Subscribe to this blog's feedI wake up, drenched from head to toe again, but still feeling unnaturally hot. My bed clothes and pillows are clammy and damp. Its like trying to sleep in a pile of laundry which has been washed in saltwater, but not dried. I try anyhow, as long as I can, because I am so tired. Tomorrow I fly home to North Carolina, to my elderly mother and to a Christmas which I suspect will be far different than most others. I love Mom a lot, and want to see her very badly, but at the same time, I just don’t want to go.
Normally I love to travel. Flying on a plane is exhilarating to me. Calling my friends during a layover and gleefully announcing that I am eating a five dollar croissant makes me chuckle. I like travel, and adventure, and going to different places – even home for the holidays. I used to love to drive home, filling the six hours with audio books on tape, or singing full volume to songs that would make anyone cringe. Tiffany, anyone?
This year I have PCP pneumonia, coupled with some bacterial infection that could also be pneunomia, or bronchitis, or something else. This year, I am fresh out of the hospital, less than two dozen CD4 cells to my name, with my doctor only reluctantly allowing me to travel at all (what’s he going to do, lock me up? Forget I mentioned that). This year I am fifteen pounds skinny, pale as a sheet, with dark rings under my eyes. This year, I am visibly, seriously ill. This year I will be taking the family photographs rather than appearing in them.
And I’m scared. Scared to leave the apartment, because the walk to the mailbox leaves me wheezing and coughing for breath. Scared to pack too much, because I don’t know if I will be able to struggle through the airport with even a carryon. Scared because I know I am going to get That Look from my brother, my Mom, and strangers. I am wearing my AIDS on the outside now, and I detest that more than anything.
It’s not just vanity. I wonder if this is my future. I wonder if I am finally entering the phase with which I flirted several times in the past, only for good this time. I wonder if it’s too late to plan another trip to New Orleans, or to see my friends in California. I am unsure of my future in the most fundamental way. And I’m really weak, and really sick.
I’ve been accused of whining lately, so I will stop here. Not that I give a rat’s ass if I come across as a whiner or not. Last week I managed to spend three days with a fever of almost a hundred and four degrees, and my biggest complaint was that my eyes hurt too badly to watch Doctor Who. I have a couple of friends who have elbowed their way into my apartment, and refused to let me simply languish alone on my futon, and for them I am grateful. I’m a lucky guy to have some seriously cool people in my life, who refuse to let me die alone. And I am loathe to leave here, even to go home to my birthplace, where my Mom can make horrible soup and worry over me.
And I in turn will worry over her, worrying over me. It's fun being raised Methodist.
For the first time, I have absolutely no idea whats going to become of me. Whether I will pull out of this, and if I do, what will be left to work with. Each serious illness takes just a sliver of who I am with it. Dignity, vanity, self-sufficiency. I fear I have reached critical mass here. And I am not sure whats going to be left.
I pack my huge bottle of Mepron, my Levaguin, my Bactrim, and all my other pills and potions in the duffel bag. My best friend is on his way to help me run errands in a few minutes, but I have time to soak away a little of the fever in the tub before he gets here. I am leaving my home, my pets, my safety nets such as they are, and going to a place where there will be laughter and tinsel and blinking lights and the smell of fresh pine.
Where my elderly Mom, still unrecovered from the loss of her lifelong partner five years ago, will put on a smile that is strained and sad. I will hug her frail body, with my own frail body. And together, we will navigate this seasonal passage as best as we can. Both wondering how many more times we will even accomplish this tissue-thin celebration. Both feeling time, and illness, and loss weighing heavily on us like snow on a fragile leaf.
Mom is seventy-nine years old, and I have AIDS. We are, in many respects, in the same situation, with more years behind us than ahead. I hope we manage to find some way to shut out the omnipresent ghosts of Christmas Future, and find joy in our moments together. If not joy, exactly, at least comfort. And maybe even, in the melee of giftwrapping and laughing children, something resembling hope.
Jonathan,
Hope your x-mas is merry with the family. I truly enjoy your writing. Please post them more often if you can.
Jonathan, I am so sorry to hear you are not well. Look for a card in the mail from me when you return home, sorry I did not get it to you in time for Christmas.
Hope you have a wonderful time with your Mom, and forget about AIDS for a bit, if that's possible.
With love,
Alan
Yipes, you sound like me a month ago. Yes, my friend, I had PCP too....very shallow breathing...something called "thrush" (isn't that a band?)...104 fever...CD4 count of only 24...viral load of over 650,000... in a hospital... in isolation... pale white...attached to a breathing generator... but did I lose weight NO! I actually gained (!) more to my already chunky frame...then the AIDS diagnosis came... is God playing a cruel joke on me?...that bastard!
Jonathan,
I am so sorry to read that you have been so sick lately. I was thinking of you driving my car home tonight, wondering how you are doing. I was pleased to read you posted tonight, even though I didn't like what I read.
I have few words to say. Just remember you owe me a coffee somewhere, sometime. Promise me that. Have a peaceful new year.
Your friend,
Rich
Dear Jonathan,
My name is Prince and I know you don't know me but I just read you story and it made me think "Oh God what this man is going thru..send a hand of comfort to one of your children now". I am in New Jersey and wish I could meet you and let you know about a close friend of mine who died of aids when I didn't even know what aids was all about and didn't even know I had Hiv at the time. I am glad you shared your story and hope you have the greatest holiday you ever had. God be with you and you mother and tonight I will put you on my prayer list and believe me there is nothing to hard for God to do...all we need is faith in God!!
With much love and kisses
Prince
Jonathan, My thoughts are always with you. Have a great holiday and a safe return home. Take care, man! Bruce
Hi Jonathon, From your latest post it sounds like you are in a really terrible situation. To tell you the truth this was the first time that I have read your blog, so I don't know what sort of treatment you have been getting, but I hope that you will take solace from knowing that I've been positive for about 15 years now, and am still about as healthy as I've been. For some reason I haven't developed any resistances, and now am on Truvada and Sustiva, essentially Atripla, but the VA doesn't have that yet. For a while I had diabetes with a very high insulin resistance, but even that has improved to where I'm almost not having to do any more insulin. T cells are in the 600's, Viral load is <50 and I really don't know why I'm in this condition; I thought long ago that I would soon be joining an ex partner in the next stage of things, but I keep hanging on. The thought when I started this post was that maybe hearing something on the good side of things might help you to feel less hopeless, and I hope it doesn't seem that I've been bragging or anything; that wasn't at all what I meant to do - only to let you know that it is possible for things to work out, and I hope that they do for you.
Why things are like this I don't know, and normally I wouldn't suggest this, but you might try going to MCC on Sundays. I know that at First MCC here in Atlanta there are a number of us that are positive and we all seem to be hanging on pretty well. Maybe the support from others would help your outlook. Good Luck. CE
Jonathon, I just finished a post to you, but have had another couple of thoughts. One thing is that I am 56 and better off than a lot of "normal" people. One other thing is that I'm lucky to have beaten the "don't ask, don't tell" policy for quite a while and was in the AF here in the States during the period of the nearly the end of the Vietnam thing, so I do have access to the VA system. Here in Atlanta the consulting doctors are from the CDC and Emory University, so it is clear that I've been pretty lucky. One good thing is that I've never taken any PI's and have for the most part avoided medicinal side effects. So you see, things can work out sometimes, and I hope that you have the opportunity somehow to run into doctors and treatments that will work for you. Again, Good luck. CE
Johnathon!
Thanks for your letter. I don't know you but was so touched by your recent letter - I'll be thinking about you...
Thanks for sharing...
Hi - One last thing and then I will wish you the best possible Christmas for both you and your mother. This Sunday night on PBS, here at least, there will be two hours of part 2 of The Age of Aids. Part one was this last week, and I thought that it was very well done, so you might want to watch it. Like I say, it will be on here Sunday night at 10 pm, so that might be something to do. All my best to you as you go on through life. CE
dear jonathan, i know you don't know me but i want to say that i love you.... for the honesty in your words at this otherwise ho-ho-ho time of year....diagnosed poz since '93, i have spent my share of christmastimes feeling like you do now, and with less than 30 tcells to defend me against the whole world for several years straight, sick, and covered in nightsweats and tears. my eightysomething-year-old mom moved in to help take care of me. but i am also writing to say 'have hope'....this year i am better, over 250 tcells, and have a new grandson to snug, and everything feels brighter, so i'm just one proof that its possible even when it feels unlikely. this is my christmas wish for you as well: simple christmas happiness. sometimes its freakin' hard to come by, but know that there are strangers out here in the world-wide-web with their fingers crossed for you. love and peace and happiness, dotti
Jonathan' Im hoping you are feeling better to some degree since your post. It left me feeling mixed emotions since I am newly diagnosed and my doctor has been filling my head with positive outlooks. I am not a rube nor am I dying. I understand his concern for my mental health but I am doing just fine. Most of all right now, my heart is filled with love and compassion for you, a man I have never had the pleasure of meeting or talking with. I hope that this cyber-expression may somewhat alleviate what must seem like an impossible burden right now. I will therefore do the only thing I can do for you at this time, extend the hand of love and friendship to you. If there is a God, I pray this simple gesture finds you at peace, a feeling I have all too often taken advantage of. Hang in there bro. Ken
Jonathan, I often read your blog and find it both humurous and touching. This one particularly struck a chord deep inside. Keep your chin up friend and I wish the very best for your holiday travels. Tom
Jonathan,
I live for your postings, I am a podcaster, and not really into blogs, but yours I wait for as your writing just sucks me in, and takes me to a place of what your feeling. I love the way your write, live, see the world.
I am also HIV with less then 200t's I am a truck driver so I am having a hard time with pills and shits. I have learned to use a bag, but I don't want to talk about myself.
I read your blog, and really hope you do pull threw, my friend couldn't go threw what you are doing when he gave up his pills, so he killed himself last year. I don't know where I am going with this, all I really want to say is I love your writing, and wish you could if you could do a podcast, if you have the strength. I also would love to interview you as I am going to be switching one of my podcasts over to an HIV podcast in future.
I wish you strength threw the days, and just to let you know if it means anything I think about you all the time, and hope your doing ok.
Take care
Love
David
dave @ djdavidj . com for email.
Jonathan, I'm glad you were able to write your latest entry.
I know I am not alone in thinking about you and wishing you (and your Mom) well.
Even when things are low doesn't mean they won't get better.
I sure do appreciate and respect your telling the truth exactly how it looks to you. You're an eloquent and honest man.
Love,
Andy
My Dear Jonathan,
OK, enough morbidity......
Love this last one, and again, thanks for taking advantage of this very impersonal cyberspace to let us all share in your incredible struggle for balance.
Please remember that no matter how dark it may seem, we always have the ability to turn it into something humorous, and you are still up to the task, as is very evident in this entry.
Love ya Man!
Tim....
Jonathan:
I had to go home with a bufflo hump on my back.
I am going for sergery in the new year to get it removed after 7 years of hopping it would leave on it's own.
Family love and support is always there no matter what you look or feel like. And you apparently have alot of fans on this site so your doing something right.
I've never written to a blog before, never felt the need to , till now but after 18 years of HIV I've had up & downs as well and thank God for Canadian Health Care System!
Hope your ups come soon!
Joe
I have a pair of red, yellow, and tiel leg warmers that I have saved for over twenty years. My best friend bought them for me when we were in high school. It was the best Christmas gift I ever got from him because usually he would give me the gifts his Mom kept "just in case." One year he gave me "Cannisters 'n corn." 3 small plastic containers with a 3oz bag of popcorn kernels.Yup, lame. The legwarmers were special...ugly, but special, because he paid attention to me. He wasn't subtle(I saw him buy them, but childlike in his endeavor)
We have drifted apart from each other. We had different lives to lead. It broke my heart that we parted the way we did, but that was the only way we could have. I saved every note we passed between us, because in spite of the melodrama and heartache, there was a real connection, and no matter how it hurt, I was glad to have had him in my life. Good, bad or indifferent, the people we choose add something to our lives.
"Your friends will know you better in the first minute you meet than your acquaintances will know you in a thousand years." I always use to think that applied to us. I don't know if he ever knew me, and I used to think I knew him...maybe we knew each other as well as 17 &18 year olds could.
I cannot pretend to know what you must be going through now, but in my mind and in my heart, you are wearing an ugly argyle vest, eating big macs in an unspeakable way, driving a grand prix and listening to Bonnie Tyler as you drive down Kensington Drive stalking a dumb
ass, inbred country boy and I am by your side in black sweatpants an oversized sweatshirt, a
ponytail and I'm wearing some ugly striped legwarmers...and I am begging you to change the tape and take me home, because it's 3am and we' ve been down this road 4 times!
I guess I'm a little worried about you but I know you're going to be fine. If I didn't think you were, I'd pull out the tear jerking memories! As I write this I am shaking my head remembering those "putter pants" you let your Mom buy you...I don't care how sick you get, don't let her dress you again!!!!
Friday night, 10 o'clock, only an hour until Friday night videos, I hope they show Total Eclipse of the Heart Early otherwise I'll won't get home until the second half of the show. Get some Microwave popcorn out of the freezer and get that scraggly Snoopy off the couch, Did you see what Troy was wearing today?
Merry Christmas Conway...(too obscure?)
Love Always,
TWIJ
( I have forgotton what the "T" stands for..we'll pretend now it's "Terribly attractive")
Whining is only whining if it's complaining about bullshit. What you are going through is not bullshit, it's some very serious shit and if sharing what your experience
is like helps you, damn right you keep doing it and being completely authentic. You help so many of us enormously. You get my compassion juice flowing so I get in service, and you make me feel incredibly grateful for being one of the lucky ones. And your gift with words is an inspiration to any writer in his right mind, and a few in his wrong mind as well.
You're also the only blogger I've ever checked for 18 times between entries. So take that! THWAP!
MARC
Jonathan: I wish you peace during the holiday season and into the New Year....and may the New Year bring you health and well being......
Keep the faith!.....
HammyJ
Vancouver, BC
Jonathan.
thanks for the christmas story. Your soul is your strenght. thanks for sharing it with us.
robert
Hey Jonathan,
I so enjoy reading your posts. Thank you for sharing your heartfelt emotional state... please whine all you want.
Peace and love,
Jose
I've never made a comment to any blogs on Poz until I saw you. Your a Jonathan and I'm a John from North Carolina too. How nice chatting to another Carolina man who has shared parts of his journey with all of us. I ould like to share some of my journey with you and others. Poz for 21 years and have been so blessed. I really haven't had many complications HIV related. Poz for 15 years, and Hep-C shows up. It was like and understudy waiting in the wings of stage left. My God what will be next? PEG didn't work for me, but has helped so many. I'm just waiting to wake up from this bad dream. After testing POZ in 1986 the death sentence was given to me. I kid you not! I was told that i needed to make arrangements for my future. Time was cut short and I would be checking out in the near future. I just wanted to share with someone some of my ups and downs. I hope I see a new post on your blog soon. Its been almost a month since your last post. Keep the faith my man! We've already won the battle.
To say I continue to think of you is an understatement. Whoever suggested you are complainig too much should be throttled. You speak with a clarity which shines through the bullsit you are enduring like a beacon. Thank you so much. I am not a person who prays exactly-I dont realy get the God thing- but I send loving, caring energy across the miles, and will continue to keep you in my thoughts.
Margo