When someone famous, especially someone who means so much to so many, dies by suicide, a voice in my head screams at me to get out of my own thoughts and do something. This is the consequence of having had intimate experience with suicide. To know suicide is to be obligated forever to give witness, not just as an act of communion with people who’ve experienced something similar, but also as a sort of activism — haunt the conscience of people entertaining thoughts of killing themselves, act as a stand-in for their loved ones, show them what wreckage might be left in their wake.
Every suicide is personal. I watch as the entire internet begins talking about this thing that I carry with me every day, this thing that nags and pulls at me and that I know I’ll always feel crouching in the corner even on my best days, even when I’m mostly able to forget. And I read about the circumstances of the death of this person I’ve never met, and it’s tragic and sad in its own right, but I’m also reliving where I was when I found out that people I loved and needed chose to no longer exist. I read about the devastated family members they’ve left behind, but then, I’m also just reading about myself. And when I talk to someone about the tragic loss of this person who was so sick and in so much pain, I’m also talking about my loss and my loved ones who were so sick and in so much pain, whether anyone else realizes it or not. It’s exhausting.
Earlier in the week, a tweet from TMZ popped up in my feed advertising the suicide note that Kate Spade had left for her 13-year-old daughter. I was also 13 when I read the suicide note my dad left for me, so my stomach dropped and my pulse started to race and it felt as if I was being exposed for something I couldn’t put my finger on. But I clicked the link and I read the words and I felt sick imagining thousands of strangers reading the words my dad left for me, so I got up and went for a walk and tried to do anything I could to clear my head, but it didn’t really help. So instead I embraced it.
I don’t remember exactly when I last read the note he left me, but I know I’ve read it a lot. Hundreds of times. So many times that the paper has become worn and fragile and dotted with smudges from old tears I can’t remember. I know it mostly by heart, and it’s mostly seared into my memory, so I surprised myself when I decided to get it out on Friday and, two lines in, I wept. I’m not sure I was crying for my father, whom I continue to miss every day. And I’m not sure I was crying for my sister, whom I continue to miss every minute. I think I was crying more for the time I’ve lost to the grieving process and the laughter that used to come easily and how much more difficult I know days like this will always be.
First, NBA player Kevin Love, a forward with the Cleveland Caveliers. He wrote a very personal piece for The Players Tribune about experiencing a panic attack earlier this season, and more importantly, on how it’s tough for men to talk about mental health issues because of the ways masculinity is imposed on boys while growing up:
“Growing up, you figure out really quickly how a boy is supposed to act. You learn what it takes to ‘be a man.’ It’s like a playbook: Be strong. Don’t talk about your feelings. Get through it on your own. So for 29 years of my life, I followed that playbook. And look, I’m probably not telling you anything new here. These values about men and toughness are so ordinary that they’re everywhere … and invisible at the same time, surrounding us like air or water. They’re a lot like depression or anxiety in that way.
“So for 29 years, I thought about mental health as someone else’s problem. Sure, I knew on some level that some people benefited from asking for help or opening up. I just never thought it was for me. To me, it was form of weakness that could derail my success in sports or make me seem weird or different.”
This part, in which Love talks about getting a therapist and digging deep into his past, uncovering a trauma he never properly processed, reminded me of my friend Tomas, who witnessed the heart attack of his grandfather as a young teen. I remember Tomas tearing up telling me about it. I got the sense he never properly grieved or understood why he had to witness that event that led to the death of his absolute favorite relative.
“Telling a stranger about my grandma made me see how much pain it was still causing me. Digging into it, I realized that what hurt most was not being able to say a proper goodbye. I’d never had a chance to really grieve, and I felt terrible that I hadn’t been in better touch with her in her last years. But I had buried those emotions since her passing and said to myself, I have to focus on basketball. I’ll deal with it later. Be a man.
“The reason I’m telling you about my grandma isn’t really even about her. I still miss her a ton and I’m probably still grieving in a way, but I wanted to share that story because of how eye-opening it was to talk about it.”
Love ends with an important point:
“Mental health isn’t just an athlete thing. What you do for a living doesn’t have to define who you are. This is an everyone thing. No matter what our circumstances, we’re all carrying around things that hurt — and they can hurt us if we keep them buried inside. Not talking about our inner lives robs us of really getting to know ourselves and robs us of the chance to reach out to others in need. So if you’re reading this and you’re having a hard time, no matter how big or small it seems to you, I want to remind you that you’re not weird or different for sharing what you’re going through.”
So, I’ve been given a lot of feedback about my tribute (?) piece/obit for Tomas, as well as questions on how I’m doing. How am I doing? Not entirely sure. I get the concern, but I also want to scream: “This isn’t about me!” This shouldn’t have happened. Can we go back in time, please?
It’s still so unbelievable. I’m unable to sleep well wondering if there’s any way I could’ve known he was headed down this route.
Yet, for me, the writing made me feel like I’d done something for him, in letting folks know about what a great person he was. But I hate that this is what it is: I hate that he is no longer. It’s unfair. And I recently talked to one of his best friends in the world and that person also feels robbed. It’s just so tragic.
So I googled “Best writings on suicide” and found a great piece in The New Yorker by writer Philip Connors, author of a book about his younger brother, who took his life more than 20 years ago.
He says he’s often asked if writing the book was cathartic for him. As a published author, he said he gets annoyed at the question because “… it annexes the territory of literature under the flag of therapy. As anyone who has written a book knows, there are a thousand other, easier ways to make oneself feel better: alcohol, masturbation, adopting a dog. For ‘survivors of suicide,’ as we’re known—a phrase that I’ve always found most peculiar, as if we’d tried it ourselves but the noose slipped, the cartridge jammed—closure is little more than a neat idea.
“This is not to deny that there are private reasons, in addition to public ones, to write such a book. The private reasons involve an impulse to describe a portion of one’s experience in language that has a ring of truth, to see one’s actions given meaning and form. They involve an impulse to transfigure the horrific, the chaotic, and the merely dismal aspects of one’s experience into a compelling story with a pleasing symmetry and shapely beauty—in other words, a work of art.”
“… let’s face it: that’s why people shrink from the topic of suicide. It bespeaks a misery beyond words. We don’t have the capacity to imagine our way into it. We don’t want to hear how the suicide of a loved one elicits suicidal thoughts in those left behind, either from despair or from a desire to achieve a perverse intimacy with the dead. But most of all we’re baffled by an act that scrambles our categories of justice. It offends our sensibilities in a way that almost nothing does anymore. A crime has been committed, but the victim and the perpetrator are one and the same. That is the essential conundrum of suicide, and a good part of what makes it so hard to discuss.”
I’ve been so lucky in life to have been spared death of loved ones when I was young. This is why losing my father in 2016 felt almost surreal. He had been ill for so long, that when his battle with Parkinson’s came to an end, it was almost a relief for me to him. He deserves to rest, though I miss him dearly.
But I was not prepared earlier this week to learn a friend Tomas, an ex-boyfriend, was to take his life suddenly.
And so began my week of floating around in shock, then grief, followed by quick spurts of anger, back to thinking it wasn’t real, and long bouts of painful wondering if there was anything myself or anyone could have done. I don’t know. I’ll probably never know.
Two days later, I find I’m doing things slowly, mundane every day things—like taking a shower, when I’ll suddenly freeze to think, “I am bathing myself because my body is alive. He isn’t going to be able to do this anymore. He is no longer alive.” And then tears. It’s almost like I’m trying to convince myself.
That young people have to deal with this in high school and college is shocking to me. It’s hard to function without your thoughts turning into grief, disbelief, and again the overwhelming thoughts of wondering and guilt.
I was fortunate to have found out about this terrible news while I was on my way to the apartment of some very dear friends for some cod soup. They knew him and loved him, too. I cannot thank them enough for being with me that night.
In the days since, I’ve talked to my closest friends and family about this and they’re all concerned about me. That’s understandable, and I’ve been checking in with them and vice versa as my feelings continue in that cycle: shock, disbelief, grief, anger, guilt, wonder, utter sadness, and more sadness.
Why? Why did he do this? Again, I will never know the answer to this. But could I have?
After more than a year of not speaking or keeping in touch, as is the norm between some, if not most, former romantic partners, he reached out to me out of the blue. He said he was thinking of me and wanted to catch up. And so we did, on a quick half-hour car ride from Jersey City and Edgewater.
I knew he was in a relationship, and he explained it had recently ended. His living and work circumstances had changed, and he was “down in the dumps” about it, but continued to smile, saying he had his health, hadn’t been missing any meals and he’d rebound. I agreed. I always saw him as an incredibly intelligent and resourceful person who could do anything. I even texted him something to that effect after he dropped me off.
The next morning I texted him to have a great day. He wrote, “Good day to you.” And then I never heard from him again. I sent a couple more texts about things like an issue with my car throughout the week, and figured they went unanswered because he was busy. Or back with his ex-girlfriend. He didn’t get into details much but he gave me the impression the relationship was somewhat tumultuous. So, again, him not responding wasn’t odd as we hadn’t keep in touch on a frequent basis.
Then exactly one week after to the day that I saw him last, I learned of his fate.
I’ve been looking through old photos of when we were together and it’s, at times, overwhelming, but it also reminds me of the many good times we had. And so I wanted to document some of the great things about my friend, Tomas.
Tomas Lopez Jr. 12-14-68 – 02-26-18
A tall and calm presence, Tomas loved cars, and was adept at fixing and customizing them. We constantly talked about them when we were on the road. He loved motorcycles, too, especially his Harley Davidson V-Rod motorcycle, which he cleaned lovingly on a frequent basis using things like Q-tips and toothbrushes.
Tomas was also a fan of boats, speedboats in particular, as he had recently spent some time in Florida with a friend who owned one, and took it to Miami Boat week. Tomas knew how to drive and maintain boats. He also had a small engine pilots license.
I met Tomas in 2015 in Puerto Rico, where I was spending a couple of nights before boarding a ship for a cruise with one of my girlfriends. We all spent a fun day at the Luquillo Beach, and he then insisted on taking me to see El Junque, the rainforest in Puerto Rico. I’ll never forget that fun drive to such a beautiful place I’d never been to before.
Tomas loved hip-hop music, electronic dance music and salsa, but not dancing to it. As of late, he told me he had been listening to Puerto Rican trap hip-hop artist, Bad Bunny, who I don’t listen to much, but whose song “Amorfada” makes me cry when I read the lyrics because I imagine they resonated with him.
I will always treasure the fact that I got to take him to see some independent Latin music artists, such as Making Movies performance at SOBs, that literally made him tear up. When I asked him why he was emotional, he said it was so cool to see young talented band doing what they loved, as learning an instrument to play music was something he didn’t have the opportunity to do as a kid.
Something Tomas did do as a child and up until his young adult years was practice karate. Although exercise was not something he did when we knew each other, he told me he spent years going to tournaments on weekends, competing on behalf of the karate school he trained at.
Tomas loved going to marinas and seeing not only boats, but the river or sea. He also knew a great deal about recreational vehicles, as I found out on a trip with him to the Pacific Northwest. We stopped at a RV dealer and I saw his face light up every time we checked one of those luxury vacationing vehicles out.
Tomas loved to watch CNN, HBO’s Bill Maher, and Viceland’s Action Bronson and Weediquette. He followed the 2016 presidential election season with great interest and we discussed it nearly every day.
Tomas was not a fan of trying strange or exotic foods. He was a fan of steaks, chicken, and potatoes, and old-fashioned Puerto Rican dishes. He liked Cuban and Middle Eastern food, too. And at Dunkin Donuts, he always ordered a decaf tea with a chocolate glazed donut, BUT NO SPRINKLES. (It was funny when they’d mess that part up. He’d be so frustrated!)
He loved to travel, and had spent some time working for Delta airlines before I met him. Going to Puerto Rico to visit his grandmother might have been one of his favorite things to do.
Tomas was a polite and friendly person who could strike up a conversation with anyone he encountered. Taking him to work or music related events was always easy for me because I knew he’d get along with anyone I introduced him to. He always won them over with his charm.
Tomas was not a fan of sports. But he did have a great time following the 2016 Copa America with my brother and I and even joined us at a game the Colombian National team played at MetLife stadium.
And that’s because he enjoyed doing things he had never experienced, whether it was going to a museum, or an independent music festival.
I’ll never forget the way Tomas looked at problems. He was a fan of Eckhart Tolle, and recommended I read “A New Earth” when I was going through a particularly rough time with my father’s death and some other things and it seemed that every day annoyances or problems—no matter how small—annoyed me.
I’m not going to lie, I didn’t take to Tolle’s words then, and it was only after broke up and I experienced depression and sought help for it that I started reading authors similar to Tolle and understood what it was about. But a book is a book, and its themes can be fleeting if one is depressed. I wish I could tell him that today.
One new hobby that Tomas picked up in 2016 was photography. He bought a Canon Rebel and took to it immediately, eventually buying a drone to shoot photos and videos when he was on his friend’s boat. He meant to show me some of the footage but we never got around to it.
I’ll always remember his strong laugh, super smile, sense of humor and the ease in which he talked to strangers, as if they were old friends. It hurts so much that someone who caused others to smile so easily must have been experiencing enough hopelessness or sadness that it caused him to take his own life.
May you rest in peace, Tomas. You will be very missed.
Had to share this blog post via Yoga with Jaimee as it resonated deeply with me for a few reasons:
A few weeks ago I snapped this photo outside of my sister’s house, and shared it on social media.
I captioned it with this quote: “the trees are about to show us how lovely it is to let dead things go.”
The phrase “let it go” used to really irritate me because I didn’t know what it meant or exactly how to do it. And there are times when I still struggle with it a lot.
As an analytical person, I need visual aids and practical steps to help me understand and accomplish things. It’s the virgo in me. I prefer finding ways to compare those lofty ideas with things I can really wrap my head around. In my mind, I connect the act of letting go to that time I was finally able to release both hands from my handlebars while riding my bike. And yes, “letting go” is what happens when I frantically drop a hot pan on the stove after realizing one of the oven mitts has a hole in it. That’s some serious let go if you’ve never experienced it.
But the kind of letting go that involves a conscious choice versus a physical action, can be extremely challenging and scary. It can also be painful as hell if it’s not something you’re ready to do: especially if your heart and mind are singing two different songs. Letting go in this sense is releasing all doubt, worry, and fear about a situation, person or outcome. It’s releasing anything that disrupts your happiness and no longer serves you on your journey.
Letting go is a choice to decide that you will no longer ruminate on things that are out of your control, and focus on what you can control, instead.
Letting go creates space for fresh beginnings: stripping you of what happened yesterday, and enabling the doors of brand new opportunities to open today.
Letting go is about accepting what is happening right now and not worrying about what will come up tomorrow.
It involves much more than just saying you have let go. It’s an internal process that must happen for you to truly feel better and get on with life in a healthy way.
Throughout this year, I’ve been having lots of conversations with people and reading an assortment of spiritual books on exactly how to let go. I’ve come up with these five steps that helps me better understand how to do this thing and could possibly help you too:
As a gentle reminder, it’s important that we honor where we are on our individual journeys of letting go. This is a process that may be more challenging for some than others. Know that wherever you are right now, is okay.
1) Mind control–The human mind is the most complex tool we own and can either be our biggest ally or worst enemy. Having the power to let things go starts there. Making an intentional choice to no longer let past issues and people who hurt us control the mind is what can break the cycle of unhealthy rumination on these thoughts, ideas and feelings.
For me, what ends up happening when I let my mind go down the dark road of rehearsing painful experiences is I began to create a story about myself that typically follows the lines of “I’m not good enough”, “I’m unlovable” and “no one cares about me”. The more I think about it, the more my mind creates space to allow feelings of hurt, anger and frustration to fester and completely ruin my mood.
Although I’m still working on this, it’s important to constantly be in observance of your thoughts without attaching yourself to what it is you’re thinking. The reality is your thoughts don’t define your value. You are not the summation of your past experiences. Just because something doesn’t work out, doesn’t mean you are now labeled as a failure or you’re incapable of receiving what you desire in life.
The more we can simply watch our thoughts come and go without attaching our identity to them, the easier letting go becomes.
Thoughts are nothing more than thoughts. What we decide to do with them is what can either make or break us.
2) Getting it all out–Having the ability to express your emotions in a healthy way is another step to processing things before deciding to let them go. As a writer, this is also a must for me because it serves as a form of catharsis and creative release. I like to spend time journaling out my thoughts and emotions. While obsessing over the details of what happened in the past is never the healthy route to take (we all do it), it’s important to analyze why you’re feeling a certain way, and how you can show up differently the next time.
There are so many breakthroughs to uncover through self reflection. Other ways to express yourself include talking to a trusted friend, family member or therapist. I have discovered that seeking out counseling is one of the best ways to receive objective advice and support throughout my journey of healing and learning to let go.
Sometimes, friends and family sit so close to a particular situation that they’re unable to provide unbiased support the way in which you need it. And, sometimes they don’t always offer the best advice. Sometimes it’s not always that easy to let something go. Especially if there are old narratives that are lodged somewhere in your subconscious mind from previous experiences.
When we continue holding on to grief, anxiety, pain, and resentment from the past without fully working through each situation, all of these experiences, patterns, and narratives accumulate inside the heart, making it even more difficult to let things go. When this is the case, it’s so important to seek out therapy to help you work through and heal from the inside out.
3) Acceptance–We all want to know why something ended the way it did or how someone could end up hurting us so badly without having any concern about how it negatively impacted us. We believe that we deserve the right to these answers. We want some level of understanding. The painful truth is, we don’t always get that “closure” we think we ought to have.
Not everyone will explain why they did something or even apologize when they are at fault. And I know firsthand that this reality stings a lot. Like someone pouring salt in an open wound. Not getting solid answers and having to move on with life without closure is no fun, but it’s something many of us have to do at one point or another.
Fully accepting the situation as it is without constantly wishing it would be different is really the only way to getting on the road to being okay. And this isn’t only about accepting situations. We have to start accepting people for who they are as well and believing them when they show us their true character. Because they aren’t lying.
4) Forgiveness–To truly let go and move on, sometimes you have to forgive people who aren’t even sorry. Sometimes you have to accept an apology you’ll never receive. That takes so much strength and courage and humility. While it may seem unfair and backwards, sometimes, that’s how the chips will fall. There’s nothing worse than holding onto resentment about someone or something for years, while they happily move on with life.
And the reality is, doing this only hurts you.
The most important thing is that we also have to learn to forgive ourselves. This can be done by writing a letter to yourself, replacing self-loathing with compassion, and deciding to make better choices next time.
5) Stay present–The present is all we have. We can’t go back and fix the past, and what happens in the future isn’t here yet. We must make an effort everyday to remember that and allow ourselves to open up and enjoy what is unfolding right in front of us: all parts of the journey both easy and hard, good and bad.
A friend of mine once said to me “you are right where you are supposed to be”, in the midst of a very rough season. My initial reaction back to that was filled with frustration and confusion. I didn’t want to accept the fact that he was probably right. Because life is full of so many teachers and lessons. Sometimes you will be the teacher, and other times you will be forced to learn a hard lesson. This year has found me in the role of the student on so many occasions: pushing and encouraging me to let go of old narratives and painful pasts.
This year has inspired me to work harder at letting go of self-loathing, insecurities, hurtful people, unrealistic expectations and timelines, comparing myself to others, and obsessively worrying about things far beyond my control.
I owe it to myself to be more kind to me.
Everyday, I am consistently reminded to embrace the present and all it has to offer: a new opportunity to begin again. No matter how much I may stumble on this journey of letting go, the present is always here to remind me that I don’t have to stay stuck on yesterday, or worry about what will happen tomorrow.
I trust that this opportunity is open for you to receive it too.
Everyday we have a choice to keep holding on just a little bit longer, or conclude that today is the day we will finally let go.
*If you were inspired by this post, please share it with a friend who could also benefit from it.*
P.S. What is something you are working to let go of this season?
So when I saw this #longread about loneliness and how it seems to affect men more than women, I wondered, could there be a connection? Were these men who killed their partners afraid to lose their confidants? The women they considered to be their only friends?
Here are the paragraphs I found most interesting in the piece:
It starts young: One avenue into understanding men’s loneliness is to consider how children are socialized. In an interview, Niobe Way, a professor of developmental psychology at New York University who has been doing research with adolescent boys for almost three decades, talked about how we are failing boys. “The social and emotional skills necessary for boys to thrive are just not being fostered,” she said in an interview. Indeed, when you look at the research, men do not start life as the stereotypes we become. Six-month-old boys are likely to “cry more than girls,” more likely to express joy at the sight of our mother’s faces, and more likely to match our expressions to theirs. In general, before the age of four or five, research shows that boys are more emotive than girls.
The change begins around the time we start school: at that age—about five—boys become worse than girls at “changing our facial expressions to foster social relationships.” This is the beginning of a socialization process in “a culture that supports emotional development for girls and discourages it for boys,” according to Dan Kindlon and Michael Thompson. This begins to affect our friendships early—in a study in New Haven, Connecticut, boys aged 10-18 were significantly worse than girls at knowing who their friends were: “over a two-week period, the boys changed their nomination of who their best friend was more frequently than girls, and their nomination was less likely to be reciprocated.”
And the teenage years are when it gets sad, IMO:
However, for many boys—Way calls it “near-universal”—a shift occurs in late adolescence, roughly from the ages of 15-20. In a phase of life we often think of in optimistic terms—self-discovery, coming of age—boys’ trust in each other shatters like glass. Three years after his first interview, Jason, asked if he had any close friends, said no, “and immediately adds that while he has nothing against gay people, he himself is not gay.” Another boy interviewed by Way in the eleventh grade who up until the year before had maintained a best friendship for ten years said he now had no friends because “you can’t trust nobody these days.” In interviews with thousands of boys, Way saw a tight correlation between confiding in close friends and mental health, and she observed that, across all ethnic groups and income brackets, three quarters of the boys she spoke to “grow fearful of betrayal by and distrustful of their male peers” in late adolescence, and “begin to speak increasingly of feeling lonely and depressed.”
Making matters worse, in the middle of this estrangement from other boys, as we’re becoming young men, we’re governed more than ever by a new set of rules about what behaviour we’re allowed to show. Psychologists call them display rules. “Expressions of hurt and worry and of care and concern for others,” according to white high schools boys, are “gay” or “girly.” Black and Hispanic boys, according to Way’s interviews, feel pressure to conform to even stricter rules. Men who break the rules, and express “sadness, depression, fear, and dysphoric self-conscious emotions such as shame and embarrassment” are viewed as “unmanly” and are comforted less than women. Way told me when she speaks in public, she often quotes a 16-year-old boy who said, “It might be nice to be a girl, ‘cause then I wouldn’t have to be emotionless.”
What about young adulthood? Young guys hang out a lot? Can’t be so bad, right?
And yes, entering adulthood, and up to the age of 25, men and women do have approximately the same number of friends. For the outsider looking in, then, and even for the man himself, it may appear that nothing’s amiss. But to paraphrase University of Missouri researchers Barbara Bank and Suzanne Hansford, men have power, but are not well. In the UK, suicide rates among men are steadily rising. In the US, so is unemployment among men, often coupled with opioid abuse. In a 2006 paper addressed to psychiatric practitioners, William S. Pollack of Harvard Medical School wrote, “present socialization systems are dangerous to boys’ physical and mental health and to those around them, leading to increased school failure, depression, suicide, lonely isolation, and, in extremis, violence.” In a study Pollack did of boys age 12-18, only 15 percent of them projected “positive, forward-looking sentiment regarding their futures as men.”
“What is wrong with men,” Bank and Hansford asked, “that they can’t or won’t do what they enjoy to the same extent as women do?” In a study of 565 undergraduates, they investigated. Six possible reasons why men shut each other out were measured by questions like “how often [the subject] and their best friend showed affection for each other, had a strong influence on the other, confided in the other, and depended on the other for help.” The worst offenders? Homophobia, and something they called “emotional restraint,” which they measured by responses to statements like “A man should never reveal worries to others.”
From the vantage point of adulthood, especially in progressive circles, it’s easy to forget the ubiquitous and often quasi-ironic homophobia of teen boys, which circulated among my guy friends. That’s why it was amazing to read Dude, You’re a Fag by C. J. Pascoe,1 who spent a year embedded in an American high school divining and taxonomizing the structures of teen male identity in intricate and systemic detail. She concluded that “achieving a masculine identity entails the repeated repudiation of the specter of failed masculinity”—in other words, boys must earn their gender over and over again, often by “lobbing homophobic epithets at one another.”
Christmas will never be like it was when I was a little girl. This is a post about how it used to be, and how things have changed. Lots go through it, and now it’s our turn.
When I was little, we didn’t have much — I will never forget one Navidad in particular in which my dad gave my brothers and I $3.00 each in a white letter-sized envelope. I wasn’t sad about the lack of toys for gifts, but felt awfully embarrassed for my father and told him it was OK. But it was awkward. I recall vividly that he handed us those envelopes on our way out to visit with family. We stuffed our stash in our rooms and piled into the car. The holidays were here and we were going to have a good time as we knew how!
Christmas time was filled with a jolly (yeah, that word describes things perfectly) times with our small, yet close, family.
My tio Raul (my father’s older brother and without question the uncle I was closest to) and tia Yolanda were always a part of it, as were my (distant? Not really, try super close!) cousins, Maria and Susy, whose mother, Mari, was my tio Raul’s sister-in-law. My aunts on my mother’s side (Mirta, Nina, Chiqui), their children/my cousins, and my maternal grandmother (abuela Esmeria) would get visits from us, as well. Gifts weren’t aplenty, but food was cooked with love, Colombian music—courtesy of my dad’s record player—filled the living room, and good times were had.
As we grew older, most of the family moved away to warmer climates. My father was diagnosed with Parkinson’s in the late 1990s and things haven’t been quite the same every since. My maternal grandmother, now in Miami, would go on to develop Alzheimer’s, and later, my tio Raul, also in Florida, would find out he, too, had Parkinson’s.
Somewhere in there, I was married, then dealing with the spouse’s alcoholism. Then I was separated, and divorced. Throughout it all, there were no tears on my part, only would’ve, could’ve, should’ves. It’s like I lost my ability to feel.
Cousins got married, some moved away, and, as happens, life gets in the way. There are work and parenting commitments, as the next generation of children have to be raised, and so, not surprisingly, intimate family gatherings hardly take place.
Today, Dec. 23, marks four years since my tio Raul passed away due to Parkinson’s disease related complications. I got to see him at a nursing home a few months before he passed, and, honestly, I know he’s in a better place today. I miss him terribly, but Parkinson’s can be an awful disease. I say can be, because I acknowledge there are other illnesses that are much, much worse.
But Parkinson’s eventually imprisons one in their own body. It starts with nerves and muscles, but eventually takes your voice. I remember when I visited him, I could hardly hear him. I kept a happy face and joked around, as I always do, but it is awful to see. I didn’t want him to feel that way.
Meanwhile, back home, my father was still as stable as the Deep Brain Stimulation surgery he had in 2006 could keep him. He hadn’t had the Parkinson’s tremors in a long while, but his voice and ability to speak were eroding, and rigidity was taking away his independence via walker. He became wheelchair-bound, but he was home for every holiday.
“People think they’re supposed to be happy during the holidays. This is supposed to be a time of sharing with your family, of positive relationships, of celebration and joy,” Cataldo said. “Many people feel alienated, because they’re not in that space, and that idealized image of the holidays only makes them feel the lack of those things more acutely.”
Two thousand fifteen has been a tough one for our little clan. My father fell and broke his hip on Jan. 21, 2015, and was in and out of hospitals, knocking on death’s door at least three times through March. Since then, he’s been in a nursing home, and it’s not easy. Sure, it’s a facility that can serve his needs 24/7, but this comes with much advocacy from us. You have to be there to make sure he’s not neglected. Any sign of a temperature or low blood pressure can spell trouble. A very bad bed sore he developed in February is only now showing signs of progress. (This after I had a very honest discussion with one of his nurses, who said he’s probably go to the grave with that wound. It wasn’t harsh; just real.)
In late August, I had to put my best friend, my 14-year-old black lab mix, Skunky, down. A cancerous tumor forced me to put him down and I still can’t believe I live without a dog!
Thanksgiving was sad, but no one talked about it. In addition to the fact that my older brother, wife, and nephew moved down to Orlando, the house was quiet. My mom and I visited my dad in the late afternoon/early evening. My younger brother stopped by as late as visiting hours would allow. Out by 8 p.m.
My younger brother’s girlfriend’s mom and brothers came over, which was nice, but it was very low-key. When the patriarch of the family isn’t around, and can’t even eat due to Parkinson’s related swallowing problems, it’s just sad.
To make things worse, we have not quite dealt with our feelings. In one of the bad hospital stays, where a very bad pneumonia caused ICU doctors to have to intubate him, and even insert an I.V. of antibiotics through his carotid artery, my mom and I cried a little, but something about our family of five prevents us from outwardly displaying our fears and general grief. Again, it’s like we’ve lost our ability to not be numb.
There are frequent spats between us, about who doesn’t visit, or visit enough, and the person who is doing the most, of course, is my mother. She is trying to live her life, joining a YMCA and attending classes, and doing better at not spending all day at the nursing home, which is draining.
It’s draining because my father tries to speak to us and we can’t understand him. It’s draining because there are so many residents who don’t get visitors and look to you for any little conversation. It’s draining because there’s a certain smell, a certain way the staff there is overworked and stressed, and, most of all, because we know he’ll be there for the rest of his life.
It’s also disheartening to recently read about nursing home employees sharing pictures of themselves mocking or abusing patients on social media. It just adds to my guilt that I need to be there more. Working in New York, living across the river in Jersey City, and having to drive further north to the home in which my dad now lives.
There’s a lot of wondering what life would be like had he not gotten sick, or remembering what he was like before he was diagnosed. It’s pointless, but it comes up in conversation a lot when we get visitors.
I think a lot about possibly getting Parkinson’s myself. I dream vividly; I always have, but telling my mother about how it can signal Parkinson’s really upset her. But I’m just being realistic about the fact that it can very much be genetic. I spend a lot of the time at the gym because of this, since exercise has been shown to slow the progression of the disease, something we did not know when my dad was first diagnosed.
I was never really big on winter holidays. I always liked the Fourth of July and summer in general. I dislike the cold, the dark coming early, and having to stress out about gifts. But we’ll do it. Christmas will be fine, but figuring out how to be with my dad when the clock strikes midnight on Jan. 1 is another hurdle. (We’re not sure if visiting hours will be strictly enforced or whether we’ll disturb his three roommates.)
If I could have one wish for 2016, it’s that we deal with this better. It doesn’t seem like my younger brother and I have time for support groups or therapy with the full-time jobs and side gigs, and having to drive to visit mom and dad. But I’ll suggest it. We’ll see.
I am EMPHATICALLY grateful that my father is still with us. He doesn’t seem to be in pain many times, but as his nurses aide sometimes says when I’m in his room with her wonderful Haitian accent, “He seems miserable.” (I think it’s more aches that come with being bed-ridden most of the time.)
Once again I find myself at a point in time when something has to be decided on regarding my dad’s care, and I’m still incredulous at the reality that he has to be cared for at a nursing home. At a nursing home!
As I’ve stated on this blog before, living in a home was a thing of the movies, or the soap operas I’d watch as a tween on summer vacation. You know, uber wealthy soap opera family puts grandma away so they can start planning how to get all of her money, stocks, and high-end art. It’s certainly not something our family would ever do. But here we are.
My father gets his nutrition (and Parkinson’s medication) through a peg tube. He receives nebulizer treatments three times a day. He is wearing a catheter because, as he is incontinent, urine could make the bed sore he has on his sacrum that much worse. Oh yeah, he’s wearing a vac machine to drain the wound. It’s a lot.
But it gets worse.
As physical therapy pointed out to us last week, the regimen they have for him isn’t showing any improvement. And then came the warning: insurance is going to cut this plan of care.
So now the social worker at the nursing home (review to come later; I’m not happy with several things about the culture there) is trying to find a long term care facility that will accept my dad’s health care insurance (an Aetna plan administered via the Medicare program. It’s not the best, but it’s something).
I asked physical therapy if there’s any way we can get a wheelchair so we can take my dad outside when the weather warms up. (This weekend, we’re supposed to get above 60-degree weather!) They stalled (as usual) with an excuse about having to order it. But the thing about this experience is that it has made me a major league demanding (yet nice; no yelling!) bitch when it comes to my dad’s care at that facility. So, it’s GOING to happen. I don’t care if I have to make 100 phone calls and knock on every single administrator’s door.