Subscribe to this blog's feedI am slowly sitting up in the dimly light room. I am naked but I make sure my crotch is covered with the thick warm blankets that have been provided for me. My eyes are adjusting to the dimmed light. The mirror that is staring back at me is a little harsh. I am, having a hard time seeing the muscles that take hours of work and religious devotion to grow and maintain. All I can see is the crevice. The sharp demarcation of the stigmata that is slashed on the left side of my face.
For all of my bluster and bullshit it is starting to happen. I am wasting. My face is sinking in and I hate it. I shrug into my 501s as there is a light knock on the door.
"Come in," I say.
"Well, what do you think?"
I smile and half - lie, "You did a great job."
The woman smiles warmly at me.
"It was pleasure," she says. "I hope the next time you're in New York you will come back for another facial."
"You know it," I respond half heartedly. "You do good work."
She smiles again as she picks up my shirt. As she steps closer she spies me looking at my face.
"I did the best I could with the left side."
"I know," I answer far too quickly. "Nothing to be done. It is the disease you know."
Sadly she says, "I know." She hands me my shirt and provides the usual instructions to meet her up front after finishing dressing. .
Before heading to pay my bill I hit the men's room where all the forgiveness of stilted light disappears. The contrast is stark. I pee and look in the mirror. The magic of the lighting has been switch to off. I glare at myself glaring at me. I try not to get mad at what I see, and I don't actually. What I feel is sadness and loss. No matter how much I work out and how well I take care of myself the fucking virus always sneaks in and sends off little bombs in my mind. Today my mind noise is in full fledge battle and not the usual skirmish.
My face sticks in my mind like and ice pick. As I walk up Fifth Avenue I keep my head down and avert the dangerous reflections along the way back to the hotel.
I know I am luckier than most and this bout of self absorption is beginning to get on my nerves. However, I also I am just like everyone else in the world living with HIV. I want a day without reminders, pills, or thoughts about the fucking virus. However, that is day is not coming and I have to deal with it.
Back at the hotel I change clothes and look for any other tell tale signs of the virus. I stare at y naked body and it looks okay. I can still pass I think. But pass for what I wonder?
Ah, screw it I say to myself and I hear these lyrics in my head instead of the bombing... I think I'll try defying ...you won't bring me down.*
May I can just pretend I tell myself. Then I look again. No use pretending I say to myself as I pull down my ball cap hard and to the left.
* "Defying Gravity" lyrics by Stephen Schwartz
I read your blog this morning, and my heart sank to my stomach. Your metaphors of little bombs going off in your head is something that most people with HIV has. But, what I want to tell you is that your words of just your experience alone HELPS! Just the fact that I can personally read your blog and know that there is someone else in this world that is walking in my same experience. I do understand that all our experiences are different, but your blogs do help!
As for your looks, I don't see what you see. In your photo's I see a man with wonderful eyes. Your written words are truly heartfelt.
The only thing that I want to add is this. Instead of looking at the virus or any other experience as only negative. Please take some time to see the positive. You are touching lives with your blogs. I am sure in your field you also help people thru their experience. Every time you write, you are showing another portion of your mind/soul. So in just those areas I find you to be a beautiful person.
So please don't walk with you head down, walk with your head held high. You are handsome, intelligent, but most importantly you have emotion. The virus has not stopped that part of you from feeling.
So while we can't stop the negative feelings from happening, we can let the positive feelings in. And in some cases push those negative feeling out.
If I have never told you, THANK YOU! For your blogs, and letting me know that it is OK to feel, just feel.
Joe
Joe,
I am humbled and moved by YOUR words. The fact that my act of writing brings you, or anyone, some comfort and joy enables me to see life through a better lens. Thank you so much. It often gets lonely in cyberspace......Ric
My dear old friend, how my heart aches for you. I read your words and see the expression on your face - that face that looks so very different than what I remember, and yet, the same. I cannot read your words or see your face without remembering. We did a lot together, and a lot of "firsts" for me, as you may recall. Some "firsts" for you too. We took a lot of risks together, yet separate. After career choices took us on different paths, I lost the risk-taker part and found myself being drawn to God. I always knew you would go far because you were always so smart, maybe too smart for your own good. But here we are, you suffering, and me unable to do anything for you but pray.
And praying I have been. Ever since I saw your website and learned you were sick. I cannot imagine the anguish, both physical and mental, that torments you. That's one reason why I haven't commented until now. What do I say to someone who was my best friend in childhood, who took me in when I needed a place to stay, who took me to the ER when my eyes almost swelled shut because I was allergic to Bill (that was funny now that I think about it - you were so panicked), knowing that nothing I say can make a difference to change the way things are? A magic wand should would come in handy about now. It's hard to know exactly what words to use to say how much I wish things were different for you. I will continue to pray, knowing that God can deliver you. That's what I pray for. You continue to take care of yourself as best you can. There are people who love you, even after time has passed and experiences have changed. Always your friend, G
While not a huge fan of your writing, your story this time really struck a nerve. "It's my face," that causes me sleepless nights these days. I'm 46, feel 30 and, God help me, look 60ish on a bad day. I have a wonderful life with a wonderful man and yet I wince every time I look in the mirror. Why did this disease decide to hit me in my face? And why can't I afford to do something about it? And why, and why and why? And now I've discovered a little bit of relief that also comes with a cost I may or may not be willing to pay. Last year I had cancer. I had been a a workout queen for many years. Tall and well proportioned I generally weighed in around 170-175lbs. I ran, I lifted, I jumped and lunged. But then, gradually, I lost my face. I settled on flying to Rio to have filler injected. Hell, I was even going to have my ass done. Then the cancer struck. You learn not to care so much about your face when your entire life hangs in the balance. After the treatments stopped for the cancer I was told that I would probably never regain all of my weight. Taking that as a challenge I began to stuff my face. I, and my partner as I hated to eat alone, began to fill out. I landed just shy of 190 lbs. I now have a belly. Ack!!! Though I have to say my face is fuller. Now, never being one to leave well enough alone, I'm stressed out over beginning to work-out again. I want to lose the belly and get back down to a nice "fighting weight." But I don't want to lose my face again. Oh for God's sake, can the little voice just go away? So, once again, I get to make some choices. Who wins out: the face or the belly. Will I be fit or fat? Where will I decide to stake out a happy medium? I struggle with this every single day now. My pants don't fit well and I have to wear sweaters instead of tailored vests. My look is more casual now whereas it used to be more formal. Should I just do what feels good and let nature take its place? Should I, should I, should I? I don't have an answer yet. I can tell you that having 7% body fat, in combination with the drugs and then adding in age, took its toll on my face. Being fat presents its own challenges. I'll have an answer soon. Just after I eat this next cookie.
John,
I really want to thank you for your feedback. I also want to take this moment and let you know that those of us with HIV do indeed have unique challenges with our bodies and aging. However, we should NOT becomed resigned to this as "just another fact of life". I may have noticed some wasting in my face and hate it (and I do)but I made a committment to getting back into shape several years ago. Now I am about to turn 54 and after making some serious diet changes and becoming a personal trainer I have a body I never dreamed possible. I think a lot of other people living with HIV/AIDS simply don't know where or how to begin. I want to help in area anyway I can and hopefully will have my website redisigned by year's end specially talking to other HIV positive people about aging, working out, decreasing stress, and packing on muscle. It can be done. It is not "magic" but does take knoweldge and work. However, it is worth it. Keep in touch and let me know if I can help....Ric
Grace,
It is great to hear from you. Despite the dent in my face my life is pretty great. However, hearing from an old friend like you just makes my heart smile. XO R
i would also like to add my thanks. it takes great courage to post stories like this, and reading them, though painful at times, still makes others feel less alone... like someone else out there in cyberspace knows how it feels. thank you again for your honesty, courage, and willingness to share. peace....
It is just like sobriety....I get a lot more than I give..but thank you. Ric
Richard Ferri, I SO VERY MUCH ENJOYED READING YOUR ARTICAL. WE R VERY MUCH ALIKE IN THOUGHT,
UNDERSTANDING & APPERANCES. YOUR BODY IS A LITTLE BETTER THAN MINE. HA HA AL
Thanks Al...happy you enjoy my words. It doesn't matter what our bodies look like it is the same universal experience we are sharing as people living with HIV. My dream is to some day soon have a place on my website for other positives who want to get into shape (whatever that means to them) and be healthy. Living with HIV is not about just taking pills. Far from it.
Ric.. I want you to know you are a larger than life inspiration to me as well as others any time we read your blog.. Yes, just as you those
times come over me.. but I fight back.. telling
the fuckin enemey battle line my soldiers are kicking your ass.. I got into med studies with the Fuzeon in 2000.. i admit to injection fatigue.. and my doc say I have a 'pidly' virus
but every side effect of meds.. ugh.. within 30 days of fezeon.. I remain undetectable still..
but the war inside rages on.. like Joe before.. I worked harder on my body to keep my spirit up.. I think it's what we see that makes us feel better if it looks better.. Pitiful we're so bod consious but.. in 2002.. i came up with AVN... R-hip replaced 03.. 04 it was facial wasteing.. after several treatments with Sculptra I'm me again.. and I remain me today..05 it was L-hip
gone.. as you know.. some Med causes heart disease.. being very toned fit, didn't keep me from 2 heart attacks in 06 and 4 stents.. I tell you this as many have stories like me.. only that you know, we're right here with you, fighting the same war inside.. and like many guys.. in you see don't see what you see like no one saw me as I see me.. within a short time..
I got all kinds of unsolisitated comments of how built I'd become.. they only noticed I must be projecting a bigger grin.. stepin higher.. and I had to laugh at me for what came to mind.. ah hell, I gotta stop wearing a ring.. Guys will think I'm partnered..lol.. so.. my point, you keep me going many times as not.. all these struggles I've over come since 2000 with hiv since 1992.. I've done around all these people and no one noticed, helpped or was there.. You guys make me strong.. because I'm a union construction wkr.. I'm able to hold my own amongst the str8 butch men I work around everyday.. who are totally unaware as they break
out our lunch kits.. I'm just one of the guys.. I'm out in my life.. never have I been 'noticed' at work.. I'm not one of those guys who is str8
'acting' I'm just me. as I secretly wait for a man to one day turn and look back at me'.. You put me in that place of having a better mind set.. I have great admiration and care for you.. Jimmy
Jimmy...If I could only find the words to express MY gratitude for your words. My life is tail spinning and my stress level is as high as it has ever been. I don't quite feel "real"...but that is for another blog. Helping you so nourishes me and you have given me much needed strength today to put one foot in front of the other. I amaze myself that I can often time push my body to bulge and build to the point of turning heads...yet, I get lost in my own "viral nightmare" and I cannot push myself to make the bed. Lately it has been biceps building is easy; brushing my teeth require superhuman effort that is eluding me. Thank you Jimmy....Thank you....Thank you.