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HIV First Year: Finding Gratitude

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I can hardly believe it has been over a year since my diagnosis.  The news that I was HIV positive, delivered just days before Thanksgiving 2012, caught me off guard and threw me into a tailspin immediately.  But I knew that I could not afford even a moment of self-pity, anger or regret.   Sure this was shitty news, but I still had a lot to be grateful for.  I decided to make a "gratitude list" as a way to focus on the positive in my life.  It might be cliché to be making a gratitude list at Thanksgiving, but it works for me.  And I wanted to share this strategy with readers.

Over the past year, I've been really good about remembering all I have to be grateful for in my life.  Now be assured, that my life is NOT perfect, by any means.  But after a year of emotional, physical, vocational and romantic challenges, my glass remains half full.  I think this is something we can all do consciously.  For me, it starts with pen and paper.  Make your list.  It's hard at first, but it gets easier.  And it makes life more enjoyable.

One of my friends that I had confided to last year has been living with HIV for many years. I have had some valuable heart-to-heart talks with him about all the emotions surrounding diagnosis, disclosure and the challenges of ongoing care.  He generously shared his experiences going through these things.  He is a charming and bright guy who is smart and fun to be with, so I cherish his friendship and just wish we had more time to hang out.

He had some very good practical advice, and he shared his experiences with different medications and doctors.  He spoke to me about my physical health and how it would take an extra degree of vigilance to really listen to what my body is telling me.  This was great advice - a small infection or cold could become a big deal for me.  I had learned that lesson the hard way this past year.  

He also shared how important it is to really work at maintaining good mental and emotional health.  I have a good sense of humor and don't take myself too seriously, which helps.  But I did harbor a lot of cynicism -- and before my diagnosis, I could get pretty negative about almost anything.   After diagnosis, that changed to a kind of manic behavior which eventually led to a period of compulsive eating, exercising, and shopping.  

But soon, I landed in this very zen place where I was just grateful to be alive, have friends, and a meaningful job. I shared my strategy of making "Gratitude Lists" with my friend and remarked about how helpful that had been.  It almost seemed as if my diagnosis had given me a new perspective, and that I was seeing life from a new vantage point.  

Vantage: I wondered if I was using the word correctly.  Curious, I decided to look this up, which provided the startling definition of "vantage" below:

van·tage  (n.)

1. an advantage in a competition or conflict; superiority;

2. A position, condition, or opportunity that is likely to provide superiority or an advantage;

3. A vantage point.

 

Hmmmmm.  This HIV diagnosis resulted in a different vantage.  And this condition presented a new opportunity that was more advantageous or superior to my old view.  Hmmmm.  This was very interesting to me. 

My friend seemed to know exactly what I was talking about.  He is a smart guy and is studying Psychology in a very challenging Masters program.  He explained there is a psychological concept called "Benefit Finding" which is akin to seeing the bright side of life or being grateful for basic things in the aftermath of a traumatic event.  I was intrigued, so I looked it up, and was pretty blown away:

Benefit Finding refers to an individual's perception that major positive changes have occurred as a result of challenging life events such as major illness or trauma. After a trauma, illness or other negative experience, some individuals report a new appreciation of their own strength and resilience. Other people may feel that their relationships are stronger and that they feel emotionally closer to others, especially family and friends. Yet others report that they have become more compassionate or altruistic. Life philosophies may also change. Some people cite an enhanced appreciation of "the little things in life" and redirected priorities. Finally, some individuals note a new openness to spiritual experience or religious activities. Succinctly, benefit finding is akin to the adage "When life hands you lemons, make lemonade." Interest in the ways in which individuals may grow or change following stressful life experiences paralleled the formation of the positive psychology movement. By focusing on well-being instead of pathology, the study of benefit finding and growth has articulated people's positive adaptation to stressful, traumatic, and negative life events. (Suzanne C. Lechner)

It goes on and on about how this "benefit finding" phenomena is correlated with higher resilience, post traumatic growth, feelings of spirituality and purpose.  There are also studies showing positive correlates in the form of better health outcomes, slower disease progression, and ability to let go of unhealthy behaviors in favor of healthier choices. 

I don't want to get too far gone in this (although it is very interesting).  I just wanted to share that this gratitude listing, benefit-funding, staying positive stuff works.  If there is one thing that got me through this year, it is realizing that I am quite fortunate.  As you move through your first year of living with HIV, I hope you find a way to see all the great things you have going for you, and all that you are blessed with.    

Next time:  I want to share a bit about my hopes for the New Year.  The first year of this blog has been a cathartic and wonderful gift where I have focused intentionally on my internal emotions and mental and physical health.  In 2014, I want to share a bit more about my work in HIV/AIDS fundraising, and some of the real obstacles we face trying to take care of ourselves.  I would also be open to any suggestions from readers.

HIV First Year Milestones: Turning 50

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April 2013 was a big month in many ways for me.  As it approached, I realized that April would mark five months since my HIV diagnosis, and was also the month I would turn 50, and also the month i would celebrate my ten year anniversary clean and sober. And because it would also be one month since the catheter installation in my left arm following my March surgery, I hoped that April would bring the end of that drama, and be the month where that awful device was removed.  April was also a birthday month for my late sister, Mary, who had passed away in the summer of 2012 after a long battle with breast cancer. April was full of joy and sorrow, love and pain.

So, with all due respect to June as the month that's "busting out all over," for me, April easily eclipsed June in both volume and significance. April 2013 was particularly portentous because of all the milestones it would mark. I felt extremely lucky to be alive, but I wasn't quite sure how to mark these major life benchmarks. Perhaps with some type of combined celebration?  As I thought it through, it just seemed comical: "Hooray!  I'm 50 years old, 10 years sober, have HIV and a tube in my arm, and can't have even one drink!  Lets have a party!"

Having had so much sickness, death and grief over the past year, I drifted deeper into the darker existential side of my nature.  What if that infection I got in the hospital had gone unchecked and killed me?  How long would my loved ones live?  When was the last time I told my friends and family how much I loved them?  Or my beloved, who has walked through all of this with me, shoulder-to-shoulder, and moment-by-moment, with neither expectation nor demand?  How much time is left for us?  What can we do with the time we have?      

Maybe someone could throw a birthday party for me so that I can humbly express how much I appreciate all the support and love I've received over the years, and in particular the last six months?  Although it sounded like a great idea, I quickly remembered I can be difficult about details, and if someone did volunteer to throw me a party, there would be so many chances for them to get it all wrong, you know?  Maybe they would not pick the music I like, or they wouldn't get the right food, or wouldn't invite everyone I wanted there (or worse, would invite those I didn't want to celebrate with). And I repeat: I am difficult.  I am exacting.  And I can get very picky about details. And who wants to provoke a pissy 50 year old gay perfectionist, who has been newly diagnosed with HIV and who hasn't had a drink in 10 years?  I can't put anyone through THAT.... Yes, it became quite clear I had to throw this party for myself. 

Yet... it always seemed strange to me when people throw parties for themselves. My therapist (who has officially earned a special place in heaven for listening to my inner angst for more than 15 years ...) suggested that it would be good to celebrate both my birthday and my triumph over recent health challenges. She said it was a positive expression of self-love, and personal growth. In other words, she gave me a green light.

Yet, I worried how this might appear, so I confided to my best friend that I was afraid it would seem self-indulgent.  His reply?  "Charlie, these are your closest friends and family - they KNOW you - they EXPECT you to be self-indulgent.  It would be disconcerting to them if you were not..."  I have to admit, he's right about that. So, eager to avoid disappointing anyone, I started planning the most self-indulgent celebration of mid-life imaginable. 

"Mrs. Dalloway said she would pick up the flowers herself..."  And like Clarissa, I would do this myself.  But not just the flowers -- I would do it ALL myself.  Throw myself a a big (sober) birthday and anniversary bash.  This was important. 

I began looking at venues and menus, flowers and photographers, music options, and lists of people I wanted to invite.  After much deliberation, I decided to have my party in the penthouse suite of a nearby boutique hotel in midtown with outdoor space and a spectacular view. I planned the event timing so that the sun would set exactly half way through the evening, providing a spectacular sunset. I thought about what i should wear, and decided that even if the catheter were removed, i wouldn't do short sleeves, because of the scar and atrophy to my bicep. But despite my prolonged recovery, I would probably look great in the pictures due to a 20 pound weight loss caused by the intravenous antibiotics. Hooray!

I arranged for penthouse suites for me and my partner, and for my family from Boston. I decided I did not want presents, so created the event as a "Phlanthro-party" and suggested that in lieu of gifts, guests could donate to one or all of my three favorite charities: Stonewall Community Foundation, my late sister's Breast Cancer Awareness Fund, and/or GMHC.  

For the next month or two, there was unending drama about everything to do with this party. And with only days remaining, I got the good news that the catheter would be removed from my arm. I was very happy indeed!  That was the best birthday present ever! 

We were ready to go.  But in the days preceding the event, my partner inexplicably pulled away.  He didn't recognize or articulate what was going on with him right away. As it turned out, he was pretty nervous -- understandably so. It was the first time he would be meeting my family and friends - More than 50 of them at once, in one compact three-hour block (including all the funny-accented Boston Irish Catholics!). The poor guy was overwhelmed. I thank God that I had the good sense to focus on his needs that day. The lesson was clear:  take better care of this wonderful and precious person, this is hard for him too!

It was overwhelming. I had invited 50-60 family, friends, teachers, colleagues, classmates, mentors, and allies.  And I was trying to write remarks that sounded both sincere, loving, and witty, but it kept sounding like an awards acceptance speech. Yuck.

I realized that part of the difficulty in addressing this group of disparate individuals, was because up until this moment, my life was extremely fragmented. There were many different compartments where I kept people  I'm sure lots of people experience this. I presented a different "self" to family than I did with friends.  A different face for colleagues than for gym buddies. The only thing most of the people had in common in that room was...well, me.  The opportunity before me was to integrate. To claim all of it, to be all of it, to show all of it - every facet of me. Boston, Irish, Catholic, first generation American, City College graduate, Red Sox fan, sensitive, funny, clean & sober, HIV+, athletic, sentimental, musical, gay and proud, hopeful, and always grateful. And because i am in a place where i am learning to be accepting of self and grateful for all the relationships and roles, I am in a place where i can let my guard down and allow these worlds to collide.  And in doing so, I threw a great party.

Despite a few logistical glitches, the evening was terrific. It was truly overwhelming for me to see and hear such expressions of love and caring.  And so touching to see all of my "significant others" meeting my "other significant others."  Some had only heard of each other until now.  It was infinitely amusing to watch my therapist meet guests, and see the wave of recognition wash over her as it registered that she already knew a lot about these people even though she'd never met them. Priceless.  Also loved watching several ex-boyfriends of mine whispering conspiratorially, and then erupting into laughter about some idiosyncrasy about me or horrible habit I've never let go of. I truly enjoyed having those closest to me roast me mercilessly. 


And beaming with pride, I watched my beautiful nieces glide through the room with an astonishing poise and grace beyond their years, sharing stories about their enigmatic Uncle Charlie. My siblings (including my twin sister who was also turning 50) were reunited at this event, and that meant so much to me. At one point, we all donned Red Sox baseball caps in tribute to our Boston heritage, and shouted down the New York Yankee fans in the room. Representatives from my three favorite charities spoke briefly about what they do and why these causes were important to me and important to support. It was a sublime celebration.

And when the lights went down, and the Sally O'Mally ("I'm 50!") cake appeared, I looked up to see all of the people I love most in the world singing to me.  And although it sounds cliche, I felt the presence of departed family and friends: my parents, my sister, all those I had lost to HIV in the early days. I was holding it together pretty well up until now, but as the cake came to a stop in front of me, I glanced up and crumbled at the sight of my partner's beautiful face aglow in the golden light of the candles.  We made it.  We're here.  This is love.

HIV First Year: In Sickness & In Health

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HIV adds a layer of complication to many things...like other health issues.  There are new rules about ... everything.  And learning the rules is a slow process. 

I have had back problems all of my life.  The nuns attributed it to my bad posture.  My therapist attributed it to a childhood trauma (most likely inflicted by the nuns...).  My father attributed it to "badness."  My mother attributed it to my father's poor gene pool. There are undoubtedly other ways to speculate about the origin of my back pain, but all I was ever sure of, was that it always hurt like a sonovabitch,

Through the years, I tried everything: Physical therapy, sports medicine, ice followed by heat, massage, acupuncture, apple martinis, energy work, swimming, hydro-therapy, muscle relaxants, back braces, posture-pedic mattresses, and Medrol Oral Pac (a corticosteroid hormone). It got extremely bad last summer, and I resorted to corticosteroid shots directly into my spine -- a sweet mixture of extreme agony, followed by bliss.

I want to describe my "first time" experiencing corticosteroid shots. I was lying face down on a table, with a monitor in front of me. I believe the doctor did about four of these every hour, so he was always rushed.  He said, "Charlie we're going to inject you using this very long and very scary looking needle. Ok? Relax."  I glanced at the monitor which revealed the needle had already penetrated my numbed skin. As nervous as I was this was fine - great! I didn't feel a thing. I was so relieved that this appeared to be a seemingly painless process! 

Then the doctor said, "Now here's where it is going to hurt really, really, bad as we get closer to the vertebrae and the nerves causing your sciatica, but that's your sweet spot!" I suppress an urge to giggle and simply nod.  He continues, "Ok?  So just relax. Relax and bear down.  And hold...and relax. It will hurt terribly, but relax.  Relax. DON'T MOVE!" 

Within seconds, I am wincing, my eyes crossed, and tears welling up by the blinding pain of the needle approaching a network of nerves in my spine. I am freaked. But suddenly, I feel a welcome wave of relief as I speculate that I must have surely already endured the worst of it.

Boy was I wrong. He continues and I realize that the last spike of sharp pain was nothing. In fact, it was dwarfed by a new surge of blistering pain (I can almost hear the high pitched panic stricken voice of Madeline Khan because "the pain is ... like FLAMES!"). He continues in his calm, monotone voice, "ok, we are injecting this hormone right in there between L4 and L5....good.  Ok, we have to go deeper, ok? You are going to feel better soon, but first you will feel sharp painful stabbing pains.  Just bear down and relax" 

I feel like i could use a Lamaze coach at this point, but i am far too terrified for clever quips, and who would understand anything I say anyway with the way i am biting into the pillow? He says "Ok, Mr. Finlay, can you stand up and walk for me?"

I mumble under my breath, "probably not, Doctor Mengele." But then, suddenly I am vertical, and I'm like "HEY How am I doing?  WHAT back problem?  I don't have a BACK problem..." I feel like I can cartwheel home (I make a note to dig out my tap shoes...). But I will soon learn this is a short-lived way to deal with back pain.  The pain returns, and I continue to get shots (which, after my third visit my doctor tells me they "can be very dangerous"). 

By late fall, I have a brand new health issue (HIV) that takes center stage and I concentrate on getting that stabilized. During this time, I am trying to build my consulting practice, and am working on an assignment for a major organization, but am shuffling a bit as walking becomes difficult. I am attending Physical Therapy, but need to take cabs door-to-door because i have such difficulty walking. Then, while spending New Year's Eve in Miami with one of my besties from my Boston days, I discover I can walk less than one block. On the return flight to NY, it worsens. At some during flight, the sharp pains subside, and I am left completely numb.The airline assists by deplaning me with a wheelchair, and a big burly airline escort retrieves my luggage, and puts me in a taxi. I was a bit embarrassed because of my compromised mobility (and fragile male ego), so, i stared him down a bit finding solace with the secret knowledge that I could most definitely bench press more than this dude. Mos def. I just can't seem to walk. But I can bench like a sonovabitch. 

I concede to the last resort: surgery. I find a doctor who says I need a "Laminectomy" which doesn't require an overnight stay.  While it sounds like a cosmetic dentistry procedure, I learn that it involves whittling down the area of my vertebrae or disc that is touching the nerve, and scooping out any debris. I do a lot of research on this doctor, and discover he worked on a celebrity I like, so we move ahead. The surgery was in February.  We thought it was a success.  I went back to the gym, and to my physical therapy. 

By mid March, my back starts swelling up and turning purple. I can't really see it, but it feels sore-ish. My boyfriend sees something is wrong, and I start getting a high fever. I thought, what now a flu? I went to the ER per my doctor's request, and it was confirmed that I had a staph infection, and likely got it during the first surgery.  And it may have been complicated by my compromised immune system. Although the surgery was a success, and my wound was healing, there was this awful thing happening under the skin destroying tissues, and deemed a new surgical emergency.

I had an extended stay in the hospital, and was very sick. The second surgery changed my very small scar into a very big scar as they needed to excise the purplish tissue - they called it "necrosis" (um...gross!). I was told if it had gone untreated, I might have died. 

I was angry.  I was angry with the doctor who did the first surgery and allowed this to happen, angry I had to cancel two March trips -- a Florida trip with my friends, and a DC trip with my boyfriend.  And I was angry that this was happening only a month before my 50th Birthday -- I had been planning a very self-indulgent celebration and this was a very inconvenient development!  Just weeks ago, my biggest problem was whittling down an invitation list, and finding the right photographer, music, and cake designer!

How quickly all those trivial pursuits changed.  I was now dressed in an ill-fitting, decidedly untailored and egregiously unflattering hospital gown, lying on my back arguing with the nurses who couldn't get me the proper HIV meds, because they "must be new because we never heard of them..."  My boyfriend (who continues to be irresistibly heroic through all of this) brought me my HIV medications (and Aveda products) from home.  My hero! 

Once stabilized after surgery, the next three or four days brought a series of dozens of IV bruises on my arms and and hands (so many, that I started naming them). And I was given a catheter in my left bicep (oh no! that was my better one!). I thought the catheter meant that they had given up on trying the IV thing.  But it was for AFTERCARE. Yikes! I was sent home with this tube coming out of my left bicep, and a 30 day order of antibiotic IV that I needed to administer each night for 30 minutes via the catheter (I know... right?A visiting nurse came to my apartment to clean the mechanism and replace the tubes weekly.  During the course of the month, layer after layer of my skin flaked off, and I lost 20+ pounds.  I noticed that I was deeply depressed (I was chipper in the hospital because they were feeding me pain medication every four hours, but now I realize I am in withdrawal -- damn!).  So, I have now been reduced to a flaking, strung out, newly diagnosed, and very sad person with an atrophying left bicep. I wanted to jump out the window. Recovery continues but is slow.  And seldom pretty.

In the past few months, I've gotten every little cold and flu.  Then I got strep throat/bronchitis. Complications arose when the antibiotics I got from my doctor caused my Achilles tendons to weaken (whaaaa...?), and I began shuffling again. I seriously doubt I will ever have a proper lower body workout again (but my upper body remains freakishly strong thank heavens).

Moral of the story?  Not sure there is one. It just sucked.  But, I did learn a lot from this experience.  Simply put, HIV complicates things. Not in an onerous or impossible way, I can deal with it.  I just have a set of "New Rules" with which i must comply, although I am not entirely familiar with what they are (and they are not quite as amusing as Bill Maher's New Rules).  But here's what I now know:

"Charlie's New Rules of HIV"

  • I need to be very careful and try to prevent exposure to germs and other viruses.
  • Staph is rampant in hospitals and gyms, and I need to be more cognizant of my health. 
  • I have to listen to my body when I am not feeling well (mind-body connection). 
  • I must monitor my viral load, cholesterol, and other blood test data with my doctor. 
  • My freakish work ethic needs to be modulated (I often forget to eat, or don't get enough sleep when engaged in a big project). 
  • I need to work hard on better work/life balance, eating right, getting sufficient rest keeping up my mood.

It's a lot, but I can do it.  I must do it -- because the alternative is horrifying.  And I am grateful for this horribly painful lesson.

Next time, I will recount one of the most self-indulgent events of the year -- my big 50 Birthday!   It starts out kind of Miss Dalloway-esque... but (SPOILER ALERT) ends in a better place, thank heavens.. 

 

HIV and Memories of the Epidemic: The Way We Were

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The other day, I had a rush of memories remembering how HIV and AIDS affected us in the beginning of the epidemic.  I grew sad thinking about all those we lost.  My peers and I were all at the beginning of our adult lives, and quickly had to reconcile the fact that many of our lives could be cut short. That customary feeling of youthful invulnerability did not apply to us. We were acutely aware of how vulnerable we were..       

It was strange to suddenly realize how I had pushed my feelings down as a way to deal with the overwhelming, almost daily grief we endured in the early days.  One would think twenty-five and thirty year-old memories would be the faded, misty-water-color variety.  Instead, my memories are vivid, surprising accessible, and always overwhelming.  Those I knew who first succumbed to AIDS were acquaintances or friends of friends.  But soon, the the phantom virus was moving closer to me: ex-boyfriends, roommates, and closer friends.    

I had an unbearable memory of my best friend Tom lying helplessly on his couch, having difficulty breathing on a hot and humid summer day in Boston in the early 1990s.  His partner Philip had called and suggested I come by as soon as possible to say goodbye. I was shocked, as I had seen Tom a few weeks prior and he seemed to be rebounding.  I walked into their living room and saw my best friend losing his fight with AIDS. 

Once a strapping young man and work out buddy, he had lost so much weight.  Tom kept insisting that it was cold... so cold.  The memories are cinematic -- it's like I am watching a movie - every excruciating detail captured in close ups.  I didn't know what to say or do, but I had decided I would not let him see me cry.  I avoided looking directly at the catheter in his chest, or IV pole, or the oxygen tubes and tank.  His mother lingered in the kitchen for a bit with Philip, giving me some time to talk with Tom.  We discussed the weather, theater, music, and who was dating who.  This was our normal, routine; catching-up-with-each-other kind of conversation, and I struggled to keep it normal.  But it was far from normal.  After an hour or so, he grew weary, and his voice got softer.  He was talking with his eyes closed, and his breathing remained labored. I was on the floor in front to the couch where he was laying.  I could see he was spent, and I was still unsure of what to say or do...so I awkwardly leaned over the tubes and equipment to kiss him on the forehead. "I'll see you soon, Tom, I love you."  

He shifted uncomfortably, and replied with his eyes shut, "I love you too, Charlie, thanks for stopping by."  Philip saw me to the door with a blank and helpless expression in his eyes.It was happening.  Tom was slipping away.  Not a damn thing we could do about it.  

As I left their apartment, I immediately crumbled.  My knees went weak.  My eyes welled up with tears, and a primal groan rose from the depths of my gut, building until it shook my spirit.  It was a perfect vocal articulation of indescribable and agonizing grief -- and a sound that had never escaped my throat before.  

Oh God, we didn't know how to say goodbye to our friends!   We were in our twenties and early thirties - how could we know what to say?  I should have told him how angry I was because of all of the crap he had to deal with.  I should have asked what I could do for him, if anything.  But I just didn't know how to navigate this.  I should have done something --I should have said something. I was ill-equipped to deal with this. 

Tom died hours later.  The phantom virus had crept closer. I felt helpless, and the silent suffering of unspeakable loss.  The world I grew up in had changed forever.  When would the dying end? 

Within months, new and more effective treatments were introduced: protease inhibitors.  I didn't know how they worked, but they worked!  And soon, those with HIV who were on this treatment started living longer, healthier lives. We didn't see the ravages of opportunistic infections.  It was an amazing development.  Of course the drugs had their own side effects and toxicities, but it seemed we had begun to stem the tide of AIDS deaths.  The phantom was being undone by a new pharmacological super hero.  I was ecstatic, but how I wish Tom had hung on just six more months.  I miss my smart, funny, sweet friend.

Flash forward to the present:   I am acutely aware of how fortunate I am to have been diagnosed with HIV in 2012 and not 1992.  My one-pill-a-day regimen has decreased my viral load to undetectable.  There is no reason to believe my life will be considerably shortened as a result of HIV infection.  My partner and I are both doing extremely well tolerating our medications.

This new class of miracle drugs is extremely effective in fighting HIV, but regrettably has also changed the perception of the disease.  Because people no longer see evidence of the illness as they had with HIV opportunistic infections, many believe now that AIDS is over.  Or that it is comparable to diabetes or any other chronic condition controlled by drugs.

I assure you AIDS is not over.  I am a 50 year old man who just tested positive.  A virus is only concerned with replication.  It doesn't care who you are, who you sleep with.  It exists only to makes copies of itself.  We haven't been able to find a way to eradicate it.  Efforts at creating a vaccine have been disappointing, but there are new promising avenues of research emerging.  News of "functional cures" provided hope, but many believe the news could be misleading. 

We must continue to persevere, and to take care of ourselves.  We need to keep the faith that we can beat this thing.  It is my hope that if we all raise our collective will, voices and resources, we can end this in our lifetime. It is achievable if we work together. 

Don't give up the fight -- keep the faith.   

HIV Disclosure: Finding Pride

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Disclosure to my immediate family was a bit more complicated.

I spent the Christmas holidays with my family in Boston.  We are a big Irish Catholic clan, all fun-loving musicians and artists at heart.  We had lost one of our sisters to cancer just months ago, so I had decided not to disclosure my status during this visit.  Instead, I felt a real need to be there, and be cheery.  I had to be the funny gay uncle that my nieces and nephew expect and look forward to seeing.  Do my best to fill the days with music and laughter.  It was extremely difficult.  Hell, it was the performance of a lifetime, but I think it was the right thing to do at the time.

I came back on the Amtrak worried.  Since the day I agreed to the taping for Poz Newly Diagnosed series, there was a constantly growing nervousness in the pit of my stomach.  I had to disclose to my family soon, to prevent them from learning about my HIV from some random jerk who might see my video and forward to them with "Hey!  I didn't know your brother had AIDS!" as a subject line. 

So, I planned another family visit in February.  I rehearsed what I would say.  I would be strong, positive, and direct in delivering the news. I would disclose one-on-one and smiling. And I would quickly add that I am on treatment and healthy. So it went kind of like this:

"No easy way to say this, but to just say it: I contracted HIV -- But there is no reason to be concerned as I am already on a very successful medication regimen which has reduced my viral load, and there is no reason to believe that my life will be shortened because of this."

For the most part, this strategy worked well.  But I soon realized that I needed to leave them alone to process a bit also. There is no denying that there is sadness about all of this. My job was to deliver the news humanely and succinctly, and let go of the results. When I disclosed to my nieces and nephew, I told them to ask me anything they wanted - it was a good opportunity for them to learn a bit more.

The most emotional disclosure for me, however, was my sister in New York who happens to (also) have a very busy life.  I didn't want to do this over the phone, but the only place we could find on our calendars was 20 minutes on a weekday afternoon at the Whole Foods Market in Tribeca.  I had a horrible back problem, but managed to get down there to meet with her.  She was late, and wanted to make up the time by talking while we walked around the store.  I insisted we sit in the café.  It was really crowded.  I began..."There's really no easy way to say this..."

She interrupted, "are you drinking again?  Is it drugs?"  Argh.  Even the best laid plans can go wrong. 

So I just blurt it out, disclosing not only to her, but also the customers in adjacent tables at the café.  "I HAVE HIV."  It was kind of awful.  We had a few minutes to chat and finish our coffees.  It was sad to leave her there in the supermarket after sharing that.  And it was a difficult ride home: my back was killing me, and my heart was heavy.  But they all know now.  Check the family off of the disclosure "to-do" list.

Incidentally, my back got worse and worse.  I had been doing cortisone shots for far too long, and needed a more permanent fix.  So, I had back surgery in February: a very simple procedure called a Laminectomy that I was told would stop the sciatica. It helped!  I will write a separate blog about that experience in the coming weeks...

A few weeks after this simple surgery, I was in front of the camera at the POZ offices.  Nice place, nice people.  God I was nervous.  But being a "list-person," I had prepared a bulleted list of all the points I wanted to hit: 1) No one is immune, 2) the graying of the epidemic, 3) finding a doctor, 4) disclosure, 5) staying positive, and 6) finding support. 

They said I needed to wear makeup, so I got my face punched up a bit at the MAC store in the Flatiron.  Those artists were amazing and I was very grateful that I still looked like a man, and not the first contestant to "sashay away" on the new season of Ru Paul's Drag Race.  I was ready for my close-up, as they say...

A colleague of mine came with me for support as I sat down in front of the lights.  I am so grateful to her.  It had been 14 weeks since diagnosis, and was surprised that I still felt somewhat emotionally vulnerable. I cried a bit, and I think she did, too. 

I hated the video when I first saw it a month later.  The camera adds 50 pounds, I joked. 

But I soon realized the video is not about how I am coming off, or how the suit looks, or why my forehead looks so huge. It's about the message -- and I had that bulleted list on my lap the whole time, and I hit all the points, and they did a great job of editing the interview. 

In the coming weeks, the word was out about my status.  I enjoyed a huge outpouring of support from my professional colleagues, personal friends and acquaintances.  It was quite amazing. 

I am HIV positive.  I am grateful.  I am strong.  I am proud. 

 

 

HIV Disclosure: Finding Courage

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I had agreed to a taping for POZ Newly Diagnosed Web Series in early March.  I was incredibly nervous about how this would come off, but given my work in the field, I had decided that I would be a hypocrite if I were not completely transparent about my status.  I hoped that I would have something to offer that might help someone.  And I had to assume that once it went live on the internet, everyone and anyone could see this thing, and the news would spread. So it was high time to get my ducks in a row, as they say, and plan this thing.

Disclosure of HIV status can be tricky.  As the holidays approached last December, I reached out to my most inner circle of friends - those who were always there for me, and who I was certain only wanted the best for me.  Some of these friends were living with HIV and had been for many years.  This could be a great source of learning for me.  I launched into scheduling a series of lunches and phone calls.  I love a plan.

I was incredibly surprised by the variety of reactions I got, which generally fell into three distinct categories:  Supportive, Confused, and Judgmental.


Here are a few of the supportive responses I received:

1.       * I am here for you.

2.       * I love you.

3.       * Tell me what I can do for you.


Then there were some that I was confused by:

4.      *  I love you no matter what you have.

5.       * That's awful... how did you get it?

6.       * Well, it's good that HIV isn't a "big thing" now.


Then there were some responses that felt judgmental:

7.      *  I can't deal with this. 

8.       * How could you let this happen to you?  You work in HIV...you should know better.

9.      *  It is a deeply emotional topic for me. I don't feel that I can be a resource for you.  I hope you understand.

10.   * I'm not surprised, you're very promiscuous.  Wasn't it just a matter of time?


What I learned from the experience was that each person has their own complex feelings about HIV and disclosure often gives rise to some complicated and surprising emotions.  Just as I had my journey from denial to acceptance, others will have their own.  I needed to stay close to those who were in the first category above (supporters), and seize the opportunity to educate those who responded in the second category (the confused).  And I needed to lovingly (and perhaps temporarily) detach from those of my friends that were struggling with their own moral feelings about this (some of them HIV positive themselves), because I was also still struggling with judging myself.

Next, I would have to find a way to get through the holidays and find an appropriate time to disclose to my immediate family... 

HIV Diagnosis: Uncomfortably Numb

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In the fall of 2012, one of my sexual partners came forward to share he had been diagnosed HIV-positive.  A much younger man, for whom English is his second language, it broke my heart.  Having worked in the HIV field, I knew exactly what to do.  I made sure he was connected to care immediately. And I encouraged him to talk about his feelings and get support for what he was going through.  And I got tested -- as a reflex. Not because I thought I had anything to worry about.  I never dreamed that my test would come back positive. For 30 years, HIV was something that happened to other people. After all, I'd dodged the bullet for this long, I'm sure I would get through this.  

I had been working as a non-profit consultant, and ironically, was engaged in fundraising work for an AIDS service organization. It was then late November 2012.  I had a voice-mail message from my doc asking me to call him.  I went into a private office and called him back.  He was very straightforward.  "I'm sorry to tell you this, Charlie, but your HIV test came back positive."

I paused for a moment, then countered very quickly with "Well, doc, this isn't the first false-positive result I've had...test me again, I'm sure I'm fine..."  He informed me they had sent the sample twice and confirmed that I was indeed HIV-positive.  I went numb.  And fell silent. I couldn't make sense of this.  It was uncomfortable even thinking about it. 

So I decided to go to the gym.  Cliche?  Yes.  Stereotypical?  I guess, but as a gay man, the gym was a comforting place. It was a place I could go to feel powerful, when situations like this made me feel powerless. It was part of my routine.  It was just another day, right?  It was a day like any other.  I was in denial, of course, but it didn't last long.  I could not pretend this wasn't happening. I needed to act quickly.  I made a same-day appointment to see my therapist, and shared the news immediately.with her and one or two close friends. 

Thanksgiving and the holidays loomed before me.  My doc called me at home on Thanksgiving day to check in.  Can you believe that?  That was hard for me to even comprehend.  To have a doctor who is so truly concerned about my physical, mental and spiritual health.  I am so grateful.  I feel fortunate. I set about making a list of things for which I was thankful (in some 12-step anonymous circles, this is referred to as a "gratitude list").  I knew that I could not afford even a moment of self-pity. 

I next talked to my sexual partner to share my diagnosis. It was an incredibly difficult conversation.  He blamed himself for giving it to me.  I was pretty certain I gave it to him.  We went back and forth trying to determine the origin of our infections.  It was an absolutely gut-wrenching and painful conversation to have.  Thankfully, we soon realized that we both just needed to stop this interrogation and the accompanying self-flagellating, and move on to take care of ourselves. Which we did. 

In the coming days, I went to get my blood levels done (T-cells and viral load) and the results suggested a course of medication would be necessary.  I did a lot of research and with my doctor's input, I decided upon a one-pill-a-day treatment regimen. This course of action worked extremely well.  Within a month or two, my viral load was undetectable. My partner is also on the same regimen, and it's working for him, too.  We are now both romantically and sexually exclusive.  We are moving through this together, and are grateful for our health. 

Due to a connection in the field, and my decision to be "out" about my status, I was invited to participate in video series for POZ Magazine's website, featuring newly-diagnosed people sharing their thoughts.  It was difficult to even think about doing this or what I could possibly say that could help anyone, but I committed to the taping date in early March 2013, which was about 14 weeks after my initial diagnosis. And I started getting nervous about it ... 

To blog or not to blog: the journey begins

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When I was first asked to blog for POZ, I resisted.  Blogging is not a natural thing for me. 

As a young man, I kept a journal of my ideas, my big thoughts and dreams -- and my fears.  As a painfully shy and closeted gay teenager, journaling was extremely cathartic as I didn't have a lot of people to talk to about the turmoil within me. It was a private, solitary activity.  Privacy was the critical element which enabled me to express my thoughts and feelings honestly and safely. But it remained difficult to share my thoughts with others.  It was hard to show people what I had written, because it represented who I was: a young man learning that I was suddenly at odds with my faith, my parents' expectations of me, and the dreams I had for myself. It was a time of deep fear, coupled with overwhelming longing to be understood, accepted and loved.  My fear of judgment and persecution and and my shame about being different stifled me. I remained silent and alone with all of it. It was a dark lonely time. 

I eventually disclosed my sexuality to just a few close friends. Not surprisingly, these disclosures were made in long-hand notes which I wrote and carried around for weeks - before finding the courage to present them to those I had decided to trust with my secret.  Eventually I found not only my voice, but a wealth of courage and acceptance. 

In the coming years, I really bloomed. I found a group of supportive friends in the early 1980s that loved and understood me. Then suddenly, like many of my generation, I was exposed to unfathomable grief as I watched my support network being decimated by AIDS.  We did not understand it back then. It was like a supernatural horror story:  a silent, foreboding phantom villain who struck randomly, ominously, and fatally. Homophobia was rampant. Those who got sick were blamed for being ill. It was hard to resist the urge to pull inward again due to fear, stigma and ignorance.  I found strength and was forever changed. 

Flash forward - I am 50 now.  I am at a point in my life where I am happy.  I have good friends and a supportive family.  I've been working in the field of HIV for many years.  We know so much more today about the disease.  But my heroes remain those from the early generation of AIDS activists, who taught us the way to help ourselves is to not be silent, but to stand up and be heard.  Our subsequent and accelerated progress in the gay rights movement owes much to these heroes.  They insisted we not wait for society to decide to grant us equality, but to demand to be treated humanely, and to insist upon nothing less than the same rights and privileges as our heterosexual counterparts. I found new meaning and happiness by dedicating periods of my life to fundraising for AIDS Walks, AIDS service organizations, LGBTQ causes and HIV/AIDS research.

Then about six months ago, I learned I had sero-converted. I was awash with confusion and fear.  And surprisingly, shame.  Shouldn't I have known better?  How could I let this happen?  Unsure of how to process all of these feelings, I did what felt safe: I pulled inward to that dark and lonely place.  The stigma silenced me. And I realized my silence implied shame.

I have decided to not remain silent.  I know that I will find support and relief from others.  I feel compelled to share these feelings openly and honestly to see if my experience can somehow benefit others who may feel alone in all of this.  I remind myself several times daily not to judge myself.  And I remind myself to seek the support that I need and deserve. 

My name is Charlie Finlay.  I am 50 years old and have been recently diagnosed with HIV.  This is my story.  If you have recently been diagnosed, you have your own story and your own journey.  I hope you take comfort in knowing I walk with you, shoulder-to-shoulder. I have decided to share my journey with others in this blog.  I'm not sure where the story goes, but I know that sharing my experience will help me, and it is my hope that it helps you, too.  Let's not be alone in this.  Let's see where this journey takes us.



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