Today's Hero: Kassi Figueroa

Good Morning! Today our Hero is Kassi Figueroa and her mother. We are very grateful to Kassi for sending us herstory and enabling us to learn of her Lou Gehrig's Disease: After a decade of ALS facts in my head and statistics in my very DNA, you'd think I'd be able to dissect the disease in layman's terms in one short sentence. But I can't! Lou Gehrig's Disease is literally the WORST disease I've ever seen, and it's not an easy thing to describe to someone, because the very words give me anxiety. So...for those people who want a clean version, don't ask me. Because, although I wasn't the one lying in that bed for over a year, miserable in my own skin with my mind intact and WHOLE...I DID watch that person do it. She was my mother. My YOUNG, incredibly BRAVE, mother. She was 41 when she was diagnosed with ALS. My mom was always a busy person, but when she started suffering back pain and refused to sit in the car for long periods of time, we knew something was up. My mom had always been the first one to get excited about a road trip!! I made a trip up the Oregon Coast to Seaside and I asked my mom to drive up the coast and meet me. She told me her back could not handle that road trip and that it would start going in to spasms if she sat and the cramps were too bad to enjoy anything anymore. My parents started talking about getting some testing done to see what was going on regarding her muscles. I was 21, fresh out of the Navy and newly pregnant with my first child when my father took my mom up to Oregon Health and Science University (OHSU) in Portland, Oregon for some neurological tests. We, or I...assumed it would be MS. That....I was prepared for. My mother endured three days of testing which included an electromyogram. This test measures the small electrical signals in muscles when a tiny electrode needle is inserted into a muscle, like my mother's arm. It was very emotionally stressful on my parents. She also suffered a Nerve Conduction Study. After these tests were done, my dad called me and told me he thought my mom had Multiple Sclerosis or MS. I was slightly relieved, because I'd been reading up on it and all I knew was that it wasn't terminal. MS is a harsh sentence and a very expensive disease to maintain, but at least my mother would be alive. I hung up the phone at the ranch, and told my four siblings that I thought mom would be okay with our help. We celebrated my mom's life that night by crawling out onto the roof in the cold January air and watched the stars and satelites til late. Our conversation that night did not include death. On the third day of testing, my mother had an MRI, to rule out all other neurological diseases. What I didn't find out for about twelve hours was this: the MRI ruled out everything, INCLUDING MS. My mother had the Darth Vader of all motor neuron diseases, Amyotrophic Lateral Sclerosis, more commonly knows as Lou Gehrig's Disease. When my father recovered from his initial shock, he placed that life changing phone call to his offspring. My 14 year old sister, Alea answered the phone and the tone in dad's voice must have been somber because she was white as a ghost as she handed the phone over to me. I pressed that old white handset harshly to my face and in a few short sentences my own father imprinted onto me the legacy of ALS. "What is THAT," I asked him. He was silent. "You know that old PDR I have in the bookcase, Kass?" he quietly asked. I knew. I hung up the phone and practically flew to the bookcase, looking for that old Physician's Desk Reference that my dad was constantly using to diagnosis little insignificant family illnesses. This is dumb, I thought. Why couldn't he just have SAID. Well, what my dad couldn't SAY, was plain as day in black and white, about one minute later. I sat. For an HOUR. Staring at the textbook definition. "a neurodegenerative disorder that is usually fatal. It frequently results in death from respitory failure or related complications around two - five years after diagnosis." And yes, that was typed here from a decade old MEMORY that will forever be with me.In the months to come I would sit on her bed, holding my infant son, as my mother would hold out her arm to me and tell me to 'watch' the muscles dancing up and down her arms. It was the atrophy, or the hardening of the muscles. She thought it was funny. She would giggle uncontrollably, emotions out of whack, and tell me her body was 'freaking out'. I would laugh, not knowing that just a short 14 months later, I'd be standing at the foot of her small white casket, melting into myself. As the months went by, she had trouble walking, her back would hurt, the muscles were slowly disappearing, she was in a constant state of discomfort from the cramping. She was 95 pounds, soaking wet, her entire life, the only time she was over 100 pounds was when she was holding a plate of food or pregnant with one of her children. People used to joke that she could use a tortilla for a blanket, she was so LITTLE!! So the disease known as Lou Gehrig's which is known for eating away at the muscles of the body, really had no muscles to work on. She went fast, when in reality, most people with ALS can last three to five years...sometimes up to 20 with the rare cases. I even know a man that has been diagnosed for ten years and he still can walk without benefit of a cane!! My mother, that petite woman with a fiery soul, lasted a mere 18 months from her diagnosis. In the early weeks after her diagnosis, she suffered a hard but quick depression. She locked herself in her room, not speaking to anyone. She would not take phone calls. It seemed nothing could comfort her, except her faith which she wore like a bright red scarf thrown back across her shoulders. She would cry softly, and we'd stand on the other side of her bedroom door listening, with identical stricken looks on our faces. My dad kept himself busy, always in and out of her room to sit with her, pray with her. She came out a few weeks later, okay. That was that, "it is what it is," she said, and the grieving was tucked away. But I do remember her grief being triggered by certain things in those first few weeks and months of her diagnosis, and she would run crying to her room and even with the door shut, we could hear her moaning, "I don't want to die, please God don't take me." It was horrible to hear your own mother so afraid. My mother. She'd always been SO strong, it was almost a foreign thing, this fear we saw in her. I'd creep to the door and knock, telling her I just wanted to sit with her. She would open the door and cry all over again. You know, that kind of crying that is only done when someone shows you a kindness. Like when you think you're okay, but then someone hugs you, and you fall apart? That kind. She'd tell me that she wasn't afraid of DYING as much as she was afraid of MISSING US. She knew that she'd have to leave her children, her husband, her home, her family. Her grief was for US more than for herself. She suffered a homesickness for us, for each of us it was different. For her three boys, it was a sadness that was wrapped around thoughts of them growing up without her. Her baby was only 11 years old, how could she leave him?? She had four children at home to take care of, how could this HAPPEN to her!! She was about to become a grandmother for the FIRST TIME, she needed MORE time. More time.One weekday, my mom and I went shopping in Fred Meyer for some groceries. This was around the time in her disease when she was fast losing control of alot of muscles, she couldn't speak very well at all, and she walked with a gait that looked like a limping colt. Skinny legs, size double zero. We went inside, fast foward to the freezer section, I had newborn Gabe strapped in a baby sling, and was watching mom fill her arms with frozen orange juices. Too many. She couldn't grasp any of them. They went FLYING all over the place. Uncontrollable laughter followed. This was her first episode of that. Lou Gehrig's patients are known for their uncontrollable laughing and crying. I never did understand what that meant when I read about it, until I witnessed my mother experiencing it. It's part muscle control, and part emotions OUT of control. Just uncontrollable and WILD laughter..it rang through Fred Meyer's...and she couldn't stop. I had to take her out of the store, she was gasping for air, people wanted to call the perimedics, I kept laughing, telling everyone, 'she's okay, she has ALS.' No one knew what that meant. "Is she having a heart attack?" "NO GODDAMN IT, IT'S ALS!!!" And even though my mom was gasping for air with her lungs in spasms, I could still recognize an amused glint in her eyes that meant: Stop cursing Kassi. HAHA! My mother, feisty til the end. That was our last shopping trip. She cried uncontrollably the whole way to Toledo. Then told me to turn back to Newport. She wanted to see the ocean. Back we went, to Nye Beach. We sat in the car for a while, til she could breath again, then she asked if she could hold her grandson in her lap. She was terrified of holding him, her muscles in her arms, fingers, hands, shoulders...none of them worked. But he was sleeping, and that's what she did...she held him on her knee's. Quietly breathing for the first time in hours, she watched her first grandchild sleep through her horrifying disease. If only I could have slept through it. If only my mom could have slept through it. But she didn't. She was awake, aware, and terrified of it. As the disease progressed, my mom became a little obsessed with finding a way to a miracle. She became caught up in a prayer group in Newport that promised healing through the Lord. One woman in particular, told everyone that the Holy Spirit spoke to her and my mom would be healed. I went to one of these prayer meetings, hope in my mom's eyes gleaming. The women there were convinced that speaking in tongues would prove she would be healed. After a few months of this, and as the disease started to take it's toll, my mom started to accept Lou Gehrig's. To this day, a decade later, some of those women still can NOT meet me in the eyes. My mom started drinking a vitamin drink, it was filled with Vitamin E which she believed would slow memory loss, Vitamin A helped with the repairing of the body and regrowth of good cells, and every Vitamin B you can imagine. The Vitamin B group is believed to help fight ALS through ways I cannot explain here, it would just made it too confusing. But the drink she consumed daily, involved alot of money and yes I tried it, it was a disgusting mixture. And no, it did nothing to help. In October of 1996, I flew to Washington DC with my son, to set up house as a newly wed. She came out onto the porch of the farmhouse, stood leaning against the doorframe. She waved goodbye and turned to go before I was even in the car, she was hiding her tears. It was the last time I would ever see her on her feet. Soon, I would speak to my mother for the last time on the telephone. It was Halloween of 1997. She couldn't use her voice to form words after that. Imagine hearing your mother, whom you've always known to be strong and highly intelligent, speak as though she were mentally challenged. It was something I'll never forget...and I thank God I was on the other end of a telephone, three thousand miles away, because the pain and fear in my eyes would have made my mom cry. The new year 1998 came and went. Again, I was on my way to Oregon to be with my mom. I brought my pregnant belly, my unborn Jewel and my 10 month old son, Gabe. He was the light of my mother's last few months. She lay in that easy chair and he would crawl all over her skinny body, not minding the bones and fading light in her eyes. He loved her red painted nails, she loved that baby boy. I remember in the dead of night, my dad would come up the stairs of that old farmhouse in his silent way and stand at my door telling me to 'wake up, your mother needs you.' He would be on his way out into the predawn to feed the cows, and my mother could not bare to be left alone in her misery, in the dark. I would massage her back, she would feel my unborn child move in my womb and cry herself to sleep. She'd wake in rages, screaming at the disease...it would scare my younger siblings who were only in elementary school at the time. The disease scared them into silence, they'd creep throughout the house, doing their chores, their homework, never laughing very loud...escaping into whatever held their attention. There were four of them. Alea, Jeremy, Jonathan and Nicholas...all of us so young!! They'd come in from school at 4pm, and each of them would spend some time with mom, she was never alone, there were too many of us, haha! They'd perch on her bed, jabbering about school, friends, homework. Mom would ask about the pets, tell Alea and Jeremy to BE GOOD, and tell Jonathan and Nicholas to QUIT GOOFING AROUND, LISTEN TO DAD. I'd often find her sitting with tears in her eyes, watching an old movie. She missed her children. At this point, my mom was making her way into a weight that some of us haven't seen since we were 3rd graders. The muscles in her throat would not work, except to swallow sweet tea. Never plain water or orange juice or even milk shakes. She'd choke. She could only swallow sweet tea drank from a straw, the homemade Southern kind that my grandma Jo taught us to make. I think my mom was regressing back into her memories of childhood in certain ways, like only drinking that sweet tea her mother made. Or listening to her John Denver cassette tapes. To this day, 'This Old Guitar" will take me to a place that no other song ever will. Hearing James Taylor sing his "Handy Man" makes me cry, remembering my 60 pound mother closing her eyes, finding comfort in the song and swaying to the chorus. She found a comfort in music that not even morphine could take her to. But she found a misery in Lou Gehrig's Disease that seemed straight out of a Stephen King novel, one in particular that still haunts my nightmares. The worst misery was in the way that she starved to death. The muscles in her throat betraying her, leaving her unable to swallow sweet tea after a while. Her bedroom was positioned right next to the kitchen, it was the only room on the lower level. She suffered the smells of roasts, and steaks, and apple pies...because her five children were alive and well, and they had growing appetites that did not suffer. The worst memory of my mom will be of her lying in her bed...sobbing. She was so hungry, and couldn't eat. She couldn't talk. She could only communicate on those children's toys, the ones with magnetized pencils, called MagnaDoodle's. My mother wrote her needs and wants on those MagnaDoodle's. I use that in plural, because my fiesty mother went through many. She broke quite a few in her frustration of not being able to get her point across. She couldn't grasp the pencil most days, had to fist it. These are some of the things she wrote: PAINT MY NAILS? GIVE ME MY JEWELRY BOX. YOU'RE GOING TO HAVE A BABYGIRL, KASSI. (and yes, I did, just two months after she died.) I WANT TO GO HOME. JAMES TAYLOR. JOHN DENVER. XMAS MUSIC (in May?? we'd ask?) YES NOW!!! and she'd beat the MagnaDoodle until it cracked. Lou Gehrig's took her muscles and her ability to speak, to eat, to breathe well...but it did NOT take her mind - behind those beautiful eyes was a brilliant mind that was shocked at the way ALS took her life away. My dad hung up that last cracked MagnaDoodle in the barn and for a year or two, maybe more....it hung there, a reminder of my mom, we all used it to write I MISS YOU MOM. I LOVE YOU MOM. My mom refused life support, her living will stated her wishes, which included not even an IV to help with dehydration. At the time, I was VERY angry, I could not figure out why she would want to die so horribly. But now I realize that she just wanted to DIE. To get it over with. Please DON'T prolong it, was what she meant. In 1997 there were no known treatments, not like there is today. Of course, there still is no cure, but there are drugs to prolong the disease. Back in 1997 and 1998, there was only MORPHINE. And Valium.  Baclofen.  Atropine.  All of these were given as suppositories. Yep.  ALS even took my mother's dignity.  In the last months, she was drooling, choking, raging and crying.  When she wasn't crying, her emotions were like a roller coaster. They went from wanting to give away every piece of her jewelry to a HOSPICE worker, to trying to throw herself off the bed, because she wanted to see her mama in California. TAKE ME TO CALIFORNIA she'd scream in her slurred voice. I'd hide around the corner, clutching my unborn child, screaming silently at God to help my mother. I'd throw myself on her bed, on top of her, to stop her from throwing herself off the bed. I'd hold her, skin and bones poking my body, she wouldn't stop shaking, she'd choke on her own cries. I'd say the Rosary so she could hear me speaking, and it would calm her down. My sister Alea would come and sit on the bed and just talk and talk and talk....hearing  Alea, my mom would drift into sleep. Time for her morphine. She started sleeping for days.  The body's miraculous way of dealing with stress, of survival. Sleep enabled her to escape from the hunger, from the pain of her muscles spasming and cramping. She woke up one day and motioned for her MagnaDoodle. GO HOME TO DC, she wrote. TAKE BABY GABE TO SEE HIS DADDY, I told her "NO, I'm not leaving you, mama!" But she would only nod her head, and there was no arguing with her. I was five months pregnant. So I booked a flight in late May 1998, for a return trip home to DC to see Josh, thinking I'd come back in a few weeks. How nieve I was. Maybe blessedly so. The morning I left for the Portland Airport, she was wide awake. I sat baby Gabe on her lap, and she wrapped her hands, which by now the disease had turned into claws, around her grandbaby. Her hazel eyes were HUGE, pools of sorrow, of lonliness, of pain, of LOVE. She smelled of death, of suffering. But she was my mother and I gathered her into my arms and breathed in every scent, felt every tear, every muscle cramp. Felt her struggle with her breaths, felt her heart with it's startling power...beat with a love that has never touched me again. A mother's love. I said goodbye with surprising strength. She had bestowed on me a great strength, my mother. The grace of her suffering had taught me a lesson, and my grief was nothing compared to hers. I told her I'd see her in July, that I'd fly no matter how big my unborn child made me! She laughed, a gutteral version of her once sparkling giggle. Somehow I made it outside and to the car where my family was waiting. I never did break down. My mother  was stoic, grace without movement. To paraphrase Hemingway, "it's not the dying but the manner of it." I never saw my mother alive again. She died at the age of 44, just two months later. We buried her two weeks before her 45th birthday, and even ten years later…the stark pain of it drifts against our memories  and ALS is still a bitter battle.