After Life – Trying to Heal Without Letting Go

Lately I find myself haunted by memories. During waking hours, the smallest thing can set me off. Sometimes it’s explicit reminders, like visiting familiar sites that I associate with her or cataloging old photographs, letters, voicemails. Other times the connection is intangible – shopping at the grocery store at a certain time of day, overhearing unrelated snippets of conversation in public, even something as simple as watching the sunset alone. Every day, no matter where I am or what else is happening in my life, I find myself retreating inward, pushing others away, crying continuously and choking on the sobs that squeeze their way out of my body.

The Pain of Remembering

It’s been three months since my mother passed away but it feels as though I’ve merely blinked and time stood still. I still have the last text she ever sent to me saved on my phone, though I will remember her words forever. With her hands paralyzed, she used her thumb to type out each word, one letter at a time:

Jia cie kocham Buddy

Thanks for showing me California i love it

Thanks for all you did to help me

I was always be in ur heart

 

The next morning she didn’t respond to any of my texts. When I came into her room at the nursing facility I found her kneeling next to her bed in prayer looking scared, lost, confused. The nurses in her room urged her to stay in bed for her own safety. She had refused any food, water, or medications that day, and had likewise refused to let the nurses suction the back of her throat – an important, near-hourly process since she had developed severe difficulties swallowing. The look in her eyes was one of disorientation and desperation, a look I will never be able to forget. She knew it was the end.

I helped her sit on her bed, and when she refused to sit I helped her lie down. The nurses continued telling her to stay in bed so she wouldn’t fall. She was scared so I laid next to her, lengthwise, held her body tight next to mine while trying to reassure her (even though I knew that she was near the end), reminding her that I was present and that I love her.

She died in my arms and even after the nurses washed her body and set her in repose I laid next to her until just before the mortician arrived some time later. I have no idea how long I was there or what happened in the interim. I had to step outside to take a short walk and get some air, but otherwise phone calls were made, information was conveyed, all while I clung desperately to my mother’s arm on the twin mattress of her hospital bed. Looking back I can tell that I was strictly operating at a base functional level, that in those ensuing days and weeks I was not capable of rational thought or even rational emotions. Everything was in ruin and I remember very little, feeling for weeks as though I were standing stationary while the whole world moved past me, an inverse treadmill on a colossal scale.

Trying To Make Sense Out of Loss

This was not my first death. My paternal grandmother died when I was around seven years old and my paternal grandfather when I was 20. On my mother’s side, my grandmother died when I was 22 and my grandfather passed away two years later. One of my neighbors and childhood friends passed away when I was in my late-teens. During my junior year in college, a girl I had dated was in a canoe that tipped over, mere months after our brief relationship had ended. She’d moved away to Alaska for a job and drowned in the freezing water. My senior year in college, a friend and classmate who was only 20 years old drowned the exact same way, mere weeks away from graduating with his associate’s degree. Within the last three years another two friends from college have passed away, one by heart attack and the other by overdose.

So many lives to lose in one lifetime, made heavier by the realization that I’ve just turned 33 and will undoubtedly experience even more deaths as time continues to pass.

But this death was different.

I’d bounced back from each of those other losses, managed to continue carrying on with my day-to-day life. Those deaths make me sad when I dwell on them, but the emotional wounds have healed enough that I don’t think about them involuntarily.

This death left a perceptible hole inside of me – I can still feel it, this cavernous void inside myself, nearly three months after her passing. It’s less raw than it felt in the days and weeks immediately after her death, but it still stings with every thought, every breath, every movement, every single day.

I’d read all the self-help platitudes and heard all manner of condolences: It gets easier. You’ll move on. Time will heal all wounds. But it hasn’t gotten any easier. I haven’t moved on. My wounds still sting with freshness.

In some ways, it felt incomprehensible to me after her death that life could just go on. And of course it does; logically I know this. Countless people die each day, countless new lives are birthed each day, all of humanity a tangled mass of bodies inhaling first breaths and exhaling last breaths for hundreds of thousands of years after millions of years of evolution (a mere snap of the fingers on geological and paleontological timescales). Why should one death determine things differently? But that first morning after she passed, confronted by her absence, it felt unfathomable to me that the sun could have risen, that the rest of the world could keep going without missing the slightest beat.

Six weeks to the day after my mother passed away, Stephen Hawking died. I took his passing harder than any other celebrity death because he was more than just a recognizable name to me; he had been my personal hope for my mother since her diagnosis. He lived with ALS for decades while continuing to have a fulfilling, meaningful life, and I had desperately clung to the belief that my mother could, too.

 

img_0203
No matter how much ALS affected her, my mother never lost her ability to smile.

 

I wanted her to outlive the illness, to outrun it and savor every day we had together. Of course, that last part is exactly what happened – we spent nearly every day together after she moved to Los Angeles, and we loved every moment we had together. I’d visit her after work, eventually leaving my office job for a freelance, work-from-home position to make it easier for us to spend time together. It was exhausting at times, especially when I was commuting from my office to my mom’s, not getting home or eating dinner until 10:00, 10:30, 11:00 at night. And yet, because of the memories we made together, I wouldn’t trade those exhausting nights and sleep-deprived mornings for anything. They were not our happiest memories; each of us was keenly aware that our time together was limited. But each moment we spent together was infused with so much love and understanding, as though she knew I’d need those memories and those moments of love to carry on without her.

Every day I’d help her open her mail and write bills, deposit checks, read cards and letters out loud to her. Every night when I left to go home I’d hug my mom, kiss her on the cheek, and as I walked to the door I’d wave and say Jia cie kocham (“I love you” in Polish). I never deviated from this because I wanted to remember the exact thing I said and did, knowing that any night could be the last time we’d see one another in this life.

img_0713
The day before my mom passed away, we took a long walk around her neighborhood. She couldn’t reach the roses so I picked this one for her to smell. Roses were always her favorite flower.

Those memories bring me a great deal of comfort because the brevity of her remaining time was always on my mind, but her composure was always one of peace and contentment. Sometimes we’d sit outside next to each other and watch the sunset, an explosion of color in the California sky. Other days we’d walk through the garden and smell the fragrant jasmine that covered the grounds of her nursing community, or I’d push her in a wheelchair all around her neighborhood and we’d pick flowers that grew along the sidewalk. On days she didn’t want to go outside we’d lay side-by-side on her small hospital bed and watch TV together. During Jeopardy and Wheel of Fortune I’d call out answers aloud and my mom, unable to speak, would either rub my arm or nudge me with her elbow, smiling and nodding with approval when I got the answers right.

I also have fond memories from what turned out to be our last Christmas together. We watched carolers sing Christmas songs outside while a fake snow machine blew flurries across the nursing community’s yard. I helped her decorate her room, and she was so pleased that she asked me to leave the string of lights up past the holiday season. They hung on her walls and around her window until the day she died in February, when I switched them off as I left her suddenly-vacant room that night.

I’ll never forget that she kept the lights on around the clock, perhaps a reminder of happier times and simultaneously an emblem of hope – that no matter how dark the world seemed, she would always be surrounded by light.

 

Holding Onto Hope

About two and a half weeks after my mom died, her life having slipped away in my hands, I locked myself in the bathroom and wrote a suicide note. I honestly don’t know how it happened. I’d been crying until my face hurt, and when I went to wash my face I simply sat down and it all poured out of me: all the pain, the self-loathing, everything I’d been bottling up inside for weeks since her death and even longer – for nearly two years since her diagnosis. I didn’t act on those impulses, but I felt like I needed to get the thoughts out of my head and put them into written words. In the wake of my mother’s death I genuinely didn’t know what would happen with each passing day. Every time I closed my eyes I’d see her face, the expression she wore when she took her last breath. I couldn’t erase or replace that image, no matter how hard I tried, and it haunted me.

It felt impossible to go on, and the guilt of having survived while such a good person perished weighed on me constantly. I’ve struggled with chronic depression and crippling anxiety since I was a teenager, so self-doubt and fear have consumed me for more than half of my life. There were so many times through the years when my emotions felt impossible to manage, but never so bad as those weeks immediately after my mother had died. Seeing her every day, helping her in any way I could, and spending as much time with her as possible had become my whole world.

With her gone, I felt I had no purpose, no future, no reason or right to keep living.

My lifelong friend and childhood neighbor, who worked with my mom for several years and became one of her closest friends, told me I had to have hope. I saved her words in writing, like my mother’s texts, and I’ve returned to them many times when things have felt too heavy. I’d like to offer them to anyone else struggling with a loved one’s illness, because I think my friend’s words ring true:

“We have to find hope and optimism where we can,” she said. “Otherwise ALS claims you too as collateral and you can’t let that happen.”

I’d been feeling as though I couldn’t go on since her death, but my mother didn’t have a choice. If she could have, she would have kept living, no matter how much of a struggle it may be.

Continued therapy has helped me process my grief in a way that takes some of the burden off of surviving her, and to anyone who has lost someone or who is watching a loved one die of an illness, my resounding advice is to work with a therapist. I’ve talked to so many people who feel they would benefit from therapy but have a vague fear, an apprehension, about actually seeing a therapist. I honestly can’t imagine losing a loved one and not working through it in therapy. Going on without her hasn’t gotten any easier, but it’s begun to feel increasingly possible. Every day is a small offering to my mother, an atonement for her own lost life.

Coping With Loss

We all have our own ways of coping with death. For me, the process involved a lot of withdrawal. I spent many days cloistered inside. I developed unhealthy habits and stopped doing the things that I enjoyed. I stopped grooming myself, spent whole days indoors eating junk food while looking and feeling like a senseless mess. Because that’s what my life felt like: a tangled, meaningless web of days and weeks and years leading up to loss after inevitable loss – nothing made sense, because how could it in moments like those?

In the weeks and months that followed my mom’s passing, I found that I suddenly understood the weight that my grandmother’s death must have had on my mother – the weight that everyone bears when they lose a loved one. I was reminded that it’s normal to struggle with loss, that we all grapple with death in our own ways and in our own time.

Death can feel so isolating, so lonely. It’s a universal experience that is so intimate, so overwhelming, we often feel like we cannot talk about it, as though no one else could possibly understand such a loss. And yet, everyone has lost someone they love or will eventually lose someone. Why shouldn’t we be able to discuss it with others – if not for our own benefit, perhaps for theirs?

Dreams

Over the past year, memories of my mother have entered my dreams with some regularity. It started while she was still alive last July, the day before my mother’s 62nd birthday, her last birthday. I dreamed that she picked me up from work and was asking about my day while she drove us to our destination. Everything felt familiar but slightly off. It wasn’t until I woke up that I realized my mom was healthy again in my dream. Her speech wasn’t slurred, she hadn’t lost any muscle function – in my dream she had never even gotten her diagnosis. It was the first time in my life that I’ve ever woken up and started crying, but it wouldn’t be my last.

Three weeks (almost to the day) after my mom’s passing, I had another dream that caused me to wake up in tears: I dreamed that she was healthy, could move and speak with ease, and we walked around together in a city or town I didn’t recognize. We came across an ambulance and my mom said goodbye to me before getting in the back. She wasn’t afraid and she wasn’t suffering. She was content – she said in the dream that it was simply her time to go. In my dream I was wearing rollerblades and I skated after the ambulance, chasing it outside of town over rolling hills and prairies that eventually led to a National Forest. It wasn’t a forest I had ever seen in real life, but I actually dreamed about my mother and I hiking in this dream forest several months or years ago. On an isolated forest rode I lost the ambulance for good, watching it trace the road and rise up to the horizon before dipping out of view down the other side of the hill. That dream led me to wake up in tears, already crying even though I had still been asleep.

mom hammock vacation
On vacation together in 2003, which seems like a lifetime ago.

Healing What Remains

When a tree is gashed, whether by nature or by human hand, the wound closes over whatever has landed inside the inner grain. I’m always amazed by photographs of trees that have grown around items they were tethered to: old sign posts, fences, an old axe blade left cleaving the trunk, even long-rusted bicycle frames. What fascinates me most about lumber is that cut wood swells and contracts, a long-dead organism breathing in and out with the moisture in the air. It will continue to do so forever, long after it’s been cut. It keeps living, in its own way. I suppose memories are much the same way: even after periods of dormancy and seeming normalcy, some days they swell and expand, pushing their way into present awareness.

After three months, I still think of my mother constantly. Not a day goes by that I don’t remember something she said or did, or simply think of her face, and fall into tears. I cherish our memories but struggle not to become overwhelmed by the weight of them. I hold onto her belongings like talismans in the hopes that they might bring her back, yet I struggle to find space for the mountain of mementos that crowd my small apartment. The truth is that I still don’t know how to keep going without her – each day is a process of figuring it out a little bit more.

 

 

Advertisements

Guilt of the Living

Coping with guilt when someone you love is dying.

There was a visceral, discernable sense of guilt I felt the day I learned of my mother’s diagnosis, and against my best efforts at shaking that feeling, it persisted for months. For lack of a better phrase, I’ll simply call it “survivor’s guilt.” I kept repeating, over and over, “It’s not fair.” I said this mantra to myself when I’d cry in the shower every morning, to friends I’d spoken with about the diagnosis, to seemingly anyone willing to listen – it isn’t fair.

The events of the past few weeks have resurrected this concept in my mind with even greater clarity. Survivor’s guilt is typically experienced by victims of trauma: survivors of natural disasters, acts of terror, any tragedy in which a person watches other people die and yet somehow, against all odds, manages to survive. Psychologists characterize this phenomenon as a self-imposed sense of guilt over things beyond an individual’s control, as though a person had somehow done something wrong or committed some act of immorality by surviving what others could not.

It’s been over a year since my mother’s diagnosis (a Freudian slip – I mistakenly typed “over a tear”), and yet I still struggle with these feelings of guilt. I haven’t survived a traumatic incident – thankfully, I’ve never witnessed any disaster more severe than a car wreck – but I can empathize with the sense that one might feel afterwards. This kind, loving woman I care about is dying of a degenerative disease, and yet I’m somehow unscathed. I find myself simultaneously fearing the possibility that this disease is hereditary and, at the same time, feeling guilty for even having those fears for my own wellbeing while my mother’s health declines.

After growing up in a Catholic home and attending weekly mass for the first half of my life, I haven’t considered myself a Catholic in a long, long time. I stopped going to church many years ago, though I still frequently felt compelled to pray. Through the years I’ve struggled with the dissolution of my faith, but when my mother received her diagnosis I began to pray every day. I prayed that her diagnosis might be incorrect, that she would be okay, and I prayed that if someone had to die it ought to be me instead of my mother – anyone but her. She’s always been the kindest, most patient and caring person I’ve ever known. She didn’t deserve her diagnosis, and by extension, I felt that I didn’t deserve my health.

A memory: I was very young, around eight or nine years old and driving with my mother on a Saturday morning. We stopped at the bank on French Road and Transit in my hometown and my mother made a withdrawal in the drive-through. She parked to count the money and realized that the teller had mistakenly given her an extra $20.

“Wow!” I said. “That’s good luck!”

“No, we can’t keep it,” my mom said. “It’s not ours; it wouldn’t be right to keep the money.”

To my disbelief, she ran inside and returned the money to the bank. It’s a moment I’ll never forget because it was instrumental in helping me form my worldview. It made me realize that the world is not a moral place; the world is made good or bad by the people who inhabit it. As a young child, I realized so clearly in that moment that we are in control of our own morality.

But how, then, is it fair that someone so selfless and considerate should find herself losing control of her own body?

I suspect that everyone who loses a loved one or otherwise watches them suffer has had the thought at some point: it’s just not fair. No one deserves this type of diagnosis, and yet our initial response is almost invariably, “It should have happened to anyone else but them.” But who truly deserves these horrible circumstances? If you were granted the power to transfer illness or misfortune from one person to another, knowing that your power could ruin or kill a stranger, would you do it? Could you do it?

I struggle every day to make sense of the illness that’s affecting my mother. It’s taken me almost a year to actually acknowledge to myself that her ailing health is not my fault. I struggled with these feelings of guilt as I remain healthy. It’s taken months of therapy to be able to recognize and to say to myself: I haven’t done anything to cause these problems, and unfortunately, there is nothing I could possibly do to resolve them. There’s no logic or order to it – just a random genetic mutation by all accounts – and yet that in itself is part of the fear. We depend on systems of order, needing them for our continued sanity and sense of safety. When the fragility of those systems becomes apparent, I often find myself wondering, “If this could happen, what else could happen? What other unseen tragedies and misfortunes lay ahead?”

The sense of guilt over my good health, coupled with the fear of unexpected calamity and chaos, often leaves me feeling lost and confused. Because I have obsessive-compulsive disorder, I’m often compelled through some hard-wired impulse to try and make sense of the world, to order the chaos around me, even in small and insignificant ways: rearranging things on a table top, washing my hands even when they’re clean, counting ceiling tiles, looking for patterns in the grain of a wooden door or table, even just asking for confirmation from others that they’re not upset with me over some minor slight (real or imagined). It helps me feel in control of my circumstances, my surroundings, at least for a fleeting moment.

The problem is, there’s no way to make sense of the senseless, the chaotic, the random awfulness that pervades our lives. When catastrophes have fallen on friends in the past, I’ve told them again and again that they can’t blame themselves – that there’s no one to blame, no one at fault. These things just happen. And yet I struggle to allow myself this same comfort, just as I’m sure many others who’ve watched their loved ones suffer have also found ways to blame themselves. The anxious mind performs acrobatic feats to justify self-blame, self-doubt, self-loathing, and every day I struggle to see the clear, objective reality of the situation.

The reality of the situation is that bad things sometimes happen to good people. When I strip away the veneer of order I’ve tried to impose on the world, I see the chaos that lies beneath. My mother, however, has maintained her faith. I’m always moved by the firmness of her beliefs; in truth, I envy it sometimes. Where I see a random mutation, a disastrous illness, my mom sees God’s work. I’ll never forget her words when she first described her illness: “I had hoped to live longer, but God has other plans for me.” I’m still moved to tears when I think about those words.

In truth, I’m not sure what faith means to me today. I understand that for others it can provide a sense of purpose, an emotional and spiritual comfort during times of trouble. I adhere to a lot of Buddhist beliefs and ideologies, but it’s not something I can really feel capital-f Faith in. I still pray in my own way, but it’s more a deep-seated hope that everything will be okay. I suppose more than anything else I find myself believing in other people. I believe in my mother, my father, my partner, my friends and family, acts of kindness from strangers. It sounds hoaky, I know; but what else is there to take stock of in this life? If the people who inhabit the world make it a pleasant or a miserable place to exist, then surely the people who actively work to be kind and patient in the face of adversity are living saints among us.

I believe in people because I need to know that there is good in the world, that there can be some semblance of order amid the chaos. To those who are suffering, who are watching their loved ones suffer, my only advice is this: remind yourself daily that this is not your fault, and don’t give up your faith – even if it’s nothing more than believing in being kind to strangers, always hold onto that belief and try very hard (even when it feels impossible) to believe in yourself as well.

Where to begin? Pt. 2

mom delaware park

The decision came quite early. My mother and I discussed our options over the phone several weeks after she received her diagnosis. Even though my parents were divorced, I discussed it with both of them. I mentioned the possibility of moving back to Buffalo, though both of my parents pointed out that I wouldn’t get very far career-wise by moving back to my Rust Belt hometown.

“That wouldn’t make sense for you,” my dad said. “There aren’t any jobs here. There’s no opportunity for you here anymore.”
“I mentioned to mom that she could get really good care out here,” I said.
“What did she say?”
“She said she didn’t want to be a ‘burden.’ I told her she could never be a burden. She always planned on moving out West, wherever I was living, once she retired and I was settled down somewhere.”

Indeed, my mom had spoken for years about leaving Buffalo someday. It started in the summer of 2007, when I quit my cashier job after several months of saving up my paychecks and drove towards the Pacific. I was on summer break about to go into my senior year of college. My mother had flew out to Wyoming and accompanied me through that state and on into Montana, Idaho, Washington, Oregon, and finally California. We both fell wildly in love with the northern Rocky Mountains and the seemingly endless beaches that sprawl along the entire Pacific coast. In a work-related conference my mother participated in just a few years ago, she wrote in her professional bio that she lives in New York but plans on someday “moving with my son to the West Coast.” I wasn’t even living out West at the time, but we both knew that it would happen one day – only neither of us suspected the circumstances that would catalyze that moving day for my mom.

IMG_7180
My mother and me in Olympic National Forest, 2007

Having grown up in Buffalo, NY, we’ve both always held a special place in our hearts for our hometown. But my dad was right – there were no jobs in my field in my hometown. There weren’t many jobs opening up in general at the time, outside of the medical sector and the service industry. Over the coming weeks and months I scoured the web for jobs I’d be qualified for and found practically nothing. The positions I did find were unpaid internships and independent contractor positions that paid minimum wage and not a cent more. In Los Angeles I was making enough money to start an IRA account to plan for my retirement. My girlfriend and I have even begun talking about the possibility of saving up for a house some day. Neither would be feasible if I were making $9/hour in a position with zero growth opportunities. It wasn’t an easy decision, but both of my parents agreed that moving back to Buffalo would be a mistake that would set my career back and ruin my financial plans for the future. Many relatives disagreed with this decision – some reactions were aggressively confrontational to the point of hostility when I asked for assistance making phone calls to facilitate the move. As frustrated as I got, I try not to hold resentment towards them. I’m sure that in their own way, they want what’s best for my mom; it just pains me that they doubt I want the same thing. If we had a calm conversation about it today, I would refer them to the Caregiver Bill of Rights, which reminds us that as a caregiver,

“I have the right to take care of myself. This is not an act of selfishness. I have the right to protect my individuality and my right to make a life for myself that will sustain me in times when my loved one no longer needs my help.”

I was effectively signing up to be a caregiver for my mother, and in order to do that well I would need to live in a place where I had a steady job with a decent salary – an accommodation which, unfortunately, my old hometown could not provide. When I talked to my mom about wanting to help take care of her and spend more time together, she kept returning to the notion that her health would be a “burden” (her words). That was proving to be a hurdle in our conversations, and eventually I had to bluntly tell her, “You’re not a burden. You could never be a burden. I love you and I want to help you.”
“What about Audrey?” she asked. She worried about how my girlfriend would feel during all of this. Audrey and I had discussed it extensively – in fact, in the event that we weren’t able to move my mother out here for whatever reason, Audrey was willing to move back to Buffalo with me if it came down to it.
“Audrey cares about you, too” I said. You’re not a burden to either of us.”
“Could we go to the ocean?” my mom asked.
“Of course,” I said. “If you ever reach a point where you can’t walk, I’ll push you in a wheelchair myself. We’ll go to the beach and up the boardwalk and dip our feet in the water. You and me.”
“I’d like that,” she said. “I think I’d like to move there.”

mom santa cruz
My mom at the Pacific Ocean in Santa Cruz, 2014

My mother felt good about the decision, and so did I. My father was also supportive. He knew how much I wanted to help, and he recognized that California was a more practical place to live.

“It just makes so much more sense,” he said. “There’s no snow to shovel, no icy sidewalks. She won’t have to stay in her room all the time when it’s 80 degrees and sunny every day.”

Other family members continued to voice a lack of support. I vented about the exhaustion of this uphill battle to my father, who reminded me that the opinions of anyone not actively working to be a caregiver for my mom didn’t really matter.

“They can think whatever they want to think,” my dad said. “None of that matters. All that matters is that you and mom are happy. This is what she wants. She wants to be with you, and you want to help her. Don’t let anyone else get in your head when you’re doing the right thing.”

I thought about that conversation many times as I made preparations to help my mother move 2,572 miles. My father and my girlfriend offered me assistance in any way they could, and a couple of my mom’s good friends helped make some phone calls when I was too exhausted and overwhelmed to keep going alone. Still, it was an ongoing struggle that continued to test all of us for months.

“Don’t let anyone else get in your head,” I reminded myself. My father’s words became a sort of mantra for me during that time, and I still think of those words with some regularity. Any time I get frustrated or exhausted, I remembered that I’m doing this for my mom, and I know that it will all be worth the effort if I can improve her quality of life in any way.

My search started with apartments for my mom to move into. She was still living on her own and even driving her car at the time, but as with many ALS patients, her abilities and independence decreased in direct proportion to the increase in symptoms. My apartment hunt quickly turned into a search for independent living for seniors, where she’d have the opportunity to segue into assisted living as her condition advanced. That soon collapsed into a search for assisted living communities, and finally, for nursing communities. When all was said and done, I personally had called, emailed, and visited between 30-50 locations. Then, with the help of my mom’s friend Mary, we found Solheim.

 

The location was perfect. It’s about halfway between my apartment and the office where I work, making visits easy enough to be an everyday occasion. Solheim had positive reviews online, and when I toured the community I knew it was a safe place for my mom. You can talk to as many administrative people as you like or read all the reviews that are posted online, but you won’t have a complete sense of a place until you visit in person and see it with your own eyes. I knew my mom would get good care here, yet still have the independence to sit outside alone and read in the courtyard or by the garden fountain. I sent photos and videos of each of the final contenders to my mom and to a friend of ours, and everyone agreed that Solheim was a good fit.

18740167_666622487153_2073933512282075520_n
My mom’s first week at Solheim – taken in the Solheim jasmine garden May 26, 2017.

Facilitating a new home for someone typically feels complete once a rental agreement is signed, but this was my first time finding a residence for someone besides myself, and nothing would be certain until my mother saw it for herself. Her approval was all the mattered. It was going to be an adjustment for her no matter where she moved into. In July or August 2016 my mom had sold our two-story home in Lancaster (just outside of Buffalo), where I’d grown up. In many ways it was a sort of severing of ties for me and my hometown. I’d lived in several different cities and states through the years, but until I moved to California I’d always maintained my New York residency. Any time an official form asked for a permanent mailing address, I’d list the house that my mother and I shared for most of my life and half of hers. She sold it just a few months after receiving her diagnosis, knowing that soon she would have problems climbing the stairs every day, to say nothing of the yard work and general upkeep that home ownership requires. She had moved into an independent living community for seniors and downsized from a whole house to a modestly-sized one-bedroom apartment. Her unit had a full kitchen, bathroom, and washer/dryer, since she was still fully independent last Autumn. By Spring of 2017, she was no longer able to drive herself and her daily showering/dressing routine was becoming increasingly difficult to do alone. Now she was moving into a nursing community, where her needs would be met by nurses and aides. For an independent woman like my mom, that would be a challenge to get used to. However, her own physical limitations continued to grow beyond what could be easily managed at home with some light assistance, and they had already long-surpassed what she could manage on her own.

I flew out to Buffalo to help my mom with her one-way flight back to Los Angeles. My father drove us to the airport, and before we parted ways he said that he knew I would take good care of my mom. We waited at the airport for a wheelchair for my mom. She can still walk, but she gets fatigued easily and she’s lost a lot of muscle strength. When I held her arm for the first time to help her stand up, I was shocked at how easily my hand fit around her bicep. She had never been a weightlifter, but my mother did go to yoga and zumba classes often enough to maintain a consistent muscle tone for many years. I wheeled her through to the security line. A TSA agent directed my mother towards one line for travelers who had been “pre-screened” and approved by the TSA, but I was directed towards another line.

“Please – I need to go with her,” I said. “She’s disabled and she can’t speak.”
“You can’t go with her,” he replied coldly. “She can go with you to the regular line.”
“Yes, but she can’t take her shoes on and off,” I said. “She has ALS, so it’s-”
“You can’t go with her,” he repeated.
“She needs someone with her to answer questions because she can’t speak,” I said.

His patience grew even shorter, and someone in the line behind me audibly sighed and started murmuring. It may have been bureaucratic business-as-usual for the TSA, but for my mother and me it was the first of what would turn out to be many frustrating inconveniences that stem from a basic lack of understanding over what ALS is and how it affects individuals. Eventually I relented, told my mom I would meet her on the other side of security, and waited in a long queue with other weary travelers.

Afterwards at our gate I apologized to my mom. She seemed unphased and unbothered, but I felt like we had been treated unfairly. I tried to make it up to her by rushing to grab applesauce from the airport convenience store so that my mother would have something to eat on our flight. She was already having great difficulty with solid foods, and we worried that the duration of the flight would leave her famished by the time we landed in Los Angeles. I hurried frantically, afraid to leave her alone for long. I realize now that this was the start of a long, gradual change in the dynamic of our relationship: for most of my life, my mom had taken care of me in some form or another. From childhood, when I was helpless on my own, to recent years when I was stressed out in grad school and needed someone I could talk to on the phone about my problems, my mom had always been there for me. Now it was my turn to help take care of her.

18622304_666000867883_5094863085621267022_n
May 21st, 2017 – my mother looking out the window at the lights of Los Angeles as we flew in towards LAX and started a new life together.

I let my mom have the window seat because I wanted her to be able to see Buffalo and Los Angeles from above. I glanced over her shoulder and watched the rusting grain elevators, the waterfront, and the skyline of downtown Buffalo grow gradually smaller and smaller until it strained my neck to see them as our plane turned and aimed us southwest. As we approached LAX on our descent several hours later, I excitedly pointed out the Los Angeles skyline, the sprawling circuit of streetlights and car lights and illuminated houses that populate LA County, all of it a twinkling mass of little lives, just as important to the people living them as this life is to my mother and me. That’s the thing I love most about big cities – for some, the vastness and overcrowding feel uncomfortable, but I relish being a part of something so huge and complex. Each little light was a life; some were happy lives and some were marked with tragedy and misfortune. Some were celebrating birthdays and new births while others were mourning recent deaths. In the daily chaos of life it can seem like the world is indifferent and uncaring, but when you see whole communities from above you’re reminded that we all share the same basic wants and needs, that your life is no more important nor any less meaningful than any of the other lives you bear witness to. I was nervous, taking on this new role, as I was sure my mother was nervous about moving across the country, but I knew before our plane even landed that no matter what else happened, we would still have each other.

19731785_1384184105000626_1857394643504687821_n
Summer 2017 – day trip to the beach and Santa Monica Pier

Where to begin?

cropped-img_4060.jpg

In group meetings, everyone is asked to greet the room with their name and date of diagnosis. It feels diminishing to identify someone by their illness, though it does become difficult to dissect the person from the condition as the symptoms spread and irreversibly alter the individual’s relationship with their own body. During these monthly meetings I take comfort in thinking about my mother as I know her – not merely as someone who was diagnosed with ALS on April 26, 2016, but as an inspirational woman, a compassionate mother, a caring friend.

 

Christine Gryko was born in 1955 in Buffalo, New York. The daughter of two Polish immigrants, she grew up speaking both Polish and English with equal comfort. Like many people who came of age in the late 60s and early 70s, my mom wore her straight, blonde hair long – in some photos it extends all the way down past her waist! She wasn’t part of the psychedelic crowd of her time, though – instead, she focused on her studies and worked at a butcher stand at the Broadway Market while earning a bachelor’s degree. After graduation, my mom started working at Buffalo Medical Group, a medical facility where she’d interned during her studies. She started out working as a medical technologist, spending most of her career at BMG. In the late 90s she accepted a job at Buffalo General Hospital, but she ultimately found her most fulfilling professional role as Quality Assurance Supervisor at Roswell Park Cancer Institute. My mother took my grandmother to Roswell Park for chemo and other treatments before cancer took her. For my mom, working at the place that had at least tried to save her mother seemed to offer a great sense of purpose, a continued closeness with my grandmother, and an ability to help other people – perhaps even to ensure that someone else’s mother gets the lifesaving care that she needs. My mom worked at Roswell Park until her illness robbed her of her ability to speak and use her hands, making it impossible to continue to work.

19029593_668586156943_1621232494786869189_n

My parents were married for about two to three years, though they were divorced when I was around six months old. I was their only child. My mother never dated anyone after my father, other than having coffee with a man from church a few times about two years ago. When I was growing up, I used to ask her why she never dated anyone else. She said she was worried that if she ever had another partner, there was a chance they might not treat me well. She gave up on love to be there for me and ensure a better future for me. I encouraged her to try dating again on many occasions, but she never did. Because of her incredible maternal dedication and the sense that we were together through joy and sadness alike, we developed a close relationship as both mother/son and as best friends.

During college I developed a love of hiking and spending time outdoors. When I told my mom about it, she said that she wanted to try it out and come with me. What developed from that initial curiosity was a series of immensely enjoyable day hikes and even a few backpacking trips. We’ve hiked together in New York, Illinois, Arizona, Utah, Colorado, Wyoming, Montana, Washington, and California (more on this in a future post).

IMG_8312

My mom first noticed the onset of her symptoms in April 2015. Neither of us remember the exact date, but she saw her doctor about it on April 29th, so it was probably within one to two weeks prior to that appointment. It started out with a slight but persistent slurring of her speech and a subtle loss of strength in her right hand. Her doctor dismissed the hand weakness as either the onset of arthritis or a pinched nerve. He recommended that my mother see a speech pathologist/therapist to determine why she was slurring her words. It was the speech therapist who finally told my mother after several months, “I’m not a doctor, but I think you should get tested for ALS.”

I dismissed the suggestion outright when my mom told me about it. “No one in our family has ALS,” I said. “The other common cause is environmental exposure, but you’ve worked in a medical lab your whole life, not in a factory or anything like that.”

I remember being angry that the speech therapist had even put the idea in my mom’s head. She wasn’t a doctor and had no right to make speculations like that. What if she’d said that to someone who was severely depressed, I thought. Getting news like that could push someone over the edge, and this person wasn’t even qualified to suggest a diagnosis to a patient. Ultimately, that speculation was what would end up eliciting the diagnosis that all of her doctors and specialists had missed.


On April 26, 2016, a neurologist told my mom that she had a neurological disorder that was incurable. I still remember the way I felt when she told me. I had recently gone through a bad breakup and moved into a studio apartment in East Hollywood. I had been celebrating my newfound independence after two years of feeling neglected and mistreated. It was an otherwise optimistic time and I was in my new room standing near the television when I got her text. She’d sent it to both me and her brother. It read, “The doctor said I have ALS. I’m too upset to talk on the phone so I just wanted to tell you both at the same time.” It took me a minute to fully process what I’d just read because it was so thoroughly unexpected that it felt surreal and impossible. As soon as I recognized what was happening, I called my mom. She answered and said nothing, just cried. I instantly started crying too, and neither of us spoke for some time. We just cried, and I pictured the heartbreaking expression my mother always bears when she’s deeply saddened, pictured her perhaps sitting alone in her car in the parking garage outside the doctor’s office or perhaps back at home already after driving with a mixture of disbelief and sorrow, and I wanted more than anything to hug her tight while we wept, to remind her that she’s not alone, but we were 2,546 miles apart and the helplessness that I felt in that moment and would come to feel in the coming weeks and months only added to my anguish.

 

In my next post: coping with grief, reuniting with my mom, and picking up the pieces to start a new life together:
https://thisbittersweetlifeblog.wordpress.com/2017/08/08/where-to-begin-pt-2/