A positive diagnosis of HIV and I’m stripped of my identity. I’m no longer a person but a case, a number to be polled or studied, tracked by a system that doesn’t always have my back – a  system that speaks of double standards and hypocrisy. If called to question we will look over your rights of privacy because those three little letters carry more weight than it really should be – those three little letters that everyone is afraid to say despite not knowing the meaning, yet it’s better to know than not to.

Most people after an HIV diagnosis give up because Society has given up on them. Services, services, services … oh how they draw you in and never encourage you to get off your behind and dream to live another day. Yeah back in the day it was a death sentence but now it’s treated like high blood pressure. A pill a day can take the symptoms away and cause you to be undetectable. But what does that truly mean? A body under attack is fighting hard to keep the virus at bay using the meds to keep everyone I know safe every day. Any action I choose that would normally spread HIV is now something that doesn’t bother me.

But ohhhh that system that we oh so love – yeah – it’s one of hypocrisy and shame that doesn’t care and just looks for someone to blame. This society we live in is a glutton for punishment ESPECIALLY when people act out of fear, like not telling your partner your HIV status is punishable by up to 30 years even with transmission not being possible if you take your meds.

Why is society so quick to judge?

Did you hear me?  Why is society so quick to judge….

The unknown. How can we have so many dumb smart people in the world? We listen to others without doing our own research to know the truth for ourselves. Condemnation is much too swift if you ask the right questions to protect yourself. But why when we’re protecting you too. By our seeking treatment we should be given admiration and respect for protecting those around us, yet we’re ostracized and made fun of and brought before court like we’re villains in a movie because those three little letters that took over our life is now who society thinks we are. A case, a number, something to be followed because now society has stripped me of my rights. 

I am now HIV. But what does that truly mean? 

Get the facts. Know your status. Get tested. Seek treatment.   

Sincerely, 

1 of 8 of someone you know 

iSlay Movement is a researcher in the College of Medicine and a person living with HIV/AIDS. Her pseudonym is used to protect her identity.

By Barbara Joyce-Hawryluk

The phone trembled against my ear. “Can’t breathe…can’t breathe…water…need water.”

“Do as I say, ma’am, and you’ll be okay. Don’t drink anything. Get your prescription bottle, lie on the floor near the front door, and don’t move. Paramedics are on the way. I’ll be with you until they get there.” It was the 9-1-1 operator’s voice — driftwood in a raging sea.

With one tremored swipe, the Cephalosporin bottle was off the counter and in hand as I slid down onto the mat in the front foyer. My lungs, snared in anaphylaxis, sucked wisps of breath through swelling lips while thoughts dove deep through darkness to find a familiar light, one that had prepared me for a moment like this.

It happened more than two decades ago, and while the circumstances were not nearly as dire, it brought my life to a full and unwanted stop.

Antibiotics hadn’t cleared up what was thought to be a bladder infection. Urgency and frequency were sending me to the toilet every 20 minutes, bone and muscle consumed in throbbing ache.

Eventually I ended up in the hospital, sleep deprived half-thoughts winnowing the doctor’s words. “Chronic pain and fatigue. Mental confusion. Interstitial cystitis, fibromyalgia, and irritable bowel disease.”

“This can’t be happening!” My voice, clenched in a fist of denial, struck back after he’d finished shredding my future into useless strips. “I have kids and a job. I’m running my first marathon next month.”

What followed was a stretch of treatment and surgeries including drug therapy via catheter where I received a veterinary medicine used to treat osteoarthritis in horses. That’s right, Secretariat and I shopped the same pharmacy. Eventually, my nightly trysts with the toilet decreased from double to single digits. Still, the restorative NREM and REM sleep had abandoned me, eclipsed by auditory hallucinations looping inside my head like a Son of Sam message, directing me to take my life so my family could get on with theirs. My brain, hijacked by pain and insomnia, was steering me toward the off-ramp until my doctor, reading the signs, insisted I break my no drugs policy. “Just until you get enough sleep to think clearly,” he said.

A friend who’d survived breast cancer offered this – “I know you feel like you and your family have been thrown into a blender. But you’ll get through this and come away better for it.” She was right. Work and running were put on hold, expectations and responsibilities altered, coping strategies researched. Sounds straightforward, right? It wasn’t. Blenders have blades.

Two years later I laced up my running shoes. “One house, that’s all,” I told myself. “And it doesn’t have to be fast or look pretty.” The 60-meter hobble/run took me to the end of my neighbor’s yard where I celebrated a new bar for success. Over time, the effort became less leaden. With one house conquered, I upped the distance to two houses, then three, then four, until a year later I completed a five-kilometer run. There were setbacks. Fibromyalgia is a fickle running mate and short wallowing sessions became part of the training. A decade beyond that I completed my first half-marathon. And then ran three more, giving each of my children a finisher’s medal along with a schmaltzy stay-focused-and-disciplined-and-you-can-do-it spiel.

“Still with me?” It was the 9-1-1 operator. “Paramedics aren’t far away.”

“Yes…I’m here,” I wheezed. Drawing breath was like sucking from a straw with a hole on the side. “How far?”

“I can’t say for sure but not long now.”

Not reassuring. Not when your metric for life expectancy is measured in minutes. I was close to passing out, the foyer in a misty spin, head buzzing like a cage filled with angry flies.

God, how I wanted to run. Pounding pavement, my drug of choice, was calling me as stress hormones coiled like a rattlesnake inside a body fighting for survival. The operator must have read my mind. “I know you’re scared but if you stay still and take slow, shallow breaths along with me, you’ll be all right.”

I nodded as if she could see me. With throat damming up and hungry lungs hoarding precious little oxygen, speech would have to wait. My body shuddered against the hardwood floor. So hot. So cold. So scared.

One breath at a time. Just like one house at a time. Don’t think beyond that. Don’t feel. Cry later.

I heard it first, a wail in the distance. Then I saw it, a white snowbank on the corner of the cul-de-sac bleeding the most exquisite shade of red. Not one, but two ambulances with lights flashing as they rounded the corner. Four rescuers. One wrapping me in a warm blanket while checking the rash across my neck and chest. Another one, holding my quivering arm so her partner could insert an IV line, and a fourth offering reassurance.

“You’re having an allergic reaction to the antibiotics you took earlier. The IV is pushing epinephrine into your bloodstream to get you breathing properly again. The shaking will probably get worse before it gets better. That’s normal and nothing to worry about.”

As medication opened my throat and lungs, it also loosened my tongue, prompting a reflex for unfiltered chatter when I’m anxious or nervous. Crazy-scared had just been washed away with a “kidding — not yet” from the grim reaper, and then cranked-up with a double dose of epinephrine. “I know you from somewhere,” I said to the paramedic holding my hand.

A smile played on his lips. “Well, if this is how you spend your Saturday nights, then maybe we have met before.”

I prattled on, words gushing inside a riptide of tears and laughter. Terror, relief, gratitude — raging and finally ebbing into a slow and quiet pull of one breath deeply into my lungs. And then another. And then another.

“Thank you,” I whispered.

Barbara Joyce-Hawryluk, MSW, is an award-winning crime fiction and creative non-fiction author. She lives in Winnipeg, Manitoba, Canada with her husband, a psychologist, and their yellow Labrador retriever. When she’s not writing or reading, she can be found running with her children and grandchildren and challenging herself in distance races.

By Michael Riordan

Sometimes things happen at just the right time. Serendipity? A blessing? It doesn’t matter what we call it. When it happens, we don’t care if it is a coincidence or a godsend. M. Scott Peck’s book, The Road Less Traveled, came to me in the mid-1980s. I was burdened with self-doubt and indecision about numerous personal and professional matters. Peck’s book somehow called to me from a bookstore display, loudly enough for me to stop and grab a copy. It became a much-needed roadmap for the rocky road I was on–and for other roads to come.

Peck, a psychotherapist, had borrowed a phrase from Robert Frost’s famous poem, The Road Not Taken. The title of Peck’s book suggests that when we confront a fork in the road, our choice can make “all the difference.” Peck reminds us that life’s journey seldom presents only one crossroad. So, when my wife Stella was diagnosed with breast cancer years after I read the book, I would call on Peck’s bestseller as if it were a wise old friend. But not at first.

In the beginning, Stella’s cancer diagnosis was full of fear, confusion and my clumsy gestures of comfort. My wife needed me, but I was too stunned to know what best to do. I was too overwhelmed to recognize our situation as yet another crossroad. I felt panicked and out of my depth. How do we live now? Stella asked me, but I didn’t know what to tell her. 

Things changed. It started with doctors and nurses who calmed us with their wisdom and skill. Then someone called to tell us about a friend of a friend. Then somebody sent an article about some herbal remedy. People recommended a support group, a yoga or meditation class, an article they had read. Some, also ill, shared the burden. They offered advice and told their stories.  Friends and family reached out to soothe the wound. These were caresses of humanity that seemed to give us our lives back in small, soothing doses. 

And then I remembered Peck’s book, and it all made sense. I returned to its instructive pages and have kept the book close-by ever since. 

#

“Life is difficult.” Peck proclaims bluntly in the first line of the book.

Our difficult lives require bold responses. The author claims that we need to develop some fundamental coping skills. Among them: exercising personal discipline, taking responsibility, and deferring gratification. According to Peck, these are essential competencies to learn and strengthen. We will need these attributes all our lives.

Then the author introduces a subject that at first seems out of place in a “self-help” book. It is the importance of love, which Peck defines as “the will to extend oneself for the purpose of nurturing one’s own or another’s spiritual growth” [Peck, M. Scott (1992), The Road Less Traveled: A New Psychology of Love, Traditional Values and Spiritual Growth, Arrow Books]. The author asserts that love is both a choice and a deliberate act. Love is a noun, but it also is a verb. We choose love, but then we must make an effort to love. Love is both being and doing. Asserts Peck, “Ultimately, love is everything.”

A sudden health crisis in the family is shocking, often about life and death itself. Because we are never totally prepared for illness, we initially rely on the white-coated people to take over for a time and lead us by the hand. Our trusted medical practitioners provide treatment, advice, and comfort. In due course, however, your loved one will likely be sent home to continue the task of healing without them. Then there is you. Ready or not, you will be a “carer,” perhaps the prime carer. You will wonder–as I did at first–whether you are up to it. 

When someone you love is sick, your “to-do list” will grow long and might include the following: accompanying your loved one to doctors and infusion clinics; buying groceries; picking up kids from school; preparing meals and washing dishes; seeking out ways to keep up morale; researching supplemental treatment and therapies; searching for support groups; creating an action plan; keeping track of medical protocols. Have I mentioned the need to earn money and pay bills? Yes, this is the part about love being an action verb.

 “Doing” is one thing. “Being” is another. At first, you might think you have no proclivity for being a carer. But let’s get this straight: you can change; you can be different. This is exactly the right time. Take heart – when necessary, being different is quite doable. 

Start by being a believer, and not only in the spiritual sense. Be a believer in the one you love and all you might have already accomplished or experienced together. Your wife or husband or partner or brother or sister or parent or child deserves your faith. Be a believer in medicine and science and in yourself. Believe that things can get better, because so often they do. This is love. With love, everything is easier, especially the hardest things. With love, there is hope. Being hopeful is a skill to practice. It is so much more useful than being worried, downcast, and despondent. 

Helping someone get and stay well is a profoundly intimate journey. No matter how you lived your life before your loved one got sick, or how ill-equipped and inept you think you are, you can rise and change the landscape. One day, when you look across it, you will accept and even embrace the view. You may no longer be afraid of what has bent in the undergrowth. You have chosen to help create a place we all desire and need for as long as we live – a place of unconditional commitment and support. You will know this as love.

Michael Riordan, B.A., M.S., is a retired professor of writing and film studies who also co-founded Creative Action Now, a Singapore-based language school. A grateful grandfather of ten, Riordan lives in Arlington, Texas with his wife Mary. Portfolio: https://www.clippings.me/wordsticks

By Kim Anderson

As the elevator doors opened, we barely noticed the huge letters that read CANCER SERVICES. A long day had already followed a long sleepless night. My mind was busy with the necessities of the moment, of making sure my five-year-old son was keeping up with us, that he didn’t have his hands in anything that he wasn’t supposed to, and that he wasn’t looking too frightened. I watched my husband’s face and attempted to comprehend each grimace. I tried to read the nurse’s expressions as if she had all the answers yet been sworn to secrecy.

The mind is a cool grey squishy beast, isn’t it? It can be in so many places at one time while the body does its best just to act normal. My mind found its presence at the house where it worked to find all the items I would need to pack quickly. It made lists of who would need to be called, what schedules would need to be rearranged, if the dishes in the dishwasher were clean or dirty, and whether anyone let the dog out. It was already recalling home and yesterday. It traced back the last few months of the symptoms we may have missed… and weren’t we just having fun in Vegas last week? As my mind spinned and jumped, my body just walked behind the nurse like a horse with blinders on. It just tried to keep up without looking into the other rooms with the other grimacing patients. Their stories were not ours. Somehow, we were different.  

The doors opened to our room and my mind began to settle a little. It witnessed familiar surroundings: a bed, a side table, a sink. Then, as always, my eyes continued through the room to the window in search of light. There wasn’t much out there. You could see the top of an adjacent building and a brick wall beyond that. At least I saw trees in the distance but you really had to stretch your neck to see them. I called my son over to look, trying to keep him out of the bed where my husband needed to rest. The nurses came in pairs now: taking vitals, changing pillows, asking questions, giving information, and smiling that comforting smile.

Over the stretch of the next couple of days, we allowed a few people into the room. Their discomfort pulled them to the window too.

“Well, do you at least have good view?”

“No, not really.”

Air out.  Silence in.  The waiting without answers.  

The nurses didn’t give the tone of the room or air nearly as much weight. They bounced in and out with much more life. Finally, the doctors, with over-the-moon enthusiasm, announced that results of the tests were back. It was treatable. For now, the infection would be a harder battle. 

Oh! Wait. What?

One aid came in and asked if we would like a room with a better view.  

Well, yes!  Of course, who wouldn’t?  

I answered for both of us as the new room was promised a bed for me. I had spent the last four nights sleeping on a window seat and he spent most of his time sleeping anyway. Within five minutes, we moved to the new room, the one with a better view.

We walked down the hall just ten steps and took a right. The door opened to a room twice the size of our last and, boy, what a view! The windows stretched on for at least twenty feet and you could see for miles. It was a stunning view of treetops, church steeples, and cloudy skies. We settled in quickly, then we sat gazing out across it all in silence. Well, I did.  He was once again asleep.

Weeks went on up there in that room and I marveled every evening at the sunset, the geese flying by, and the quiet beauty. At night, we had our own star show. The view got better with the changing of the leaves. I hung every card across the bottom panes of the glass. Sometimes I used the windows to watch the busyness too. If you didn’t look out far enough, then you realized that the same window also overlooked the parking lot and all its constant chaos.  

Months have passed since then, and I am grateful we had a chance to kiss that view goodbye. We came back to our own big windows that look over the trampoline, swing set, scattered toys and into the neighbor’s kitchen window. It has been raining for an eternity. Everything is wet, soaked, and weighted, but…if you look a little harder, in the distance, just above the horizon, you will see the clouds are starting to break, the sun with its radiant beams parting them.  Those clouds do indeed have silver linings and a much better view is imminent. The bell is about to ring.

Kim Anderson is the Operations Manager for the Department of Pathology. She lives in Maumelle with her husband, a daughter, a son, and two dogs. She enjoys baseball and boating.