Rainy days feel particularly hard. All I can do is think of my dad’s body underground, outside in the rain. I don’t think about that aspect of death often but when I hear the rain as I sleep, I think of my poor dad outside in the cold, in the dirt, as the rain pounds on his helpless body. I think of the trees above his grave, how he loved trees. He used to take us to the woods when other kids were getting taken to the mall and he would tell us about the different kinds of trees and why one was more spectacular than the last. We would run through the trees, behind our neighbor’s house, ducking and pushing each other to do one more mile. We felt like champion racers the two of us, dipping and bending and sprinting amongst the squirrels and deer and occasional motor bikes that he hated. But he loved the trees. The two in our front yard, he meticulously trimmed and shaped and watched me climb. He strung Christmas lights on them until his hands turned blue because he knew my mom loved them. He started a competition with our neighbor to see who could string them first every year and wrote letters from the “electric company” telling my neighbor that his rates were lower because of how long it took him to put up the lights. He made mundane magical. He made dreary dreamy. On rainy days he would go outside on the porch and watch. He loved watching the rain drop and the lightning strike and the sky open in front of him. When other people closed their windows, he broke the doors down. He was about life. He saw that life was happening and he didn’t let it go unnoticed. If there were rivers, he swam in them. If there were hills, he sprinted up them. If there was snow falling, he stuck his tongue out like a kid and felt it turn to water in his mouth. And on a rainy day, I ache for him. I am in pain knowing that he is trapped underground while life is happening up here. There are still mountains he hadn’t climbed, monopoly games he hadn’t won, hugs he hadn’t gotten. There is so much life up here to be had and there are days where I don’t have any of it and I know he would’ve and I am mad at the world that that’s the case. I’m mad that he is underground and I am up here. I am mad that I’ve grown two years bigger and he wasn’t here for any of it. He won’t be here for any of the next ones. Every day that passes is a day he becomes more one with the earth and I hate it. He lives in my heart as a giant. A man who saw a day as a challenge. Who saw each rainstorm as an invitation to feel the sky. He didn’t believe in bad days. He got laid off after working at a company for two decades and came home and told us we were going on vacation. He believed in life. In the gorgeous, lucky gift of life that we get to touch every morning and hold every night. He would get mad and he would get sad and he would get disappointed but he wouldn’t let those emotions win. He fought the bad with the present, with the gift of tomorrow and another chance. Another path to take to work, another bakery to explore, another game to invent. He made us all feel alive and now he’s dead. And he is buried and on a rainy day I cry and shake and think of my gorgeous, vibrant dad gone, underground. I want to rescue him and bring him back up for air and let him play with life once more. I ache for his company. I forget what it feels like to know I can go home to see him there. I forget the light that poured out when he opened the door. I forget feeling whole and hearing the rain and knowing my dad was on a porch with a mug of coffee milk watching it. I remember him. I remember him when it rains but I am mad that it’s just a memory of him that I can hold. I want it to be a hand but it’s not. On rainy days, I find myself opening windows. Walking outside without an umbrella to feel what the sky’s water feels like on my body. When it rains, I listen to the drops hitting the cement and I hear how beautiful it sounds. I find no comfort in thinking of my dad being trapped underground during a rainstorm. I would do anything to have one more stormy night, sitting in the family room, listening to the claps of thunder, playing cards and staying up later than we should’ve but holding our breath hoping the other person wouldn’t call it a night so we could avoid another beautiful day ending. There is no comfort in never having that again. But there is comfort in seeing the rain and going outside and feeling it on my skin and knowing it is what he would have done.
See full post on Manifest Station: http://www.themanifeststation.net/2017/09/15/19785/
"Assuming I was promised a century, I never worried about wasting a decade. Watching my father die changed that."
Full article here: http://modernloss.com/year-dads-death-best-life/
This past year and a half has been dedicated to my dad. Our intention every day was to make dad comfortable, loved, safe, excited, and held. For a year and a half, we have been holding my dad. From the initial diagnosis to the relentless treatments to the devastating results to the slipping out of this universe to the celebrating his life to the mourning his death, we have held our dad. We continue to hold him every day. Sometimes holding him makes me feel less alone and sometimes my arms gets so tired that they feel the will give out. But I will continue to hold him because that is where he lives now. In my arms. In my brother’s arms. In my mom’s arms. My mom’s tired arms. My mom’s arms that have held my baby brother until he was old enough to walk and I hopped right into them. My mom’s arms that have held baskets of grass-stained laundry and bags of fresh ingredients to make ziti-bake before track meets. My mom’s arms that have held my crying head. My mom should be weak and beaten down after a lifetime of a giving and a mountain of loss. My mom should be weak after caring for her mother until she died, caring for her father until he died, caring for her husband until he died. She stayed in bed with my father for 7 days straight while he was in a coma. She told him it was ok. She held him. She should be weak from watching her father and husband die in the same room. But she sleeps in that room. She gets up every morning and lives. She holds others who are in pain. She takes care of an entire house on her own. A house that once filled her mother, father, husband, son and daughter. None of which live there anymore. She cares for the house and the people who once lived there just the same. She remembers. She honors. She is still my rock and source of comfort and identity. She brings me my beloved foods to NYC. She gets on a train by herself and makes her way through the hell of Penn Station and trudges with bags filled with goodies to my apartment and she cleans it. She makes my bed. She leaves me notes. My mom should be weak. Her arms should have given out. She should be held. But she keeps on holding. She holds tighter. She walks to the cemetery on her own every day to see my dad. She isn’t afraid of the pain it will cause. She doesn’t tell people she is ok. She is not afraid to be vulnerable. She is not afraid to be anything. She is fearless and strong and she should not be. She shouldn’t have to be. She should get to crash and to be weak and to be held. But instead, she fights on. She doesn’t get told how wonderful she is enough. There aren’t as many people as there once were to tell her that. But they know it as I know it. They know what an amazing woman they created, what an amazing woman he married, what an amazingly strong woman they love. Some days I feel like I can’t carry on. Like I can’t get my exhausted body out of bed. Like I can’t possibly face the cruel universe that ripped my heart from me. So many days I wanna give up. Give in. Let my arms fall to my sides and surrender. But I think of my mom. I think of her arms. Of what she has endured and the battle she fights every fucking day. I think of her arms. And those arms lift me up. They get me out of bed. They give me the strength to stay in the war. They hold me. My mom continues to hold me. And I would’ve fallen long ago without her. Happy Mother’s Day, mom. You are amazing.
Every Christmas, my family split up gift giving into three categories: creative gifts, big gifts and stocking gifts. One year, my dad had been assigned me for “creative gift” and my brother for “big gift”. We opened the big gifts first and Mark unwrapped an enormous flat screen TV. I then opened my creative gift from him and it was a homemade shadow box with a miniature snowman, Christmas tree and the words “I loved her first”. It was a lyric from this country song about a dad giving his daughter away at the alter that reliably made my dad ball his eyes out within the first few words. I chastised him relentlessly about that gift. I thought it was so absurd because 1. I wasn’t getting married. 2. I wasn’t in a relationship. 3. A shadow box?! The joke went on for years about how his gift for me was so ridiculous and how his gift for Mark was so extravagant.
My dad passed away this past October of an ugly form of brain cancer called glioblastoma. Today is Valentine’s day and I can’t call him. So instead, I am clutching on to those words. I am holding them as a reminder that even though I can’t touch him, my dad loved me first. He was the first man to look me in the eyes and tell me I was the most beautiful, wonderful, and capable girl in the whole world. He was the first man to celebrate my shortcomings and emphasize that being weird was so much cooler than being a cheerleader. He was the first man to laugh at my jokes and make me feel like the funniest person in the room. He was the first man to hold my hand. He was the first man to ask me to dance. He was my very first love. I miss him so painfully much. I wish I could dance with him or hug him or have him remind me that I am his girl. But I can’t do that and it makes my heart hurt. It makes my eyes wet. It sucks.
But amidst the pain, what I gratefully can do is close my eyes and feel him inside of me. Hear him telling me those things. Look at that dumb shadow box and listen to that dumb song and remind myself of his unending love. He loves me today more than ever. And if I focus hard enough, I can really feel him. And I can feel lucky that I still have that love. Feel lucky that that kind of love doesn’t go away with a body. It stays with me, I’m built from it. I’m made up of that kind of mighty love. The biggest gift my dad gave me was the truth behind those words. He gave me a lifetime of adoration. He gave me the love he told me I deserved. He wouldn’t let me get away with settling for anything less than that.
I once thought I was in love with a boy who treated my heart like garbage and I still remember my dad calling me and quoting Abraham Lincoln saying
"... Whatever woman may cast her lot with mine, should any ever do so, it is my intention to do all in my power to make her happy and contented, and there is nothing I can imagine that would make me more unhappy than to fail in this effort."
He told me to not waste my time on anyone who fell short of that. And he shouldn’t have even had to tell me that because that is exactly how he loved me. He did everything in his power to make me happy: he dedicated his life to raising me, he drove me around the block before my birthday parties so I could wait to enter until the guests arrived, he helped me move five times in two years, he talked me down from panic attacks, he never told me no, he prepared me for every job interview, he stayed up past midnight when he had to wake up at 6:00 for work to play a backgammon tournament with me, he slowed down while running so I could keep up with him, he always made time for me, he always supported me, he always believed in me, he always loved me.
Today feels impossible because I just want to do those things with him again. I want to feel those things first-hand again. I want more time. But I feel so lucky for what I do have because I think that is more than most people ever get. It’s more than I deserved. And I still have it. And it guided me to find my boyfriend who treats me that same way. Who holds me and supports me and stays up for me and prioritizes me and believes in me and loves me the way my dad did. That’s my dad still here with me. That’s a continuation of his love. And I’m so lucky to have that. I’m lucky to have grown up with that kind of love and to feel worthy of it and to find it again. I feel loved today. I feel sad and nostalgic and heartbroken but I feel incredibly lucky and immensely loved.
Today I had an EKG, an echocardiogram and maybe three pounds of blood drained from my fragile body to investigate a newly discovered heart murmur. My body has taken a hit this year. The stress and sadness has worn on me, exposing my weaknesses to predators who have slowly seeped in and settled down. I don’t feel well. My head pounds, my leg limps, my heart hurts. Of all the soreness in my body, this heartache is the most unsettling. I don’t know anything about biology. I switched majors four times until I settled on psychology to try to self diagnose- a very expensive therapy session. I don’t know much about biology but I can’t help but feel that my heart is broken. My heart has spent most of its life protected in a box but on occasion, it snuck out and was cracked. From those shadowy experiences, I’ve learned that there is no complete healing of a broken heart. There is a dawdling passing of time. There are adjusted levels of happy. There are different people. But there is never a full recovery because that’s what makes love, love. The repercussion of fully letting go is never fully coming back. It’s always hard to be back but how plain would it be to have never gone. But oh boy the throbbing that comes with being back. I think the most defining ache of heartbreak is the emptiness. That painful feeling of every minute. Of never getting that person back. Not the person you lost but the person you became with them. That third person who exists in between you two that only breathes when you’re together. That gorgeous, comfortable soul who is brought to life by two fused hearts. When a heart is broken, that third person is forever gone. You can occasionally reconnect with the distant human but you can never get that third person back. You lose it, you lose that part of you and that part of them. Over what feels like decades, maybe you meet a new person and then you make a new third person and maybe they’re even better. Maybe they’re even better! But they are not the same. And that old joined soul is still lost in space and memory. And it’s ok. Heartbreak has led me to a renewed understanding of myself and new loves and new third people and whole new realities. But even in that new place of bliss and beauty, there hums a distant reminder of the lost souls. Losing my dad, watching my mom lose her husband, watching his parents lose their boy, it is becoming clear that we are all losing different people. We are all losing that magical person we became with him. That person is gone. We will all find ways to work through the agony and the hollowness and the minutes. Time will dull the throbbing but the hum will never go away. I like to think my heart murmur is simply that humming.
Today would have been my dad’s 60th birthday. I’m having trouble getting out of bed. I’m having trouble believing it all over again. On normal days, I can trick myself into thinking that my dad isn’t there. Can trick myself into thinking that he’s still here, just not there. But holidays slap me with a reminder that he is not here, he is permanently gone. That this is the new reality and there will be no more January 31sts where my dad wakes me up for a run, plays backgammon with me, eats Indian food that is too spicy and stays up past midnight to make the day last. There will be no more years older. This is it. My dad lives nowhere but inside of us now. It is up to us to bring him to life. Today we will run and spend time together and eat Indian food in his honor. Maybe we will play backgammon. We will see birds and feel him with us but he still will not be here. That’s the unthinkable part of death and the horror of holidays – the burning truth that my dad is forever gone. For as long as I live, he will be dead. For every birthday and holiday to come, he will not be here. If I think about it too much, I lose it. Jobs and friends make it easier to hide and easier to forget the permanence. But days like today sting. There’s this song that they play at Greek Orthodox churches when someone in the parish dies that translates to “Everlasting be his memory”. Every time the first chord of the song plays, I cry. Even if I don’t know the person who passed, I cry. It brings me to my grandma’s funeral and my grandpa’s funeral and holding my howling mother at my father’s funeral. I hate the song for what it represents and I hate the lyrics to the song. Everlasting be his memory. His memory. Days before last hearing that song, I had cake with my dad. And days later I sat in church to be reminded that all I have left of him is his memory. And holidays deliver me that same tragic truth. We just have old memories. I want more memories. I want more birthdays. I want more inside jokes. I want more time. But all I have is memories. I woke up with these thoughts and then I ran a race with my mom and brother and the course ran parallel to the ocean, the sun was out, people were exceptionally nice to us and we found ourselves smiling. And it made me think that we have a little bit more. Without his spirit living inside of us, we would never have gone to the race this morning or met those kind strangers or eaten those yummy scones. He still has a hold on us. Even without being here, he is still keeping us together and making us smile. We won’t have more memories with him but we can have new memories together because of him. We can still be moved by him. We just can’t move with him by our side and that is what makes days like today seem impossible.
Last night, my boyfriend found some videos on my laptop that I’d taken this past year and he asked if we could watch them. Two minutes in, I felt maybe the sharpest pain I’ve felt since my dad passed. I felt the horribly cruel pain of watching my dad breathe again. Seeing a picture reminds me of my dad but watching him breathe and laugh and deliver the saving punch lines to otherwise uninteresting conversations is watching what I lost. It is so eerily close to having him alive. I wanted to jump in the fucking computer. I lost it. I wailed and wished I’d taken more videos and wished I’d spent even more time at home and wished I could do something to make the video never end. And it ended and I called my mom at 2:00AM scrambling to see if maybe she had more and I wanted to never stop watching the videos and also couldn’t physically handle watching another one. I think maybe we work hard to block out the living memories, to remember the past as a concrete fixture, not as a living, moving being. When the past is concrete, it’s easier to block it out and to compartmentalize it and to try to make sense of it. But when you see the video and the movement and when you remember that the past is fluid and alive, it’s impossible to accept death. It’s so close. He’s so close. Looking at that video killed me. It felt so fucking close. I still wear the shirt that I wore in that video. I haven’t gotten my haircut since then. The house is the same. All the things are the same, we still live with them and he is gone. But he was here and alive just a few months ago! It’s too surreal. My boyfriend held me and my mom found me more videos and I indulged in watching us sing to my dad and us take medical marijuana for the first time and us go for a swim and I followed my dad’s eyes and his smile and his movement and really remembered. Remembered him and how I felt when I was with him. In those videos he’s my dad and I’m his girl. It’s surprisingly hard to remember both of those people. He’s gone and I’m not that person anymore. I seem the same to everyone who knows me. But when I was with dad, I was his daughter. I was someone different who I’ll never be again. I was someone I can’t put into words because I don’t know her without him. I was someone I really loved. And it’s hard when I see us there because I’ve been his daughter and that girl for 25 years. It’s a deep loss. I miss her. I miss him more. And seeing the video slapped it in my face. Slapped just how beautiful life was. It still is but right now, it is so very sad. I’ve missed him this whole time. But oh man those videos reminded me just how much.
2015 was the messiest year of my life. I’d spent the prior 24 years growing accustomed to having my precious things in tiny little boxes placed carefully on a glass shelf and this year the glass cracked and the boxes were crawling with insects and I lost my dad and parts of my mom and I screamed on runs and hurt wonderful hearts and slept little and cried a lot and messily, messily made it to today. This year was hard. It was a hard, horrifying year that I am having trouble bidding farewell. Because it will be the last year my dad was alive, even if living with an attacked brain. It will be the last year that I have memories with my dad, even if they happened in hospitals. It will be the last year I held my dad’s hand, even if it was to help him stand up. I don’t want to leave the year yet because amidst the fear and agony, there breathed moments of beauty. Real, vulnerable, unforgettable beauty. 2015 taught me that when you keep your eyes open in the darkest days, you will eventually start to see some light. I learned a new type of pain this year – the chronic, burning pain of loss. But I also learned a new type of joy – the joy of letting go and loving hard and laughing after a day of silence and leaning heavily on friends and holding family close knowing that our time together is both limited and endless. There were nights where I so violently feared the morning that I would fight off sleep in attempts to avoid its arrival. But given the opportunity, I would do this year on loop. This year, I fell madly in love, had laughing attacks into the night with my brother, found a home in the New York comedy community, ate most meals at the same table I grew up around, spent days floating with my dad in the pool, watched my dad’s smile as he demolished a massive piece of his favorite coconut cake, sang “It’s a Love Without End, Amen” to my dad as he lay in a coma the way he used to sing it to us and screamed and ran outside and wailed and felt my dad stay with me as he took his last breath and left with the sunset. It was an ugly, beautiful year. I think this year woke me up. I think I’d been sleeping in ambivalence for years, waiting for some one thing to come brighten my life. This year taught me to just fucking change it. It brutally showed me that we are on this weird, unjust earth for a few minutes and waiting is wasting that disappearing time. Even if we couldn’t imagine a worse day or worse words exiting a defeated doctor’s mouth, my dad still allowed us to find beauty in it! To still hear a laugh at dinner, feel a warm hug, see a bright star. He taught me to wake myself up early and to attack. Doesn’t matter how bad the day is – it’s still another day you have alive. Still another day to drink coffee, kiss your love and get outside. 2015 weirdly feels like the first year I lived and I’m afraid to say goodbye to it because I fear that as the year drifts away, I’ll fall asleep again. Memories of my dad will grow distant, the sting of the pain will dull, the worries will start to get smaller, the days will start to repeat and I’ll forget to wake up running. Saying goodbye to this year feels like a more final goodbye to my dad as my living guide and a welcome to my dad as my spiritual guide. I fear that shift. But if there’s any other thing 2015 taught me, it’s to look fear in its cowardly face and say I am not scared. So I am not scared. I am not scared. I am here and here is the only, most spectacular place to be.
Someone recently wrote a comment on one of my posts asking why I talked so much about my dad. It was intended as a joke, it was not malicious but it struck a chord and it stayed lodged in my anxious and tired brain. It made me furious because it emphasized my blinding feeling of isolation. Of no longer being whole. Because the short answer is that I will unfortunately never be able to stop talking about my dad. My dad not only created me and gifted me with half of his beautiful genes but he was also my very best friend. He owned the eyes I caught when people said dumb things. He was my default board game partner because only he could handle me when we lost. He was my ruthless opponent who pushed me on mile six. He was my guts to do the things that scared me. He was my radio playing country music. He was my light on a dark day. He was mine. And he is gone. Not temporarily gone he is forever gone. He’s not coming back! He. Is. Gone. I wear a body that is half empty. It still functions the same way as it did before. It still looks the same. But it feels indescribably different. I do the same shit but it all feels worse. I walk with a hollowness in my legs. If I don’t talk about it I will go mad. The only thing left of my dad is my memory of him and his essence that lives in me. What is left of my dad is the pain. When I talk about my dad, that is me grasping at what is left of him. If I block that out, if I don’t talk about him, if I don’t share him with you, that is me letting go. He isn’t here anymore so I have to work hard for him. And I would work those doubles for the rest of my fucking life if it meant I could manage to keep even 1% of him alive. I am working everyday to keep myself afloat and to keep him alive. It is what I spend my minimal stores of energy doing. Maybe that job will get easier or harder as time goes on but either way, I plan to do the work. This is my job now. I didn’t apply for it but it is mine. Me talking about my dad is me doing the work. I won’t stop feeling the way I feel, I won’t get my dad back. That’s the shitty part about love. You can lose someone and then you just don’t ever get them back. And the hole that is left in your heart can burn like hell. Tomorrow is Christmas morning and instead of a sparkling tree, I will wake up to an equally devastated mom that I woke up to two months ago. This is not going away. I will not be made whole again. I will not stop talking about my dad because that’s all I got. I too wish it weren’t the case. I too wish that instead of talking and joking about no longer having my dad by my side, I could have my dad by my side. I would give anything to squeeze my dad rather than tell you a story about him. I have no interest in telling you stories about him. I have an interest in keeping him with me and so that is what I will do. I will continue to talk. Thank you for continuing to listen.
My dad used to write sarcastic Christmas newsletters to humorously highlight the not so great moments of our past year. Luckily for this exercise, 2015 was filled with many of those. In his honor, I wrote one for this year. To those who celebrate: Merry Christmas, my friends.
Well it’s been another banner year in the Limperis household. 2015 gifted us with consistently worse new dawns piled delicately on top of each other, creating a record setting level of stress. We did it! We broke a record! While 75% of the Limperis clan went unemployed this calendar year, we managed to do more work than we thought humanly possible. Each day was packed to the brim with sadness, debilitating anxiety and extensive efforts to help dad feel a little bit better in the face of stage IV brain cancer. We spent the better part of the year up North at our second home, Dana Farber, but we managed to find some moments for ourselves as well:
Alyssa was a busy bee! She has wanted a puppy for as long as she could speak and this year she finally got her first pet – a set of persistent bedbugs who loyally stayed by her side for months. She received them right upon moving into a brand new place and promptly had to throw away all of her belongings, lose her broker’s fee and head to Craigslist to find a new pad. Luckily, she managed to find a great spot in the East Village with a walk in closet! She lived in the walk in closet. She remained unemployed for the better part of the year but used her spare time to develop an anxiety provoked heart murmur, lose a considerable chunk of her hair & go through a breakup.
Linda had an equally busy year! She spent the majority of it doing everything. Everything! She then spent her free time doing hobbies like paying the bills and being in charge of dad’s pills and driving dad everyday to radiation and never leaving dad’s side and cooking meals and doing every activity that dad wanted and working with a nutritionist to try to slow down dad’s tumor and helping her kids with their problems and maintaining a home and learning more about Glioblastoma than our neuro-oncologist’s medical students and doing daily laundry and surprising dad with a new porch and making every holiday special and barely showering because she truly didn’t have the time. And all that with a broken shoulder she got when protecting dad from a wave in the ocean. Jingle Bells!
Mark Mark Mark! Mark managed to be the sole source of income and stability* for our family this year. As the saying goes, “Money can’t buy happiness but we have neither”. He not only provided us with the “green” (like red and green, Merry Christmas!), but he was able to still maintain a vibrant nightlife. He spent countless nights up until 5am talking Alyssa down from panic attacks and existential crises. He celebrated his 28th birthday with a surprise party – Alyssa woke him up in the middle of the night and asked if he could talk through the exact same thing they talked through directly before going to bed. We’re all proud of Mark this year, especially Alyssa’s therapist, for shouldering her load.
*Mark took two leaves of absences, lived in three apartments & saw one friend once
Lastly, Dad spent this year honorably fighting for his life while continuing to make us laugh every single day. He was given a terminal cancer diagnosis and he took it the way he did everything in his life: with courage, resilience and light. He never asked why, never complained, never gave up hope and never left our sides. Instead of spending his last year dying, he spent it teaching us how to live. He died on October 20th, 2015 but he hasn’t left our sides since. We are all in stinging pain as we approach our first Christmas without him but we are getting by with his spirit as our guide. He’s here. Harder to see, but he spent 2015 reminding us where he would be and how we could find him when we could no longer see him. He’s here and he will be for all the banner years to come.
We wish you a beautiful holiday with your family and we thank you for all of your unwavering support this year. We couldn’t have done it without you. In our sadness and emptiness, we continue to find hope in your love. Be well. Go run with bells for Jim.
The Limperis Clan
People say this thing about death – that the person never leaves and that you’ll see them everywhere. I’ve found immense comfort in it. I’ve taken solace in knowing that my dad lives inside of me and finds me throughout these long days to pick my eyes up. I see him everywhere. I feel less alone walking, knowing his warmth follows me. But I do see him everywhere. I woke up this morning, as I had the four mornings prior, thinking he was alive. I have this recurring dream where my dad is just starting to show signs of the tumor recurring. Tripping, forgetting words, unable to see me when I’m on his left side. He can’t tell but I can. I wake up with the knowledge that my dad is about to die but that he doesn’t know it. Then I slowly realize that I was having a nightmare. Then I realize that I lived through that nightmare. And that it too follows me. A radiator is my dad breathing heavily while he was in a coma. My boyfriend saying hey baby is my dad mouthing those words to my mom when he couldn’t speak. My mom yelling my name is her needing me to help grab my dad before he collapses to the ground. Every once in a while when I see a familiar barista or hear an old joke at a show, it feels like maybe this year never happened. Like I am waking up from a nap to the same New York. Like my dad is a phone call away. But most other times it feels like I am still living in the nightmare and that everyone else exists at an arms length. Close enough to touch but far enough that I can’t quite hear what they’re saying. All I hear is my dad saying it will be okay, all I hear is his doctors saying it won’t be. I find myself checked out. Far away – traipsing through the past, fearing the future. Nowhere is protected because my dad is everywhere. But as unbearable as it is, I’m okay with it. Because people also say this thing about time: that it never erases the pain but that it dulls it. I hate that. I don’t find that at all comforting because I don’t want to dull the pain. The triggers, the memories, the pain is where my dad lives. I dread the day when I see a baby on her dad’s shoulders and don’t cry because that means I will be getting used to the reality and moving forward. If I stay put, I can hold on tightly and exist in flux– I can float between pretending everything is the same and living in the nightmare. Coming down to the ground and living in the present is what scares me. Living in flux is tolerable because it is there that he breathes. I’ve watched him take his last breath and I refuse to experience that twice. I know eventually I will have to learn to keep him at a further distance but at the moment I’ll keep the night sweats and I’ll keep excusing myself from parties if it means I’ll keep my dad closer. My dad is everywhere and for now, that is where I choose to keep him.
I’ve come to this coffee shop every day for one year. It was the anchor to my day, the one thing that was promised. I knew what the coffee would smell like and how much it would cost. Beyond that, I knew nothing about the day. I didn’t know if dad would be able to swallow. That changed overnight. One day my dad could swallow food and the next day he coughed it up. I stayed up past two every night because tomorrow could be worse. The only thing I knew about tomorrow was that when dad napped, I would get coffee. Decaf. Anxiety made my heart rate feel audible. I would order the same large decaf hot coffee from these same baristas everyday for one year and have never learned their names or said more than that order. This place was my nibble of normalcy and of independence and of anonymity. If I listened to the right music and texted the right friends, I could have been in New York, in my old life for a few minutes. This coffee shop is a chain. They have one blend of coffee. None of their treats are gluten free or vegan. They don’t have Matcha. They play Maroon Five. If this cafe existed in New York City it would be in midtown and you would need a big key with a spatula on it to use the bathroom. But this dumb place saved me. It gave me the reminder of my past life and silently promised me a life in the future, however distant. Pills, scans, prayers, they didn’t exist here. For a few minutes every day there was no fear, no talking, just a cup of coffee and some strangers. Today is the day before Thanksgiving and I’m in the same seat, same large cup of decaf coffee but fewer strangers. I’ve run into four people I went to high school with so far. My sanctuary is flooded with old faces, warmly offering words and hugs but blindly stripping me of my peace and namelessness. They are coming home from their lives for a weekend to be with their families. Of course they are! There is nothing wrong with it. Of course they are. But I feel sick. I want to be here for a visit. I want to be coming home to my parents and the pies. I want to be so excited to tell them about my shows and to hear about their recent adventure. Then I wanna go. And run back into my cozy den where I play and perform and kiss and work and come back when the streets are lit and the trees are cut. The magic of Thanksgiving and of Christmas and of home have disappeared into the shadows. They too are now landmarks that strip me of my peace and slap me into the ugly. They are reminders of pills and scans and prayers and of the empty seat at the dining room table. I’ve been reassured that time will make me feel better. Sure. But that seat will remain empty. And I still can’t believe it. The table is set for one less and the sun will rise and the holiday will come and I will run our loop alone and pretend to enjoy the food. People will count blessings and I will count the minutes until the day is over. I’m not ready to be seen. By these old faces or these new holidays. If I hide from it all, it’s less real. I want to wear this coffee shop as a winter coat. But it’s closing in an hour and my family is piling up at home and my friends are going to a bar tonight and life goes on. And if my dad were here, he would run and eat too much stuffing and grab beers with high school friends and be seen. He wore snakeskin boots and a cowboy hat to the market. The man could not hide. So I will try my best to follow suit. Maybe those people don’t know shit and maybe it’s not about letting time pass but about spending the time the way my dad would have. Maybe it’s not about getting used to the empty seat but about filling it with his spirit. Maybe it’s not. But I might as well try it because dad wasn’t the type to sit around and wait. In fact, I don’t think he ever did either of those things. The least I can do is leave this coffee shop and suck in the cold air and watch the sun set. It will rise tomorrow. And I will be sad and I will want to stay in bed but I will be thankful for him for living in me, for getting me up and for pushing me on.
Last Halloween, at 1:05am, I got a text from a guy I used to hook up with in college that read “Haha hey. I’m dressed up as an old lady. I’m hot. Hit me up if you’re tryna make out”. I heard the notification amidst an attack of beeps, choked by the smell of rubbing alcohol, wide awake in a hospital chair that I was sharing with my brother, next to the bed that held my parents and was like oh my god my life is now different. If I had received that text a day earlier, I would have woken up in his apartment that morning, put on the tight dress that was veiled as a costume the night before, picked at an everything bagel and made useless small talk in the form of ragging on him until I hopped in a cab, brushed my teeth and worried about what dance class I would take that day. And then maybe I would have done it all again. And in between I would’ve called my parents 20 times to ask things like should I get iced coffee or hot coffee? But I got the text that night and that night my healthy dad was told he had terminal cancer. My mom was told her college sweetheart would soon be gone. My brother and I were told too many details. We knew exactly how my dad would die minutes after hearing the word glioblastoma. We lost hope and both of my parents in a scan image. And then it happened. We grew up. We drove and cooked and took out the trash and researched the pills and shouldered the fear and optimistically reassured and coddled and carried and planned and put the growing needs of our parents ahead of the basic needs of our own. We did what our parents did for us our whole lives. And oh man we didn’t thank them enough for that. Because it’s so fucking hard. I want to run! I want to sit in an apartment and blast dumb music and eat my favorite snacks for meals and masturbate when I feel horny and breathe deeply and stand on my head and drink with a friend and sleep in and go to a coffee shop for six hours and just be. I want to be. I want to go back to a time when I only over-worried about my own worries. I spent this whole year worrying about my dad. His pain and his peace. And now his pain is over and he is at peace. And now I worry about my mom. I’m lying next to her in bed as she stirs. I just heard her mumble, “Come on Jim.” I’m so tired. I want to only hear the faint voice reminding me that I need sleep and greens. But there is more noise now. I can’t block it out and I wouldn’t want to. Because I’ve been talking for so long. I’ve been the voice humming in my parents’ heads. I’ve been the worry keeping them up before I text them that I made it home safely and the sadness weighing them down before I tell them that I felt a little happier that day. That’s what love does. It takes over. It is hyper-there. It overrides your ache for freedom with their need for hugs. My hugs are needed at the moment but I was squeezed for 24 years so I am equipped. I was hoping to have more years of being held before it was time to hold but my dad was hoping to have more years of living before it was time to die and so we adapt because we have no other choice. I want to run and sleep and eat greens and be but I will wake up early tomorrow and hold my mom and stay in the house and have the lasagna and silence her fears because I love her as she has loved me.
I’m terrified of death. I don’t really know how anyone could not be or how we could rightfully be expected to stare into the wet eyes of someone who owns a piece of our heart and know it may be for the last time. My brain doesn’t feel big enough to process the impossible thought of seeping back into nothingness. Of saying goodbye to the morning. Of permanently being out of reach. I want and I try to believe in something bigger than us and in the promise of eternity but it is easier to conceptualize in the theoretical than in the actual. As my dad is fast asleep for the seventh day, breathing heavily and hugging death, it is harder to trust in infinity because it feels entirely the opposite. It feels he is disappearing against his will when he so badly doesn’t want to go. He doesn’t want to have already ridden his last wave or caught his last leaf. He wants to meet my babies and to hear the chickadees this spring. He doesn’t want to let go of my mom’s hand. He doesn’t want the end because he is accustomed to living his life at the starting line. He is accustomed to waking up and saying what a beautiful day, let’s not miss a minute. He is not ready. But maybe all we can hope for is to not be ready for death. To hunger for life so voraciously that leaving it feels like starvation. To inhale so much from each day that to not have another feels like you are suffocating. To love so god damn hard that to lose someone feels like losing yourself. Maybe that’s it. And that is what my dad has done. He has proven to us that there is no such thing as a bad day and that love is visible in actions and in always being there and that the sun is a gift to be opened and how to work really, really hard to get what we want and to never say never and how to infuse laughter in every situation and to use the cashiers’ names and that it never hurts to ask and to always pack sneakers in case there is a race, and how to make a parade out of dead sunflowers and how to see a single patch of snow and deem it sufficient to ski and how to never pass a farm without mooing at the cows, and how to bring light into every room and leave people feeling happier than they did when you entered, and how to wake up every single morning and be grateful that we were given another day and to take that day and pack 5 normal human days into it. This is how my dad has lived. And when he was diagnosed with terminal brain cancer, he didn’t change a thing about his life. He didn’t start living like he was dying. He kept living the exact same way he had been living before. I think that is the ultimate. To be at a place in life where when death calls, you don’t change how you are living and you just wish you could have more time to keep doing it. Maybe that is how we conquer our fear of death. To see life as the opponent of death and to play hard. If those are the rules, then it was a shutout. My dad beat death by never ceasing to live. He isn’t ready to die but he never would be. And maybe that’s the most beautiful thing.
I’m ok. I keep saying I’m doing okay when people ask how things are at home because I don’t have the energy to say the other answer. I can’t say that one year ago, my dad whooped my ass in a 60-mile bike ride and today I slowly pulled him out of bed while he grabbed his neck and wailed. I don’t text you that my dad has run 7 marathons and exercised every day for 30 years and that today it took 10 minutes to carry his half limp body from a wheelchair to the couch. It is easier for me to let you know that I will be okay than to let you know that I’ve slept an average of 4 hours a night for the past three months because my brother, my mom and I wake up a few times a night to take my dad to the bathroom. It takes three of us to get him to the bathroom. And last August my dad and I were going to the bathroom in the woods as we hiked across the entire state of Rhode Island. Glioblastoma is an ugly word. When I heard my dad had stage IV glioblastoma, also known as brain cancer, I thought I would go on marches. I thought I would tell my dad to fight and that we would shave our heads together as we walked on a long path to recovery. We haven’t walked, we haven’t had the chance to fight, we haven’t had the excitement of clear scans, we have lived in fear of a rapidly growing monster inside my dad’s brain. His brain, where he keeps us. Where he keeps his quirks and his education and his sense of humor and his strength for talking to me and his ability to control his body. We’ve slowly and rapidly watched my dad be invaded. He had a headache. And three days later, he had a scar spanning the entire right side of his head and a daunting prognosis. They initially told us 3-4 years which turned to 1-2 years to we don’t have hope because of the position in which his tumor re-grew. Since that initial day we have watched my dad go through surgery, radiation, chemotherapy, try an experimental drug, a new diet and every type of homeopathic supplement. We have watched him lose the ability to use the entire left side of his body, we have listened to his voice weaken to a whisper and we have answered his questions about the weather that we have answered hundreds of times. Glioblastoma has robbed my dad. It has ripped away everything he has spent his life building. It has left us naked and vulnerable and terrified and crying in each other’s weak arms. It has kept us on edge about what new loss every day will bring. It has left us lost at the thought of a future that doesn’t include all four of our physical bodies together on this earth. It has brutally broken our hearts. But it would have had to try harder if it wanted to tear us apart. What it has done is brought us together for an entire year, to Florida for two months, to New Hampshire to run a race on the fourth of July, to Bretton Woods to ski, to Caratunk Wildlife Refuge to hike, to our basement to watch home videos, to our backyard to swim, to the dinner table every night to eat and pray for another beautiful tomorrow together. We have not lost my dad and this year has made it obvious that it would be impossible to ever lose him. His playful spirit and boundless energy breathe inside of us and in the bellies of everyone he has touched. Yesterday, our doctor told us that we only had a few weeks left. Today, we woke up to a 67-degree day and my dad deemed it pool weather. We all dunked our exhausted bodies into the near frozen water while singing and shrieking and smiling. That’s my dad. He is looking death in its face and saying hey why don’t you come in the pool with us, the sun is shining and for early October, that is a real gift. He is inviting us to seek out the yellow in a sea of black. His eyes are assuring us that life is beautiful, that we are always together and that it will all be ok. So I am ok. It’s bad and horrible and heartbreaking and isolating and sickening and devastating and totally unfair. But life is beautiful, we are always together and I will be ok.