Acceptance and Love

IMG_0671The mass shooting in Orlando hit me hard. Maybe because I lived near Orlando for thirty years. Maybe because the death of so many in one place horrified me. Maybe because someone with mental health issues purchased an assault weapon days before. Maybe because hatred could be so strong toward people of a particular race, religion, or sexual orientation that it caused so many people to die–people who were simply enjoying a good time together.

Maybe all of the above made me cry for two days afterward anytime I saw media coverage. My heart is heavy and my prayers are for all the victims, survivors, and their loved ones.

Years ago, during the first wave of the AIDs epidemic in this country, I watched as friends and relatives ran away the gay community. Sons and daughters were left to die alone from a disease that had yet to find drugs to fight it. It happened in my own family. My uncle and aunt refused to go to their son’s bedside or to even attend his funeral all because they couldn’t accept him and his choices.

This man, my cousin, did everything he could to prove he wasn’t homosexual. He married twice, the second time Miss America of 1973, Terry Anne Meeuwsen. Both marriages ended, the first one worse than the second. The first wife took their son away and had my cousin sign away his rights of parenthood. But then, my handsome charismatic cousin continued on his path to please his parents and began dating Miss Wisconsin. My aunt and uncle were beside themselves with pleasure. And never were parents prouder than those two at the Christmas wedding several months after she ended her reign as Miss America with another famous Miss America, Phyllis George, at her side. During those years, their mantel was cluttered with photos of their daughter-in-law  with President Nixon and other dignitaries. Stories of the amount of clothes they brought when they came for visits sprinkled all their conversations when asked “How is Tom?” I found an article today in the Ocala Star Banner, giving a nod to the pride they felt. Click here to see.

When the second marriage ended, Tom moved to California. And that’s when the disconnect came. Stories of his lymph node cancer came in pieces from them, but still they didn’t go to his side. “He’s recovering now,” came the reply to my inquiries. 

And then the recovery ended with his death in 1992. His partner called asking them to attend the memorial service. They refused despite their ability to very well afford a trip from Florida to California. The partner sent them a poem about Tom. I never saw it until after my uncle died, and my aunt presented it to me. She asked me to take it and keep it safe. She couldn’t look at it, but she didn’t want it destroyed either.

So sad. And now thirty years after my cousin’s death we are living in a world where acceptance still doesn’t come. Compromise on the issues seems impossible. And a demi-god stands at his pulpit screaming more hatred and division. 

As an author, I eventually wrote about my cousin in my second novel, A Lethal Legacy. It was with the writing of this novel that I finally understood what writers meant when they said, “being in the flow” of a piece of writing. As I wrote the death scene, I closed my eyes and tears streamed down my face. My fingers flew across the keyboard without my knowledge. I was lost in the writing. Twenty years later, I still seek those moments of the “flow.” 

I have no solutions except to practice kindness and acceptance in my life and urge others to do the same. Love must conquer hate.

LL_PBOOK005From A Lethal Legacy – The narrator Ed tells Gary’s parents about his condition.

“Ed, what are you doing out in this weather?” Claire said when she opened the door in the garage to let me in. “I thought you were at the beach,” she said as I came into the kitchen.

“Ed, I was just going to have a beer. Want one?” Philip asked, as he stood with the refrigerator door open.

“Sure, Philip, that’d be great,” I said as I hugged Claire.

“Can’t sit on the porch, now can we,” Claire said as she motioned me toward the living room.

“How come you came back early? I thought Marge said you’d be gone all this week. Was it the Gulf or Atlantic this time?” Claire asked.

“Neither, although I did stop at St. George on the way home,” I said.

“Your mother is getting more and more forgetful, Ed.” This remark came from Philip.

“On the way home from where?” Claire asked.

“Mom got it right this time, Philip. I mean, that’s what I told her. I was in New Orleans. Gary called last week and asked me to visit him. And he asked me to come home and tell you something.”

“You went to New Orleans? To see Gary?” Claire seemed surprised but not upset. “Did you see Kristina, too?”

“Yes, I saw them both. Claire, Philip.” They both looked at me expectantly. “Gary’s sick, very sick.”

Silence met my words, except for the storm raging outside the sliding glass doors. The rain began slashing against the windows.

“Sick?” Claire echoed my words after a moment.

“He wants me to bring the both of you back to New Orleans. We need to leave first thing in the morning.”

“What is it? Cancer?” Philip asked.

“AIDs,” I said without emotion.

“AIDs? That’s that gay disease. It’s killing all those homosexuals. Is that it, Ed? Is that the one?” Claire’s voice rose several octaves as she sat forward on her chair.

“There’s no cure, if that’s what you mean. Claire, I’m so sorry to have to tell you this, but Gary doesn’t have very much longer.” I said this as gently as I could.

“God damn it!” The outburst came from Philip. The storm moved inside. “He’s a queer, isn’t he? I always knew it. A pansy, Claire, that’s what you raised. Couldn’t even satisfy his wives, queer all along.” Philip finished his beer in one gulp.

“Shut up, Philip, just shut up.” I stood up and went over to his chair with tears streaming down my face. “Don’t you do this to Claire or to Gary. I swear I’ll kill you if you don’t shut up.”

Years of frustration with this man, who had nearly destroyed Gary’s life and now in his death wanted to strip him of his last shred of dignity, came bubbling forth from deep inside me. Philip rose from his chair, and we faced each other nearly nose to nose.

“Stop, both of you,” Claire said. “Ed, sit down, you too, Philip, and shut up. Now our son is dying, nothing else matters. Ed, when do we leave tomorrow?”

“I’d like to leave as early in the morning as possible, Claire,” I managed once I sat back down. “I need to go over to the apartment and check on Mom and Aunt Susan. I have to tell them, too. Then I need a good night’s rest, and so do the both of you.” I looked over at Philip who sat with his head in his hands. “I’ll come by around five to pick you up. That should get us to Gary’s by five or six in the evening. OK?”

“Should I call him?” Claire asked in a wounded little voice.

“It might be better to let him get his strength back. His roommate told me that the doctor started some new meds yesterday, and he seemed to even want something to eat last night.”

“His roommate.” Philip made a snorting sound.

“I mean it, Philip, if you say one more word,” I turned toward my uncle.

“Philip, that’s it, I’m warning you, too. One more word, and I walk out that door forever,” Claire said.

When I left, I was still angry with Philip. I realized I blamed Philip for Gary’s situation, for the fact that Gary had AIDs and lay dying while Philip sat in his easy chair drinking beer with his white shoes and striped blue seersucker pants. He disgusted me.

I didn’t blame Philip for Gary’s homosexuality. I believed that kind of thing is already predestined at birth or earlier. No, I blamed Philip for giving Gary the sense that he was inadequate, the sense that Gary was always lacking in some way. It was that sense of failure, of never measuring up, that left Gary searching and wanting and seeking out lovers at any opportunity. Gary never shared the details, but he told me enough for me to know that most of his adult life he led a promiscuous gay life. Only in the last year or so with Rick had he settled down to one partner. It was those multiple partners that caused his mortality to be reached long before its time. And for all of those reasons I raged at Philip in my mind as I drove to my mother’s apartment.

Gary went so far as to marry Miss America in an attempt to win his father’s approval. Probably for the few moments of his lifetime while he was in the limelight with Elizabeth, he earned his father’s superficial acceptance, but at what cost and for what reasons?

June 15 and 16 – Click here to download A Lethal Legacy for free on Amazon.

Time to Come Clean

I’m a writer in all that I do, but for the past year I’ve hidden from exposing myself too much. Now that it’s all over, I find it’s time to speak out and lend my voice to something that’s affecting baby boomers in larger numbers every year.

It’s the silent disease, and after AIDS, it’s the most shameful disease of all because of its association with drug addicts, even today.  I discovered the stigma as I began my journey for treatment of Hepatitis C in 2013. There may be some headway, if this commercial from HepcHope.com that’s playing frequently on the airwaves is any indication.

My journey began in 1975, and I was twenty-one years old. I was in my second year of college paid for with scholarships and student loans. I worked full time and took a full load of classes. I didn’t have health insurance, and I didn’t have the financial support of parents. I developed a pimple at the base of my spine that grew and grew, filling with liquid until it was hot to the touch with a size somewhere between a golf and tennis ball. Finally, when I couldn’t sit any longer, my roommate took me to the emergency room where I was immediately admitted and prepped for surgery for the removal of an abscessed and infected pilonidal cyst.

My brother and mother came to the hospital as I went under the knife to puncture and drain the cyst. I lost lots of blood and my brother and mother were asked to give blood, but they weren’t my blood type. I was given a blood transfusion with blood from the local bank. At that time, anyone could go to a blood bank and give blood in return for $10. Anyone meaning mostly drug addicts in need of a quick few bucks. It wasn’t until the 1990s that blood was screened to prevent injecting someone with HIV or hepatitis or some other blood-borne disease.

I recovered from my surgery and the cyst never made another appearance. I lived my life unaware that on that day in a hospital in Lansing, Michigan, a doctor introduced an unnamed virus into my blood.

In 2008, after a routine full-blood work up, I was diagnosed with Hepatitis C, which is transmitted through the blood, most often through needle sharing and blood transfusions. Health care practitioners, prior to the development of safety standards, are also susceptible. But unfortunately, the stigma of drug addict still follows the victims of this disease that affects the liver and untreated can lead to liver cancer or cirrhosis. Hep C can also lie dormant and undetected for decades as it did in my case.

My doctor determined after a liver biopsy that I was in a safe category to wait five years or so until the treatment for Hep C improved. So I lived my life and forgot most of the time I had the virus. I imagined myself in the very tiny percentage of folks who have it disappear for no discernible reason. My doctors never told me this–I surmised it from my reading and my ability to live in denial.

By 2013, I could no longer live in denial. The Hep C virus, while silent, caused another complication called cryoglobulins, a bad protein produced by the liver that essentially causes the blood to pool and can attack the body anywhere at anytime. Mine attacked the nerves in my legs and in my left arm. It took several months to be diagnosed and for the Hep C to be called the culprit. In that time, the cryo destroyed two major nerves in both legs and one in my left arm. My feet are numb most of the time and are ice cold to the touch. I have no feeling in my little left finger and a permanent weakness exists in my left hand. Before it could go any further in my body and destroy an organ, I began the grueling treatment for Hepatitis C.

The treatment had improved in its effectiveness, but it was still a horrendous seven-month process. My doctors gave me a 75 percent chance for killing the Hep C virus, and a 60 percent chance of abating the cryoglobulins. Before I began treatments, a psychiatrist had to declare me strong enough mentally to begin treatments. Major side effects of the three-cocktail drugs all include depression. That over and declared ready to begin, I then had to take a class for administering the pills and shots and understanding all the side effects. The class was taught by a representative from the pharmaceutical company.

“Be careful who you tell about your illness,” he said to begin the four-hour class. “People will judge you if you tell them.”

The week before, during an EMG to test the damage of my nerves, the neurologist running the test said, “So you’ve got Hep C. My uncle died of that. He was a drug addict.”

I ignored him, but he continued as he poked needles in my arm trying to determine the level of nerve damage.

“I worked on the East side of Manhattan, and the only Hep C patients we had were heroin addicts and homosexuals.”

I clinched my teeth and prayed to God for my own set of needles to use on this insensitive doctor, I was trusting to poke and prod my arm.

I found my doctor and her nurse practitioner to be a little brisk with me in our initial meetings. In fact, my husband didn’t like the doctor at all. After one of the first appointments, the nurse looked at me and asked me to promise one thing.

“What?” I asked.

“Promise me you won’t take any new drugs.”

“Of course not; you folks are the ones prescribing my drugs.”

Later my husband and I decided that every one of the professionals we’d seen so far assumed I was a drug addict. I will say as soon as my doctors and nurses realized I never missed an appointment, and I kept to the strict regimen, and I asked intelligent questions about my illness and treatment, their behavior toward me changed. When I told the doctor about the blood transfusion in 1978, which I’d forgotten about until my brother reminded me, she almost leaped for joy at the news and wrote quickly in her notes.

The day the doctor announced that the virus was no longer detectable, we both had tears in our eyes, and I received hugs all around. In two weeks, I go for my final blood work, and if comes back at zero detection, I will be set free. The cryo seems to be at rest for now as well, but I’m still being treated for that.

I feel better having written this post. Why did I write it? I wrote it to make an attempt to do away with the stigma attached to this disease so others don’t have to feel the shame I’ve felt this past year. For months, I’ve kept hidden from everyone, except my closest family and friends, what I had, and why I was receiving “chemo-like” treatments. When asked what I had, I told them it was a rare virus. I even found out a very good friend made up a story for her family about my illness. It all hurt me at a time when I needed support and kindness.

I’ve heard that new drugs are being developed that will be even more effective and less invasive on a person’s body. Toward the end of my treatment, my hair began falling out in handfuls. Today, my hair is the shortest it’s been since I was a toddler, but it’s new hair, and it represents my good health and new appreciation of life.

thorny starfish

thorny starfish