One Year, Part IV

 A few days after my birthday, Jonathan had a follow up appointment with one of his doctors. He was told that out of the 40 lymph nodes they removed, the ideal situation was to find the single cancerous lymph node and feel secure that there was no further spread in the body. They found two. While assuring him that this was still pretty good news, he advised that he wanted to push forward with a round of chemo to ensure that any lingering cancer cells were destroyed. We were crushed. Had we prolonged this suffering by not just taking chemo from the beginning? Had we opted for it, the treatment would have been more intense and for a longer duration of time but would that have been it? Were we making any of the right choices? There was no real way to ever truly know. All we wanted was to be certain that he was cancer free. We picked up the pieces of ourselves and put on a brave face. It was only one round! Plus the doctor said he would likely still have his beautiful head of hair, something that Jonathan was very intent on keeping, and the symptoms wouldn’t be too bad. It was only 3 weeks. We could do this. 

But just a few a week later, in a pre-portal surgery check up, Jonathan’s oncologist  changed his tune. I can’t remember exactly what the reasoning was, but he wanted to do two rounds instead of one. The grand total of weeks now came to six. While we still felt lucky, knowing how long some chemo sessions can go, we were confused and heartbroken. Jonathan took the news especially hard. He called me while I was at work and I hid in the bathroom for an extended period of time. Tears were shed as we prepared ourselves for what came next. It’s difficult to have to prepare yourself for what will be some of the shittiest six weeks of your life, to watch yourself change in ways you can’t control so rapidly. We both broke down. We just wanted this to be over.  It felt like for every small positive moment we had, there was something in the shadows waiting to knock us back down. I told him I loved him so much and returned to work. When I got home we hugged for a very, very long time. 

Jonathan’s first chemo appointment was scheduled the day after his birthday. He left in the morning, filled with nerves. Someone once called it “first day of school jitters” and I quickly corrected them. This was worse. We didn’t know what was coming and how he would feel. There was no anxious excitement, just dread. As Jonathan headed to the hospital, I called an uber to the office. While it was a perfectly normal day there, my head was elsewhere. I wondered how Jonathan was. I felt angry that because of Covid I couldn’t be there with him. I had a few calls, finished everything I needed to and eventually called an uber to pick him up at the hospital. When he finally emerged he didn’t look terrible, but he looked out of it. “I’m so tired.” he said to me as I quickly tried to order us an uber back home. The car ride was silent, and when we got home, he hit our couch like a ton of bricks. He slept for the majority of that evening while I sat close by. Every so often he would wake up to ask me for water. At one point, I checked his temperature and he was running a fever. I put a few more blankets on him but he asked for more. He was shaking and uncomfortable and I told him we should get him into bed. He tried to sit up and couldn’t. His limbs were in pain and felt like they weighed. I tried to help him off the couch but he couldn’t move without hurting, so I laid him down and rubbed his hair. I gave him some water and kissed his forehead. Eventually, he was able to muster up enough energy to get into bed. It took all of my strength to get him up and hold him while he moved from one room to another. He groaned while I held him and told me he was in pain. Slowly, we got him into the bed.  He fell asleep just about as soon as he laid down. Honey jumped up onto the bed and laid her head over his legs. I turned off the lights and went into the bathroom. I grabbed the fluffiest blue towel we owned and held it over my face to muffle the sounds from my sobs. This was day one and the experience was already horrible. I spent the entire night watching him sleep to make sure he was ok. In the morning, we did it all over again. 

Luckily the next day was my work from home day, and I was able to fit in a quick nap between a few calls. Before I knew it,  I had to pick Jonathan up again. In the morning he texted me telling me he was feeling ok and thought he could get himself home but I didn’t care. I know it was extra money that frankly, we didn’t really have to spare, but the idea of him on a train with his immune system weakened while the city still tried to manage itself through the pandemic made my skin crawl. Plus, I felt it was important for him to come out and see me there waiting, rooting for him. His body was going through something so hard and traumatic. I wanted to be able to take over him the second he got out of the hospital. As we headed home he again was silent as he tried to sleep.  When we got home, more silence as he drifted in and out of sleep while I kept a watchful eye. Again, we struggled as we moved from the living room to the bedroom and again I added more time to my total hours awake so that I could ensure his well being and safety through the night. 

This repeated on and off. Some days were better than others. Between caring for Jonathan, staying on top of my work, my responsibilities with Honey and everything else I felt like a hollow shell of myself. Everyone else was dealing with their own woes during the pandemic so I didn’t want to bother anyone with how miserable this experience was. My saving grace was a denim jacket that I decided I wanted to start bedazzling. As Jonathan rested after each session, I’d set up my TV dinner table and began the methodical work on the jacket. I swear to this day that the rhythmic motion and focus of putting rhinestones down in rows is the only thing that stopped my mind from shutting down completely. Eventually we got to the one day a week cycles and after three, long grueling weeks we were done with round one. We were both exhausted and hurting.

 As soon as round two started, Jonathan began to notice pieces of his mustache would rub off if he blew his nose. After a few more sessions, he texted me while I was at work to tell me that chunks of hair were starting to fall from his head. I knew this was coming and yet I was still anxious to cross this road. Jonathan’s attachment to his hair is deep. A lot of his identity is woven through the follicles and strands. “It’s only hair” a lot of people have said, but it’s not that simple. Jonathan loves his thick hair. The thick, strong dark hair that he shares with his mother. Pre diagnosis, he told me was thinking of growing it out long again. Now, chunk by chunk, it fell out because this medicine was attacking the cells. I got home, exhausted from a long day, and saw the concern displayed all across his face. Earlier he joked about how mangy he could get with his hair falling out. Now, he was somber. He decided to take a quick shower as I prepared dinner, but called me into the bathroom after only a short time. There was so much hair on the shower floor that for a second I thought he had tried to shave his head while showering. “This is just from washing my hair,” he said quietly. I tried to think of things to say but couldn’t find the words. “I need to shave it.” That night, with the buzzer being the only sound, Jonathan shaved off all of his hair. 

Jonathan isn’t much for words. He’s not great at expressing when he’s anxious or sad. A lot of the time he internalizes it and I carefully open the door and show him that it’s possible to let it out. However, during this time I didn’t want to push him. I could see he was sad but he was too tired to begin to deal with it. Somedays, after rushing from work to pick him up, I’d find him in a daze walking from the hospital to the cafe across the street to sit down for a moment before we’d get in the uber home. While I requested a car he’d hang his head back and sleep. Sometimes his mouth would begin to open and I’d scoot over to his side and sit on my legs so that my shoulder was high enough for him to rest his head on. We’d return home and he would sleep for hours. During the weeks where it was one session per week we got into a routine of sleep all day on chemo days, rest the following day and a small return to normalcy until the next cycle. After what can only be described as the fastest longest weeks of our lives, Jonathan finished his last chemotherapy session on October 6th.

My parents were kind enough to give us a ride that day. Between the rides to work, the rides to the hospital, the rides back home, the copays for each and every single chemotherapy session and labs, our savings were non-existent. We considered taking the train from time to time but were too worried about Jonathan’s immune system running on fumes and being too close to people while the pandemic continued on. We were lucky to be able to do that at all, but I was still grateful to have my parents cover us from time to time with a ride. We waited anxiously for Jonathan to appear from the hospital and when he did we all cheered. My mom made makeshift confetti out of hole punched paper and we threw it in the air to celebrate. When Jonathan finally got to the car and we hugged both of us let it out. Tears of joy and relief came down and we held each other for a long time. We were both cautious to say it, since we had been burned in the past, but it finally, really, felt over. 

Life returned to normal for us slowly. Jonathan built up his strength everyday and his body healed. Around Thanksgiving some X-rays showed that Jonathan had blood clots in his lung and in his heart which sent us through a loop, but the doctors were quick to get him on medication and the problem resolved itself. On December 10th, Jonathan’s doctor officially said that Jonathan was cancer free. My mother bought us a fancy dinner at the house to celebrate. Jonathan’s hair has been growing back slowly but surely and his strength is back in full force.

And that brings us back here, one year later. I still don’t feel like I’ve fully processed just how emotional and traumatic this was for us while we lived through an already emotional and traumatic time period. I still feel like I’m playing catch up from everything that transpired. I spent the last year of my life being my husband’s caretaker, a role that I would take on again and again and again, but I still haven’t figured out how to care for myself and my mental and physical well being after the fact. Sometimes I have dreams where Jonathan’s cancer has returned and that it’s worse than before. I wake up in the middle of the night covered in sweat with my heart racing, only to find Jonathan sleeping peacefully next to me. I wish I could tell you that after a year, we’re back to normal and everything is great. It’s certainly not bad, but I know both of us still have a lot of processing to do. Sometimes I want to ask people to still be gentle with us as we figure that out, but life doesn’t stop for anyone or anything. 

The good news, though, is that I know that eventually we will be there and have worked it out. We are alive and that simple fact of that is not lost on either of us. Tough as it was, we made it through a global pandemic, through cancer, through fear and uncertainty. We fucking made it. We made it together. Our bond has grown stronger and I find that we’re more patient and gentler with each other. We appreciate our lives and each other more. Through all of this pain and hardship, we’ve found that our instincts were right. Marrying each other was one of the best choices we ever made. I hope I can come back and read all of this in the future feeling so much better. Remembering this as a distant memory and hopefully with everything finally processed. I wish I had a better way to end this but I don’t really have one. I’m just really hopeful for brighter days ahead for the two of us. If you’ve made it this far I’m grateful. I love you, I really mean it. 

One Year, Part III

A surgery to remove the cancerous testicle was scheduled within days of getting the news. Several tests were scheduled in between to make sure everything was on the right track and that Jonathan was able to get through the surgery with no complications. An appointment at the sperm bank was made. A CT scan was done to see if the cancer had spread anywhere else in his body. Navigating these appointments with Covid looming like a heavy cloud over us was proving to be difficult. From what I understand, patients were usually able to have someone accompany them to appointments. Thanks to Covid, this simple luxury was stripped from us leaving Jonathan alone to endure appointment after appointment alone while I waited in our silent apartment. The clouds seemed to part when a doctor told Jonathan that he could have one person wait for him for his first big surgery. Ecstatic that he wouldn’t have to face this alone, we made our way to the Union Square hospital. We signed him in, sat in the waiting room for a short period and then they called him in. We hugged and after a long kiss, Jonathan said “I’ll see you soon”. He disappeared behind the frosted glass windows into the pre-op area and for a moment. I stood silently in the waiting room. As I sat down, I began to cry. I was all alone in the waiting room and my fear finally swallowed me up. I thought of all of the possible terrifying outcomes from this surgery. What if the CT Scan showed that the cancer had spread everywhere? What if there was a complication during surgery and this was the last time I would ever see him? I began to panic and choke on my mask again. Deciding I needed to calm down, I went over to the security desk and asked where I could get water. The man was surprised to see me, and I assumed it was because I looked completely disheveled with swollen red eyes while I tried to speak as I hyperventilated. He was kind, but told me I couldn’t be here. He told me that he was sorry that someone gave me incorrect information, but I had to leave the premises due to Covid protocols. I pulled myself together somehow to find my way out of the building. I thought about where to go to wait but quickly realized there was nowhere to go. All of the cafes nearby were not allowing anyone inside due to their own Covid protocols. I wandered over to the Daryl Roth theater, sat on the steps and cried while strangers passed by and watched. I felt horrible and scared beyond what I could handle. I called my sister who helped to calm me down and once I was in a better headspace I was able to call my friend Paige, who was set to drive us home after the surgery. I asked if she would feel comfortable enough to let me hang out in her apartment while I waited. Being the wonderful light of love that she is, she happily agreed. 

Sometime later, we finally got the call to pick him up. Sitting outside of the hospital in a wheelchair with a nurse, I saw a different person than the man I had been married to for 5 years. Pale and in pain, he got into the car. I put on a smile. It was over! The healing process had begun! I heard so many stories of this being the surgery that ended so many people’s cancer stories. I was filled with hope and really believed that this was going to be it for us, but somewhere between Manhattan and Brooklyn, Jonathan broke the news that the cancer had spread to his lymph nodes. His doctors would let him know what that meant in terms of our next steps soon. Forcing back tears and scared for the future, I pushed my feelings and anxiety deep below and told him, truthfully, that  we would get through it.

We found out that Jonathan’s cancer was a mixture of two cancer cells, seminoma and non seminoma. Some could be physically removed, some could be eradicated with chemo. Neither was 100% certain and each one had its own list of pros and a very long list of cons. Every new piece of this road had forks and suddenly, we had to be adults making these decisions. The details of the next few months are a blur. Just months of never ending anxiety and uncertainty. Endless doctors appointments with new information, figuring out how to get to work in New Jersey while interacting with as few people as possible (which ultimately resulted in almost spending $100 per trip), figuring out medical bills, what was covered under insurance and deemed “necessary” by our insurance, navigating new Covid protocols, getting tested at least once a week due to different appointments or, at certain points, possibly coming in contact with people who had Covid. At some point in this uncontrolled free fall my childhood dog, my sweet 14 year old giant Pomeranian Audrey died. I was an absolute wreck.

My stress manifested itself in my hair thinning out and a loss of appetite. The first week of July, I wrote in my journal that I realized I hadn’t had anything to eat except a few crackers and water the entire week. Everyone told me I looked great, but I was weak, mentally and physically. I had to keep pushing on because there was no other option. I was also feeling intense moments of guilt. How could I be feeling so shitty when Jonathan was the one who was going through this? I didn’t give myself any room to wallow in my own self pity and there wasn’t anytime to. Life moved whether or not this was happening, and the way that life was moving was unlike anything I had ever experienced before. Hit at all angles, I was hurting deeply, but I sucked it up.  

Eventually, Jonathan decided to go with the retroperitoneal lymph node dissection to remove the cancerous lymph node. The hope was that the cancer had spread to a single lymph node, but the doctors would remove about 40 to confirm there wasn’t any further spread. By opting to go down this road, we hoped to save our chances to naturally conceive one day. Each option, whether the RPLND or chemo, posed it’s own risk for the future of having a family. This choice was something that weighed on us heavily, but a decision had to be made. My family was incredible in making sure every single moment of Jonathan’s surgery day was planned. From my amazing parents giving us a ride to the hospital at 5am, to my incredible sister having a full playlist of shows for me to watch while I waited at her house for his surgery to be over. My phenomenal brother in law accompanied me to the hospital to visit Jonathan after his surgery, waited outside until I was done and accompanied me back to their house, where I spent the night. I was surrounded by love and help and I’m grateful. I was on autopilot that day with my anxiety driving a car. 

The following day my wonderful cousin and her husband drove me to the hospital to pick my love up. Even though I fell asleep at 8pm the night before and was somehow still tired, my adrenaline was keeping me moving. Jonathan looked so much better than he did the day before. He was covered in scars that he referred to as his bullet wounds, but all of his color had returned to his face. The doctor came in to talk to us, but I had to excuse myself for a work call. The call was hard to focus on, all I could think about was the information I was missing yet again. Because of Covid, it was a rare occasion for me to be able to directly speak to a doctor and I had waited for so long to be able to do so. As the call wrapped up I heard the doctor say “You have tough recovery ahead so you need to take it easy, but we’ll touch base when we have your results.” The doctor somehow snuck out of the room by the time I returned. “What did they say?” I asked Jonathan and in typical fashion, he just shrugged. 

Not being able to communicate with Jonathan’s team was frustrating. Throughout this, Jonathan had to advocate for himself while hearing scary news all at once. Sometimes, hearing all of that would leave him shaken and not able to really process what was said. When he would come home and try to report back, he had a hard time being able to give me the full assessment. I would get fragments of information. On several occasions we requested to speak to the doctors again over the phone so we could ask new questions together. For one reason or another, those requests were ignored and he would have to wait until his appointment where the whole cycle would repeat itself. 

Those sweet summer days of recovery were pretty quiet too. Jonathan’s diet had to change pretty drastically so that his body could recover. For a full month we had to drop most fats and stick to specific proteins. We would take short quiet walks with Honey around and enjoy the warm air. These walks started slow at first and then eventually grew faster and sometimes even longer. While we waited for the results of the biopsied lymph nodes we were hopeful. Maybe this was it and things would start to turn around again. Maybe we could start doing more things outside with friends. When my birthday came, Jonathan was acting and feeling like himself again. It felt like things were falling into place and with the city buzzing again, we thought life would maybe return back to normal.

One Year, Part II

 As most stories usually begin, the day of Jonathan’s cancer diagnosis was just a regular day. The day before I had started my rotation back into the office, which meant according to the schedule,  this bright Tuesday morning was spent working from home. Cases were starting to decrease in NYC very slowly so I was getting back to my routine and I was miserable with my allergies. It felt like life was maybe going to come around back to normal.  I don’t remember being too concerned with Jonathan’s appointment that he had gone to earlier in the day. I assumed they would tell him it was a minor issue, something that needed exercise or some sort of dietary change. My boss had asked me earlier to see if he could pick up some items I had at my house. He just finished calling me to say he was about 10 minutes away and as I hung up, Jonathan came walking through the door. After sniffling and complaining about how I was debating whether my allergies were actually Covid symptoms, I finally stopped for a second and asked how his appointment went. He didn’t say anything but placed a small package in my hand. “A gift for you.” he said sweetly “for my wonderful, loving, beautiful, special, perfect, amazing magical wife.” This made me suspicious. While Jonathan is always one to sprinkle compliments into a conversation, after 5 years of marriage I knew that there’s usually baggage when they’re excessively layered up on top of each other. I opened the package skeptically. To my delight, there was an avocado shaped coin purse inside. “It’s an avocado! Thanks!” I said calling back to a vine we quoted constantly to each other constantly. We spoke briefly about it and as I was taking a photo of it to send to my best friend, I offhandedly asked again how the appointment went. 

“Well, uh” Jonathan began and then stopped to clear his throat.  Suddenly, I was aware of how quiet it was in our apartment. The windows were closed to keep myself from sneezing and the TV was on mute The look on his face, his aversion to make eye contact and  the pause as he tried to put the words together made it feel like the air was sucked out of the room. I waited for the next words fearful of their severity. He gave a half hearted laugh and blurted out “They said I had cancer.” 

Silence

He forced a laugh again and I looked at him for clarification. Was he joking? Jonathan has complained of growing ailments for a number of years. His knees ached with excessive use, his back hurt constantly, sometimes he’d complain about his shoulders or toes. When I urged him to get it checked out he always dismissed me. “It’s probably shoulder cancer” he had previously said “I don’t want to pay the doctor to tell me that.” The argument over going to the doctor had gotten so extreme over the last 5 years, that in December of 2019 I went behind his back and signed him up for my health insurance. He didn’t want the extra cost but I wanted him to be safe. In January of 2020, after years of not having it, Jonathan finally had health insurance. In April of 2020, just a month before the diagnosis and while the world as we knew it crumbled, Jonathan asked to be taken off of it. He argued that he was fine and it would save us money. I grew so angry that he would even consider that option during a global health crisis. “I don’t care if it saves us money.” I snapped at him “If you get Covid, and have to be hospitalized I would like you to have insurance.” He insisted I take him off and that he didn’t need it. I ignored him and continued to pay for it myself. 

When he didn’t say anything I grew impatient. I knew his joke pattern. Say the line three times and when I finally roll my eyes and start ignoring him, he folds and tells me the truth. “Stop, that's not funny. What did they actually say?” I asked. He said it again “They said I have cancer”

Silence

We repeated this a few times. His tone was throwing me off. It was different from all the times he had done this in the past and I was beginning to get angry. I couldn’t tell if this was real or if he had just gotten really good at trying to freak me out.  If this was a joke, I was going to kill him with my bare hands. I couldn’t even get out my anger because I felt my tears forcing their way out. “No they didn’t. What did they actually say” I pleaded. I was starting to get scared and hoped the tone of my voice would convey my need for this joke to end. “Ok, I’m just kidding” he responded back while laughing, and I felt victorious. I knew he wasn’t being serious, I just had to let him know it was upsetting me. “Fuck. Ok so what did they actually say” I laughed while cleaning my nose with a tissue and wiping my tears away. “They said I had cancer. This is real. I’m not joking.” he said. We made eye contact and had one last brief moment of silence together, then I broke.

This is where my memory stops. I remember the before and the aftermath so clearly but I don’t remember what Jonathan told me in those five minutes. Something about the tests they ran, the call he got confirming it was cancer and the vague steps the doctors explained would happen next. I don’t remember those words. I just remember the tears and the deep sobs that needed to escape from my chest but were only released through short shallow breaths. I remember asking “are they sure?” as if this was just some simple clerical error that needed to be fixed. I remember the shakiness of Jonathan’s voice as he explained everything, and I remember both of us collapsing into each other as we hugged. My brain just shut down for those five minutes. Nothing was fully processed or retained. The white noise that I had grown accustomed to was gone. It felt like a train had hit me and all I could hear was metal screeching along. With my entire being in pain, my phone buzzed with a text. My boss was outside and waiting for me. 

Jonathan got the items together for me to bring out and I tried to piece myself together to look as normal as possible. My eyes, already swollen from allergies, felt like huge rocks in my skull. I took some deep breaths to try my best to keep from hyperventilating. I was dizzy and felt like I was going to throw up at any moment. Items in hand, I put my mask on to go meet my boss outside. One distinct moment that is burned into my senses is the feeling of trying to steady my breath as I went out. The sharp breaths I took sucked the fabric mask straight into my mouth and nostrils. As I walked out of the building, I felt as if someone was trying to suffocate me and the feeling made me panic. I paused in our courtyard for a brief moment, and ripped the mask off while gagging. I stood in place, pleading with myself not to throw up. By some miracle I didn’t, and gathered myself enough to continue forward. After the quick niceties and the items handed over, my boss took a good look at me and asked “Are you ok?” I fell apart all over again. Through my shallow breaths I was able to get out “They said he has cancer” and the sparse other details that I knew. This was the first person I was telling and I still didn’t fully believe it. In my mind, Jonathan was going to jump out from somewhere and yell “HAHA PRANKED!” My head hurt so much and the dizziness was still present. My flimsy mask was getting sucked into my mouth as I spoke and I had to take it off again. I don’t even remember what was said on my end or his end. The only thing I remember is him asking if he could hug me. I said yes and let him wrap his arms around me while I cried. That hug was worth breaking the Covid protocols. I can’t even explain how badly I needed it. 

After I calmed down a bit and my boss left, I made my way back into the courtyard of my building. I knew I should go inside but I couldn’t yet. I wasn’t confident in my ability to hold myself together enough to face Jonathan. Instead, I sat on a bench with my mask off and felt the sun’s warmth on my skin. I intended to have time to work through the information that I didn’t fully understand, but I couldn’t do it. The anxiety, fear and overwhelming nausea were too intense for me. I didn’t know what to do mentally or physically. So I began to write things down in my notes on my phone. I wrote about what was said and what was happening, in case I couldn’t bring myself to say it outloud another time. I worked myself up again, and I decided it was time to call my mother.  I cried to her, expressed my fear and she did what my mother has done in all of my times of need. She told me how much she loved me. She gave me the words of wisdom that I still hold dear and most of all, she assured me that we would get through this, and her and my family would be with us every step of the way. After our short, meaningful call and a few panicked text messages sent out to my sister, I gathered myself and made my way inside. 

After finally getting all the details of what was going on there was only one thing to do: Figure out how to tell the rest of our friends and family what was going on.Jonathan had already taken care of telling his mother but no one else knew. It was draining to go through the sparse details to tell my boss and my mother what was happening, and just thinking about doing it multiple times with multiple people left a knot in my throat. While we sat around, drenched in our fear, our friends texted us about things we were talking about earlier. How were we supposed to tell them that in a matter of hours our lives were changed? I started with my best friend. I told her I couldn’t talk, was ok at the moment, and then I told her the news. She was shocked and asked me questions. I answered as best I could and she told me she loved me. It was the first person I told and I was dreading having to do it again. Before I even had a chance to express that feeling, Jonathan told me he took care of it. When I inquired what he meant he gestured towards his laptop which had facebook open. There, in big letters, said one simple sentence:

                

I had to laugh. The absurdity of revealing this massive, scary news with a facebook status brought up a belly laugh I couldn’t control. That is my husband in his true form. While I worried myself over telling our loved ones, his “don’t sweat the big things, just get through it” attitude was laced into the words. I have always envied his ability to take things in stride while I always tiptoe around the edge of completely losing it. I relinquished my control of this situation and just let it play out. I couldn’t talk to more people yet and if this is how he wanted it to be handled, so be it. As we let the status settle, we decided to personally tell our bushwick family. While debating how to bring it up, Jonathan pulled the trigger and wrote

Hoping to spare them the torment of trying to figure out if Jonathan was joking or not, I added that this was real and what the diagnosis was. As expected, we were met with love and support and we needed it. Our close friends coming together to hold our hand through what was gearing up to be one of the scariest times of our lives mean the world to us. You often take for granted the phrase “If you need anything just let me know.” sometimes it’s said after a bad day, when there really isn’t anything to do about it. Sometimes you hear it after heartbreak, or while recovering from a bad hangover. Hearing it genuinely from our friends really gave us a sense of security when we felt so unbalanced. That small wave of love became a tsunami when people started to pick up on Jonathan’s facebook status. So many people, some of whom we hadn’t spoken to in months or longer, reached out to give us words of comfort. In our darkest moments, one by one our friends held up a candle to help us see. Before the day was done, we had enough light to help find our path.  

I know I’ve said this in different ways on different social media outlets but I will never be able to say it enough. To all of you who stood by us, checked in on us, cooked meals for us, sent sweet gifts to us, who just said I love you in our time of need: Thank you. Thank you from my entire heart. You all showed up for us in ways I didn’t think were possible. We love you so, so much. Thank you. 

One year, Part I

 In the blink of an eye, it’s the one year anniversary of Jonathan’s cancer diagnosis. It feels like that moment you come home after a long day. When you sit down on the couch and let out a deep exhale, the kind that you take a moment to let your lungs relax before continuing your breathing cycle over again. This passage of time, this moment of being here, still moving, honestly shocks me. There were so many moments where I felt so paralyzed with fear that I couldn’t process a single thing. That feeling was devastating, and often left me feeling inadequate and depleted. Life didn’t stop to let me work through all of that, we just had no other choice but to make plans of how to continue moving forward. 

In a year marred by chaos, I’ve been finding that my clearest memories are strung together by pronounced silence. I remember clearly silence after I finally turned off the news after listening to whatever nonsense that came out of the President’s mouth in his address to the nation in early March. I tried to steady my breath while coming to terms that everything about the routine I had calculated to keep my anxiety at bay would be disrupted. I remember clearly the silence after Jonathan and I discussed our fears on how we would be able to pay rent or bills, since I was the only person with an income at that time. For a few seconds, Jonathan’s words “we’ll figure it out, it will be ok.” hung in the air while we sat side by side at our kitchen island. I wanted to say “we don’t know that.” but I didn’t want the last part of our conversation to feel so hopeless. I remember clearly the silence seconds after Jonathan told me the doctors had diagnosed him with cancer. I remember clearly the silence after our phone calls with the doctors after they laid out all of our options. Oh god, do I remember the silence that weighed our entire existence down when we got home from his chemotherapy sessions. Those were the most painful silences that engulfed us and wouldn’t release until we went to sleep and came back as soon as Jonathan left for chemo again the next morning. 

Early into the pandemic, I perfected the skill of not listening to myself panic. I’ve spent the last 10 years with fear and doubt playing steadily in the background of all of my thoughts. Perpetual notes of cruel words and scenarios that make it hard to concentrate and spoil any goodness that tries to enter. A week before the shutdowns were put into place, my mind became an unbearable place to be. Was this going to bad as experts were saying it would? “No, you stupid piece of shit.” I’d tell myself  “This is getting blown out of proportion and you look stupid for being so afraid.” That all changed when everything shut down, when everyone was desperate for answers and the world came to a hard stop. For most of that time I almost felt a sense of validation. I was afraid for a reason, everyone was. The constant battle of back and forth ended and even though I still felt so anxious that I worried my heart would stop beating, there was this new silence. This one seemed to anesthetize me. With every new piece of information I received, those merciless words I was used to never came back. They weren’t replaced with kind words or any words at all for that matter. It just felt like white noise machine had been placed in my head. Breaking news: New York City is now the epicenter of the pandemic! Silence. Breaking news: No rental relief for anyone! Silence. Breaking news: Your husband has cancer. Your husband has cancer. Your husband has cancer.

More silence. 

Cleaning Out The House

Photo by Jonathan Fasulo

I’m a week away from moving and I feel like I could cry and crack up over it all at the same time. After 3 years, Jonathan and I are going to be moving to our own home. It’s a great apartment, not far from where we live now. A perfect kitchen that I can already picture myself baking in, a large downstairs for J to turn into a studio and finally, a deep soaking bathtub that I can relax in. J has been living in the apartment we’re  in now for about 8 years so when we got married, I moved into his space with him. I found a place for my things and we made it our home. It suited us and our roommates well, but we finally decided it was time for us to have our own home. Most couples will take this step long before marriage is in the picture, but we’ve never been like most couples.

Somehow, I’ve accumulated what feels like an endless amount of things. When I moved into my current apartment all of my baggage, physical and emotional, that I hadn’t dealt with were crammed in with the things I loved. Through three years of making this place my new home, I kept them hidden away.  In October of this year, nearly 5 years after the chaos of that relationship, I finally faced them head on. I cleared out the physical baggage and began to chip away at the emotional baggage. It felt incredible, powerful and most of all, like a weight on my shoulders was lifted. When all the tears had dried and the last of the bags were taken out to the garbage, I began to feel like a new me.

This blissful feeling eventually dulled down and a lighter life continued. I went to work, I played with Honey, I found a new hobby in covering random objects in my house with rhinestones. When we began to look for new apartments I was so excited about the prospect of a new home for us. I imagined us cooking dinners together and shooting anything and everything we wanted at any given time. The apartment we found now was perfect and I was ecstatic but for some reason, once it was ours I felt like I was choking.

After some great therapy sessions I had a bit of an idea: I was afraid to move in with my partner, alone. This sounded absolutely absurd when my therapist first suggested it. I was married to someone I love! In the three, almost 4 four years, I’ve been married to J he has never once made me fear for my life during an argument. We’ll argue, sometimes say things we don’t mean and even yell but never to the point of fear. How could I be afraid to move in with him? How could I be afraid of this next step? How THE FUCK could this still be affecting me? The confusion very quickly became anger and I began to tear myself down. This was my fault. I should be stronger and have gotten over this by now. I should have overcome something that happened years ago to me. Everyone has urged me to move on, I’ve urged myself to move on but here I was, still grappling with this piece of my past that was useless to me. While my mental health decided to take a sharp decline, my physical health decided to fail me as well. All of last week I was couch ridden due to a fun bout of strep throat and pink eye. I knew I should be packing, but my illness and anxiety kept me from doing it. Not an ideal situation, for a person needs to move at the end of the month.

Jonathan then left for a couple of days for a job down in Florida. He begged me to pack. “I really don’t want to come back and see that you haven’t packed a single thing of yours” he said as he kissed my forehead a on his way out. “Please do your part.” I spent the rest of the afternoon avoiding doing just that. I dove deep into the zen of covering items in tiny little crystals. I didn’t have to think about my past or my future. Just about the crystals. It sounds strange, but the it helped me, for a short while.

The following day after coming home from work I knew I had to begin. It started with a shelf that had all of my old journals. All of my words from 6 years ago, from the bliss I had to the words 4 years ago of pain, confusion and doubt. With them in my hands, I was tempted to read them all and reflect. To look back and see the growth and progress that was made, while packing the negative thoughts that would inevitably come rushing back to me into a box where I knew it would sit forever. Like the journals on this shelf they would still be there in my mind to collect dust. Still there to revisit and still there to eventually be unpacked. I sat with the journals in my lap for a few moments until my body, on autopilot, got up with the books in my hand. I walked through the doors and into my kitchen and without thinking, I opened up the garbage can lid and threw them away. I moved to the couch and sat for a moment in silence. I tried to remember what it was that I wrote in the Journals, but couldn’t fully. I knew it was something about how terrified I was, how isolated I felt, how awful everything felt but I couldn’t remember it. All I had were memories that had turned into lessons, but nothing physical to torture myself with.  

When I started writing this, the lovely app Timehop had caught a few of the things from my internet presence that I accidentally left behind. Like pieces of my old anniversary and the lies I told myself to keep myself sane. A trip to the museum that I begged for, a fancy dinner that I dressed up for and then told I looked “lumpy” in my dress after eating. For the first time in a long time, I didn’t remember this date with dread and anxiety. The app had surprised me with an ambush. Except this time, with confidence in my choice, I deleted them quickly and continued with my day. No doubt, no self shame, no breakdown. It felt good to do and the high that came with the clarity in doing it felt even better.  I’m prepared to find more things of this nature lurking in the corners of the internet and our apartment now and I’m ready to throw them all away and not look back.

The end of vocal rest.

My goal for this year was to write more. In the past, I found it extremely cathartic and therapeutic. Talking to you, to the void, to no one, to myself, always helped me get my truth out. Instead of repeating the same story over and over again, I put it all in one place and let whoever wanted to read it. For the last two years, I found I couldn’t write. I felt that my stories and my feelings were blocked up, as if every time I tried to get them out the lump in my throat would grow to the size that choked me. With every word I typed a new doubt popped into my mind. I called myself a child, an idiot, a fraud. I told myself that my feelings don’t matter. I told myself that I don’t matter. I went through my day, breathing and telling myself that as long as I stayed quiet, I would be ok. I didn’t have to say anything and I wouldn’t be heard. I could yell about dogs and sparkly dresses. I could go to work, come home, snuggle with my dog and repeat this motion until I died eventually. 

I bullied myself into losing my voice and couldn’t figure out why I had done it. My mother first noted that I had lost my voice in the aftermath of a relationship that ended in physical abuse. “You lost your voice when you were with him” she noted “and you should never let anyone dull your shine ever again.” I promised her I wouldn’t, and I never let another man dull my shine after that. If the person who I was dating didn’t like that I put myself out there, I would leave them in the dust. I was proud of that fact. It made me feel like my biggest cheerleader. When I met Jonathan, not only did he like that I put myself out there, he actively encouraged it. Even as my own thoughts turned on me, he bought me a journal from Italy and would tell me to let it all out. It’s easy to cut out a person who is putting you down and dulling your shine, but what do you do when your own worst enemy turns out to be yourself? 

2018 left me feeling like a dry husk of myself. While it was an exciting year filled probably the most adventure I’ve ever had in my lifetime, I had to sit myself down over a cup of tea and ask who I wanted to be in this world. I lost 2 family members who I loved dearly, I was watching my abuela lose the piece of herself I loved the most due to dementia and all the while, I was stuck in a rut of work, seeing the same friends on weekends, getting too drunk, and sleeping. I didn’t have anything that fulfilled me, personally. What were my passions? What did I like to do that wasn’t unrealistic for myself like traveling all of the time? If you asked me to describe myself I would tell you how much I loved being a wife to my best friend, how much I enjoyed the work I did or how much I loved my friends but I never could tell you about myself further than that. 

As a result, I decided to commit myself to writing more this year. Not to put myself down and to find my voice again. I’ve also decided to dip my toes into photography a bit again. Not doing fashion, but just shooting things in my life again. Nothing off the table, more vulnerability, more accountability, and just allowing myself to speak again, and speak clearly. I have my January post ready to go for later this week and I’m ready to work. 

Love you, I really mean it. 

Emma