Thursday, December 31, 2009

I heard somebody whisper, "please adore me"

Every month for about the last ten years I have been subscribing to a magazine called The Sun. The magazine hosts a collection of interviews, poems, and narrative pieces, both fiction and nonfiction. I find it to be one of the most honest collections about the human experience as I have even encountered, though often readers complain it is too dark, too sad.

Within the magazine, there is a section called "Readers Write." Each month the magazine suggests a topic and readers write in about it, much like a warm-up exercize in any creative writing class. What results is an interesting amalgam of experiences: sad, funny, some true, some maybe not.

I am set to start writing my master's thesis this spring and my proposal has something to do with Cf (not ready to get too into it yet, it is an ever changing endeavor). In light of that, I have been rereading old journals and blogs (I have been writing online for 10 years as well!). I thought tonight (this morning), instead of the same ole same old New YEar's blog, I would take this month's Sun Reader's Write and use that as a topic to start focusing on how I want to go about writing this paper, to give this blog a little oomph, and to also challenege you, o blog reader. I challenge you to address the same topic in my comments or on your own blog. I think it might make for some very interesting reading, and no, it need not be Cf focused...just go with it! Even better yet, link here to what you write (if you wish, or hell, don't).

So this month's The Sun Reader's Write topic is Narrow Escapes.

It's late and I need to sit on this topic for a minute. Happy New Year

Sunday, December 20, 2009

this whole damn world is on fire

My FEV1 is 58%. It was 71 in November and 74 before that. 25/75 was 22, 37 previously. The question is WTF? I really want to blame the TOBI my doc has me trying in place of colistin, as i recall the last time I tried TOBI, a la 2006, I was at 50% and felt much the same I do now, tight, congested, and SOB.

My fears are 1) that the acinetobacter I ~maybe~ cultured last month is fo' realz, 2) that this is somehow related to H1N1 and maybe permanent and c) that i have to accept a new baseline that doesn't start with 7_.

My fears are coupled in a few other ways, too. Several people are waiting or new lungs, one beautiful girl just got a set...hope abounds in this, the season of hope. and I sure don't want to rain on anyone's parade. But man.

You know what got me? this. This story about a girl I didn't even know. I just felt pissed off. I guess I was in the right mental space to have this affect me the way it did, in light of the recent carnage seen in Cfland. But I just felt delated: that there is hope in tx, that there is such devastation. I remember Paul telling me once something along the lines of he'd wished he'd never let himself believe there was another life out there wiating for him, those few good months he had. I heard him, you know, but I didn't really understand. I mean, I thought I did. But for whatever reason, that article really put the spit in the cup for me.

I always assumed I would get a tx, I mean ever since my uncle had one and did so well with it. The dude is 57 and 13 years out - just doesn't get a whole lot better than that. I thought that was the way it was. Tx and wah-la. I know different now...

and so I haven't been sleeping well. Well, no, I have, but it is induced in some way - because I can't get the demons to back off. These little green guys that come in and stare at the back of my head when I'm trying to sleep, whispering all the nasty fears that I know we all have right into my ear.

My daughter crawls into bed with me pretty much every night. I just stare at her. She loves me so much, and the thought that I could leave her motherless before she is grown is so suffocatingly devastating I can hardly live with myself.

Which makes me feel, that when the time comes, if I make it there, I will have to try for the TX. Though I don't know that I want to. I don't know if I can handle smashed up hopes. I don't know how to change my thinking, either. and the one person I would have talked about all this with is gone.

so, fuck.

Tuesday, December 15, 2009

all the songs with goodbye in them are too cliche for my title

I'm not saying this is my last Paul post, I just don't work quite that way, but in my process, it was time to write y letter. I debated keeping this private, but if i can't share it with people who understand...well...??


I haven’t been able to write this letter yet, because I am not ready to say goodbye. I hope you heard me this morning when I spoke to you while getting the paper. I hope that the day I learned you died, when I “felt” you in the kitchen, I hope that was real. You’re the first person who made me want to believe in heaven even if you didn't.

I remember your first pms to me at I had posted about ahimsa, and we chatted just a bit. You invited me to your time, though I wasn’t really listening. Then you pmed me in chat a few times when you were listed. Remember you told me how they asked if you had tattoos and used drugs as if they were mutually inclusive? On my thirtieth birthday you told me you were glad I was born. And you shared a birthday with my son, which I always found auspicious for us!

It was after tx, when I’d added that playlist to my blog and you gave me a cheers for liking Freakwater that we really started connecting. We talked music and Cf denial and loving ourselves. You told me of meeting the Buddhists, when you saw the flyer. You actually still chatted with me all the nights I typedlkie this an expctyedf you tobe abel to r ead whatI wrtoe.

I remember we talked about “getting” it, and you said, “your name is ‘wanderlost’, how can you not get it?” My heart just filled with pride, to know we “got” one another. We talked a lot about being lonely. We talked about our dads and picking out our own switches, about past lovers, and marriage. We joked about that “other life” we might have had…except I wasn’t really joking, I think you know. You know I stalked you, and while I never hid in a trashcan to find you, I always hunted you down online.

I will watch for the thugs at DQ, I will always remember when we dressed up as dogs in an overcoat at the movies, I'll try to stay out of the hole, I will take Cf on my own terms.

I remember how worried I was about you last fall with the rejection and the Pepe stuff. That is when I bought the Ganesha, which I was so happy to be able to give you at the Heartland and which you graciously accepted despite the germ thing. Thanks for that.

I wasn’t around as much lately, I know. Always busy. And the box wasn’t working right – that is the biggest thing I hope you know wherever you are, that I just couldn’t get that damn thing to work.

I wish I would have come up when I’d offered. I would have even thought about doing both things you’d asked, even if you were joking. I told you not to take the one back, and I still hope you meant it. I know you were too sick to go out and still didn’t want my bugs in your apartment, but had we known, we could have made such a time of it!

I love you Paul. You know I always carry a lot of worry and regret, but one thing I can feel good about is I know I told you I loved you, more than once. I think I remember the first time I said it, instead of my usual “much love.” And you told me, too. For that I am eternally grateful.

I don’t want to say goodbye. So I won’t. I could say "knight shug," But I think I’ll say what you always said when I had to go, which kind of irked me:


Monday, December 14, 2009

what a beautiful piece of heartache this has all turned out to be

I left when it was still night, the moon was out. I made a “Paul mix” for the drive: some of his songs, some we’d shared a liking for, some that reminded me of him. I headed west. When the Chicago skyline came into view it was Neko Case “I wish I was the moon tonight.” Paul told me he used to have Neko Case’s number. I don’t doubt it one bit.

I was super early, so I pulled into a Starbucks and gathered my thoughts. Tears had threatened and spilled the whole drive, and choking down my granola yogurt was no better. I went over what I was going to say. Paul’s mom asked me to say a few words during the service, as I was the only representative there who knew him in the online world. Public speaking is not my greatest achievement. While I don’t mind it, I do get nervous and tend to talk quickly. Further, crying in front of people is something I like to avoid.

I entered the church and was immediately greeted by Paul’s mom. She introduced me to the family and showed me the pictures of Paul they had gathered for the ceremony. How fun! Paul as a baby, Paul going to the prom (can you imagine!), Paul’s travels. In some pictures, I barely recognized him, it wasn’t the Paul I had ever seen, others were certainly the Paul Q I knew. I started to cry, of course. I cry all the time, but Paul’s aunts hugged me, we cried together.

The ceremony was a Catholic mass. If you’ve been to a funeral, you know how they go. Cousins did readings; we sang “Ave Maria,” read a psalm. There was a very cool moment when was all joined hands, down and across the aisles to say the “Our Father” and I could feel all the energy being shared. I love that stuff!

The speakers were two of Paul’s friends, his brother, and me. The first speaker told a story about picking Paul up at the hospital once, and how walking in he heard a guitar strumming and this deep Johnny Cash voice booming out of the hospital room. He said you could judge a person by if they “got” Paul or not. I was so pleased to be one of those who “got” him. I was next.

I gave Paul’s aunt the paper I spoke from, but the gist (Paul taught me it’s ‘gist’ not ‘jist’ btw) of what I said is this (from my starbucks draft):

Hi, I’m Shannon, I am a friend of Paul’s and like Paul, I have CF. We met about three years ago on a Cf website. Paul, or Q, as he was known online was already a well-known figure in the CF world. I was just coming to grips with the reality of the disease, and Paul reached out to me immediately. From there our friendship grew roots much deeper than just CF.

I got to spend some time with Paul in “real life” and one of our meetings was in my hometown of South Bend. I met Paul at his hotel and we walked to get something to eat. As we walked, we were just joking around about life and CF and how we both had country singer ringtones set for one another (I had Merle Haggard, he had Hank Williams Sr). I remember this moment as we walked where I was just filled with love for Paul. I called it the “shining beauty” moment because this love and light just came off of him.I knew I was in the presence of someone special.

I know that all the people in the Cf community that Paul touched, even those who never had the pleasure of looking into his eyes, felt that love and light on their ends of the computer screen. He touched us all so deeply.

Paul’s death has left a huge space in the CF community, but I know that we all take from him what he taught us with his kindness, his humor, and his knowledge. I feel Paul all around me and I will always hold him in my heart.

So whew. I did it. I went back and forth so much on what I wanted to say, but I knew Paul would want me to speak from the heart. I also mentally said a few words to him for making me have to get up in front of a hundred people I don’t know and do the “I have CF” spiel. I know he knew how hard that was!

They played the song “Regina” that I assume Paul wrote for Gina. I had not heard this before. I have not stopped listening to it since. Wow. Lots of tears for everyone at that moment.

After the service, one of Paul’s former students, Peter ,and his college friend Ted introduced themselves to me and we sort of became buddies. I followed Peter to Paul’s apartment where the after-thing was(what do you call the thing after a funeral?.

I thought I would “feel” Paul when I got into the apartment, but it was clear to me that the apartment had been cleaned out quite considerably. I knew there was no way Paul lived that sparsely! It just didn’t have his “presence.” His mom told us to feel free to take anything we wanted (mostly books) just, “not the ashes” she said (might have been tempting). I took a Flannery O’Connor book as well as a Thomas Merton one. The Merton had notes in it, and I wanted something with his writing in it.

As things started to relax, now that the hard part was over, people were less rigid, talked more. I joked with Paul’s brothers, met two of his former girlfriends, both of which I had heard of, talked to cousins and neighbors. I talked about CF to a lot of people. I think there was a bit of awkwardness, as what do you say to a CFer at a CFers funeral? I explained a lot about the “denial” thing, as so many people spoke about how they didn’t know Paul had CF for so long. CF denial was one of the first things Paul and I bonded about.

The most amazing moment was when Bill (think that was his name), one of the musicians Paul recorded with (think Strobe stuff) brought out his guitar, and we all sat and sang a few Beatles songs together. On my left was K, on my right, Paul’s dad, and then his brother, aunts and cousins across the way, and right then, that is when I felt Paul. That was the sending off I knew he would want. It was truly magical and I will be forever moved by it. I recorded a few seconds here, which I want to share. You can listen, be there - but no snarking at my off-key voice.

Paul’s’ brother added me back to his facebook (sorry for people who saw he was online, I think that was us, that must have been hard), which felt a little like cheating, but everyone who knew him wasn’t the least bit surprised that he had removed a few of us that he was close with. That was Paul.

I feel closer to him now than I did before, I think I fell in love all over when we all sang. I felt all I missed by having CF, by not being able to hang out with Paul at his house because of germs, by not meeting at the “right time.” Because I knew Paul and I talked about that “other life” we might have had. No, I wasn’t in love with him like that, but there is just no other way to explain it. The other life – that’s the one without CF, I guess.

Being there, seeing and talking to these people who I had heard of, who had heard of me, made it all real. It wasn’t just an online thing, this frienship was real and deep. I wish there were second chances, because I would do it differently if I could. I can’t, so I hold tight to the experience, to the honor of having known him, and being able to share with those he loved most in the celebration of his life.

I love you, Paul Justin. You never would tell me your middle name. But I know now.

Thursday, December 10, 2009

would you know my name?

Yesterday I had to run some errands. It was a bit arctic here and when I got out of my car, a blast of cold wind lifted my hair and burned my eyes, left me breathless. And I thought, "Ahh, there you are," then started crying as I walked into CVS.

The kindness of others never ceases to amaze me. I hope that I can reciprocate what people have given me in these last few days. I keep feeling gluttonous, taking all the sympathy and holding it close, as if I am the only one who lost someone.

The truth is, we're all hurting, and the losses keep on coming. Though I was the closest to Paul of all the people we have recently lost, I've ben touched by what each person's passing has meant - what it means to all of us.

There is something odd about being a "survivor." Especially a CF survivor, because the idea of survival is so transient. What does it even mean, in the face of this disease?

All these large life and death questions are swirling around in my head. I've asked a few people their thoughts and every time I am left feeling that that can't possibly be the answer. It all seems so simple.

When my sister died, I remember people talking about "heaven" and I thought they were crazy. There could not be such a place. What a childish idea. When Paul died, my first thought was, "I sure hope they were right."

I miss you. I can't wait to be in your space Saturday, to breathe you in....fill up these cystic lungs with your energy, breathe out all the love I have. All the love I have, Paul.

Monday, December 7, 2009

if you sing a song, sing a song for them

I don't get over things easily. I get kind of consumed by them. Today I barely could pull myself away from the computer. I just wanted to talk to other people who were feeling like I am, who understood. I have alwasy been a journaler, I have always tended to journal to deal with pain, hurt, confusion or anger. All of these I am feeling now. So I am writing, and rereading, and listening.

I went back through my old journals and found a few others that were written for Paul that I thought I would share.

This is another verion of "Hank and Merle" but a bit more detailed:

I got to meet my internet friend last night. It was really wonderful. I met him through and we've been "friends" for about two years now, though only in the last year have we really become closer. We joke that we are the other gender version of one another - if that made sense. He is 42 and about 9 months post transplant, but has had a very rough go of it. He is in rejection right now and is on a vast array of immunosuppressant drugs and antibiotics, so, since i culture staph and PA (sorry for the non CFers on the list, just know they are common bugs for people with Cf to have in their lungs), and since he is not doing so hot, we opted to keep the requisite three feet of space between us suggested for Cfers due to cross we didn't hug or even shake hands. None the less, it was amazing.

This was my first meeting of someone IRL with Cf where I felt I was relating to that person through and about this disease. It was fabulous. I wasn't embarrassed to cough, we talked enzymes and transplants and abuses we've put our bodies through in rebellion of this disease. I felt so connected.

There was no sexual tension at all, as can sometimes occur between members of the opposite sex, I felt like this was a pure friendship. We met at a coffee shop and then walked to try to find him something to eat since it wasn't the best idea to be in a car together (but sadly ended up at DQ as SB is not a late night town, especially on a Monday). As we walked back to his hotel I just had this moment of affection. I wanted to hug him so badly, and I would have thought germs-be-damned, but it wasn't my health we were protecting, so I resisted.

But we chatted in the parking lot and joked when I coughed. "That's OK, go ahead and have CF," he said.

To which I replied, "I have asthma," which is, of course, a Cf joke. And we talked about what excuse I would have made to an unknowing person had I coughed like that in front of them. But it was nealry midnight and I knew I had to go.

G wasn't overly amused with this whole idea in the first place, and I'd already been gone for three hours, so I knew I shouldn't stay. But I wanted to. It was such a unique moment of friendship, one that I have never had with another person because we were totally united with this disease. Besides the fact that we have a a lot in common anyway, the understaning of the disease made it so much deeper.

I don't think words can begin to explain.

This, it looks like, based on my "stat counter" might have been what Paul was (re)reading a few days before he died. While I am sad he was possibly revisitng any Pepe business, I am so glad that these words were fresh in his mind:

I've delayed writing a post for a few days because I am just not sure what I want to say. I've certainly allowed myself to get swept up into recent events, mainly in defense of my friend. and while I am utterly intrigued by the unfolding events - the HOW and WHY of the whole thing, the fascinating mental illness that most likely masterminded things, I am more concerned with love.

I find that people are so quick to judge. So quick to assume the worst - everyone loves a scandal. I am no different I suppose, as I dutifully maneuver through my daily blogroll, scoping out good sites and snooping into others' lives. Yet in doing this, in forming an internet identity and a life separate online form the one I live out here, outside of the box, I have created a life complete with friends, meaningful interactions, and even love.

We all know that love can't just be turned on and off. Haven't you ever seen"The Crying Game?" (spoiler here) - even when our protaganist finds out his love is in fact a man, he can't just stop loving her, by then it is much too late. Of course feelings can change and love can fade, but often not as we try to direct it to. It seems the harder people rally against the effects if love, the stronger it reacts.

So while I watch this great drama unfolding, puitting the piece together like a Scooby mystery, I keep thinking about love and how it affects those most directly involved, and because I keep reflecting on that feeling I can't help but feel extremely sad. Sad for a person who felt the need to create such a lie to find love and even sadder for my friend who loved so deeply that he put his own needs aside only to find out that the love has been misused and misdirected.

I hope my friend knows I send him much love in these hard days and that I have always believed in him, have seen his shining beauty, and in the words of one of my favorites, that I hope he shall "rise up singing."

I will have to revist my sadness ad nauseum, that is how I work things if you loved Paul, share here with me. I move through my emotions slowly, thoroughly. I know the music will come back to me a little at a time, but for now I am trying to be still with my grief, keep vigil for my friend.

Sunday, December 6, 2009

Wilhelm, are you listening now?

I really thought Paul would be in my dreams last night. I wanted to say goodbye. I was so unprepared for how hard I would take this. I guess I just never really thought it would happen. He kept telling me the end was near, but I wasn't listening.

I keep opening my chat boxes, hoping that some missed offline messages will pop up, anything, something. I didn't realize how much I depended on him being there. We talked probably 5 out of 7 days for the last two plus years, especially in the last year or so. Paul was always there. We would laugh about our relationship "in the box."

I self medicated last night and went to bed feeling Ok with things. But this morning that heavy skillet is back in my chest, a slight ache. I'll forget for a minute what has happened, then I will remember, with that dropping heart feeling, that Paul is gone.

I haven't grieved for a person since my sister died in 2001, not truly grieved. I forgot what an emotional roller coaster grieving is...laughing, crying, feeling calm, feeling angry.

My family is being OK. My husband, very much aware of how much time Paul and I spent together online has been supportive and I appreciate him not down playing my grief. He doesn't understand CF too much, but this he seems to understand. My mother was a different story. I don't think she can understand how a mostly online frinedship can lead to these sorts of feelings. She doesn't understand why I want to go to his services in Chicago. I felt more alone than ever when she made a few of the comments she did after I asked if she'd help with the kids when I found out when the services would be. The first person I would have talked to about that would have been Paul.

His name pops in on my chatbox and I keep wanting to type in, "you there?" but of course, he isn't.

I know Paul left this world in his own terms, the way he wanted to go. I admire that. I admire how brave he was in death. I want to be as brave in life as I honor and remember my friend, but these little selfish parts of me keeping popping in...feeling sorry for myself, forgetting how many others are grieving along with me. Parts I know Paul would have told me to recognize and let go of.

I know I am no where finished in this process. I may never be, as I don't let people in and out of my heart easily. But the place Paul held in my heart is huge. It isn't empty. I know he is still there, I just have to learn to hold him differently now.

Saturday, December 5, 2009

I will not forget you

I know I am not the only one with a heavy heart today. Not the only one touched by a very special person, and probably not the only one turning to her online friends for solace and support.

I don't know how much I am ready to shift through my feelings yet, it is all too real and shocking for me. So instead, I wanted to repost an old blog, from early July 2008. Paul was driving back from Pitt and he stopped through and we spent a few hours hanging out. It was wonderful. I originally blogged this at, but I am so glad I thought to back it up so I can share it again now. Words are all I have left...but how appropritae for our Paul Q.

Hank AND Merle

It's too bad I forgot my camera, because for me, Monday night was worthy of recording. Why you ask? Well because I got to spend a few hours with my favorite CFer, Paul Q.

Although my uncle has CF, and I also had a little playmate when I was a child, I really haven't spent any time IRL with another CFer. For my uncle, it was always sort of the elephant in the room: no one taked about it much in our family. As for my playmate, well we were young and I think my mom tried to limit our interaction because she was sick and my mother didn't want that to scare me (and we wonder why denial?). My uncle is 11 years post tx and I think might feel he has left Cf behind, my playmate has since passed away. So besides late night chat with you all (each in our own separate box) and occasional glimpses of others at clinic, my CF interaction has been limited. No CF camp for this old dog.

Usually, meeting someone for the first time is a bit anxiety inducing, for me at least. and I prepared Paul Q for my possible muteness, as I can be rather shy sometimes. But it only took a few minutes for my shyness to melt away, partly, I realized, because I had nothing to hide. I wasn't worried at all about coughing - I mean, he knew why I would be coughing and though I didn't eat, I certainly didn't have worried about being stealth with the enzymes. I really have not ever felt so free with CF, not ever. Because although I cough a plenty around my family and don't hide enzyme taking, this was still unique and was....wonderful.

I have wrestled with how I feel about CF for the past year, as I have increased treatments and tried to come to an understanding of what it means for me, blogging much of it here, as a record for myself and an outlet where I know others can understand. I tried "coming out" in class last semester, but that wasn't quite the moment of release I thought it would be. I still cringed each time I said CF. And mainly, it's because people just don't get it. How can they? They try and they mean well. But I just don't feel they can truly know. Even my own husband, who valiantly set me off to meet a "man from the internet," but sat home worrying the entire time, couldn't understand what I was saying when I tried to explain why hanging out with Paul Q was different.

I think that meeting Q exemplified what coming to this site has meant to me. The importance of the connections with regards to having this disease, the frienships forged here. I am grateful to all of you for what you bring to the table as we flounder about trying to catch our breaths.

And thanks Paul, for taking the time to spend a few hours with this old country gal. Here is the hug that I didn't get to give ya (((((((((((((((((((((((((((((((((((((((((((((HUG))))))))))))))))))))))))))))))))))))