Subscribe to this blog's feedThere is magic in this world.
There is beauty and hope and splendor. There are enchantments, magnificent deceptions. There are places to meet your birth, and your death. There are truly marvels, if we are open to recognizing and accepting them.
I know this. It’s not a matter of faith, but of experience and concrete knowledge.
As I feel my own winter bearing down on me, I am grateful for the opportunity to be a human, to walk this road for awhile. Though I veered far from my initial path (and to be fair, veered from many paths which followed) I have had an adventure, and maybe even learned some stuff I can take with me, to wherever’s next. I would not venture to say I am wise (though perhaps wiser than before, whatever that means). But I’ve seen a lot, and tasted a lot, and felt the crunch of summer grass beneath my feet. I’ve held the powdery miracle of snow between stinging hands, and kissed lips hot with desire. All in all, not too many regrets.
More time, I suppose. Would have liked to have had more time. But who doesn’t say that? My own father, on his deathbed, wanted just a little more time, one more kiss from my Mom, one more moment on this side of the vast river.
I woke up this evening, from another full night and day of sleeping, of saturating my mattress with sweat and thrashing with fever. And after a while, the fever broke, and the sickness subsided for a moment. And I felt, enough to finally think the thoughts in full, that my time here is coming to a slow close. That my days of walking this path are numbered, and that it’s ok.
Seriously, it’s ok.
More time? Yeah, would have liked that. More healthy time, if I can be specific.
My doctor wants to keep me alive. I want to live. Those are becoming disparate goals, I suspect. These last few months of meds, of pneumonia, of toxic chemicals and their repercussions, have forced me to re-examine all the decisions I have made, and made me choose my fights far more carefully.
I choose not to fight for my existence right now. And maybe not again. A life of pain is frustrating. A life of invalidism is depressing. Sensing, dimply a world passing underneath my prone body, in which I am no longer relevant nor participating, I have chosen not to struggle so hard to simply stay. Not for it’s own sake.
I have outlived so many friends. And I have outlived so many incarnations of myself, if that makes any sense. I have outlived my relevance, I think, and my ability to strap on the silver armor. And that’s ok. Because it’s something most people do, if they live long enough. I am alive today, and I celebrate that. Celebrate it more for these precious and dwindling moments when there is no fever, no burning eyes and foggy brain, no unpredictable and insistent intestinal trauma, and no haze of pain.
I feel as though my fevers have burned away something that kept me from clarity. Something protective maybe, something necessary for one with both feet firmly planted on this plane of existence. And what is left seems oddly raw, exposed, and ill-suited for survival as we recklessly define it. There is something else, and I feel I am moving towards it with the slow surety of any particle of matter drawn towards a singularity.
I could have written more, and drank less. I could have loved more wisely, and not so much. I could have kissed fewer lips with more conviction. I could have sent more greeting cards. I could have fought fewer useless battles, and more relevant ones. I could have spent less time in the snare of fear, and more time at the beach. I could have wasted more time in better ways.
This has been a great ride, and I am aware I am closer to it’s end than it’s beginning. Though nostalgia and regret make me sad sometimes, it’s the bittersweet sadness of a party well attended, if only half-remembered. I refuse to discount that, to deny the truth my body and soul tell me every time I leave the comfort of dark sleep.
The last few months I have dreamed of my family, including my dead father, quite often. Last night, I was tending my ferrets in my sleep. All of them, those who died in my arms and those still slumbering in the other room. The easy mixture of the dead and the living does not escape my attention, and I know the recesses of my primitive brain is telling me something important. I am passing from one state of mind, perhaps from one state of being, to another. And I am ok with that. It’s as natural as the snow, and as miraculous. It is as normal as the passing of seasons, and as relentlessly magical as the turning to leaves from green to orange.
Fall seems to be heading to winter for me. As it’s supposed to. As it does, for everyone and everything we know and love. Whatever else happens, I know I will not be alone, on this side of the river or the next. To say that is a comfort is a gross understatement. I do not think my dreams are lies. I do not think my love is wasted.
I am recording this because people have asked if I am OK. And thing is, yeah, I am. I’m sick. Might be dying. But I am fundamentally ok, if a little wistful and sad sometimes.
Though I have placed a moratorium on buying any new DVDs (thanks to Netflix) I made an exception when the special edition of "The Last Unicorn" came out this month. It's a movie I highly recommend, and not particularly for kids. The theme song includes the following lyrics:
When the first breath of winter/through the flowers is icing
And you look to the north/ and a pale mooon is rising
And it seems like all is dying/ and would leave the world to mourn
In the distance, hear the laughter/ of the last unicorn
I'm alive
Comments (23)
There will be more months like these. Hugs!
Posted by Zośśś | February 13, 2007 5:54 PM
Posted on February 13, 2007 17:54
I often spend an evening reading your words. Like many probably do. You say that you feel that you are in the winter of your life and your latest blog finds you reflective. So allow me to join in you in some reflection.
I have shared a few PMs with you and battled with the worry wells in the "Am I infected" part of this website. You are one of the smartest people I have come across on this website. You have clarity to your writing that few people have and are able to articulate things where other would stumble for words.
If the December really does come and the winter ends, I will learn of such news with a heavy heart. I have not known many people with HIV and it could be claimed that I don't really know you. I have enjoyed our brief communications but I have come to know a little about you from your writing on this website.
So why would I feel sadness for someone I honestly hardly know? It pains me that with a world full of pain and hate we stand to lose an example of the very sort of people we don't want to lose. I am sure you might rebut that you are not an angel - but honestly who is? It is selfish to wonder what we might lose when I am insulated to your struggle and view in via my cathode ray window. I stand to lose someone who has made me think differently and more deeply about the disease than any book has ever done so. Let's make no mistake Jonathan, you have had an impact….and judging by the number of PMs and messages you get, I am not alone.
In my job people band around statistics about people living with HIV and I honestly believe that few really know what that means. I probably didn't until I came to the website and learned from people like you. I can not quantify the impact you have made on me and it is the effect you have had on me that would make the pain of bad news large.
I live in hope and hope you are doing OK. My initial reaction to your words was that this wasn't good news. However, on reflection, if you are OK with things then this is OK with me. I can't sit here and patronize you about new dawns, but merely hope that they come.
If the winter does end and isn't replaced by spring then know that I have always respected you Jonathan and will miss your presence as I would a brother.
Richard.
Posted by HIVworker | February 14, 2007 12:17 AM
Posted on February 14, 2007 00:17
Jonathan, you are a remarkable soul. Your words bring comfort to others, even when you yourself can not find comfort.
I wish you peace, I wish you pain free days. Even if it is only one or two pain free days, I wish for you to relish every moment.
I have not met you, but I feel sadness and comfort through your blogs.
For where ever your journey takes you, for whatever you believe, I know you will be welcomed with open arms and hearts. This world will be emptier without you, but where you go will be blessed to have you.
As hard as the battle is, you are here for a reason, don't give up the battle before it is time. When the time is right, know that there is love coming from Michigan, wishing you a safe journey.
Love and comfort from Michigan,
Connie
Posted by Connie | February 14, 2007 11:15 AM
Posted on February 14, 2007 11:15
everytime I leave your blogg, I think.
Ive just recently within
the last couple of months
read your words. And as I have
commented on them before,
we have to got to be on the same
wavelegnth. Word for word,
as I read, You pull something
out of me. Like as if you
are speaking from what I am
stumbling to say.
May we meet in the future.
Posted by mathew | February 15, 2007 6:06 PM
Posted on February 15, 2007 18:06
very sad to read u nearly giving up hope on life ur night sweats r caused by impurities in bloodstream and subsequent body pains associated with it is caused by trauma in intestine that is not absorbing food u eat it is leaking from there try some LIQUID coffee enemas(ONCE) every day for week TO CLEAR DEBRIS STUCK THERE not too much it might weaken u some ayurvedic meds to heal TINY holes in instentine n ozone THERAPY to knock out pnumenia 5 MIN EXERCISE ON ACCUPRESSURE MAT U SHOULD FEEL PAIN NEAR BACK OF FEET promise will MAKE U HAVE GOOD OUTLOOK prayers every hour u r an inspiration n angel god bless
Posted by gary | February 16, 2007 7:33 AM
Posted on February 16, 2007 07:33
I know this guy personally. He's very strong and yet, like any of us, can be unexpectedly knocked down by an unrelenting illness, meds side effects, or just a bump in the road from some unknown germ or virus of which has crossed his path.
I don't go an hour without wondering how my insightful, intelligent, and dear friend is doing. Sometimes, these blogs are how I find out because he is able to write them when he's in the mood to share with others.
I understand that though I wish it were easier for him...to share...to be healthy...just...to be.
You are quite the eloquent writer, Jonathan, and I enjoy the insights into your mind I get by reading these blog entries. You are one-of-a-kind as shows through so clearly in these writings. We are blessed through your sharing and want more of it from you when you can.
Big hugs...R
Posted by Richard Maritt | February 16, 2007 9:32 PM
Posted on February 16, 2007 21:32
Valentines day really sucks doesn't it?
Jonathan,
I know that in certain circumstances, depression is virtually the same as just being realistic, if that makes sense. Depression takes away hope, and not having hope is very depressing. I don't know enough of your life and history to have any opinion, but I have been very depressed and I have been very sick and suffered pain, so I know that one can lead to the other. I guess the point I'm getting at is that depression can make everything look much more bleak and hopeless than it would appear if your brain chemicals were in wack. It also makes pain more painful - strange but true. Being sick and being in pain can lead to depression which can settle on you and remain even after you feel better physically. I'm not saying that you are depressed, only that you might be, and it would not be surprising or strange after all you've been through. AIDS compounded by depression can be far more lethal than either alone.
Well that's a bunch of platitudes mostly. Sorry for that. I just want to be able to help I guess, and don't know how. I think you should talk to someone about how you feel, if you haven’t already. I mean actually talk without two keyboards in between.
One bit of advice, for what it's worth, if the drugs are not the solution, they are part of the problem (how's that for abusing a metaphor?). To be more specific, if you can't find 3 or 4 antiviral drugs that work, take 2, or even one, and spare yourself the toxicity and side-effects. This is the exact opposite of the latest consensus opinion of ID specialists. They would say that's CRAZY TALK, blaspheme, you need at least 3 antivirals or you’re just asking for resistance and will go straight to hell in a hand basket. Well guess what, we already got resistance, so get over it. To me it's just common sense that taking more powerful drugs is a dumb idea if they are not working anyway and ruining your quality of life meanwhile. I've become sort of a rogue over the years as HIV treatment evolved into a cookbook method. I never liked to follow recipes and my food general turns out fine. I was supposed to be dead a long time ago, so this is all gravy anyway. The problem is that now, I can't find anyone willing to treat me because I won't take all the pills they push. They think I’m nuts and the feeling is mutual. So I just keep doing what I’m doing, check my counts and hope for the best. It's beginning to be a real problem for me, but it seems your doc isn’t helping that much anyway, to be frank. So get mad and have a tantrum right there in the clinic if you need to. What the hell. Again, for what it's worth, here are some things I have learned that you might not ever hear from your doctor.
The only thing keeping me alive for years at a time is Emtriva (the drug formerly known as Epivir before it's patent ran out). It's the only thing I'm taking right now. This drug is completely ineffective on paper against my virus and has been forever. Yet it works. I would never stop taking it, because I know it's helping me beat the virus. You may have heard this already, because it's widely accepted, though rarely exploited. The mutation that allows the bug to resist the direct effect of the drug also cripples it, makes it less harmful and less "fit", or able to replicate. I am living proof that this really works. I have gone off all meds, and my counts got real bad real fast, so I'm not one of those lucky non-progressing people. Emtriva is keeping me alive and healthy all by its little self. For me, it's a miracle drug. Anyway, if you're not on it because it "failed", give it another try. Side-effects are minimal and it can't hurt. Next, DUMP AZT! It's more toxic than it's worth. That's purely just my opinion, but I believe it strongly. For me it causes nausea and interferes with my appetite. That alone makes it intolerable. You have to be able to eat, or you are pretty much doomed, and you don't need to become anemic on top of everything else. I won't even get into how I feel about the PI class, except to say that I avoid it, and intend to as long as possible. I realize that's a luxury you probably can't afford anymore, and eventually I might not be able to either. BUT, if they're not working for you, don't take them. There is no point and it is just making you sicker.
Another thing, recheck your resistance panel often. Sometimes the NN class comes back after a while, and possibly others (this is the only one I've seen rebound first hand). The docs will say this means nothing, and can't be trusted, but I know from experience that it can work again for at least a few months - long enough to get close to undectable. I had a bunch of Sustiva about to expire in the cupboard. I like it anyway, because it makes my dreams more fun and interesting. So I started taking it - didn't ask anyone's permission (more about that later). My viral load started dropping fast till it was down from 100K to a few hundred. That's worth a lot if you ask me; even it only works for a while.
You don't need permission to do what you decide is best. Unfortunately, you do need prescriptions and most docs need to be humored because they have enormous egos. Let them think they are in control, but remember that it's ultimately you who decides whether or not to swallow the pills every day, and you can change your mind at any time.
[One disclaimer lest anyone get the wrong idea: I'm not advocating willy nilly or reckless choices. I'm assuming that homework has been done, and the risks are known and understood. Not everyone has what it takes to do this, and not everyone should. Also, take the pills or don't take them, but whatever you do, do it consistently.]
I’m a strong believer in holistic medicine. Health is when all the systems of the body are functioning well and in balance. Ideally, your doctor should support this. I see an osteopath, which is sort of like a chiropractor with prescription power. He's amazing. He “prescribed” DHEA (sort of like testosterone without the needles), Elderbury juice (antiviral) and recommended a supplement called ImmPower, which you can buy online. Previously I had been taking Cordyceps (type of mushroom), as prescribed by my Chinese doctor (acupuncturist), which seemed to help my counts. ImmPower is a more refined and ostensibly more portent version of the same active compounds in the mushrooms. I haven't been taking this long, so I'll have to get back to you - don't go anywhere.
Nutrition is so important. I can't stress this enough. It's completely obvious, yet so many doctors don't spend any time on it. If you don't eat, you die. Well duh! Everyone knows that. Yet so many people don't realize that it’s at least as important as what prescription drugs you take. Everyone with HIV should be taking vitamin supplements and lots of anti-oxidants. You can’t take too much vitamin C. My osteopath said he takes 8 grams or some insane amount. Just drink lots of water.
Here's a link:
http://www.integrativehealthconsulting.com/
Doctor Kaiser is my guru, and most of my ideas about HIV treatment originated from his books.
Finally, the hands down number one worst thing for your immune system is stress, which I can testify to after moving across the country last winter while breaking up with a psycho drama queen (breaking up every single day that is), who never actually left and gave me any peace, and having a pathological liar and drama queen for a realtor while trying to sell right when property values started dropping. After all that, my counts went in the toilet, but still, I wasn’t quite ready to go on the whole 9 yards HAART bullshit. I got rid of the BF, went to my HR department and told off my hormonally challenged new manager. Then I was able to find a little serenity, and sure enough, TC up, and VL down, dramatically.
I appreciated the sentiment in the blog entry by the way. I didn't miss the point completely, though it might seem like it. The meaning and feeling behind it was very clear and thoughtful. I can tell that it came from your heart, and it inspired me to do.. something. Hours later I'm still here typing away. My first reaction is to try to "fix" you. But that’s about me, not you. I'm just a problem solver. It's what I do. I realize that you didn’t ask for help, and may not actually appreciate the attempt, so I won't be surprised if you don’t thank me. Hopefully I didn’t annoy you too much, and maybe there is something here that will help one of your readers if it's not what you need now.
For what it’s worth.
I wish you well.
James
Posted by James | February 17, 2007 7:41 PM
Posted on February 17, 2007 19:41
Hi Jonathan,
Just now got to read this last entry and needless to say, I am moved beyond what you might think.
Thank you for letting us share in this very difficult part of your journey, and doing so with such grace and generosity!
Having lived your present pain, discomfort and visions; I need you to understand that there are many out here who are sharing this time with knowledge and understanding. I only know one thing and that is when you do find the end of winter, it will be a time of ultimate peace, and there is no more pain on the other side of the river. I will plead no longer to keep you here, as I totally understand the wrenching dilema which that places on your psyche. I will simply remember you when and as often as is humanly possible, and will keep you in my spirit.
Please don't try to fight too much, as when the time is right, you will be OK with it and it will be a time of peaceful transition.
I don't usually do this, but I want to thank you for being in my world and for allowing me to touch your face, feel your spirit, kiss your lips, and to simply be with you in the real time of the past and present. Thanks Jonathan, you have enriched my life, and in doing so, I can only hope that I yours.
Thanks for being a friend.
In Love and Admiration,
Tim.
Posted by moffie65 | February 18, 2007 8:12 AM
Posted on February 18, 2007 08:12
Jonathon... your words move me.
I wish I had the chance to know you personally, but your postings here have left the indelible fingerprint of your beautiful soul for us to remember.
If you step into your final journey, it is my hope that you feel the love others have for you with your final breath.
Scott (dtwpuck)
Posted by dtwpuck | February 18, 2007 9:15 AM
Posted on February 18, 2007 09:15
You're relevant. Always were, ***always will be***, even 1,000 years from now.
Posted by allopathicholistic | February 18, 2007 8:48 PM
Posted on February 18, 2007 20:48
I love this guy....and we've never even met.
Be well Jonathan.
Posted by Eric | February 18, 2007 10:27 PM
Posted on February 18, 2007 22:27
Dearest Jonathon
I have no words that can describe how I feel right now, but what I can say, and in all honesty, is tonight for the first time I could actually hear my heart crying.
In love and tears I wish you the dreams you have yet to experience...and the time to do them.
Love and hugs
Jan
Posted by Jan waddell | February 19, 2007 4:16 AM
Posted on February 19, 2007 04:16
Your words also continue to move me. Although we've not met nor corresponded, I too appreciate your grace, generosity in sharing your story, and admiration for your strength. Best wishes!
Posted by Spartan | February 22, 2007 6:32 PM
Posted on February 22, 2007 18:32
If you will indulge the comments of someone who knew you well and loves you still,
Dude, You better hang on long enough to write another blog, because if you go out on a "Last Unicorn" quote I will buy a Ouji board and hold a seance every night just to rag on your sappy ass!!
"Am I the last, are there no more?" At least you haven't tapped into the Richard Bach yet.
Love Always,
Lisa
Posted by Lisa | February 23, 2007 6:49 PM
Posted on February 23, 2007 18:49
Dear Jonathan,
My name is Jenny and I am part of an online community called CarePlace, for people experiencing similar health related issues and their caregivers, including HIV. We have recently added new HIV related communities and content to the site.
As your blog relates to what we are doing at CarePlace, I was wondering if you might be willing to check out our site and let me know if you think it might be helpful to the people who communicate through and with you. People can join multiple communities, share experiences, check out info on medical conditions and treatments and form their own groups within the site.
We have gotten great feedback and as you know the more people in various communities the more outreach and support that happens. Our users have really liked it so far and we are adding new features and content based on what they are telling us.
It’s clearly important to us to get feedback from people like you about CarePlace as we develop our site. Site address is www.CarePlace.com. Please add me as a friend (profile name Jen D). I would very much appreciate any insight and thoughts you have about our organization and the site.
Thanks in advance!
Jenny (jend)
Posted by Jenny | February 27, 2007 6:23 PM
Posted on February 27, 2007 18:23
Dear Jonathan,
You have brought me, and surely many others alot of comfort with your honest, sincere words. I have spent many years feeling sorry for myself and my own trials. I read your blog, a few times and this time in tears. I wish you sincerely the very best, and will keep you deep in my prayers. May the Peace and Love of the LORD always be with you. Thanks for sharing with all of us.
warmest reguards,john
Posted by John | March 9, 2007 8:37 PM
Posted on March 9, 2007 20:37
Where are you?
I got you in my pocket, kid, and Spring always follows the harshest Winter day.
Peace and Love are Yours...
Michael
Posted by Michael | March 23, 2007 5:39 AM
Posted on March 23, 2007 05:39
Just from reading your most recent post I see why others have fallen for you. Even through your pain, suffering and sorrow, you manage to express hope and even the promise of tomorrow.
I know it has been a while since you have posted, and I hope you are doing better. Maybe they can put you on Atripla and at least reduce your pill input and your side effects? Kaletra sounds like the worst of the worst.
My depression is often so deep and profound that I can not bear to rise from my bed (and I am not even physically ill, as you are). So to see you reaching out to the world is an amazing thing to me.
May the Gods be with you my friend.
Scott
Posted by Scotty O | March 29, 2007 8:18 PM
Posted on March 29, 2007 20:18
Jonathan...
i am new in this, was confirmed poz three days ago... i havent cried much since i got confirmed, just tonight that i am a bit sensible about it.
it is first time i read this website and found nice blogs, i am about to go to sleep now, 2am. and i found your blog.... then.. i found out you were thinking about dying.
I have to admit i didnt read your whole post... to be too sick is my main fear at this time... and i try to stay healthy and hope to live until i am 100 years old and can die calmly.
i know few or nothing about this illness, but i know one thing for sure. YOU DON'T HAVE TO DIE BECAUSE OF IT. I mean we all can die because of it, but WE DON'T HAVE TO.
Lately i have though that if one day i am sent to bed, very very ill... i will stick to the easiest way out... ask God for an early retirement. But right now... reading your blog, i have to say this... it is not my time to die Jonathan, nor yours, THIS IS NOT OUR TIME.
I know you like winter and you enjoy details in life and see everyday like something new and marvelous, but you cant really enjoy it to its fullets while thinking in dying. RE TAKE THE GOAL, HUG LIFE AND DONT LET IT GO. We have to stay alive ok? there is still so much to do... for ourselves and for others.
If there is spring always after winter... why cannot be such a nice healthy life after a very serious problem? why not? come and lets enjoy the great life we have in front of us.
I have a friend, who is poz since 3 months ago, i just knew it. He was about to die... in bed and is very very very thin right now.... but he is ok, getting better like you will. and you know.. i made him swear he would stay alive until 100 years old.. and i swear it to him, and when i celebrate my 100 year birthday.. YOU HAVE TO BE THERE JONATHAN. OK? This is an invitation you cannot miss.
i am new in this but i say one thing, we are not here to die.... thats something i wont accept it.
so get better soon and stay in touch, your new friend for houndred years more ;)
Juan Carlos
Posted by Juan Carlos | March 31, 2007 3:18 AM
Posted on March 31, 2007 03:18
Aloha Jonathan!
I have seen your blog for a long time, but never really read it. I know that I thought you were very cute! Anyway, I just joined POZ Personals and saw your blog and checked it out. You are very wise and in tune to what is happening to you. I wish that I could some how meet you as you are very inspiring. I wanted to write to say that what you are talking about is what I am reading in "Home with God....In a Life That Never Ends" by Neale Donald Walsch. He is also the author of many other books including "A Conversation with God".
If you would like, I could buy and send you a copy if you feel like reading it. If not, you seem to be grasping what life is all about and I totally understand what you are saying. I have been there.
I am listed on Poz.com under only1damien. I don't have a picture to upload but do have one at gay.com under damien13_13.
I wish you the best in health and your continued journey of life that never ends. You are an amazing writer and I just had to write to tell you that you are touching more people and giving them something that is helping them out in their lives than you will ever know.
lots of love,
damien
All the best to you and I hope you enjoyed Cirque de Soleil.
The Rose, sung by Bette Midler
Some say love it is a river
that drowns the tender reed
Some say love it is a razer
that leaves your soul to bleed
Some say love it is a hunger
an endless aching need
I say love it is a flower
and you it's only seed
It's the heart afraid of breaking
that never learns to dance
It's the dream afraid of waking that never takes the chance
It's the one who won't be taken
who cannot seem to give
and the soul afraid of dying that never learns to live
When the night has been too lonely
and the road has been too long
and you think that love is only
for the lucky and the strong
Just remember in the winter far beneath the bitter snows
lies the seed
that with the sun's love
in the spring
becomes the rose
Posted by damien | April 1, 2007 9:58 PM
Posted on April 1, 2007 21:58
Havent seen a posting from you in awhile. Whens the next one??
Posted by Kyle | April 23, 2007 3:35 PM
Posted on April 23, 2007 15:35
I usually just lurk. BUT, your blog is inciteful and capitivating. To be honest, it took me 2 weeks to find "POZ" as I was googling "POS" after seeing the word used in a magazine that I did not buy. Yeah, duh...
Best of luck to you.
Posted by Craig | April 29, 2007 9:48 PM
Posted on April 29, 2007 21:48
Jonathan
I live in Atlanta wanted to know if you needed any help doing anything. I have always wanted to volunteer and think that this could be a good time too. If you need anything at all, a friend to talk to, help in the house, or just someone to lean on, drop me an email and i would love to help out.
Kyle
g8rguy0502@hotmail.com
Posted by Kyle | September 4, 2007 10:26 AM
Posted on September 4, 2007 10:26