Thoughts about "education" from today's bike-ride

Today was a good ride.  Being in Chicago this week to train, today I did about 25 miles down and up LSD to 71st Street and back.  Surprisingly, I didn't fall today.  Generally, I don't like riding along LSD.  It's a beautiful ride.  I'm just not a fan of dodging path walkers or runners.  But it was better today (on a weekday) than it's been on weekends past.  The sun was out...almost picture perfect...I stopped to watch the NFL Draft set up, and I have a nice sunglass-farmers sun-burn on my face that makes me have racoon eyes.  Neat.  That's attractive.

I'm quickly learning that cycling is like any other form of cardio -- while somewhat boring as you're going through the motions of it, it can be a time to be alone with one's thoughts.  Over the years, I've learned the pros and cons of being alone with my own thoughts.  Lately, for me, it's been a blessing.  Over the past few weeks, I've certainly noticed a change in how I'm thinking and what I'm thinking about.  I've noticed a personal shift of putting my own feelings  in front of others.  The shame and guilt I've been living with over the years has been slowly dissipating.   Don't get me wrong -- it's taken a great deal of time, therapy, family/friend support, and self-realization to get to where I am today - and there's certainly more to do...However, it's been enlightening for me to "come out" from behind and live in front of my truth. 

Lately, I've been thinking - "what's my role and responsibility now?"  I've made this disclosure about me.  Now what?  Over the years, the only thing I could do for others was tell them to educate themselves.  I learned quickly that I can't control what people think, about me -- or this disease,...but what I could do was try and give people the proper information so they can do their own research and make their own informed decisions.

There's a plethora of information out there about this disease, the difference between HIV and AIDS, recent medical advances with PrEP,  and what it all means.   It seems almost impossible to have conversations with people about HIV stigma without people understanding what it all means.  In my last post, I mentioned my medications, T-cell count and undetectable viral load.  Essentially, what this means is the higher the T-cell count is, the better.  Currently, mine is 780.  Everyone has T-cell counts.  T-cells are white blood cells that help eradicate germs, bacteria and infections within the body. What HIV does is enters these cells and then the disease multiplies - eventually killing the cells entirely.  Without these white blood cells, the body is susceptible to opportunistic infections.

Undetectable viral load is, essentially, the outcome of people being compliant with their anti-retroviral medications.  It's a level that measures if a person is more or less likely to transmit the disease.  The lower the number (or a status of undetectable), the better.  Statistically, because I'm undetectable, it reduces the likelihood of transmitting the disease by 96 percent!!!!!  It also provides me to remain at this level if I'm compliant with my medication.

Science and medicine have been on my side enough to make combination drugs -- where a person can take one-pill a day to keep your VL undetectable.   However, no one diagnosis is the same; each person living with this disease has a different version of HIV.  Some are lucky to take one-pill a day.  Others may have to take several pills.  It just depends on other personal health and medical issues that may be present.

HIV Positive and "Undetectable:" What Does It Really Mean?

The newest advance is a daily pill for HIV-Negative people to take in order to prevent infection with the virus that causes it.   It's called "PrEP."  The pill, itself, is called Truvada.  For those living with HIV, this pill is definitely an option for any potential future sero-discordant (magnetic) relationships between one person who is HIV Positive and one who is HIV Negative.   Yes - these relationships DO exist.  There's been pros and cons and a bit of controversy to this advancement - like birth control.  Why wouldn't someone want to take a pill that can prevent them from getting HIV?  In the LGBTQ community, there have been critics saying that this pill now gives gay men a reason to have unprotected sex and lead to riskier behavior.  It does not prevent against other STI's, which - ultimately - unprotected sex with multiple partners can lead to.

Let's be honest though:  HIV is not just a "gay" disease.   It, along with other STI's, does not discriminate.

PrEP - Pre-Exposure Prophylaxis
NY Times article about PrEP

If this isn't enough for one blog post....

Educate yourself.  "It's up to me and you...to prove it"  (Listen below)

It's one thing to thank me for coming forward with this -- let me have the opportunity to thank you!

Emotional Hangover

This week was a whole bag of emotions.  I think there was some part of me that forgot just how many people would read my blog.  I guess I underestimated how many actually did…

I began writing last week’s post on April 14^th in the hopes of posting it ON 4/15…but damn that 20 page final school paper I had to complete.  All the better, though; it gave me a few days to sit back and mull things over and get my story right.

After re-reading what I wrote, it’s easy for me to think of what I didn’t write - The memories and experiences I went through over the past 7 years; the few I nervously shared my story with; the multitude of feelings I encountered (some for the first time).  My brain becomes overwhelmed with all of this.  Perhaps it’s because each memory and experience I went through made me a little stronger without realizing it.

Those who know me well know that I often put other people in front of me and their feelings in front of my own.  When telling my (any) story, I often go to that place where I feel like everyone needs to know the entire story in order to get it.  For one of the first times, I didn’t feel like I needed to tell my entire story.  Words cannot begin to express my gratitude and appreciation for the FB posts, messages, texts, emails, phone calls I’ve received this past week.  Many friends have said “I didn’t know...” or “why didn’t you tell me?” I can understand these expressions being meant as supportive, however, this is my story.  And it’s a difficult story to tell…and re-tell.  I know how this happened to me…but I also know how ahead of this I’ve been.  Believe me when I say there is no greater reminder for me than the pill I take each night before bed.   My T-cells are high (780) and my viral load is undetectable.  This part has been constant throughout the years.  The health side of things is not one I’m worried about.  As I’ve said before, the emotional side is what’s been the uphill battle.  I feel as though, I’ve hit the summit.

While this experience is certainly one that moves me ahead in life, I am thankful I am not going back.  A great friend of mine from NYC recently reminded me of the person I was while not dealing with my truth – a shell of a person – and the evolution of the person I am today.   It wasn’t until I was living in NYC in 2011 that I began to understand how much I pushed away dealing with all of this.  I remember I was newly dating someone.  It was exciting.  It was something/someone I thought was “promising” and wanted so much to happen.  One day, over breakfast, I recall he and I speaking about him moving 4 hours away for his job.  Sad to hear this news, I thought to myself “phew – I don’t have to tell him.  This is my out.  He’s moving so I guess this can be a clean break.”  Later that day, we hung out again.  He spoke the words I strangely dreaded: “I want to try and make this work.”  It was then when I had to confront my demons.  I knew I was risking losing him in this disclosure.  In hindsight, I can’t help but think and feel that it may not have been so much the disclosure that turned things away of something potential - so much as my lack of self-esteem, shame and guilt that I carried.  However, this is my side.  Not his.  I can't imagine what he went through.  (I've often wondered...but it's inconsequential at this point).  It was the first time I felt like I let myself down...and a first time - in a long time - when I felt like I let someone else down.  I realized then that I needed to start dealing with this.  I was at a standstill.       

Going back to 2008, I’ll never forget calling my Dad each one of my siblings to tell them this news.  Each phone call was a different set of nerves for me, a different way to approach disclosure -- as I paced my LA apartment.  It’s funny.  Thinking back, I can remember my French door windows open to my courtyard and how bright the sun appeared on my wood floor.  Surprisingly, each sibling answered my phone call – as if they were almost waiting to hear from me. I can recall wanting to tell them because I didn’t want to mourn this over and over.  I will admit there was some part of me that hoped each phone call would turn into a voicemail. Each one of them was in shock … but told me it would be ok.   One of my brothers said it best:  “Timmy – this could’ve been me.”  And at that moment, I thought to myself:  wow – he gets it.  I don’t have to explain this to him.  

Dad is another story.  He loved me and supported me no matter what I did.  He wouldn’t end a phone call without saying “I love you!” I know he battled his feelings with all of this.  He needed Terri and my Mom and siblings to be his sounding board in battling his emotions with everything about me.  There was so much of him that loved me and other equal parts that worried for and about me.  In so many ways, I see myself in him…and sometimes it’s scary. J

Summer of 2008.  I was in NYC working on a TV show.  I flew to Chicago for the weekend to attend a wedding on Saturday, 7/26.  I hadn’t seen my family since Christmas.  This may have been the longest stretch of time I went without visiting home.  Usually, I flew home every 6-8 weeks.  Thinking back, I remember how busy I was with work…but part of me can’t help but feel as though I was subconsciously avoiding them moreso that I didn’t have to worry anyone.  My brother, Marty, hosted a last minute BBQ on Sunday, 7/27 to gather everyone together before I left back for NYC that evening.  Mom, Dad, and 4 of the 5 siblings and in-laws were there.  I remember feeling as though everyone was being someone cautious around me.  Perhaps it was the opposite – me being cautious around them.  Not much was said about my diagnosis throughout the day, but I could tell there was a collective “sigh of relief” from my family to see that I was healthy and okay.  Dad drives me to the airport.  When I get in his car, I collapse.  Bent over with my head between my knees and crying, I can feel my Dad rubbing my back and telling me “it’s okay.”  The emotions caught up with me.  In the midst of all of this, I forget my wallet back at my brothers.  We turn around.  (Anyone who knows me gets the comedy behind leaving my wallet places. I hate sitting on it!!)  When I get back to my brother’s, my mom and sister are sitting on the stairs leading up to the house – visibly red-faced.  We share a laugh about my wallet and another hug goodbye.  Calmer now, Dad and I talk more en-route to ORD.  We make plans for him to visit me in NYC before I head back to LA in September.  He tells me he’s going golfing with buddies the next day…but he’ll check his calendar and call me to coordinate schedules.  What I didn’t know is that we would lose him that next day – while on his golf-trip.  What I’m grateful for is that time with him.

We all have our own stories, our own issues, our own truths.  Over the years, I’ve learned that courage and bravery come in many forms.  From soldiers in our Armed Forces to our moms & dads, to children fighting cancer…even to Bruce Jenner.  Nothing lasts for long.  We are all brave…we just need to find it within us.

While raising more money for my ride was not my intention with my “coming out,” I’m very proud to announce that – this week, alone – I’ve raised over $1750….bringing my grand total to $6,250.   I cannot thank everyone enough for their love and support.  It means the world to me.  It helps my training to be easier.

Shout outs to all my recent donors will be forthcoming. 

Thank you, again, for reading my story.  You all keep me moving forward – in so many ways! 

April 15th. Death & Taxes.

April 15^th.  Tax Day.  Ben Franklin's words resonate: In this world, nothing can be said to be certain, except death and taxes.

March, 2008.  Working in Pacific Palisades, CA. A phone call to a friend is made – who happens to have recently gone through a scary brush with thyroid cancer.  Staring out to the Pacific Ocean - “What happened?  How did you notice something was wrong?”  “I felt a lump in my neck and knew that something wasn’t right.  I went to see the doctor and got a biopsy.  It was cancer.” She says.

While describing symptoms, one cannot help but personally check for lumps on one’s own neck.  Fingers slide along the left side…around the front.  Adam’s apple.  No – that’s natural.  Then the right side.  “Wait – what is this?  A lump?  Oh shit”  

WebMD lump on neck.  “swollen lymph nodes” and further research deduced “symptoms of HIV.”

        

A few days pass – ignoring something that was clearly self-diagnosed. “Doc.  Hello – I need to schedule a physical.”  A week later:  blood drawn.

        

April 12^th: “Hello.  Dr. Green would like to schedule a follow up visit.  How’s Tuesday, April 15^th – 9am?”

Later that evening:  

-       “Mom –follow up appointment with doctor on 4/15…lump on my neck…blood drawn…WebMD says possibly HIV.”

-       Mom: No. it’s NOT HIV.  It has to be something else. Don’t worry.

-       “What if it is HIV?”

-       Mom: It’s not.  Let’s not even think that way.  I’ll be in San Francisco for work on April 15th.  Call me when you’re out of the doctor’s appointment.  Love you.

April 15, 2008:  Arrive at the doctor’s office.  Beverly Hills.  Doc comes in.  “I’m sorry to be the bearer of bad news…”

The room went quiet.  Deafening.  Shock isn’t even a word that can describe what was felt.  Perhaps “numb” helps to understand.

Depart office.  Underground parking lot.  Sitting in my car.  Crying.  First phone call is to Mom…who leaves her meeting to talk.  No words needed to be said.  The sobbing spoke volumes.  Phone reception in underground parking structure isn't good. 

I leave the parking lot.  Immediately park on the side street.

I call work.  “can’t come back to the office today.”  I make up some excuse. I needed to not deal with anyone else...but me. 

Dormant and pulled over on a Beverly Hills side street for about 60 minutes.  Couldn’t move or drive.  All I could do is talk on the phone, particularly to Mom who couldn’t stop calling me to talk. 

Mom:  "I'll fly down tonight."
Me:  "no.  Why?  So we can both sit here and cry together?  What's the point of that?"

Energy mustered to drive home.  West Hollywood.  Phone calls to all siblings.  And Dad.  Toughest conversations.  The choice to face this head on with family was made quickly.  

Best friend hops on a plane out to LA.  She's there for me.  Seems strange to rely on someone else. Comes with to first doctor's appointment.   Leader in resistance.  Hour long doc meeting.  Reassurance sets in.  I'm in great care.

Later that year, Dad passes away - suddenly.  2008 was, by far, the worst year of life.  It's been a tough rebuild ever since.

Shame and guilt creep in and continue for 7 long years.  Like a drug or an addiction.  Self-esteem hits highs and low… mostly lows, especially when self-disclosure comes in.  Particularly with dating.  The proverbial Scarlet Letter.  People have walked away because of this.  No control over it.  Some have stayed...and walked away later when they've realized they can't handle it.  

 

Healthy.  Always stayed ahead of this, medically.  It’s the emotional part that’s the toughest to catch up with.

Each day is a continuation of the last.  Each day gets a little better.

This disease doesn’t define people.  Stigma does.

What is past is prologue.  

"Something always brings me back to you. It never takes too long...
...one thing I still know is:  You're keeping me down."

I hope this changes soon.