discrimination by society. You wanted to learn to fence epee… you exercised hours every day and put up with a shitty trainer and fenced at the Canadian nationals. When you got sick you wanted to rock climb… you did by using only your arms, inch by inch until you found another sport more suitable. You wanted to see Japan… we plotted and planned and saved and made the trip. You pushed your body so hard to be able to see more of Japan than most visitors do. And you have pictures to prove it and trigger some memories. You wanted to send postcards to first all your readers and then to anyone who was in need. You’ve done that. And I have no doubt that you will be sitting on a beach in Hawaii in a few months time.

Beth, you have the strongest will of anyone I know and I know you will put up a fight for longer than anyone else ever would. The fact you are still here is evidence of that. Your abilities may change – you can’t charge down the piste any more or sit for hours on a stool hunched over your double bass but you are still pushing boundaries whether set by your body, you or others.

I have always admired your will and your desire to be a better person. Through many dark periods of our lives together I have heard you say you don’t want to live and my heart sings now each time you say I WANT TO LIVE. I will be here with you for all the days you are making that happen.

I love you and am so proud of you.

thea said...

I'm glad you don't have to prove yourself to the carpet, and you use that energy perhaps for yourself or Linda instead... because you both are worthy of having time and energy spent on you.

I'm angry at the things that make life like this, the diseases, the conditions... and the helplessness of me being in another place not able to help do something about it. So I'm angry for both you and me.

But I love that you *are* a sportswoman, Dr McClung - you go out there and play the games like lots of sports people never could imagine. And that you are hanging out for Hawaii.

Neil said...

Okay, you two, Go Find A Room!

Linda, I didn't cry while reading Elizabeth's prose, but this time, your reply made me cry. I would like the two of you to see many more years together.

Love and hugs for both of you,
Neil

Abi said...

I am very worried that you are going to die, but you keep on defying everyone's expectations! I am not sure that it is really possible to live like you are living, but you are doing so anyway. Screw convention, and all that.

I want you to live, too. I am fervently hoping and praying that your trip to Seattle brings about improvements in your condition (at least good symptomatic control) and keeps you living for longer.

And well done for being so modest around the carpet. It will have appreciated your humility, I am sure! ;-)

cheryl g said...

This is the 4th time I have read this post and started to comment today and like the other three times I am trying to type and wipe tears from my eyes. I want you to live as well. I went to laugh with you on a Hawaiian beach. I want to discuss history and books with you. I want to continue to learn from you. Yes, learn – you may not be teaching at uni but with every post, every action, and every conversation, you have taught me so much about what it means to truly live.

I agree that this illness has changed you. It has tempered you and made you into an amazing person. I am so privileged to know that person. Right now my words seem so inadequate. I don’t know how to articulate what I feel. I do know that I am determined that you will continue to live. Badminton? Boxing? Why not, you will have your own personal medic for the next 2 weeks and I am determined to keep you alive. I am here for you to witness, to push, to lift you up, to point out that you don’t need to prove anything to the carpet.

I love you!

Tammy said...

I know I've already posted a comment, but I just read Linda's letter and had to say something about it-It's beautiful. The love the two of you have will cross all these barriers that come up. It's one of the sweetest love lettters I have ever read, and thank you for sharing it with me.

Neil said...

I just finished watching "Princess Monoke," a studio Ghibli production. Thank you, Beth dear, for introducing me to anime and stuio Ghibli.

Love and hugs,
Neil

Joan K said...

Your post made me cry. I want you to have those days, that time for you, time with Linda...

Emma said...

I don't have any words for you today... just (((hugs))) for a dear friend.

Anonymous said...

Beth, you are beautiful. All this ugliness, and you transmute it. Every day you remain is a gift.

There are no words to make this right. No time we can give. If only we could. But keep on not proving yourself to carpets, or idiots.

Queen Slug said...

Part of me wants you to live another 50 years, part of me wants you to not have to deal with this suffering anymore. I keep blind hope that you'll get to Seattle & they will have a magic cure in a box marked EFM & they will say "Hey, this must be for you."

I wish I lived near you so I could just sit & hold your hand for an afternoon.

Drake said...

Hi Beth

No, I am not waiting for you to die... I am waiting for you to live...

So long as you are breathing...albeit irratically...there is hope. So long as you scream and shout about the disrespect that disabled people has to face, you ARE here.

I am not going to stop hoping untill...untill there is a reason that there is no hope. Hope is only gone, once an event has come to pass...not before.

I will NOT wait for you to die. I will be here till the bitter end...barring bad weather killing my hardware ... erm, bad choice of wording there.

I know however that it is painfull...more painfull than what I can imagine...

What do you do? You lean on me! You lean on us! You lean on me untill MY heart gives in! You dare not give up now! You dare not give up after so much you have bared! Live as if tho there is a tomorrow...

Give up on tomorrow today and you will never forgive your self if tomorrow does actually come...and...if tomorrow does not come, go with the knowledge that you kept on till the bitter end...

There is no shame in feeling weak or terrified or angry. There is a difference between that and giving up.

I don't want you to die either and I won't wait for you to die. So long as you are alive, you are not dying...

Eternal Love & Hugs

P.S. Thank you for my dad's postcard...although he didn't show it, I know he appreciates it.

kathz said...

Your life is amazing and worthwhile. I send much love. Thanks for the postcard which is beautiful.

Denise said...

To paraphrase Monty Python sketch, "You're not dead yet!" And like the man in the sketch people keep trying to hoist you on the wheelbarrow of corpses. Uff. No sense in it! (Except the health care agencies, which seem to make a perverse, evil sort of sense).

I look forward to your continued life. You put your whole heart (literally sometimes!) into it. I don't know that were I to become terminally ill I would do any differently than you are. I don't think I could lie down and wait for it to overcome me, as it seems some expect of you. I only pray I would be surrounded by people who love and care for you like Linda and Cheryl do. It would be hard to do alone, and I would probably become very bitter at the world around me.

I'm going to NGLTF's Creating Change conference this week, and I'm thinking on popping in on some of the disability discussions. I hope the hotel is more accessible this year; last year it was awful. If you couldn't walk a mile on ramps+stairs to get out of the hotel, you were effectively locked in (or out, if you were unlucky) from 8p. I'm able-bodied but that's a long way to go to walk to get across the street to buy a beer. ;)

I got your postcard yesterday. You're right about the nymph stamp -- she's gorgeous! I wish I were together enough to carry on written correspondence more than in one giant batch at the end of the year. Maybe if I dropped knitting...