My Cousin Miki's (MS) Cursed Life
Jose Miguel Sousa Jr. (November 26th, 1953 - April 19th, 1997) was better known from his childhood by the nickname Miki. I never called him anything else during the 34 years that I knew him. He was a part of my life from 1973, the year we first met. My father was off in Spain applying to medical school and as a toddler who had yet to speak, I would crawl around behind Miki, mistakenly thinking that he was my father due to his then thinner physique, his seventies moustache and long dark hair. Miki was amused by this but when my father got the news, he became a bit jealous.
Miki Sousa was born on November 26th, 1953 in Cuba, the son of my mother's first cousin Miguel Sousa, thus making Miki my third cousin. He was a cheerful and lively kid who grew into a liberal and affectionate adult. My mom was fond of him and everyone agreed that he had a bright future ahead until his parents moved to Garden Grove, California in 1967 along with his younger brother Frank and little sister Vivian.
Miki's life in Cuba was okay, but he refused to leave when the time came for his parents to do so.
Miki (standing next to his parents and besides his siblings) after arriving in Garden Grove
Miki and his uncle Bello sometime in the early 1970s
Family lore goes that Miki was enrolled in Garden Grove High School about the time that actor and comedian Steve Martin was graduating. Miki and his siblings took to the the counterculture of the late 60s and early 70s. Miki drank and smoked weed. He told his father that all he wanted from the United States was "employment and good health."
Miki (sitting next to his wife Maria Ofelia at the far right) in the 1970s
Miki (in the striped shirt) and his family during the 1970s
Miki's wife Maria Ofelia and his younger brother Frank during the 1970s
By the mid-70s, Miki married his teenage sweetheart Maria Ofelia. Their families were related, with Maria Ofelia's father being a cousin of my maternal grandmother. On April 1st, 1976, they welcomed their only daughter, Nidia.
Miki's Wedding Day in Westminster, California during the mid-1970s
My maternal grandparents are in the first pic and my aunt is in the third
My parents and I were living in Spain during the seventies while he attended med school in Cadiz, so we missed all of the above events. By the end of the decade, we also missed, (but got word of) that the marriage was over... and that Miki had been diagnosed with primary progressive MS (PPMS) which is better known as multiple sclerosis.
We returned home to Anaheim in 1981 and our Sunday routine became a hallmark of my pre-teen years: We'd bring flowers at Good Shepherd Cemetery in Huntington Beach after purchasing them at Conroy's and would leave a bouquet each for Miki's maternal grandmother Julia and my maternal grandfather Mingo. Then, we'd visit my mom's first cousin Tula at her home in nearby Westminster. She and her husband Bello had been taking care of their nephew Miki at the latter's own choice since the diagnosis made it impossible for him to keep working. As Miguel often told me throughout the years, "God had refused to grant him employment and good health, the only two things he'd ever wanted out of life."
I remember our Sunday visits very well. I was about age 9 when they first began in 1981. At the time, we visitors entered the house from the opened garage where Miki's much older Uncle Nelo would work on his beloved puzzles. Miki himself was quite a craftsman before his illness began to take its toll on him. He would build clocks out of different pieces of varnished tree wood, all in different shapes. Everyone in the family had one over the center of their living rooms. As a gift for myself, he designed a child's version complete with two images: A pair of kids holding hands while walking in the woods and Jesus Christ holding a sheep as the Good Shepherd.
Miki's voice was low and sweet, he sounded laid back and relaxed. His eyes were kind of frozen in place. When people spoke to him, his mind seemed to drift off elsewhere. He wasn't very talkative, but he did have a social life. The first time I ever witnessed two people kissing was as I stepped out of the kitchen and caught his then girlfriend leaning over to plant him one on him as he sat in his wheelchair. Another time, he invited me to his bedroom. I was kind of creeped out by his invite since he was a man of few words and reminded me a bit of Charles Manson whenever I looked into his huge, bulging eyes. But I trusted him somehow because he was my cousin, so I followed him and waited outside until he'd settled down on his bed. With both arms crossed over his head, he softly asked me in: "C'mon in, Josie." (Most everyone called me Josie because they couldn't pronounce Joseph when I was a kid since I'd been overseas for so long.)
We exchanged a few words as I politely browsed through his cabinet drawers until I found a stack of men's magazines. I knew they would go over my head, but he just said something to the effect of "you'll understand all about that stuff once you're old enough." And then he smiled. Miguel would visit him somberly up until the very end, bringing him LPs of his favorite folk singers and boxes of cigarettes. At some point, Bello told my mother that he would awaken in the middle of the night and fear that Miki was going to harm himself after hearing his wheelchair rolling down the hallway, but it would turn out to be that he was headed towards the kitchen for a midnight snack.
Vivian's son Nick had grown up by then and he moved in with Tula and Bello. Nick and Bello devised a way of pulling Miki up from his bed using a pulley so that they could bathe him and change his bed linen, which Tula would wash. Bello would cut his hair down to a buzzcut and he began doing the same to me at my own request. I still have it done once or twice a year in his memory. All three shared the duties of feeding him and tending to his hygiene.
Miki Sousa passed away on April 19th, 1997. He was 43 years old. Tula knew the end was coming and we all got together to bid him goodbye in a single file. When my turn came, I kissed him on the forehead. He felt cold and clammy. He was wearing a striped pajama if memory serves, and he looked like a Holocaust victim. His body was skeletal and his skin had turned yellow. Nobody in the house spoke a word as they took their turns leaving his bedroom.
After the ambulance took his body away, I helped Bello and Nick tear the aluminum foil off from the windows. Bello was steadfast: "Enough! It's been almost twenty years. It's about time for the sunlight to shine in through this room! On June 30th of 2007, I slept there while staying over late one night. Tula had been using it at the time.
Over the ensuing years, death claimed Bello in 2006, Miguel in 2008, Mina in 2009 and Tula in 2015. All four were cremated. Shortly before Tula's passing, she revealed that Miki had left a son behind, probably the main reason behind his divorce. So Miki's bloodline hopefully lives on somewhere near me. It's a small comfort for some reason. Miki deserved a far better life than what he ended up getting.
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