Subscribe to this blog's feedLast night, I took my pills.
Tonight, I am not going to.
There are things stronger than logic, stronger than fear of death, stronger even than my great love for science. Feeling like crap, and the prospect of continuing to feel like crap, without any hope for the alleviation of that prospect, is enough to make me gag whenever I take my pills. Whenever I deal with the “almost about to throw up” nausea, the foul and unpredictable diarrhea, the headache and fever, and the myriad of other fun side effects that many people insist do not happen anymore.
I’ve been accused of not having any balls. Of lacking courage. And of disrespecting the brave people who lived and died during the tumultuous early years of HIV/GRID/AIDS, and the advent of the flawed medications used to contain that virus. Anyone who knows me knows that nothing could be further from the truth.
I knew dozens of brave, doomed souls who poisoned themselves while I watched with mega-dosing of AZT monotherapy. I know the feeling of a viracept tablet as it dissolved in my mouth while I tried desperately to swallow it with water. I have stood in a room full of near strangers, wearing a suit, and shared stories about a person with whom I had been intimate, romantic.
I have stood helpless and scared, next to a motionless figure in a bed, while a shell-shocked conglomeration of friends and family made frantic funeral arrangements. I have taken a hand, and felt a gentle but unmistakable grip in return. And God/dess help me, I swear I have felt that life force drift out of my friends, into the angry green fluorescent lighting of a hospital.
I have felt the tender tremble of a universe surrendering another precious soul, I know it. I know it like I know my name.
And I have lain in a hospital bed, sleeping to the irregular rhythm of a heart monitor, awakened thrice an hour by codes outside, or periodic checkups. I know the smell of antiseptic, the slow burn of an IV left in for days at a time. I know the softness of my father’s deathbed, where I laid shivering and sweating through the worst of my PCP as my Mom, impotent and afraid, watched me sleep.
I know the sinking feeling of a zero T Cell count, and the sneaking paranoia that comes with a compromised immune system. I’ve feared sushi, feared salads, feared meat and feared additives. And one by one, as though a switch had been pulled, a part of my brain has said “screw that” and eaten them anyhow – because I would rather die free, living through joy than live, a slave to fear.
Yet fear stays with me. A companion, now. Almost, but not quite a friend.
Will I take my pills tomorrow night? I don’t know. My head still hurts, my bowels are still queasy, I still feel singularly chemically unbalanced. If I am lucky, I will sleep before dawn tomorrow, waiting until I am simply too exhausted to monitor my body for another second. And, as has happened before, I might awake to sickening surprises in my bed when I awake.
But I am not brave. And to be blunt, we all aren’t meant to be. Some of us simply were not made of that tough canvas, that burlap of courage. Some of us are simply made of lesser stuff, and frankly, I am tired - bone tired – of apologizing or explaining for my innate makeup. I am equally tired of AIDS “veterans” telling me to grow a pair, and that I should be grateful, as I am of HIV- “newbies” telling me that there ARE no problems, and that my experiences are out of date and invalid. I feel like I straddle both sometimes, subscribing to neither camp, yet an embarrassment to both.
And maybe the hint of bravery comes when I finally realize that I don’t really care.
It’s my life, and it’s my health, and my body and my disease. I have paid full retail for some amazing moments of pure intimacy with someone I thought would be my partner in life. I was naïve and I was stupid. I was also amazingly brave to make such a commitment, to take such a risk based, as all love is based, on necessarily incomplete information.
Staying alive is an act of bravery. Loving another person is an act of bravery. And sometimes, making hard and unpopular choices based on our understanding of science, the universe, our bodies, and our boundaries is also an act of bravery. In the final reckoning, I have no one to answer to but my own conscience and whatever, whoever passes for God/dess in my own decaying brain. And the choices I make tonight, I have no doubt whatsoever that they will come to visit me later. Perhaps sooner than.
I notice lately, I shy from phone conversations.
I run out of words, embarrassingly so, in the middle of a sentence.
Writing, oddly, does not cause these pauses. But in phone conversations, I will find myself suddenly bereft of the rest of the sentence. And it frightens me no end. Helpful friends prompt me, and eventually, when the silence stretches too long, they pick of the shred of conversation and try to knit it together for me. I appreciate that, but I also see it as a sign of things to come. And maybe that’s the hardest choice I will ever have to make.
Do I need to feel temporarily good, or at least unpoisoned, at the expense of my words? Is the choice finally down to that? Today, I have no answer. Except that I have felt bad for over a week now, and I am tired of it. So for the next day, maybe more, I will not ingest chemicals that make me sick. I can do that, at least. I can take a few words and use them still. And I can use them in a body with only the remnants of a headache, only the memories of night sweats.
Sometimes our greatest act of bravery is to simply keep breathing, chucking things we once held dear out of the hot air balloon of our lives, struggling for another few feet of altitude above an angry and violent ocean.
That might not be brave. But it’s brave enough.
Comments (15)
Perhaps this is silly, but what about talking to your doc in order to coordinate with him where and when to skip meds?. Off course i know nothing about the situation... but i think Shawn has days off meds as he talked with his doc, perhaps it could help you.
Hugs, wish you the best
Posted by Juan Carlos | September 12, 2007 1:14 AM
Posted on September 12, 2007 01:14
"And maybe the hint of bravey comes when I finally realize that I don’t really care."
A lot of people just can't understand this. I don't know why. It's just seems so basic to me.
robert
Posted by robert | September 12, 2007 1:38 AM
Posted on September 12, 2007 01:38
Jonathan,
Your struggle, your writing and your approach to life and the difficulty of living consistently provides me with hope and the ability to face my own tough days (and shitty pills)
I understand your frustrations...
Just wished to fly a flag for you
Letting you know there are those of us who understand that choices are never easy...
That living is never easy
"Staying alive is an act of bravery. Loving another person is an act of bravery."
Kudos
and all the best
Posted by R.J. | September 12, 2007 10:08 AM
Posted on September 12, 2007 10:08
I wish I was there to hug you - no one should ever hurt body and soul so much. I am just glad you have your friends and hope they comfort you A LOT!
Your BLOG really hit home because right after diagnosis in Nov 99 - for the next 3 months, I wished I would die - I was tired, so tired - barely alive anyway, and being logical to a fault, it seemed the right choice then.
I remember the hospital stays, each getting longer as my PML took over my body. The smells, IVs, the nausea and the "accidents" that I experienced then.
You make me, and remind me how very lucky I have been and how far I've come since. I have been lucky, I am very aware of this fact and when I read your BLOGs, I get humbled and remember those first few months.
Lots of love and many, many hugs!
Ron
Posted by Ron (Ronald1958) | September 12, 2007 2:53 PM
Posted on September 12, 2007 14:53
Oh sweetie, I wish I was there to hug you.
Anyone who accuses you of "not having any balls", "lacking courage" or "disrespecting the brave people who lived and died during the tumultuous early years of HIV/GRID/AIDS" can simply eff off. They don't know you one iota and are clueless.
Jonathan, I miss you. You are always in my daily thoughts.
Love always
Debra xxx
Posted by Debra | September 12, 2007 4:34 PM
Posted on September 12, 2007 16:34
You strike me as an exceedingly brave, courgeous man. Namaste.
Posted by brandon | September 12, 2007 8:37 PM
Posted on September 12, 2007 20:37
A Simple thank you is always nice, THANK YOU"
Posted by Tommy | September 12, 2007 9:46 PM
Posted on September 12, 2007 21:46
Unlike you, I lacked the courage you possess. When I was first diagnosed in April of last year, I immediately started HAART. For almost 7 months I endured nausea, unpredictable diarrhea, extreme paranoia, depression, anxiety and an alarming inability to concentrate. I kept taking the meds even though I felt like shit and could barely function because I was afraid of the alternative. But I had no life to speak of. I took my HIV meds and they made me sick. I took the meds to counter the side effects of the HIV meds and they put me to sleep (22 hours one day was my record). I was at my wits end, literally. Then I changed regimens and have since been able to continue with my life mostly as I had before I was diagnosed. I say I have disco AIDS – I just take my pills and go out; but I am humbled when I read your Blogs and realize that you have endured for years what almost killed me in a few months.
I know I am one of the lucky ones. I did not have to face the decision that faces you – quality versus quantity. If I had not changed regimens, or if the new regimen did not work, I don’t know whether I would have had the courage to say enough is enough. I understand your need to have some quality of life and the courage it takes to make the decision that quality of life is more important than the time we spend here on this earth, because I lacked it.
I wish you a long life, and I wish you the courage to continue to live it as you choose and as you deem necessary.
Jim
Posted by Jim | September 13, 2007 2:04 PM
Posted on September 13, 2007 14:04
Jonathan,
I can't tell you how much I get from your writing. Touches me down to my soul. Thanks so much for taking the time to write.
Matthew
Posted by Matthew | September 13, 2007 5:31 PM
Posted on September 13, 2007 17:31
Dear Jonathon,
I am HIV - so I can't possibly relate to the pain you are experiencing. However, I think you are incredibly brave because you are being honest.
I am sick of the fact that whenever I try to tell de-sensitized or ignorant people that HIV is still a major problem, huge health issue and that the meds are a huge deal they don't listen. They say that they have heard people are living for years without even noticing they have HIV by just popping some harmless pills...
I respect their prideful spin because they no longer want to be perceived as victims but I suspect that there is greater truth to what you are saying. Bless you, I think you are very strong and I wish you well - whatever happens you have been yourself and lived life on your own terms. That's more than most.
Lots of Love,
Pamela
Posted by Pamela | September 13, 2007 6:05 PM
Posted on September 13, 2007 18:05
Jonathan:
You have such a gift, and I'm glad you are able to share it here...I have been guilty of telling you to "grow a pair" in the past.
Those times in the past when you were giving up frustrated me to no end. Yes, it's your disease, your life, and your talents, to offer as you see fit....or not.
I just wish, when I read the archives here at at your myspace page, that you could find it in you to write more, or collect what you have alrady writte, and share it with the world at large.
You have too great a gift not to share it. You speak for so many of us who can't come close to your eloquence and grace with the written word.
I am glad to hear your back on some sort of a regime...that you find the stregnth to post on the blogs. When I yell at you to grow a pair, it's because you have a voice that needs to be heard.
There are so many here that love you. While I don't know you nor come here often, you are the reason I do....I've been moved to tears more than once by your words.
Thanks for sharing. May you have the will to continue to do so.
Posted by Hdtex | September 15, 2007 11:38 PM
Posted on September 15, 2007 23:38
jonathan, why are you on your present regimen if it is making you sick? As I have stated many times I was sick every hour of every day till I was put on Prezista,truvada,with a small amount of norvir as a booster. Prezista is a miracle. I have occasional bowel problems but no big deal,nothing else. No nausea. Constant nuasea is maybe the worst side of all in my opinion. Not counting lipodystrophy.
All of these drugs you are taking made me sicker than a dog. Reyataz was absolutely horrible.
For the first time since 1989 when I started taking drugs, my vl is undetectable,whatever good that does, I have no idea,cause I have only been sick from the drugs.
I remember everyone telling me to get balls also. Fuck'em. Go to your Dr. and demand a new regimen. You need to have quality of life and you dont have that right now.
Posted by jack | September 17, 2007 12:17 PM
Posted on September 17, 2007 12:17
Hey...
Do me a favor and close your eyes and think of a friend giving you a hug. No, not that hug you get when you haven't seen each other in a while but the hug you give each other when someone you know has been seriously hurt or when you've had just simply a super bad day.
Now imagine that hug... your arms around my neck. Me picking you up off the ground and us both squeezing each other as if the universe itself depends on us to stay tightly together for it to exist.
Imaging that feeling you get of comfort that everything in the world is going to be okay. Keep holding tight as your feet dangle and you feel my arms embrace you so tightly you almost can't breath. Feel our hearts start to beat as one. Feel your arms get tired as you continue to squeeze my neck to the point you think you might choke me.
When you start to feel the universe come back to where YOU WANT it be. When you start to feel like things might just be okay after all, slip down back to the ground. I'll hold you until feel like you can stand on your own feet again. Lay your head on my chest and listen to my heartbeat.
When you know your ready, stand back. Your friend has just given you a bubba hug.
Bubba hugs Jonathan.
Bubba Pat
Posted by Patrick Calhoun | September 17, 2007 5:59 PM
Posted on September 17, 2007 17:59
I've been pretty much a loner since my diagnosis years ago, and suffering side effects is often times dismissed by the uninfected telling me "You look just fine." Stumbling on your post made me understand that my current nausea, fatigue, intestinal weirdness, and verbal loss problems, aren't my own character weaknesses. Thank you for that it made my day! Is it bad that I laughed when you reminded me of the old days of viracept turning my whole mouth instantly blue?
Posted by justjohn | September 18, 2007 10:54 PM
Posted on September 18, 2007 22:54
I thank you for your courage and well being I am having a hard time myself and don't know where to turn. All I want is to find someone to talk to in the general area i Am in. I live in a small town in central Texas and have no one to talk to so it is dificult for me to be myself. I am going through alot of things right now that I don't know how to deal with. I you can be of any help to me please respond.
Posted by donald | September 27, 2007 1:09 AM
Posted on September 27, 2007 01:09