0128: Doesn't that Hurt?


"Doesn’t That Hurt?" Jackie Lewis

Let’s break down the question.

“Doesn’t that hurt?” Yes, it hurts. Now you look away awkwardly, unsure of the appropriate response. Maybe a well-intended offering of “I could never do that.” Yes, you could, and you would.

“Doesn’t that hurt?” Sometimes. Now you change the subject, my non-committal response allowing the conversation to shift with ease. We acknowledged the blood, or the holes in my body, and you feel better.

 “Doesn’t that hurt?” No, not really. Now that I uphold my side of the social contract, hiding my truth in order to defend your comfort, you look relieved. “You’re so brave!” No, I’m not.

Once, I tried “Yes, but it doesn’t matter.” Why? “I still have to do it.” This is your least favorite response. It evokes a heavy feeling we go to extreme lengths to avoid. Powerlessness. You can’t carry that. You try to shove the feeling back, attempting to find a solution or at least justification. (See also: “Have you tried…?” or “Did you eat a lot of sugar as a child?”) I don’t blame you.

That sinking, anxious, almost guilty feeling is the unanswered ringing of cognitive dissonance. It’s the endless, fruitless loop of trying to reconcile suffering without cause. I understand. The mind wants reason, order, or at least faith in a higher purpose, but chronic illness is a bottomless chasm of senseless chaos.

My body doesn’t understand. Pain is the body’s warning that something is wrong. It tells us to stop. Every infusion site, injection, lancet, needle and tube in my skin, is physical dissonance. Inflict pain to feel better. It fits in the sick theme of autoimmune disease. My body, in trying to help, hurts itself. I have to carry it.

“You get used to it” or “It gets easier.” These are empty promises to a 12 year old. The burden doesn’t get lighter the longer it’s held and I don’t get stronger either. I find ways to shift the weight but I can’t put it down. During a particularly hard week 14 years later, I wrote that my condition is:

“That feeling of carrying all your grocery bags in one trip, seeing the treadmill tick down the last minutes of an intense workout, being an hour away from your weekend on a Friday afternoon. Except there are no kitchen counters, there is no 0:00, and there is no Saturday.”

I have Type 1 Diabetes. I have an insulin pump and insulin pens. I have a fear of door knobs and drawer pulls (look up insulin pump tubing). I have calloused fingertips. I have scar tissue. I have a shorter life expectancy. I have an aversion to pocketless dresses and being touched on my hips or stomach. I have anxiety. I have depression. I have wondered if death would be easier. I have no idea if I can have children. I have to eat. I have to test. I have to test again. I have to stop eating. I have to count carbs, count bites, count units, count to 5 before pulling the needle out. I have to ask for help. I have to explain. I have to be patient. I have no more strength today.

I have learned how to carry on when there is nothing left. So, I will tell you it hurts only sometimes and we can close that door and move along, isolated. But, if you want to stay, if you don’t mind holding something heavy, ask, “How does it feel?”

Hurt that doesn’t feel futile fuels my future. Sometimes we do what is painful in order to survive. 


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About the art:

After reading Jackie's story, I looked to my book of stones and did some searching on stones with relatable healing properties. Jackie also indicated that she wanted burgundy or blood red incorporated, as those colors represent to her both pain and vitality.

I found Tiger Iron, which not only had some of these colors, but also had significant healing capabilities that reflected some of the issues Jackie shares in her story. So this painting is of a slab of Tiger Iron - this is a stone of strength, stamina, and courage. Tiger Iron is useful for self-healing, especially from chronic illnesses.

It can instill vibrational harmony in the kidneys, lungs, intestines and pancreas. It aids in strengthening the blood and muscles, and reinforces patterns of health, personal power, focused will, mental clarity and groundedness. I then included a quote by Gerda Weissmann Klein which I felt powerfully summed up the essence of Jackie's story.

I hope this piece will bring Jackie continued strength, vitality, and courage in the midst of pain.

~Becca

0123: She was Supposed to Go Home on Monday


Content warning: The following story contains references to someone losing a parent to cancer, which may be triggering for some readers.

"She was Supposed to Go Home on Monday," Nathanial Garrod

As I entered the convalescent hospital for the umpteenth time, I leave the crisp March Friday morning outside and I am welcomed momentarily by the smell of popcorn before the scent of piss mingled aggressively. Putting the popcorn maker near the front of the hospital was a noble effort, but not quite enough. After over a year of treatment, recovery and relapse, my mom has been in the convalescent hospital since Thanksgiving. 

I visit my mom every day. She is insistent that I stay homeschooled, my family finds a middle ground by signing me up at a local high school for ninth grade independent study. So every day, I come to the hospital. I do my work. I spend the afternoon at the library. I go back to my aunt and uncles house. And repeat.

I turned my CD player off as I headed down the hall towards my mom’s room, watching the Tupac CD slowly stop spinning. 

The friendly nurse, Mary, was on shift as I passed the nurses station.

“How’s she doin’?” I asked Mary.
“Why don’t you go in and find out for yourself?” she said.
“You’re answering a question with a question. It must be pretty bad,” I said.

Mary smiled cryptically.    
“Inspiring,” I said sarcastically, while walking away.

When I walk in to my mom’s room, I think about how she has visibly aged several years in the last few days.

“How was breakfast?” I asked.
“It was good…I guess.” She paused. “It was just the usual pancakes. Hey, can you wipe up the syrup that’s dripping off the table? It’s right there on the corner.”

I pulled the table away slowly, and grabbed a napkin. I was looking for the dripping syrup, but couldn’t find it. Strange.

"It’s right there by your hand,” she said her voice showing a little desperation. I looked again, but still did not see it.

Mary walked in.

“Can I talk to you for a minute, kiddo?” She asked me.
“Yeah, sure. What’s up?” 

She motioned for me to follow her as she headed towards the nurses station.

“I’ll be right back mom,” I said, but she was already zoning out. I shook my head and followed the nurse over to her station.
“What’s up?” I repeated.
“She’s been like that since late last night,” she said.
“Like what? Delusional?”
“That’s what the reports say.”
“Is it bad?” I asked.
“That depends on your definition of bad.”
“You know what I mean,” I said. I was getting tired of people skirting the truth. Not that that had really been an issue. More like people being over-honest. I brought myself back to the moment, where the nurse had just finished letting out a big long sigh.

“She probably won’t be alive next month.”
“Oh! I’ve heard that one before!” I exclaimed, a sardonic smile breaking across my face.
“Yeah, but this time it’s serious.”
“Oh? As serious as it was at Thanksgiving? What about Christmas? Valentines day?” I started yelling: “So what is it now? My mother isn’t going to live to see another April Fool’s day? What?”
"Chill out, kiddo,” Mary said in a stern voice.

“Chill out? Chill out? How can you expect me to chill out when I’ve heard people tell me my mother is going to die every month since November?”

“Relax. Just go for a walk.”
“A walk?”
“Yes. A walk.”
“Now?” I questioned.
“Yes, now. Leave”
“Let me tell my mom.”
“Okay,” she said, turning back to her paperwork.

I walked back into my mom’s room. She was sleeping again. I walked over to her side and shook her.

“I’m gonna go for a walk, mom. I’ll be back a little bit later.”
“Okay,” she said.

--

It started raining lightly as I left the hospital. I walked and watched the rain fall. I ended up by the creek, walking along a recently developed paved path. I stared at the creek and thought about how powerful the water was. There was so much of it, and it moved so quickly. The rain fell around me, increasing in steadiness. I kept walking.

An overpass crossed the path. I sat against a rock, rain falling around me but not on me. Bicyclists pass by, but for the first time in my life, I feel truly, completely alone.

Mom was doing worse. It was obvious. The Cancer was getting to her. The Cancer was… The Cancer was taking her.

I stand and run to the railing between the path and the creek.

“WHY?!” I scream into the rain and wind.
“Why?” I mutter to myself, sobbing.

I kept walking, pushing the hospital out of my mind. I put one foot in front of another. I kept moving forward. I find myself, after many steps, at the apartment my mom and I once lived in. I miss it. All it has been for months is storage. I kept walking. One foot moves. Then the other. Repeat. I sit at the mall for a few minutes, or maybe a few hours. Time is a blur. I walk to the library. I try to put the hospital out of my mind, but it is the only thing on my mind.

--

The weekend passes. Saturday is not notable. Sunday, I go to church with my aunt and uncle. Everyone wants to know about mom. We visit the hospital, but my mom is asleep the whole time.

It’s Monday morning. I wake up. I wake up on my own, not with an alarm, or my aunt playing a grating hymn CD at full volume. It is silent, save for the sound of my uncle eating Grape Nuts. I pour my own Grape Nuts. We sit together in silence. My aunt is usually still home at this time.

She is not home. And then…

A key is in the front door lock. The dead-bolt turns. The key moves out. Aunt Catherine is home? I am confused. The key goes into the knob lock, which pops quietly. The door opens. I feel a gust of cold air. This is weird. Weird. She comes over and hugs me. I know what it is. I think. Aunt Catherine kneels by my chair. I know. My Uncle Bob is quiet. I know. I want another bite of cereal. I know.

“Sweetie,” she grabs my hand. “Your mother is dead.”

“I know” is what I say in my head. “Oh,” is what I say out loud. Funny how that always turns out different. She hugs me again. It is a strong hug. Like you would hug someone who lost the only person who raised them, and you are next in line to care.

“Finish your breakfast, and we’ll go down to the hospital.”
Things are moving quickly. I talk to people. Hug people. Move stuff. I am here. I am there. It blurs by. By the end of the day, we have emptied the room of my moms stuff. It seemed like a monumental accomplishment, yet the entire apartment was next. So much stuff.

It is night, and I am alone in my room. My mother is now gone. One by one, the tears start rolling down my face. 

It does not feel like it, but my mother is gone. I turn the light off, and pull my blankets close. The tears still roll down my face. They quantity multiplies, and the speed increases. I will never be able to hug her again. Or talk to her. I will never be able to listen to her advice or lectures again. I can’t argue with her. Or read to her. Or listen to her reading to me. I will never be able to watch a movie with her, or make dinner for her or go on a walk to the library with her. That part of my life is over.

So I cry.
Before I know it, I am asleep.


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About the art:

I was lucky enough to meet Nathaniel a couple years ago in Oregon, and the dude has such a lively personality. It's so heartwarming. We mostly interact on the internet these days, but he's always full of positivity and support, which is in credible for today's pretty cynical culture (myself included).

Nathaniel's story stands out to me a lot because I know I felt a lot of these emotions when I lost my dad to cancer not long ago. So as I read his wonderful narrative, I felt myself aligning perfectly with much of the circumstances he explained.

When it came to making the art, Nathaniel didn't have a direction. So I wanted to make something that was bright, flowy, and had black contrasting letters. The quote comes from the Saul Williams song, "Tao of Now," which is a constant reminder that we don't necessarily lose people when they die. We keep their memories in our lives even after they are gone. The defiance of the statement has always stood out to me and its oddly comforting, so I hope it has the same impact on Nathaniel.

I'm thankful that we had Nathaniel's story to close out our March stories because it's a beautiful narrative for a heartbreaking story, but one that reminds us to keep those we love and lost close to us in both physical form and in memory.

- Craig. 

0122: Nothing More


Content warning: The following story contains references to someone losing a parent to cancer, which may be triggering for some readers.

"Nothing More," Stacy Oliver-Sikorski

I stand in my kitchen, feet bare and hair pulled into a tight ponytail, watching as the timer on the microwave counts down to zero. Warm, sweet air fills my lungs as I pull the oven door open, reaching for the aluminum Bundt pan and placing it on a wire cooling rack. I pace the floor tiles around the granite topped island waiting the requisite ten minutes before inverting the cake pan over the wire rack and saying a silent prayer that the cake will slide out easily.

I learned to bake at my mother’s side, though if I’m being honest, I learned only through the happenstance of being present. I didn’t ask questions or take notes; I barely acknowledged what she was doing as I chattered incessantly to her about school, friends, and books. When I called her in June 2008 to ask what would happen if I substituted lemon juice for all the liquid in a cupcake recipe that I found, she said, “Well, you would have lemon cupcakes. Is that what you want?” It was. 

Weeks later, she called me at work to tell me that her recently developed pain and accompanying limp weren’t the result of a herniated disc as she’d assumed. Instead, it was an effect of lung cancer – small cell carcinoma, specifically -- that was already metastasized to her bones. She told me not to come home for the surgery she was going to have to replace her femur with a titanium rod, that the six-hour drive wasn’t worth it. I went anyway. 

I spent too long deciding whether to tell my supervisor about my mom’s declining health. I was new to my job – we both were, as part of a new housing and residence life program – and I was afraid of being perceived as weak or unwilling to fully commit to my new role. I crumbled and told her only because it became obvious I was going to be making the drive to my mother’s house on a regular basis and would need help managing my on-call responsibilities. And then I had to tell the next four supervisors over the subsequent three years in that same job. Each showed varying levels of empathy and understanding in their responses; only one could be described as kind. I don’t think any were intentionally unkind; they simply didn’t know where to place this emotionally charged situation at a place that was run purely as a business. And because many of them supervised me for short periods of time – weeks or months – there was no inherent relationship or trust. Balance wasn’t a concept I could pursue or adequately advocate for at a time when I most needed it and so I settled for living askew.

It was a hard place to work, a place where few people assumed positive intent and often worked strategically against each other rather than toward a common goal. Being new and unused to such a divisive work environment, I lacked stability and self-confidence. Watching my mother’s health rapidly change from hundreds of miles away, I lacked control. And so I spent three years feeling adrift, never able to find a place where I was sure of myself or the future.

After my mom died in June 2011, I found that place. I found it in my kitchen. Baking became my refuge and the kitchen was the place where I started to once again build confidence and control. Things in the kitchen made sense in a way that my personal life and work life didn’t. I understood why eggs are best beaten into a recipe at room temperature. Measuring flour by weight rather than by volume was logical. Piping meringue into sweet, crisp kisses on baking sheets was a methodical form of art. I scoured the Internet for recipes and for the answers to my questions that my mom was no longer able to provide. And I took the products of my labor to work, where I shared them with colleagues and students, a baked sweetness to balance the raw bitterness. 

It’s been more than five years since my mother died and I left that job. For me, grieving and healing meant leaving and moving a physical place. Since then, there have been new kitchens, each better than the last. And while they look different, they remain the place where I feel most myself and most centered. Each time I open the oven door and feel the heat rush over my face as I lean in to examine my latest creation, I pause to breathe deeply and say a silent prayer.  


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About the art:

Stacy's story resonated with me in a number of ways.  Walking a fine line in a new role while balancing a stressful family dynamic is a challenge I have faced this year with the loss of my grandmother to lung cancer.  

Her experience at work is also significant, and echoes many others I've heard in my short time within our shared field.  Reading Stacy's story reminded me of a song that I'd recently heard: Nothing More, by the Alternate Routes.

"We are how we treat each other and nothing more."

It was such a simple statement that captured so much.  It means empathy.  It means focusing on the people first.  It means thinking before acting, considering the human impact, and seeing beyond the "business" of our purpose.  When you work with people, regardless of the "bottom line," empathy and compassion will always win out. 

I'm so glad Stacy shared her story, because it sheds light on the human side of our work.  Yes, we empathize with students daily (and sometimes we feel too much for and with them).  But that compassion deserves to be extended to ourselves and our colleagues, especially in these difficult and uncertain times in our nation  We are adults, and we are the caregivers more often than not.  But we also need to be empowered to seek support, ask for help, and when all else fails, trust ourselves to find a better place.  

- Beth Paris

0121: Invisible Illness

"Invisible Illness," Samantha Urban

In March, we wear yellow for endometriosis awareness. 

Living with a chronic disease is not only physically exhausting but mentally and emotionally as well. I, like 1 in 10 women in this country, suffer from endometriosis. This disease causes the lining of my uterus to grow where it isn’t supposed to be. It causes scarring and cysts in its wake. 

Endometriosis lowers my immune system and causes me to get sick easier. It also causes flare ups, even when I am not on my period, endometriosis still likes to remind me that it’s not going anywhere.

I was diagnosed with endometriosis at the age of 16. Shortly after I was prescribed birth control to keep the symptoms at bay. Unfortunately, that didn’t work for me. So, at the age of 18 I was put into a medically induced menopause. I had all the symptoms that those women going through natural menopause naturally had. Mood swings, hot flashes, night sweats. I felt bad for those around me as I was like Jekyll and Hyde during this time. When that didn’t work, I had surgery at the age of 20 to find out the extent of the disease.

It turns out it was worse than my doctor initially thought.

The endometrial cells were on my bowels, my bladder, inside my Fallopian tubes, and around my ovaries. There was a lot of scar tissue that had to be removed. Shortly after surgery at the young age of 20, I was told that motherhood was more than likely not possible. Granted, I have always been on the fence about wanting a baby, but I digress. 

Luckily, I have a very supportive partner throughout all of this. He knows what I go through on a regular basis and is okay with the fact that I may not be able to bear a child. He is also very supportive with knowing all the pain that I go through, he is always willing to help me. 

Now, at the age of 27 and being in a long term committed relationship I get asked the same questions very frequently, “When are, you getting pregnant?” “When are you having a baby?” “Do you want children?” Though these people aren’t aware of what is going on inside my body, they are still frustrating questions. I must be put on the spot and think of an answer to this question as to not go into detail about what is happening with me.

I usually say, “I am not ready yet.” “I have so many things I still want to do.” 

It’s crazy to think that 1 in 10 women suffer from this disease and there isn’t much education out there for people. With March being Endometriosis Awareness month, I wanted to get my story out there and let people know, who are suffering from this illness that they are not alone. It’s going to be okay. I also wanted to get my story out there to say, that even though something can’t be seen or isn’t actually tangible doesn’t mean it doesn’t exist and people aren’t suffering. 


About the art:

Samantha's story is pretty straightforward, and lays out a pretty clear image of the unfortunate nature of living with endometriosis. Her words bring to the surface a common illness that is rarely discussed. So I wanted to take the inspiration of her words and use a quote that I found when doing a simple search for endometriosis awareness. And the yellows were the obvious color choices. I wanted this piece to be bright and clean, and vibrant. I think this piece encompasses Samantha's story very well and I hope her words inspire more folks to share their experiences.

- Craig.

0120: A New Chapter


"A New Chapter," Juan-Luis Garrido

If I think of my life as a memoir of what I will one day accomplish, I know I’m at the start of a new chapter. I just graduated from my undergrad last year, and have started my career working in university student services. The last 23 years of my life have shaped my worldview, and have built me to be the person I am today. Those memories, experiences, and events will inform the rest of my life. 

One of those key events was when I was diagnosed with multiple sclerosis when I was 19. When I was first diagnosed, I didn’t know what multiple sclerosis was, and neither did my family. We all assumed the worst. The diagnosis brought so much fear, uncertainty, and concern to our lives. 

Now, I have been quite lucky so far – thanks to my doctors, treatments, and some lifestyle changes, I have remained healthy. It’s been 4 years since my last relapse, where I spent two weeks, including Christmas, feeling nauseous, dizzy and unable to feel my limbs. 

As multiple sclerosis is an episodic disability, this able-bodiedness is temporary, as there is no cure. As the time since my last relapse gets longer, the time until my next one gets shorter. It’s inevitable, and knowing the gamut of symptoms I could experience at anytime leaves a black cloud over the clear blue skies of my ambitions and future.

Every night before a big event, I think about what would happen if I wake up the next day, not being focus my eyes or see. When I think about when I need to find a new job, I worry about whether or not my benefits will cover my medication. And while I love my apartment, I hope that I won’t lose mobility while I live here, because it doesn’t have an elevator. 

I think about my plans for grad school, for advancing my career, for ways that I want to volunteer, and while I feel inspired, and motivated to affect positive social change, not knowing what my health or (dis)ability will be like even tomorrow, much less in a few years is terrifying. 

What does provide solace and comfort however, is something that I advocate for, champion, and always push the importance of: 

Community. 

I know that I am surrounded by family, friends, and loved ones that have supported me every step of the way. Taking care of me during my relapses, coming with me to doctor’s appointments and MRIs, and listening to me as I process these feelings has been crucial to me maintaining my hope and ambition. 

Being an ambassador for the Multiple Sclerosis Society of Canada has introduced me to amazing people, given me space to talk about and work through my diagnosis, and connect with fundraisers, advocates, and activists around Canada. 

And being part of communities that care about the development of students, the role of power and privilege in our society, and that fight to advance our society to be more fair, and more has empowered me to do the same.

My communities have taught me to be self-aware, and the importance of filling my cup so I can fill those of others. I’ve started meditating to become more mindful and intentional with my actions, my emotions, and the awareness of my body and my surroundings. I have empowered myself through lessons from others.

Through these communities, I have found strength, hope, and wisdom. So while I do not know exactly where my MS will take me, I know that I will have not only the support of my communities, but also I will always take with me the lessons I have learned from them.

My story is not about MS. It is not about the fear or worry that it brings with it. It is about how I have been lifted out of constant fear into a mindset of hope, ambition, and action by my loved ones. And that, for me, is the greatest story.


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About the art:

In talking with Juan about this piece, he gave me a simple concept—he wanted the splatters on this piece to mirror the way MS interacts with nerves in the body. So I made sure the splatters on this piece had plenty of legs, which meant slightly more water than I usually use on a splatter piece.

The quote is a modified version of Juan's words toward the end of the story. I wanted to capture this quote because I feel it matches the essence of Juan's nature and his determination of facing MS head-on and with no reservations.

The colors turned out quite rustic, which is what I was hoping to achieve—sometimes, I never know how the colors will end up. But this piece is definitely one of my favorites in terms of how the colors pop off the canvas!

I wanna thank Juan for sharing this powerful and empowering story with us for our first chronic illness month story! Getting us started on the right foot.

- Craig.

0110: Stay Positive (World AIDS Day special)


Content warning: The following story contains references to someone contracting HIV, which may be triggering for some readers.

"Stay Positive," Jacci Zappa

If you met me on the street, you might think, ‘Aw, what a cute, amiable white girl.’ I would blend in just fine with the stereotypical white girl crowd: coffee in hand, big fat scarf around my neck, and wellie boots on my feet. What you would Never in a million years guess is that my immune system is working harder than most, keeping a virus at bay. I am the outlier when people have an image of what HIV looks like, I probably do not fit your mold and I detest being called, ‘cute.' Maybe we shouldn’t have a mold. 

My story is just that, my story, I tell it to you now in hope that it sheds light on a very stigmatized epidemic. Human Immunodeficiency Virus knows no color, race, or gender preference. You cannot ‘catch’ HIV by sitting on the toilet seat after me or sharing the same utensil. HIV can be exposed, weakened, and transmission eradicated by bringing light to the subject: education, awareness, and proper precautions.

I was a Peace Corps Volunteer In Tanzania two years ago. I fell for a very intelligent host country national, even though I told myself I wouldn’t date while serving abroad because that just gets messy. It turns out he was part of the reason why I wanted to stay on another year, we were considering the ‘M’ word and how that would work. I also found my niche working with an HIV outreach NGO. Life seemed pretty fulfilling. I am faith-filled and purposely remained a virgin and intended to stay that way until marriage. Call me old fashioned, but I wanted that to be my gift to future husband. I was not as fervent in my morals as I tried for 25 years to be.

Once you live in a foreign country and date someone who is very good at painting you a beautiful vignette of your future together, wearing down how it is ok to show affection for someone you are going to spend the rest of your life with...funny how life happens differently that we plan and intend. My logic was worn down and I believed him.

*Side note: Interesting how you cannot always see how unhealthy a relationship is when you are in it, away from your support network, but once removed it becomes widely apparent. He was my biggest support and I wanted to make him happy. That meant giving him all of me.

It wasn’t until September 11th, 2014 (already a tough day in our history) when I heard the news. That was truly the first time I have ever felt like my world was physically inverted. I felt as though I was stuck in a very bad dream. The thoughts: Impossible. Impossible that it could happen to Me. Impossible because I am in a committed relationship...How could he?! All of these thoughts and feelings were whirling around like a tornado inside me. Then came the numbness. All the while ‘Be strong for your family’ and ‘You will not let this virus win’ were divine driving factors that made me get out of bed during the week of purgatory where Peace Corps Tanzania awaited authorization from Washington DC to medically evacuate me back to the states to begin treatment as soon as possible.

It’s true, during trauma, victims go through distinct phases and it is so important to let yourself feel each emotion while processing through them. Numb and no appetite, I functioned, relying on faith alone. Unfortunately Tanzanian culture and HIV stigma had an overtly aversive effect on the man who I thought I could marry. Shattering him, thoughts of suicide clouded his vision, thinking he could no longer be a viable member of society with this plague inside him. In Tanzania they do not talk about HIV openly, similar here. All I could do was encourage him in my weakest and most frustrated moment, ‘You are not alone. You have a family that loves you and this is not the end for Tanzania’s youngest and most successful entrepreneur.’ HIV can be managed successfully if treatment is adhered. The idea that fear can drive someone into such darkness widened my purview of how stigmatized this virus truly is and how much hope can be shared if only more people talked about it. 

Fast forward one month, treatment is underway back home and HIV is undetected in my blood count. I do believe in miracles and modern medicine. Treatment started with taking two pills once a day, now I only take one pill once a day and I intend to keep it that way until we find a cure. HIV medication has come so far in the last twenty years. This one pill targets the virus’ reproduction cycle at three different phases. I do not think it is outlandish to believe finding a cure will happen in our lifetime. I am more likely going to die of a heart attack because I love food so much than this virus taking over my immune system and lowering it to an AIDS level. There are so many precautionary options available: proper use of condoms, PrEP, free needle exchanges and testing, abstinence, and PEP if you think you have been exposed. You just need to ask. 

If there is anything you should take away from my story, let it be hope, not sadness. I do not think of myself as broken because I am not. I am beautifully and wonderfully made to speak up for those who have lost their voice. I am positive. My HIV status is a subnote, but not my title. Every time I would rather be asked a blunt question about HIV and transmission rates, than avoided. One of my favorite poems, "Instructions For A Bad Day," by Shane Koyczan speaks perfect truth, "Silence left to its own devices, breeds silence so speak and be heard.’ Ignorance and stigma are fed by fear and uncertainty. ‘Life is going to come at you armed with hard times and tough choices, your voice is your weapon, your thoughts ammunition."

Be brave and know that you are never in it alone. Feel free to show your weakness, because through weakness we find our voice, our strength. 

One Love.


About the art:

I'm not sure I cried more while reading someone's story submission than I did while reading Jacci's story. Jacci and I dated for nearly two years early in our college experiences at Oregon State and she is still counted among my most favorite human beings on this planet.

While this is the first time Jacci has shared her story publicly, I have lived with this knowledge for nearly two years, and the reaction I had when she called and told me she'd contracted HIV was similar to the reaction she shares in this story. Disbelief. Shock. Fear. Concern. Impossible.

And she did it in the most JACCI-way possible - with positivity and charm. She was already making jokes about it, too! Because that's how Jacci approaches the world. She is one of the most optimistic, eager, and curious humans I've ever met, and to have such an illness befall her, I was crushed.

So when creating this piece, I wanted to create something bright, vibrant, and optimistic. That way it would match Jacci's aura and overall demeanor. I also wanted to involve the words from the poem she quoted in this piece, so that it would serve as a wonderful reminder for her moving forward. I even snuck in a Circa Survive safecamp logo in the background to remind Jacci that she is safe with us, she is not alone. She has everyone.

I'm so thankful Jacci was comfortable sharing her story with us. It takes an immense amount of courage to destigmatize a topic like HIV/AIDS, and this is a wonderful step forward in doing so.

- Craig