The Long Red Road – A minute of Gratitude

It was 2012 when I was too sick to even get out of my bed. My body constantly ached, my vision was going, and I was scared to death, literally. I saw doctor, after doctor, proud volunteers that looked over all of the different conditions, to no avail.

I was living in a motel, out of work, and poor as dirt. I had no money for doctors; I barely had money enough to pay for the room I was in. Test after test, until it became clear that I was sick with either some form of cancer, or it was AIDS.

I couldn’t find free testing. It may have been that I couldn’t see a computer screen completely, or it may have been my debilitating condition, who knows. I finally got a ride to The Center, in Orlando Florida from my aunt.

In less than 15 minutes I had my answer. I had HIV and I was suffering from AIDS. Not a complete surprise but I felt the world collapse. My partner had HIV too, and I was the one who gave it to him. I put a gun to his head, and pulled the trigger. I was less than anything, and I just knew this was it. It was the end.

Two weeks later, I believe as I just don’t remember the passing of time, a gentle nurse showed up to my door with my confirmatory testing results. She handed me the results and then a tiny little slip of paper with a phone number on it. That was the day my whole life changed. Somehow, some way, help found me. I promptly called the number, was advised to gather some bits of information and to report to the County Health Department.

When I walked in, I was rushed into an office. A lady named Chanel sat down at her desk, collected my information and got to work. She advised me this would not be easy, that I had work ahead of me. I needed to see a Doctor at a place called Comprehensive Health Care. Because I had no transportation she arranged a van to come and get us.

I walked into the office, now not as terrified as I was confused. I had no clue what was going to happen, just that someone was going to look me over, and a process was beginning.

I was assigned a nurse, Jessica. I joked that I had never met Jessica Rabbit in person before, which was totally inappropriate but well received. She was the most lovely, understanding, wonderful woman I had ever met. Her compassion and her dedication were overwhelming. I could do nothing but be in awe of her movements, how she was so thorough. It was awe inspiring.

She left the room for a moment to call the Doctor in. A tall black man walked in. He said his name was Dr. Ronald Cathcart. If Jessica was compassionate and efficient, this man was a God of Doctors. He had no problem putting his hands on me to physic ally diagnose every opportunistic dilemma I had going on. He ordered specialists, further testing, and follow ups. Somehow I felt like family to these new people.

A blood test and urinalysis came next. With the speed of light, the team worked out patient care assistance to get me on a strangely named drug called Stribld. I was put on some antibiotics, antifungal, and he explained the most important advice I have ever been given.

I was going to survive, only if I took these meds exactly as he told me to. “Once a day, every day” he said was the mantra of my life now. I tried to put the fear in a box, now I had this team, this new family. I had to make this man happy, to make Jessica proud.

That was the beginning of the “Long Red Road”.

Fast forward, six years. That mantra, that team, from my case manager Chanel, all the way through eye doctors, and psychologists and psychiatrists, and dermatologists, I have now been “undetectable” for 5 years. I lost the sight from my right eye, but I pressed on. I felt the urge to be a light in this dark place. I wasn’t just HIV positive, I was just POSITIVE. Screw HIV! Not today Satan, you can’t have me! I’m stronger, I’ll show you!

And boy did I. Look at me now! I am here, telling you this story. I didn’t die, I THRIVED.

Jessica moved on to be the Deputy Director of my clinic. I served as the Community Action Board of said clinics Secretary and I started this blog. I wasn’t going to just beat this; I was going to show the world how to beat it.

I spent the last 5 years of my life on disability, thinking I would never be able to work again. The things I loved about my life were just out of reach. Or so I was lead to believe.

Disability ended, and life began again. I chose the hardest path I could imagine; I would once again hold the certification to be a Certified Nursing Assistant. I would do the impossible and get not just my life back, but my whole life back. I wasn’t taken too seriously at first. Just how was I to prove to the world I was capable of caring for others in a skilled nursing environment? I was half blind, and diseased. Who would take me seriously?

It turns out it only had to be me. I worked hard, studied late into the nights, and drank so much coffee that I know I almost became a coffee bean.

I challenged the CNA Board test, and I passed. I PASSED! I was not only healthy, and successful, but in my hot little hand I had that all important certification that proved beyond anyone’s doubts, I was CERTIFIED!

I sent out my resume, with work references that just didn’t exist anymore. I was interviewed, I was like a magician. I moved swiftly, answered all their detailed questions. I impressed them. I now have the job, and not just any job, my dream job! I was what I always wanted to be again!

I write this to you, my lovelies, to encourage you. It took an army of people, probably a half a million dollars, and real hard work. I over came this. I frantically called Jessica, now a sister in love. I had to pour out my gratitude! I called Chanel, she is a miracle worker, and she definitely needed to be thanked. She can check off the box in my care plan that I am a professional now.

I have to thank every one of you, even you who I have never met, who just found me today. THANK YOU and welcome to my little family. It’s a safe place here, we all love you! I love you! Stay here with me, I’ll hold you up, no matter how you came in, when you leave you will be more. That is my dedication to you, that is my promise!

So now, on the Long Red Road we will walk together. I will keep on sharing my life with you, and I hope you share yours with me, and others. It truly takes a village! An army of love. We will overcome this together and as much as I have seen success, I share mine with you.

Thank you for reading this. I hope you will read more, and I know you will be ok.

“Once a day, Every day”, each step “Positive”. Together down the “Long Red Road”.

As always,

In Unconditional Love,

You’re Friend David.

Disclosure – Your Friend David

(Although this story is based on a real situation, the exact details and identifying information have been carefully removed. This story is to raise awareness on a particular situation affecting PLWHIV, and has no base in absolute truth.)

 

He’s been out of work for a while now. It’s been a long battle with AIDS, then the nerve pain, but now it’s the stark reality that his disability checks are ending. He needs income now.

And so he begins to place application after application in. The process is so much different now after the time he spent disabled. They want so much more, and they want it online. It’s a cold process of keywords and no call backs. No one seems to take his situation well.

Then one call comes back. It’s a minimum wage gig but anything is better than nothing. He sets up the interview, and prepares to snag this job. It’s in the bag, he interviews very well.

The interview comes and goes, he is honest about his physical limitations, and that he doesn’t feel that any special accommodation should need to be made, no mention of his HIV status has been asked for, as that is not important in this job. There is zero risk of transmission doing any part of this particular job.

He waits and then gets to on boarding for the job. There is paperwork and more paper work, but then something makes his hair stand up on his neck. They require him to explain his medical condition in depth for the last 7 years. They want to know diagnoses, procedures, hospitalizations. This doesn’t seem right but he needs this job.

He tells the HR representative of his reservations, and it is explained that it is a condition of employment. Reluctantly he submits, and gives them the info. What could it hurt, they have confidence in him and he feels that it should be returned in kind.

 

Two days into working and he is summarily fired. At will. He wonders why and now feels that his disclosure may have had a role in this. He is scared and at a loss. What should he do?

There are laws that protect from this kind of discrimination. The Americans with Disabilities Act protects workers from work place discrimination based on a medical condition, and requires that if an employer hires a person with a known condition, they must accommodate reasonably.

When you are asked about your medical history, if the job doesn’t warrant your disclosure you should politely refuse, and if it is a condition of employment you should ask how your information will be used, stored, and protected. This is a basic right.

Now there may be jobs where the risk of transmission exists and your employer may need to know your status, but that is rare, and in most cases even with a viral load, you are unlikely to expose anyone to it. In my case I want to be a CNA and they will need to know that my viral load is undetectable, and my immune system is back so I won’t be a liability in nursing. But that is sometimes a risky situation, and is expected. If there is no risk in your job, you do not have to disclose. It’s that simple.

Look up your local Center for Independent Living, or ADA representative if you feel discriminated against. Remember that most jobs like this will be “at will” and they have the right then to fire you for no cause whatsoever. They don’t have the right to fire you for a medical condition without reasonable accommodation. You need to report this to the EEOC as well.

Stigma should never be allowed to take anything from you. You have the right to live and to be a functional part of society. Protect that right.

 

In Unconditional Love,

Your Friend David

Morning Musings – Fret not, all is well.

As most of you guys know, I was considered disabled. I won my case a few years back and the check and Medicare were a godsend. I used all of the resources that were offered to me to recover.

I battled my immune system, my body always in pain. I battled my mind, always in the worst places, believing I was worthless. I battled my vision loss and how that made me feel so trapped in a world inside my own head. I dealt with the stigma and the shame.

When the government said they were reviewing my disability I freaked out. If my benefits stopped how was I to pay my bills, or see doctors I needed? Would I end up on the street, homeless again? How would I keep my standard of living that I fought so hard for.

It wasn’t easy to get disability. Many find it impossible, but I had a lot of help. I called a great lawyer and I have a decent case manager who assisted me in compiling the information they needed. I gave up on being able, and I succumbed to the fact I would never be the same again.

HIV, blindness, and bipolar took so much from me. I lost friends, my freedom, my independence. All these damn disorders owe me a debt that almost cant be repaid.

And then on my birthday, I get this big envelope with 15 pages of questions reviewing my disability. I saw my doctors, as I was recommended. They all said “don’t worry, you’ll stay disabled. You will never be better.”

In January, I received the last letter I would receive from Social Security. It said after review, my condition had improved and I was now not disabled. I had three more months of benefits and then no more. I was, to say it bluntly, blown out of my soul.

I have since had to move into a place I am not taken seriously. I live with people who are so much worse off than I am that I have to hide in my dark places so that I don’t feel their misery.

Never ending applications for employment then ensued. I count as of this post over 20 different places I have applied to, and I have had only one response. That is good. I only need one fish to feed me. I don’t eat that much.

Of all places it is McDonalds that seems to be taking me seriously. I have an interview on Monday and I hope that they will see I am totally able now to do anything they need. Hell, I’ll take a cut in the base pay and clean their toilets with a toothbrush if it means a steady paycheck. I am ex-military so I can do anything.

So I put on my smile, that great big beautiful smile, and I press my trousers crisp. I want to look like the sharpest man on the planet. I need this job. I need it to feel worthy, and to feel like I am a productive member of society again.

I do some volunteer work, and I am constantly on here helping people so I always have something joyful to do, but that don’t pay the bills. Money pays the bills, and I need to make some.

I aspire to be recertified as a CNA, and I am working on specializing as much as I can to care for the newly diagnosed HIV patients. I have been there, and I know it takes a lot to stay in care, and to recover. The protocols for success are rigid, but totally worth it.

My viral load has been undetectable for years now, and so I know that I am in no danger of transmitting this virus to anyone else. But to get there took time and patience. It took hard work and love. To be able to type this to you took years of doing things that my doctors laughed at me for.

For instance, video games helped me to strengthen my good eye. Walking up dangerous highways and taking the bus everywhere challenged my fear of the world. I got into some good mental health treatment so my bipolar is managed. My doctor says I am a miracle. I say I am a trooper and a man of steel. I can do anything I put my heart into.

So this morning’s message is, don’t give up. When they say you can’t, and you know you can, then do it. When you feel lonely, there are thousands of lonely people out there, so find one. When you are in need, there are even more then you, who need. Give to them.

Let life pass through the molecular machine that God made you. If you don’t believe in a God, that’s good because nothing I just said above is religious or spiritual. It is the law of life and of living. It’s the sacred law of attraction. Give to the world what you want in return. Prove me wrong!

“Fret not, for it only causes harm.” Put your trust in your higher power and let the work begin. It’s up to you to make your life, so make it joyful. I promise you will reap great rewards.

And in the meantime, I am your friend. I will be here through the ups and the downs. I know you are a beautiful creative force. I’ll believe in you when you can’t believe in yourself.

That’s my job.
Unconditionally loving you,
Your Friend David