About
Who Am I? What’s My Story?
*Trigger Warning: death, grief, suicide, illness
I'm an artist.
I've been writing poetry, songs, and novels since I first learned to write in elementary school. I have a passion for and extra-ability with words. I discovered recently that I'm neurodivergent (AuDHD) and have hyperlexia which means I'm good with words and reading, the opposite of dyslexia. But don't ask me to do math. I have number based synesthesia which prevents me from quickly calculating numbers.
The synesthesia is part of my neurodivergence and provides just as many detriments as it does gifts. One of the gifts is the ability to perceive sound and music as shapes, textures, movement, and colors in my head. I use this to create intricate but also well-informed melodies to music tracks. That skill combined with hyperlexia allows me to quickly write poetic lyrics with satisfying melodies. I'm proud of this ability even if it comes with oddities outside of the music and art world; one seemingly being prophetic dreams and a disturbing ability to predict future events and assess a person's psychological state with intense accuracy often knowing things about them before they've discovered it themselves.
My friends tell me this means I’m psychic. I’ve never been comfortable with that label preferring to attribute my ability to increased pattern recognition brought on by the 'tism to my ADHD and an adequate dose of childhood trauma. Perhaps we’re both right.
Aside from being an artist, my story contains, as I said before, a lot of trauma. I grew up very poor, a second generation Sicilian-American to a hard-working mother and a disabled father, and the middle child to two sisters. I also have a much older half brother, a sad story for another time.
My early years consisted of hanging out at home with my dad while my mom worked. He gave me a lot of freedom to be creative. We'd garden a lot, he'd let me paint while he worked on his old dilapidated truck and a trike he'd been building with his brother who passed many years before I was born from the same illness my father had. This was a happy time for me. I wrote poetry, played piano, painted, sketched, wrote a novel, and read stacks of old National Geographic magazines my grandpa had given me as we couldn't afford cable, blissfully unaware of my family's poverty and hereditary illness. These years were beautiful, but fleeting.
When I was about 9-years-old my father suffered a personality change we wouldn't understand until years later. This change led to him and my mother divorcing. Soon after the divorce my mother's brother told us terrible news that his wife had been diagnosed with a rare and terminal brain disease. They had four young kids, one who was severely mentally and physically disabled being taken care of full-time by my now terminally ill aunt. It was devastating. Given the recent divorce and estrangement from my father, my mother thought we needed a change and thought spending the summer with my cousins to help them while their mother died was exactly the change we needed.
We all packed up to leave for the summer, taking a small u haul of our things so my mother could rent our house out while we were gone. My father came by to send us off and stood in the road to wave goodbye as we drove away. I waved until I couldn't see him anymore with the worst pit in my stomach and a tightness in my throat.
That summer was long. So long it turned into a full year, and eventually, it became a permanent move from Maine to Massachusetts. My cousins and uncle were much worse off than we thought. My aunt was the full-time caretaker of everyone and with her rapidly declining, they were all helpless. It was deeply painful to watch my once vibrant, spunky, and talented aunt diminish into a mumbling shell of who she once was. Her disease was called "Picks" a generic name for a brain-deterioration phenomenon doctors know little about and could not say where or how she contracted it, if she contracted it at all. It was so mysterious and very deadly causing anyone unfortunate enough to suffer it to slowly lose all bodily functions before a painful and inevitable death.
My beautiful aunt was an incredible piano player and I used to dream of playing like her when I was little. At the beginning of that summer she would sit with me, patiently guiding me through some of her favorite piano songs. For some perfectly ironic or maybe coincidental reason, we'd always play "Memory" from the musical Cats. It was one of her favorites. As that summer progressed her disease progressed with it slowly picking away at her brain. By that autumn, she lost her memory and now it was me patiently sitting beside her showing her how to play her favorite song on the piano. Disturbingly poetic.
She died a little under a year after we arrived on one of the coldest days I have ever experienced. It was awful. I hoped it would be the last time standing in the freezing cold to put a family member in the ground, but as you can guess, it wasn't.
During this time in Massachusetts my father's health continued to decline and he was harder and harder to reach. We went from frequent trips back to Maine to see him, to just phone calls, to just birthday cards in the mail, to months going by without a word. During one of the particularly longer stretches I suddenly awoke from a deep sleep to the sound of a voice…spooky, right? What did that voice say? It told me to be ready. My father didn’t have much time left and I needed to prepare myself for his death.
About a month later we received a call from a random hospital in South Carolina telling us they had my dad in the ICU. He was found unconscious on a bus trying to get to Florida. He'd always wanted to go there. They told us he was in a medically induced coma and that we should get there right away.
I didn’t used to believe in psychics and fortune tellers, but this experience left me reeling in more ways than one. Pattern recognition is the ability to pull together seemingly disconnected details into a pattern to ascertain probable outcomes. My father was sick and getting sicker and I’d just seen someone die before my eyes. To me, it’s not a stretch to think I subconsciously knew what was coming next, but something about the timing was still odd to me. I even thought maybe it was my aunt warning me from the beyond, still caring for me from the other side. Stranger things have happened.
The next day we hopped on an airplane, my first time ever flying (I was 13-years-old). It was bittersweet and confusing. I was so excited for my first flight and yet deeply resentful for the reason behind it. I fought for the window seat and surprisingly won, not something I was used to as the middle child. My sisters were afraid to fly and didn't want to watch. I couldn't bear the thought of NOT watching the world get small as we lifted up into the sky. I was glad they were too scared. I needed that experience.
When we got to South Carolina some family picked us up and dropped us off at the hospital. It was too far from my aunt and uncle's house so we stayed in temporary housing offered by the hospital for family members of people in the ICU. A bleak setting to spend our time there. Did I mention it was the holidays? Oh, what joy it is to spend Christmas among other recently traumatized people as they say their final goodbyes to loved ones in the ICU.
I remember navigating that hospital for the first time far too well. Yet again, what we hoped would be a quick trip turned into weeks of turning down this hall, and then that hall, and then remember it's a left BEFORE the elevators, a right at that boring painting of a lake with a poster about colon cancer beside it, buzz at the door, tell them my dad's name, and be sure to gear up in a gown, booties, gloves, face mask, and hair net before entering his room. DON’T FORGET TO SANITIZE YOUR HANDS BEFORE THE GLOVES!
My father’s immune system was basically non-existent and he had contracted multiple blood diseases from all the years of pricking himself with needles.
That sentence was misleading. My father was not a drug addict, well, he smoked a lot of weed. A LOT of weed. But the needles were for kidney dialysis and, after some bad bruising, he never let the nurses stick him with needles, he insisted he do it himself. He had a very rare and hereditary kidney disease called Alport Syndrome. There are a few types of AS, but our family has the X-linked kind meaning the disease lives on a mutated gene found in our X chromosome.
I’ll try not to get too sciency on you so here’s the quick explanation: Men have one X and one Y chromosome, women have two X chromosomes. The presence of a Y chromosome is what makes a male a male. Since our disease lives in the X chromosome my dad had the ability to pass the disease to only his daughters (one X from dad, one X from mom), and any son my dad had would not have AS as they would have gotten my dad’s Y chromosome, as is the case with my older brother. Don’t worry, his life was still miserable without having AS.
What does this mean for me? I have Alport Syndrome. My sisters do too. Now, getting back to the needles… Alport Syndrome causes gene mutations in the collagen that affects the eyes, ears, and kidneys. This means these parts of the body can be underdeveloped and/or they break down quickly as the mutated genes on the X chromosome replicate over time. The progression of AS can vary person to person as the body does not always replicate gene sequences evenly. This is especially true for women who have two X chromosomes to copy from. But for men, there is only one X chromosome to copy from and so the disease often progresses twice as fast.
For my dad, that meant he was almost fully deaf, blind (cataracts), and in kidney failure by the time he was a teenager. This was the case for two of his older brothers too. One of his sisters also inherited Alport Syndrome, she’s in her 70’s and has had one kidney transplant so far. She seems to be well. Me and my sisters are also experiencing very slow progression of Alport Syndrome and may not suffer renal failure until late in life, if ever. Though, mine seems to be progressing a bit faster than my sisters’. Yay for me.
My father was, in his words, lucky to experience this disease with his brothers. Though his eldest brother with AS, Frankie, died when my dad was a teen, he found comfort in going through this hardship with his close-in-age brother, Billy. Together they wore hearing aids, thick glasses, and did dialysis together. That’s where the needles come in.
At that time, in the 70’s and 80’s, kidneys were not easy to come by so while he and his brother waited for new kidneys they underwent three days a week rounds of hemodialysis, a process in which a person is hooked up to a machine that pumps blood out of the body one liter at a time to be cleaned by the machine and then pumped back into the body. That’s what their kidneys would be doing if they still worked. This process took about four hours and was grueling. The chemicals used at that time to clean the blood was also horrendous, often leaving patients thrashing in pain, violently vomiting, or itching so bad they’d scratch the skin off their bones. Sounds like a good time. But it was that or being slowly poisoned to death by their own blood.
My father was known to exaggerate a bit, so, perhaps it wasn’t as bad as he said. However, my mother met him during this time and corroborated much of his retelling, except for the scratching to the bone part, though he was often very, very itchy. Today, dialysis is a much easier process, well, not easy, but less painful and itchy.
Before meeting my mother, my father was found to be a perfect donor match to his older sister who did not have AS. She was happy to donate the kidney to him and he underwent the surgery taking to his new kidney well. He was happy to be free from his blood pumping prison and took a trip to California. I grew up hearing so, so many stories about that trip. The breeze in his thick beard as he cruised across the country on his Harley Davidson, leather vest flapping in the wind. He eventually settled in Orange County with the same sister who gave him his kidney. He was living a dream of his, one he hoped he wouldn’t wake from.
Sadly, he’d soon wake to the news his brother Billy, his once frequent blood pump companion, was having a hard time going to dialysis alone. My dad began to feel immense guilt that he’d received a kidney and a new life while his brother sank deeper and deeper into Alport Syndrome. It wasn’t fair, he thought. Soon after, however, my father would lose his new kidney and rejoin Billy in the dialysis chair.
This part of the story has never been confirmed, but my mother and my father’s sisters always suspected my father of intentionally losing his kidney so he could be with Billy again. Something they thought he hoped would bring him relief from his guilt, but never did; it just shifted to feeling guilty his sister was down a kidney only for him to lose it two years later.
Back in the chair with his best friend again, my father was content to live this life, manually having his blood cleaned, smoking weed with his brother to stop the vomiting, and then building a trike together from scratch from parts they’d collected from local auto repair shops they’d worked at here and there. My father was a self-taught auto mechanic and a good one, as I’ve been told. Him and Billy lived like this for years until one day, Billy couldn’t do it anymore.
Again, this part of the story may be nothing more than DiMouro family lore, but it is plausible if you understand a bit about the kidneys and how without them potassium can build up in the body quickly and lethally: Billy, unable to bear one more day on the machine, sat down in his kitchen with a bowl of fresh bananas and committed suicide.
My father was devastated. He was the last boy in his family with AS and he sank into a deep depression while waiting for his inevitable death. My family was so sure of his imminent death they even purchased a burial plot beside Billy’s and had his name engraved on a shared tombstone with only his death date left blank. Bleak. My father started to drink and smoke more days than he showed at the dialysis center. The nurses who came to know him well worried each time he’d come in would be his last. Until, one day he arrived at the dialysis center accompanied by a beautiful young woman with bright blue eyes.
My dad met my mother and it saved his life. This one is true. Literally, she absolutely without a doubt saved my dad. She knows this because every single person in my dad’s life told her so. Even his doctors and especially the nurses at the dialysis center. My parents seemingly fell in love on their first date and couldn’t stand the idea of the date ending so my mother tagged along to my dad’s dialysis appointment that night. She sat beside him all night in a stiff chair until he was finally done around four am. When she saw how sick he was by the end she couldn’t believe how long he’d been doing this alone and insisted she be with him for his next one, and the one after that, and the one after that. She started going with him to all his dialysis and caring for him through the itching and vomiting. He started going to dialysis regularly, taking all his prescribed medicine, and even following his renal diet. He was getting better so he could be better for her. Gut wrenchingly romantic, isn’t it?
They eventually married, had three daughters together, and moved to Maine where my mother learned to hook my dad up to his own in-home dialysis machine so he didn’t have to go to a center anymore. If you’re wondering when that older brother came to be, I’ve skipped that part as, like I’ve said, it’s another very long and very sad story for another time.
Back to the ICU. I’m standing in a gown, a hair net, gloves, booties, and a mask that’s way too big for my face, looking down at my father’s gaunt and almost unrecognizable face; they’d shaved his thick beard for sanitation. I’d rarely seen him without it. He looked so small and frail, not a comforting way to see your father at the young and vulnerable age I was. The doctors told us he seemed to have gone a very long time without dialysis and asked us if he had dementia. We hadn’t thought about it before, but they said it’s not uncommon for someone who had been on dialysis as long as my dad had. I also hadn’t thought about that before, but after losing his sister’s kidney my dad didn’t want anymore transplants. He took himself off the list and insisted on dialysis for the rest of his life, for as long as it may be. He thought he’d be lucky to get 10 years this way, but with my mom hooking him up at home and not being exposed to as many diseases as in the center, he collected over 30 years on kidney dialysis; a rare feat but one that left him with declining cognition.
When me and my mother and sisters discussed it together, we realized his personality change years ago must have been when his dementia first began. We felt so deeply sorry for him looking back. We believed he left us and divorced my mom because he wasn’t happy. We thought it akin to a mid-life crisis; we didn’t know he needed mental health help. Feeling immense guilt we all nestled in by my father’s side as he slowly improved over the course of weeks and was safe to come out of his coma.
Waking from his coma was not smooth. He was very confused and didn’t recognize any of us. This was, as I’m sure you can imagine, traumatizing for me, still just a kid having my dad not know me. Luckily it didn’t last more than a few days and soon he was back to his more normal self, cracking jokes, being goofy, and just so happy to be with my mom and us girls again. He still loved her and I know she still loved him.
My father slowly improved but never enough to live on his own again. We all eventually left South Carolina and my father finished his trip down to Florida where his sister lived. We wanted him to come back to MA with us, but he insisted he finished what he started. He knew he was nearing the end of his life and he didn’t want to pass up the opportunity to see Florida before he died. He stayed for a few months until my aunt let us know he likely needed a nursing home. Not wanting to burden us, my father insisted on going to a nursing home in Maine. This didn’t last long before we drove up and scooped him up. He needed to be closer to us and we were in MA. We wouldn’t take no for an answer.
We spent the last few months of my father’s life visiting him in a nursing home in Pittsfield, MA. My dad would tell jokes, beg us to bring him Italian anise cookies so he could choke down the bitter nursing home coffee better, and scratch his back for him when he couldn’t reach and the nurses didn’t want to scratch him anymore. This time was hard and bittersweet. I wish I could go back and soak up those moments better. I knew he was dying, but I was only 14 and angry that I had to deal with this while my friends got to complain about homework and boys. I wanted a normal life and I resented spending my after school hours (when I wasn’t working) in a nursing home, even though I loved my dad and was grateful to spend time with him.
There are so many things I wish I asked him. Things about myself I wouldn’t discover until I was many years past 14, things I imagine I inherited from him (like my math disability), but I’ll never get to fully know for sure. My mom has done her best to fill the gaps, but she can only give so much. What I regret most is that I didn’t know how important knowing my dad’s story would be until the moments immediately following his death.
We were all in the room with him, me, my mom, my sisters, a couple of uncles, some cousins, and my brother was driving frantically from a few states over to say bye to him before it was too late, though he did not make it in time. My father’s passing was peaceful and better than he felt he deserved. He was ready to go. His health took a turn for the worse on July 11th. We spent the day with him in the hospital where they told us they were going to move him to the death floor. They didn’t really call it that, but it’s what I remember it as. The floor was quiet, had few lights on as many would rather not stare into fluorescent bulbs during their last breath.
My dad asked me to help him sit up, he wasn’t gonna die laying down. I sat behind him to prop up his weak frame. I bear hugged him resting my head on his shoulder listening to his heart pump softly into the vein in his neck. I was suddenly thrust back to a memory from my childhood I’d almost forgotten; in order to do dialysis regularly without collapsing his veins, a vein in my father’s arm was blown up into what is called a fistula. It looked like a puffy snake was crawling under his skin, it was always warm and it sounded like a train. When I was little and couldn’t get to sleep he’d press his arm to my ear and gently rub my back while the steady pump of his blood lulled me to sleep. I could feel that sweet memory turning sour as I heard his heart beating slower and slower, the vein in his neck moving less and less. I gently rubbed his back as I watched and listened.
And then it stopped.
No one else knew it happened yet. Just me. I held him in my arms, his eyes still slightly opened, a subtle smile on his face. Part of me wanted to scream, but another part of me wondered if he was still in the room. I didn’t want his final moments to be filled with our sorrow. I held my breath and waited a few moments holding him in that stillness, letting everyone else have just a few more seconds of peace without knowing what I knew.
Finally, the air shot out of my mouth, but words did not follow. I couldn’t talk. I didn’t need to though, everyone twisted their necks abruptly in my direction, looking painfully into my eyes. They knew what I knew. I finally managed to whisper, “he’s not breathing”. One of my uncles ran for a nurse who came in seconds later to check his pulse, he was gone. This set off a chain reaction of wails and screams starting with my little sister and then me. My uncle, my dad’s little brother, shook as he tried not to cry, ultimately hugging and kissing each of us as we wailed and then running out of the room. My poor mother just held us and cried as she watched us breaking, not being able to save us from this pain.
It was awful. For us that is. I’ve looked back at this moment so many times. Much of those times were involuntary, my brain just casually saying at the most inopportune moments, “Hey, remember when your dad died in your arms and you had to tell everyone he died? That sucked, right?” Yes, it sucked for me and my family, but for my dad, it was bliss. That paradox of emotion hung with me for years before I came to understand and accept it. I tried to avoid it for so long, but when it just wouldn’t leave me alone I stared at it straight in the face and saw something beautiful; I saw what my dad saw.
Death is inevitable for all of us, not just him. He had the pleasure of living his life knowing every day was a blessing, unlike many of us. He lived for decades on borrowed time, never believing he’d have a future to plan for. That day on July 11, 2006 at the age of 54 surrounded by the love of his life, his daughters, his brother, nieces and nephews, was stunning. An unimaginable dream come true, a life flashing before his eyes he was never supposed to have, and yet, there we all were.
In the time following his death I was haunted by the number 11. I saw it everywhere, every time I checked the clock, when I picked up my checks from work, when I checked the spare change in my pocket. It was everywhere and I hated it until something dawned on me. Maybe it wasn’t a bad thing to see 11’s, maybe it was my dad saying hi or maybe it was my subconscious way of forcing myself to deal with this loss so I could heal.
Either way, I learned something important. Death is not an end, we do not and cannot end. It took me staring it in the eyes to understand this. Losing my dad at 14-years-old will never not be painful. Though he lived a life he never thought he’d have, I still miss out on all the things a child wants from their dad. My dad wasn’t there to scare off my first boyfriend (I really wish he was), he wasn’t there to watch any of my graduations, he couldn’t pester my fiance with questions about intentions and life plans, and he couldn’t dance with me at my wedding. That sucks. The thing that sucks most is he isn’t here to see me finally singing and writing songs, something he always wanted me to do but I was too shy to let anyone hear me sing.
I regretted not letting him hear me sing and so when one of my aunts thought me and my sisters should sing at his funeral, I said yes. I wish I hadn’t. My dad’s funeral remains to this day the one and only time I have ever performed. Now, years later, I’m a musician who can’t get the faces of my grieving family out of my head anytime I think of performing. It wasn’t a good idea and is still something I have to overcome.
But what has brought me comfort is studying death and the afterlife. I don’t know exactly what happens, but I know something happens and I’ve had too many strange and coincidental experiences after my father’s death to believe he’s really gone and not with me. He may not have physically been present at my graduations, to meet boyfriends, or to dance with me at my wedding, but he was absolutely without a doubt there with me for everything. And whenever I experience my last moments on earth I trust I’ll wake from this dream of being me into a life where he’s right there to greet me and crack a joke and ask me to scratch his back. That is beautiful.
Moving on from my dad’s death, we soon after lost my cousin who had been cared for by my deceased aunt. This was sad but we all overwhelmingly felt she had left to be with her mother. That belief was the only thing that could console us all after so much loss.
As I’ve said a few times, my childhood was filled with traumas. It was not easy and continues to not be easy. I see how this trauma has slowed me down compared to my peers. I burn out faster from having to carry the burden of grief from such a young age and I need more time than they do to recover from day-to-day stresses. I can see where those traumas, in addition to having undiagnosed AuDHD for so long, have impacted my ability to work a traditional and stable job and as a result I’ve experienced unemployment many times and am chronically underpaid. It comes with the territory as I’m told by therapists and it’s to be expected.
The benefit of having experienced this type of trauma early on in my life is I too possess the gift my father had while growing up: I know every day is a blessing.
I know I’m lucky to be here, how close I was to almost never existing, and how lucky I am to still have functioning eyes, ears, and kidneys at this point in my life. This understanding is why I make music and art now. It’s why I let myself stop comparing my progress and income to my peers and instead focus on what’s here right now in the present moment for me to experience. It’s why I love to write and create and it’s why I want to share my art with as many people as possible. At the heart of every thing I create is the message to wake up and be here now.
And it’s also, at least partly, what I believe has given me that extra ability to perceive others’ emotions and to have a deeper connection to life beyond this one. I still don’t like to call myself a psychic, but I can’t deny my extra gifts any longer. These gifts have been helpful to not just my own healing, but to my friends and family.
These are gifts I’m finally ready to share with all of you. I hope that you’ll let me.