We're All Insane - Watching Her Father Die

Episode Date: February 6, 2023

ALS, also known as Lou Gehrig's disease, is a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord. It results in muscle weakness, difficulty speaking, swallowing, and eventually breathing. There is currently no cure for ALS, and the cause of most cases is unknown. Despite this, research continues to advance and improve treatments for those living with the disease. Physical therapy, speech therapy, and assistive technology can help manage the symptoms of ALS, but it ultimately leads to complete paralysis and death. Nevertheless, patients and families affected by ALS have shown remarkable strength and resilience, leading advocacy efforts and raising awareness for the need for a cure. Jessica: https://instagram.com/jessicalbdr?igshid=YmMyMTA2M2Y= Jessica’s Father’s Book: https://www.amazon.com/dp/B00B9X2MJY?ref_=cm_sw_r_apin_dp_J2NJV980JKFFS5FA56AJ For more information on ALS: https://instagram.com/als?igshid=YmMyMTA2M2Y= FREE-1 year supply of Vitamin D and 5 free travel packs with code INSANE: www.athleticgreens.com/insane Audience Survey: http://survey.podtrac.com/start-survey.aspx?pubid=3RJP1Q85a-_d&ver=standard If you have a unique story you'd like to share on the podcast, email [e-mail]. Learn more about your ad choices. Visit megaphone.fm/adchoices Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey guys, it's me DeVora. I just dropped an all new bonus episode inside my new subscription channel, We're All Insane Plus. This week's bonus episode is called My Brain was slipping into my spine. Listen now by subscribing to We're All Insane Plus inside your Spotify or Apple Podcasts app or go to we're all insane.com. Welcome back. This episode is sponsored by Athletic Greens and you can use promo code Insane on your first purchase. Hi, my name is Jessica. I am the daughter of two Cuban parents, one of which was diagnosed with a very rare chronic illness that turned our American dream into a nightmare. So my parents were both born and raised in Cuba, where they met and fell in love. Cuba is one of the communist countries that still exists today. So this means that the state pretty much dominates like all the wealth, the economy.

They pretty much make decisions on behalf of the people. So because of this, the living conditions in Cuba aren't the way they are here. here. For example, there's some areas, especially the areas that my parents were born and raised, that they don't have AC, some people don't have running water. They don't even have streets. It's more like dirt pavements or dirt roads. And the main form of transportation over there, they don't really have cars. Like, if you're to see somebody that has a car, it's going to be like an antique car. So, like, the main form of transportation is literally like horse carriages. So, like, you get on a carriage and they just go around the town, like pick up people that, like, want to go around town. And then you have a guy that's literally like whipping the horse.

Yeah. Telling them to like, oh, go left, go right, like go straight. How long did your parents live there? All their life. Wow. So I would say they're 30s. Okay. Which is where the whole, like, journey starts.

Got it. So it's really upsetting just because the conditions in Cuba aren't like they are here. So a lot of people actually do pass from lack of, like, basic. necessities, like food, medication. So it's pretty much like if you live in Cuba in parts like this in Cuba and you don't have family that live in America or other developed countries where they can send you like food, medication, or other resources, then it's like pretty much impossible to survive on your own over there.

Yeah. As sad as that sounds. That's why it was such a huge turning point in July of 2021 when SOS Cuba became a thing. And that was pretty much like this huge. protest where like humans went out onto the streets and they protested all the rising prices that made things like impossible to afford over there. So, um, it's really hard to be able to purchase food or the basic necessities that you need because it's so expensive. So, um, they basically protested for free elections, free speech, like basic human rights, like what we have here

that we don't think twice about, but for them it's something that they like have to go out and fight for. So skipping forward to my parents, they're going to have their first child, which was my older brother. So when my mom was pregnant with my older brother, food was so scarce at that time that literally like the only source of nutrition she had would be like my aunt, her sister, would like come visit her and bring her like a cup of milk. And that would be the only thing she'd like consume that day just because there was literally no food. Right. So were your parents working at this time? So it's pretty much just my dad was working. My mom, she was like at home helping out her mom and her sisters and things like that. But my dad was working. So even with him working,

it just like wasn't even enough to afford. No, no, it was not. So when she actually gave birth to my brother at, I would say like 28, 29 years old, she weighed about 80 pounds. Wow. So if that doesn't show you just how bad it is. Yeah. So speaking about my dad working, he worked at this, shop that was not in the same town that my mom lived in at the time. So it was like a few hours away. So he worked with two of his very close friends. So one of my dad's best friends that he worked with, he called him and he asked him, hey, do you want to go?

And my dad thought he meant, oh, go to another part of town to see where my mom was living at the time. And he was like, no, do you want to go to the United States? And my dad laughed at this. He was like, what do you mean? Like, that's crazy. Yeah. And his friend told him,

You do want to go. Don't tell anyone what you're going to do. Don't tell them where you're going. Just say you're visiting your family. So because at this time there was no cell phones or anything like that, again, like very poor part of Cuba. My mom was under the assumption that he was just working. So when your dad was working because it was a few hours away, he was typically like staying where he was. Right.

So he wasn't like commuting back and forth. Yeah. So there would be days where like she wouldn't see him. Okay. So this kind of helped with him being able to flee because since it was under the assumption that, oh, he's working. He's at work. He decided to go through with the plan because it was all planned out. And his friend actually let some of the other guys know.

And he was like, I have someone that can come with us speaking about my dad. So my dad decided to go through with it and leave Cuba with his friends because, like I said, everybody just wanted to get out. because they were so desperate to live a better life. Right. Especially for my dad and my mom, they were going to have my older brother. So it's like a new baby coming in. Like you want to give your children like the best life possible.

So that was like my dad's headspace going into this. Everybody so desperately wants the American dream, especially during this time. So my dad went through with it. They all met up at this church nearby where they worked. And then they traveled to where they kept, what they were going to use to flee. And it was literally like a makeshift raft.

Like a little raft with like timber and like other materials thrown on it to try and like make something float. And miraculously it worked. Wow. They used this little raft to literally go across the Atlantic Ocean towards Florida. That's crazy. I know. It's literally insane. So was your mom going with him at this time or not yet?

He was going alone at first. He was going alone with the group of five other men. Got it. Okay. And your mom didn't know at this point. she didn't know. Okay. No. So this whole journey of him fleeing was a seven-day process. So it was a week long of literally all the chaos that is about to happen. That I'm still like stuff on the, I know, I know. Floating the boat across the Atlantic Ocean. So was I. That sounds like a movie.

I know. Like Life a Pie, that one movie. That is crazy. Okay. Continue. Sorry. So yes, they use this little raft to travel across the Atlantic Ocean towards Florida. So a lot of the guys that my dad was traveling with. Their dad's actually lived in Miami and my dad's dad happened to also live in Miami. And there was this one time where he wrote his dad a letter and his dad responded and he said, if you ever want to come to the United States, I'll greet you with open arms and wrote his address that he lived in Miami. So they were all going to go see their dads, like move to the United States because they all had their dads in Miami. My dad actually wrote his dad's address on his foot with a marker. That was his way of just knowing what where he was going. Yeah. So it's actually crazy because during

these seven days of them trying to leave, they encountered so many like obstacles that you would think, oh, they'd get caught. Like they're not going to make it. So I think it was like their first night heading out. There was like a lighthouse. And you know how the lighthouse like shifts? Yeah. It literally like landed a spotlight on their raft for like 10 minutes straight. And it was like a lighthouse. great and they had to like duck and hide because they're like yeah they literally they know we're going to get caught and nothing happened nothing happened wait I love this because it literally feels like I'm like watching a movie no I know envisioning this this is so intense wow okay so the lighthouse was shining the light on their raft for like a good like 10 they were just hiding they were hiding they were like

okay like we're gonna get caught like the coast guards are going to come and take us yeah but that didn't happen like literally nothing happened um and so they just kept rowing their raft um there was a bigger boat that they encountered that was coming like full speed towards them they don't know who was on this boat but they think that they were trying to like hit their boat on purpose with like malicious intent or something so they literally had to like row as fast as they can to get out of that boat's way and they managed to do so which is like so crazy to me right in a little raft in a little raft yeah that's not um also they had a shark that was swimming underneath their raft for like a good while of the time that they were sailing, which is insane, like a little, a little shark under

the raft. Oh my God. But no shark attack, so it was good. Wait, I just need, do you know any, like what this raft was made of? I don't know. I would like to know. I just like, I'm like envisioning like this tiny little. Keep in mind, they don't, at this time, there was no like, like tools. Right. Tools, right. Yeah. Materials to make something like a boat that you have here. It's literally like handmade raft. They were supposed to make it to their destination. Because like anything that got in their way, they just like kept going. Exactly. That's what I always say when I like talk about this story that they were meant to make it. Like my dad was meant to come to this country. I'd say so. Yes. Oh my gosh. That's crazy. This is the one that actually like gave me chills. So there was a storm,

like a really bad storm that was like heading their way. And the one friend that was kind of like in charge of like the like journey because he had experience like with boats and stuff like that. He said whoever here believes in God, you better start praying. Wow. Because it was a really bad storm that was about to hit them. So for somebody that has that experience traveling the oceans, so know it's going to be bad. So my dad actually thought that they were just going to die with that whole storm coming. They were like, okay, yeah, this is the end of it.

He actually wrote a book, which is where all this. is listed. So his whole experience of him fleeing Cuba to the United States is written in his book. So he thought they were going to die when the storm was about to hit. But one of his friends said, hey, look, the sun's coming out. Like, we're good. Nothing happened. So did the storm hit at all?

Do you know? It just didn't. That's the part that gave me like the most chills because the fact that his friend said, whoever believes in God, you better start praying. I was like, oh, my God. Yeah. Like, that's insane. Right.

So yes, just continuing that week-long process, there were some islands that they managed to land and kind of like seek refugee for a few days because like rowing day and night is very tiring. They have to get rest. Yes. So they landed in this one island. I forget exactly what the island was. But they kind of set up camp, I guess you would say, in this little area. And they saw some fishers that were from Cuba as well. well and they were nice enough to lend them food and water and like some stuff to like make food.

Yeah, I was going to say did they do they pack up like any type of food when they went? No. No. Okay. So this like group of fishers they came and offered them food, water, just anything to like basically try to cook up a meal. But they couldn't take them on their boat just because they could get in trouble. Like if there is a coast guard that catches them like they're all right. They're all pretty much screwed.

So this night that they were on that island. there is actually a boat of coast guards that I believe they knew they were there because they were literally heading to the island that they were staying at. Yeah. So this whole day they were hidden under like some really tall bushes for like hours because the coast guards were like literally surrounding the island. They literally found the area that they set up like base and they were knocking over like all the stuff.

Oh my gosh. So they didn't like go looking past where they were set like where they saw what was set up. So they were looking. around the island, but the fact that they were hidden for hours, got it. They were never found. Okay. So hours later, it was nighttime. They came out because the coast was clear.

The coast guards were gone. And they said, okay, this is it. Because at this point, they were really close to reaching coast to Florida. And this is it. We're going to do it. We're just going to sail up to America. So they did it. They managed to come to America.

No casualties. Everybody made it safely. Um, my dad, the address that he wrote on his foot washed away, obviously because of the seven day, like, chaos that was going on. But he remembered the address. Okay, good. He remembered it. So once he made it to Florida, he went and found his dad. So he was with his dad for a while until he went to New Jersey where he worked as a truck driver.

Just trying to make ends meet at this point in time. He literally had no connections in America besides his dad. that was in Florida, but his dad was never present in his life. So it was kind of like, let me just kind of do my own thing, you know? Yeah. He actually came back down to Florida because he was trying to save up to bring my mom and my older brother, who was now about like three years old at the time and they were in Cuba. So he was gone for a while.

He was gone for a while. Okay. So he was living in America about, I'd say, three to five years by himself, like no family here. So when did your mom figure out? He was like just pissed out gone. That's the thing. She actually, he actually managed to make a phone call somehow from America to Cuba and got in contact with my mom. And that's how she knew.

Oh my God. He's, he's in America. Like he literally fled Cuba. So kind of bittersweet, you know. He's obviously trying to work to provide a better life for my mom and my older brother. My mom and my older brother were able to come to the United States. And in 2001, they moved to Naples, Florida. which is where I was born.

And we lived there for about four years or so until 2005 when we moved to where we live now. And my younger sister was born. So it was the five of us. And our very first house was a very tiny, it literally looks like a tiny home. There was only two bedrooms and like one tiny bathroom. So imagine like the five of us just trying to live our life in this very tiny house. because my dad managed to get a job at this grocery store that was like across the street so it was very easy for him to go he worked as a butcher like cutting up meat and stuff like that so he was kind of trying to make ends meet again starting from rock bottom having no family here that we could turn to for support them being immigrants that didn't speak word of english and my siblings and i being children yeah like it was it was very difficult Um, one day my dad, he kept dropping the knife that he used to cut up the meat at work.

And so some of his coworkers, they were like, hey, let's go take you to the hospital, see what's going on because he couldn't get a firm grasp on anything. So they went to the hospital. They waited in the emergency room for, I think it was about six hours or so for him to finally get seen. Doesn't surprise me. Yeah, right. So when he finally got in to see the doctor, she immediately recognized. his symptoms and she told him you have ALS I'm not going to tell you what that is what

that entails go home and Google it so for a doctor to tell you to go home and Google it that's insane that's like the opposite of what they tell you to do because usually Google tells you like the worst possible so they just told him and basically sent him yes yes um when my dad got home he used our we had like a computer in the living room and he was searching up what is ALS like what the heck is this obviously their first time hearing this yeah my mom was seated next to him like looking over his shoulder because she was like yeah i want to know what this is too um when they saw what aLS was and the life expectancy for people that are diagnosed with it they started crying their eyes out als also known as luggerick's disease is a very rare nervous

system condition i think it only affects about less than 20 000 people in the u.s per year this is basically a nervous system disease where all your muscles eventually just stop functional functioning. So when my dad went to the hospital and saw this doctor, it's because the disease had already started spreading towards his hands. So he basically like couldn't grab anything. He couldn't hold anything. He couldn't bend his fingers anymore. Like he was literally losing all the strength in his hands and his fingers. This slowly started spreading towards his feet and his legs as well. So it's becoming very hard for him to walk. So at this point, he was falling so many times in public.

Like he would take us to the mall and he would, his legs would buckle and he would just fall over. Because since all the muscles and his legs were getting weak, he didn't have the strength to walk normally. Like he literally had to keep his legs stiff and kind of like drag his feet on the floor. Like that's how he could walk, I guess you could say. Because if not, his knees would buckle and he'd just fall. I'm Anna Garcia, host of True Crime News, the podcast. Every week we bring you in-depth coverage on cases making headlines as well as those that go under the radar. Tune in for murders that defy explanation, mystery seeking exploration, and shocking secrets that will leave you breathless. Each week we honor the victims by going beyond the salacious in our search for justice.

Crime never stops, and neither do we. Listen to True Crime News available now wherever you get your podcasts. After he went home and kind of researched it and figured, and him and your mom figured out what was going on and what he had, did he ever go back to the hospital after that? Or they were kind of just like, it is what it is. We just have to kind of live with it. They were like it is what it is pretty much. Again, it was something foreign to them. Right. Like it is to a lot of people like this disease isn't really something that's as well known.

Yeah. Is there any type? Like, so it's not treatable. Correct? Okay. So, but is there any, like, do you know if there's any? that hospitals or doctors can do to kind of like help like medicines and stuff like that? So there is no cure for this and there's no known cause for this disease.

Like scientists don't know why it affects some people and then other people don't get it. But there are studies that suggest maybe it's because of genetics or environmental factors, but that doesn't really specify anything. The only thing that can really treat ALS, I guess you can say, is just physical therapy to reduce discomfort, but at the end of the day, there's no cure for the sickness. So it started spreading in my dad's body pretty quickly. So since it started in his hands and his arms, he wasn't able to perform at work the way he wanted to. Like he would drop all the boxes at work. He dropped the knives. Since it started spreading to his legs and his feet, he would fall. So he couldn't even walk at this point.

But even though this was all affecting him and he was going through this, he didn't let that stop him from being our dad and being like the male figure in the house. So even though he knew it was risky to go out in public and try to walk because he could literally fall at any second, he would still take us to the playground. He'd take us to the mall. And he's such a great father. Yeah, he didn't want to lose those moments. He didn't want to lose those moments.

Like he didn't want to let his disease define him or take anything away from him. Yeah, which is amazing, honestly. Yeah. I remember this one day we went to my elementary school, like open house, one of those events. And after we parked our car, his foot hit the parking block and his knees buckled over that. And he literally fell like face first onto the grass. And at this point, his hands were too weak to like hold himself up. So he would literally just fall on his face because he didn't have the strength to hold himself up. So we had like three men rush over and like help him up. Because my dad was a very big man. He was tall and he played a lot of sports, a lot of soccer, so he was very muscular. So it was impossible for my mom to pick him up or my siblings that were literally kids at this time. There was one instance at the house. One night he fell in the living room.

And since my mom was too weak to pick him up, she had to drag him across the floor and put him on a mattress. And that's where he slept the whole night until we can get help from the homeowners in the morning. Yeah. So the house that we lived in, this tiny house that we lived in, the owners were actually this Cuban couple that they had became good friends with. And because they knew of our situation, they charged us fairly low on rent, just trying to help us out. But obviously my dad's condition was progressing rapidly to the point that he couldn't

work anymore. There was one day that his coworkers just had to bring him since he worked across the street. They brought him across the street, like one on each side of him holding him up, hey, he keeps falling, like he can't do this anymore. So he stayed at home for a whole month, couldn't work anymore. He was like, I can't walk. I can't do anything. He was at home without working for a month.

That's when he kind of realized, I'm not going to be able to go back to work. So he was put on a wait list for an electric wheelchair because that was now the solution to this, that he would have to be in a wheelchair. It was about a six-month wait for him to get this wheelchair. Jeez. So in this time, was your mom having to help him, like, use the bathroom and pretty much do everything? So my mom, during this time of him, like, working at the grocery store and him starting to get these beginning symptoms, she worked at a restaurant. Okay. But since the severity of my dad's condition was just getting so bad and he couldn't go back to work, she quit her job.

And she was like, I'm going to take care of my husband. So she basically became his, like, 24-7-7-at-home nurse. She became his caregiver. So my dad, he couldn't use the bathroom normally because he couldn't stand up and walk. So my dad's friends had made a little bathroom for him outside where he would be able to shower. And so my mom can do that easier for him. So she did quit her job. She was at home all the time taking care of him. My dad wasn't working now.

And my brother, sister and I were all kids. So obviously we weren't working either. This started our financial problems. there was no money coming in. So we were struggling a lot to get by and trying to make ends meet every month. And this meant that we weren't able to make payments on our house, like pay the bills or pay rent. So the homeowners evicted us. So at this time in my life, when I was seven years old, when I was a child, I had really bad asthma. And I had to use a nebulizer for this to treat it whenever I had like really bad wheezing and things like that. And so since we weren't able to pay our bills,

they had shut off our electricity, our water, like everything. And we had to connect my nebulizer to our van that we had, which is our car at the time. And that would power on my nebulizer. And that's what I would use for my asthma. So word of our situation, like it got around and there was actually a news station. I don't remember exactly what news station it was. But they actually came to our house and they interviewed us. They interviewed our situation.

they just wanted to let people know this is how they're living. Their seven-year-old child is having to use her nubulizer powered by the van. So they showcased like my dad on his wheelchair, my mom pleading for help. Me and my siblings as kids like very helpless. And we actually had this one very sweet couple that flew down to Florida because they saw us on the news and they like gifted us like boxes of. water and food they were just very sweet. It's amazing. So we did have a lot of people in our childhood that reached out and kind of helped us because they knew what we were going through. We did go to church at this time as kids. So we had a lot of people that would help us out because, you know,

they knew our situation. They felt bad. They wanted to help these kids out. Their parents were struggling financially, emotionally. So we did get evicted from our first house, but with the help of the news and all the support we were able to find a better house. So yeah, we moved to our second house and the news station actually came back for a second and last time to kind of broadcast this as a Christmas miracle because it was around Christmas time. So they came back. They showed around our new house because it was so big.

So it was something we weren't used to. We were like, wow, we went from this little house to this house. So we were very thankful. Our sponsor for today's episode is Athletic Greece. I personally love taking AG1 every morning when I'm feeling foggy, sluggish, and just need to boost my mood and start off my day right. It not only helps with my gut health and my digestive health, but also with my mood, my immune system, and I have seen the biggest difference in my hair, skin, and nails.

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keep them in my car so I never miss a morning of my AG1 powder. You literally just have to mix them in water and just like that, your day is starting off healthy, easy, energized, and right. So that being said, if you are looking for an easier way to take supplements, Athletic Greens is giving you a free one year supply of vitamin D and five free travel packs with your first purchase. Just go to athletic greens.com slash insane one more time. That is Athletic Greens. dot com slash insane go check it out so we lived at this house for a few years um i did start middle school during this there was one day that my mom my sister and i had came back from my middle school because we were having a conference night with our teachers and it was about six or seven p.m. when it ended we got

home and my brother was on the living room computer just playing some games but my dad wasn't around keep in mind at this time he was using the wheelchair to get around the house and we were like hey where's dad and he said oh he's still sleeping this immediately like rung a bell we were like how's he still sleeping it's like six seven p.m so we ran into the bedroom um he slept in his wheelchair next to my mom's bed so was my mom's bed and he would kind of lay back on his wheelchair next to her bed we went in he was asleep and we were like this isn't normal so my mom started 10 tapping his face to wake him up. He wasn't waking up. I started freaking out. Keep in mind, I was like 11, 12 years old during this. And I was seeing what I thought was my dead father right

in front of me. I was slapping his face and like yelling for him to wake up and nothing. His eyes would like roll to the back of his head. And I just started bawling. I was yelling at my brother like, you better call 911. I was going just crazy to the point where like my mom and my brother had to like put me in like one of the bedrooms and like leave me there until I could calm down. I was literally like kicking, scratching at the walls, crying. And my brother did call 911. Obviously, since he spoke English, he was translating to dispatcher what was going on. And I just remember during this whole ordeal, I was like on my knees just crying and praying. Like I, this is like the most I've prayed in my life. Just growing up and being at church, God was like a huge factor in our in our life at that moment.

And so I was just begging to God. I was like, please don't let my dad die. Like, please, please, please don't let him die. And it was really scary. The paramedics came. They took my dad. Again, he was still unconscious. We didn't know what was going on.

They strapped him up to the stretcher. And they took him away with my older brother so he could translate and see what was going on. So it was just me, my mom and my sister at home now. And she called one of her friends to come and kind of watch over us because she wanted to go to the hospital and see what was going on as well. So she managed to call one of my dad's friends and said, hey, can you please take me to the hospital?

Something happened to him. Like, I need to go. So they went. My mom's friend stayed with my sister and I that whole night kind of comforting us and making sure we were okay. Again, we were freaked out of our minds. My sister was so much younger than me. And I was only 11, 12.

So this was just very traumatic for us. The ALS had already started taking effect on my dad's lungs at this point. and his lungs just failed. So the reason he was unconscious and wasn't waking up is because he wasn't getting oxygen in his lungs. His lungs just stopped functioning. They had to like open a hole in his throat and connect him to a ventilator, which would be breathing for him. It would do like artificial. Right.

Artificial breaths for him. So this is when they knew, okay, he's going to have to live connected to a ventilator from now on because his lungs just completely gave out. So we didn't know if he would make it or not because this was something that was very drastic that he would have to live breathing off of a ventilator. So he came back home after this whole thing happened. He was now connected to this ventilator. So because of this, it would start affecting the way that he would speak. So he would like manage to say a few words. And then this ventilator would like breathe air for him.

So it would kind of interrupt his words. It's like a few words and breath. Breath. So it was just very hard to like see all this unfold, especially as a kid. It's like I felt like there's nothing I can do except just watch my dad slowly die every day. Right. Because. And I'm sure for him too, it was extremely hard and frustrating.

It was very frustrating for him because again, like being our dad and him wanting to be there for us, he felt like he was letting us down. in a way by getting sick, but it wasn't his fault. There was nothing we can do about this. So even though he was connected to a ventilator, was using an electric wheelchair at this point, he would still go out of his way to do things for us. He would take my little sister and I and, like, walk us to Dunkin' Donuts and go get donuts, you know, around the corner.

There would be events at school, like the Dr. Sto's parade that we had. And he would literally take his electric wheelchair and go to the school. under the hot blazing Florida sun to just be there and see us to the parade. And, you know, this is when I knew that my dad was very strong and he was a warrior and he wasn't going to let this disease define him or get the best of him. He was going to keep being our dad and do everything for us despite what his health was looking like. So it started becoming uncomfortable for him to be on the wheelchair now because, again, all the

muscles in his body were now like slowly deteriorating. So it was uncomfortable for him to like sit on the wheelchair for long periods of time. It just caused a lot of pain for him. So we ultimately had to get a special bed for him, which is the kind of beds you would see like in the hospital that have like the different features and buttons. So he ended up being bedbound now. So from electric wheelchair to being on a bed. During this point, we had transitioned. We moved to, to our third house. So we were in a different house now. He was bedbound now.

So lots of changes. So at this point, how many years had it been? So at this point, I would say this was around 2014, 2013. Okay. So for ALS, the life expectancy for somebody that's diagnosed with ALS is three to five years after their symptoms first start. Wow. Okay. So my dad had surpassed this life expectancy.

Okay. He actually was fighting, fighting ALS for 15 years before he passed. Okay. So way longer. He lived way longer than the life expectancy. So he was, I'm telling you, he was a fighter. Yeah, I was going to say, he was a fighter. You literally took the words out of my mouth.

He was a fighter, literally the strongest person have ever met in my life. So now that he was bedbound at home, he was able to spend more time on his computer because although this disease took so much from him, he was still like very tech savvy. Like my dad was like super intelligent when it came to like computers and like making things online. So he would, even though he couldn't really like hold the mouse or things like that, he still had enough strength to kind of like drag his hand around. So he would literally use that to kind of like work on his computer, which is insane to me. He was determined to make it work. And he actually, due to this, he actually was able to.

able to make papers for people that wanted to bring their families over from Cuba. So people would literally come to a house for him to like make documents and papers for them. I know. So he was very determined to do everything that he could do despite his condition. Yeah, he didn't give up even when he never gave up. No. So he would still kind of go on the wheelchair a few times during like special occasions like Thanksgiving when he wanted to like be out of the room because he was constantly in bed like 24 seven. He couldn't go out, do anything. At this time, he actually became a citizen. So he took his citizenship test while he was bed bound.

So the officials actually came to our house, did the test. He passed. He became a U.S. citizen, well, bedbound. Yeah. With his disease. So it was bittersweet because he, even though he was a citizen now, it was like this disease stripped so much away from him. And he wanted so much from the American dream.

and that was all just taken away from him from this horrible disease that we don't know where it came from why he got it there's no cure for it we're just watching him die so that was very hard for me growing up um i used to always like compare myself in my life to other kids in my school and i would always i would always ask what does this have to happen to my dad like what did he ever do like he was such a great dad a great husband son brother everything so So I always had this like deep, like rooted anger inside of me growing up, which it's, it's not a good thing. But just seeing the kids in my grade that had parents that were able to do things for them that my parents weren't able to because my dad was sick, it made me really upset. And so growing up as a child, as a preteen, even up to my teenage years, I was very depressed because of the.

this just because I was going through so much in my home life and then having to go to school and socialize. Like nothing was going on. It took a huge toll on me. Right. Yeah. So nobody knew what I was going through because I would never talk about it. And I didn't want to make people feel upset or feel like I was burdening them with my problems. So in middle school, the ALS I spoke at challenge became a thing, which was a trend that shocked me because it was the first time that ALS had gotten exposure or attention in the way that it did just because it's a rare disease. Like nobody knew what it was. So when this ice bucket challenge became a thing, I was, I was happy about it. I was like, wow, like I feel validated. I feel like people actually

know what ALS is. And the ALS ice bucket challenge pretty much was you dump a bucket of ice cold water over yourself and you donate $10 to the ALS Association, which was trying to make money to find a potential cure for the disease. Or you can skip the challenge and donate $100. So in middle school, just because we were kids and it was a trend, the kids in my grade were starting to do this trend. So they would post on Instagram doing the challenge and then tagging their friends and it made me so mad because to them, I knew we were kids,

but it's just in that moment, it was like, okay, it's a trend. They're hopping on the trend just because it's like what's cool for the next month or so. And they're just going to completely forget about it and move on with their date. But for me, it wasn't just a trend that I can forget about in the next month. It's what I had to deal with every day that I went home. I also think from what I remember, it became like just the ice bucket challenge. Yes. Like completely.

No, absolutely. And I feel like honestly, like I'm even guilty of that because when you're telling this, like I, if you said to me, oh, do you remember the ice bucket challenge? I've been like, yes. But genuinely speaking, I don't know if I would have remembered that it was for ALS, which is actually insane to me now that when you're saying it and makes me feel like a horrible piece of shit. No.

No, I'm just saying though because, no, I know what you're saying, but I agree with you. Because people jump on these trends and because it's a trend, but they don't. But they don't even know the meaning behind it. Or it loses the meaning because it becomes such a, like, oh, dump ice on you and ask, you know, tag your friends and have them do it next. Which is wild because I really don't. Like I, I'm like curious if you would have asked me if I would, if somebody would have asked me if I would have remembered that it was for ALS specifically. Yes.

Because I really, I feel like that kind of dropped off of it and it was just like, oh, the ice bucket. Like the ice bucket challenge or just the cool thing to do. Oh, how cold can you get from this ice bucket? Exactly. Or it's fun. It became fun. It wasn't even, right. Exactly.

It wasn't even to spread awareness anymore, I don't think. Yeah, I agree. Okay, keep going. So that's why, like, as a kid in middle school, like, just that on top of me, just comparing myself to, like, all the other kids, I'm like, oh, my God, like, why, why am I going through this? And they're not. Like, it made me really just upset.

And this is what led up to my depressive feelings as I grew up and started high school. So I think my depressive feelings started in. middle school, but I didn't recognize it as depression just because you're a kid. You just think you're sad, you know, because this is going on at home. I'm just sad. But growing up and getting into high school and just feeling the feelings that I was at that time and realizing how much it was affecting me and the way that I was able to function in like everyday life, I knew that it was more serious.

So this made me want to become as successful as I can be. So at school, I would always just be an overachiever because I just wanted to be as successful as I can be in school to make my parents proud. In high school, I took a bunch of AP classes, dual enrollment classes because my whole mindset was be successful, start working as fast as you can to provide for your family and give them that American dream that they weren't able to have. So one day in high school, I actually had like just a huge emotional breakdown for the first time over this. Something just triggered me in class and I just started bawling my eyes out and that's when it really hit me that, wow, this is affecting me like way more than I would like to admit. And I got help from one of my favorite teachers at the time, which he related to what I was going through. So it made me feel it made me feel heard and validated. just because I felt like nobody else knew what was going on.

This disease is something that a lot of people don't know of. And for me, it's like my everyday life. Yeah. So that just felt horrible. And too, I think you were bottling it up for so long in trying to just act like everything's fine, everything's fine, stay strong. But you can only stay strong for so long. You know what I mean?

Eventually, it's going to come out randomly or it's during certain times. That's just, that's how it's, like we're human. You know, we have feelings we're supposed to feel. You know? Yeah. And I would just, I would try to keep it in the back of like my mind. Just like, throw it back there. Don't pay attention to it. It's easier not to think about the things that are hard until they explode. And they just come up and you can't control it. So that's when I was like, okay, yeah, like this is bad. Hospital visits became the normal for us because due to my dad's condition, he would regularly get like pneumonia and like little things like this. well, not little things, but things like this that would pop up due to his condition, him being bedbound for literally 24-7.

So just going to the ICU, the intensive care unit, that was like second nature to me. Like just going to the hospital because my dad's there just became normal. So I think I kind of became like desensitized to hospitals because I was just there all the time. And again, like I said, it was just second nature for us to be at the hospital. So because my mom was my dad's caregiver for so long, again, he was sick for 15 years with his disease and it just progressively was getting worse in different stages. So him not being able to walk to him having to use an electric wheelchair, to becoming bedbound, to multiple hospital visits.

My mom was constantly having to take care of him. And like I said, she was basically his 24-7 at-home nurse. So she had to bathe him. and again, since he couldn't stand up or walk and go to the bathroom and she obviously wasn't strong enough to lift him up, she would have to like tilt him on his side and just clean him and do what needed to be done. And this took a lot of strength for my mom and it placed so much stress on her body that she was slowly beginning to get sick as well. And this was so hard for my siblings and I to see because first my dad is sick, but then having to see, that my mom, because she's taking care of him, this is putting so much strain on her body,

she was also getting sick. And it's probably hard for her to take care of herself too. Yes. So she was actually lacking a lot of sleep because she would have to wake up in the middle of the night to, you know, help my dad. Right. So because of my dad's condition, he couldn't really move. He could just, like, move his head, move his, like, hands like this and his arms around.

But if he needed to, like, switch positions because he was uncomfortable. because he was laying on this side for too long, she would have to do it for him. If he was like itchy somewhere, she would have to do that for him. So it's the fact that he didn't even have control over his own bodily functions at this point. Could he still like talk at all?

So he could still talk. The only thing is since that disease just keeps progressing. It was like weakening his vocal ability, his vocal cords. So it was very difficult for him to talk. His talks became more of like a whisper kind of like, struggling to get the words out on top of his ventilator breathing every few seconds. So when having a conversation with him, he had to be very patient because it took a while for him

to like get his words out. So just being a caregiver in itself is a whole thing that I feel like a lot of people don't realize that it puts a lot of strain on your body. My mom was lacking so much sleep because she had to wake up in the middle of the night to help my dad. she always tells me that at this point in time all she wanted was to get sleep like that's literally all she wanted was to sleep because she was so sleep deprived and she kept getting back pains and back problems from having to lift my dad up as my older brother was growing up and getting older he became as responsible as my mom and taking care of my dad

so between the both of them they would help bathe my dad move him around do the things that he needed to do some days were harder than others there's days that he would express to us that he didn't want to live anymore because this disease had just it's taken so much away from him now that he feels like what's there to live for yeah um i mentioned american dream turned to a nightmare because that's how he would describe it as literally a nightmare for him between my mom and him they had to take care of him do everything for him. I was in high school just trying to get through all my AP classes, my doleromac classes and just try to graduate as soon as I can so I can work and help them out,

help my family out. That was always my main goal because we didn't grow up having that like normal family dynamic. My dad was sick. My parents were immigrants. So we didn't have family that lived here. We were pretty much on our own until my dad became a citizen and he managed to bring his family from Cuba over. So he brought his mom and some of his brothers. So my uncles. So they were here

now with him. And that was a very big accomplishment for him because he wanted to bring them over because he could no longer go back to Cuba. He couldn't go back to his home country because he wasn't physically able to do so. So him bringing his family was something that made him feel fulfilled as well as being there for us and doing everything he can to support us, even though he was sick. In high school, he would always buy my supplies. Anything that I needed, he would just order it off Amazon and just get it for me because that's what he was able to do. Right. So he was such a supportive father. Like everything that he could do for us, he did it. So I graduated high school with my associate's degree because I did dual enrollment at the same time. So this immediately took off two years of my

college experience. So I only needed two more years to get my bachelor's. So I was 18 years old when I applied to go to college to finish off with my bachelor's degree. And I got accepted for spring of 2020. So a few months into the first semester of college, it was March. I was about to turn 19 years old. I remember I was walking to my car because I had just finished my college classes. And I was on the phone with my mom because my birthday was in the coming up week or so. And I was like, hey, so, what are the plans for my birthday? I was planning to have like a birthday dinner with some of my friends and some of my family that could go obviously. And she said, this is a very bad timing to do this. Your dad's passing away the week after your birthday. And I just remember I just started crying because

there was talk about him. Like I said, he would mention to us that he just wanted to pass away sometimes because the disease was too much for him to handle. He was constantly in pain, constantly on a bunch of pain meds. Like he took so many medications for him to even get through the day. And there was talk that December before my spring semester, my first semester of college, that he wanted to go to another state so that they can disconnect him and basically just pass away because he was done living with this disease. So she told me that he decided that on March 19th, the week after my birthday, he decided that he was going to pass away.

And this was very difficult for me to take. Obviously, I always knew one day that he was going to die from this disease, but I never wanted to actually accept the fact. That's something that I would always just like push to the back of my head, like, oh, I don't want to deal with that. the day isn't here. Like, I'm only, I'm not even 19 years old yet. How is he going to pass away? I ended up having my birthday dinner with my friends and some of my family that could go. The whole time all I can think about is my dad's going to be dead a week from now. And I'm here smiling at this birthday cake and pretending to be okay. So I managed to get through that birthday dinner somehow. So my dad had decided to get an assisted suicide for March 19th.

So the hospital had set up the room for him. They had a whole bunch of chairs around his bed for our family to sit down. There was a woman sitting in the room playing the guitar, seeing some songs, just trying to make that atmosphere calming. But it didn't take away from the fact of what was actually going to happen in a couple of hours. So it was a very long process. We got to the hospital at 10 a.m. We were all just sitting there crying our eyes out. we thought it was going to be a quick process, but little did we know this day was literally

it was and still is the worst day of my life. It was such a long process. So every hour or so there would be a nurse that would come in and inject like a lethal dose of the medication that would help him pass on. So it wasn't just one. No. That's what I thought too. Yeah, that is that is. So it was literally the whole day like every hour or so somebody would come in and inject a little bit more, a little bit more. So my dad was like just slowly like going out of it. Just as the more like doses went into his body, he was just slowly going out of it. I remember when he was still like conscious enough to like know what was going on, we all took turns going up to him like saying our goodbyes, like saying everything that we needed to say and just hugging him. I remember when I went up to

him, he told me I'm sorry. And I said, you have nothing to be sorry for. You're like the best dad effort. Like I couldn't ask for a better father. You make me cry. No, stop. he has nothing to be sorry for you know and a part of me believes that he decided to pass on at this specific time obviously because he was in a lot of pain and he just wanted to end it but he knew that I had started college and he had that like faith in me that you're going to make it you know like you're in college now you got this you don't you don't like need me to be there for you physically because I know he's still here spiritually yeah um So we all took our turn saying goodbye to him.

A few hours went by of them again, injecting this medication into his body. And there was a point where he just wasn't there anymore. So we knew that he had gone into that kind of like coma state. We knew that he wasn't there mentally, even though his body was still there, like breathing. It was about 11 p.m. at night. So we were there from 10 a.m. all the way to 11 p.m. at 11 p.m., they finally decided to unplug him from his ventilator, which was what was keeping him alive and breathing. Since his lungs didn't work, he obviously passed, which was the whole end goal of this.

He passed away at 11 p.m. at nights. That was the longest day of my life, the worst day of my life. It was such a draining process for all of us physically and emotionally because it was like on and off again crying like is he gone is is he still there it's it's it's a weird thing it's traumatic too oh yeah so like us going into this thinking it's something that we say goodbye and they do it and he's gone but no it's the fact that he's not there anymore but he's laying on that bed and his body's still alive it's just and I was in that room the whole time because I wasn't going to let him out of my sight like I needed to see all that so when they announced his time of death I remember his body

had quickly turned blue, like his skin color had turned blue. I've never seen that before. When I went to touch his hand, it was ice cold. It's like a feeling that I can't describe and I don't want to experience it anytime soon. A few of my family members that were there, one of them actually passed out, like just fainted when that happened. It was just... It's a lot. It was a lot. Like, you can feel like just this doom in the room. Like, everyone's stomach just dropped my grandma his mom that he managed to bring when he became a citizen she was crying historically um i remember when we finally had to leave the room obviously because it had all been over she was crying and saying why are we leaving my son there don't leave why are we leaving him in

this room like just leaving his body behind pretty much so it was just very traumatic um we That night when we went home, it was such a weird feeling. It felt like a huge part of my life was just ripped away from me, which it was. That was my dad. Yeah, he was gone. Like his even, you know, his, even though he wasn't able to do certain things, he was still there. You know, so then if he's just gone, you know, you feel that. When somebody's gone, you can, you literally feel that they're gone.

Yes. And the fact that he wasn't in the room anymore. Right. And so it just, it didn't feel really. real. I went home that night and I remember I was staring into his room where he would, where his bed was. His bed was still there. He just wasn't in it anymore. And I was like, wow, like this is it. Like he's actually gone. So, um, we always knew this was going to happen. I just didn't think it would happen so soon. I thought I would be a little bit older, you know.

But again, I do feel like he felt confident enough at that point in time to pass. and know that we were going to be okay. So this literally made me, like, mature earlier than I wanted to. I became more responsible. I view life in, like, a different perspective now just because of going through these situations growing up. It made me take on more responsibility. So I did graduate with my bachelors.

I graduated in May, so a couple months ago. Thank you. I graduated and got my bachelor's and I'm only 21 years old. So that was a huge thing that I wanted to do for not only myself, but for my dad and for my family. So that was like the first step of me saying, okay, I'm going to bring this American dream and give it to my family. Even though my dad's not here anymore, I know that he's still watching over me and I know that this is what he wants. I still feel his presence. I know that he's with me, guiding me.

So now that I'm working in my career field, I'm able to do these things for my family and take my mom out, things that we couldn't do when I was younger because there was like no possible way to do so. Because of my dad getting sick and this affecting like our whole dynamic of our family, we didn't have the normal experiences that you would as a family. So because he was sick, we couldn't take those family vacations. We couldn't go to those family dinners that people would go to. We didn't really go out much at all because there was no income to do so. And I was a child, so I wasn't working yet. Now I'm able to do these things for my family, take my mom out, and it feels great because I'm able to provide for them in a way that I wasn't able to before.

I know that my dad is so proud of me that he wants me to do this for them. He left this earth with a hope of us being able to. take his sacrifice of coming to the United States and make a good life out of it because his end goal was always the American dream. Like I want to give my kids a better life. So I never want to let him down. So that's why I always just strive to like push myself further and like be as successful as I can be because he went through so much to get here. So why wouldn't I? And that's so true. And also too, obviously like I said, he's so proud of you. Um, And he always will be.

And I think, too, it seems like, you know, obviously a situation like this is extremely hard and it's traumatic. And it's all of these things that help you grow as a person and make you stronger. But it's normal to feel and it's normal to have moments where you break down. Like we're human. We're supposed to feel. And even feeling and like experiencing those emotions again, sometimes it helps us grow even stronger. You know? And it always teaches us things.

And I feel like it seems like you are. are the rock, you know, at least, obviously I don't know much about your other siblings or anything, but it seems like you really hold it together. And that's almost like your role now. And I feel like that's amazing. And not only does that make yourself proud, but your dad proud. And you really are the obviously, like I don't even think it. I know it just based on meeting you today. It's like you are going to accomplish everything that you want to accomplish. And like I said, for yourself, for your dad. And that's all that matters. And I think that even though, his story is tragic and sad.

It's like his younger life and how he got here and how hard he tried and managed to get, you know, to the United States and give you guys a better life and a better family. Like that's incredible on its own, you know, and that, that is such a powerful story. And then even hearing how strong he stayed through everything is powerful on its own. And I feel like that too. What I was going to say also is I feel like his strong. strength probably reflects on the whole family because I think when you see that, it's like it really goes to show no matter what I go through if my dad could get through this. Like I can get through

anything. Right. Which I think is, like I said, it's powerful. It's moving for especially I think for you guys and the family, but also just for people hearing it. And I, that's something that I realize too. It's like we little things in life, we can really think like our world is coming to an end and it's like, oh my God, I have the worst life and all this. But then when you really hear what people are going through or have gone through, whether that be you experiencing it and your dad experiencing it firsthand. It's like it really puts into perspective that what people really can experience and that the little things, they're really not as bad as we think. But no, I just think that you're so strong. Like I said, I think you really are. And I think that I know,

I always say I think that. I know that he's very proud of you. I'm proud of you. I think it's amazing that you came on here and told his story. You said that he wrote a book, right? He did write a book. Okay. So is that like something that people could buy and read? So yeah, he wrote this book in, I think it was 2013, 2014. So a couple years back, my mom and my brother helped edit the book.

So they published it on Amazon. Okay, amazing. So it is available on Amazon. Okay, because I was going to say, I will link it in the description because I think that would be amazing because I'm sure. Like, I just, I love. I love his story. I think that it's incredible in so many ways, like I said.

Literally, it sounds like a movie. Right. And I think that it's incredible, too, that you were able to come on here and share it. And I'm sure even just by doing that, that's just like, it shows your strength. I'm sure he's so proud of you and so happy that you're getting his story out on this type of platform and people get to hear about it. And it's just all incredible. And I'm really proud of you.

And I think it's amazing that you came on here. Of course. guys if you want to support this podcast click the survey link in the description down below