It is cliche to say that life continues after receiving a diagnosis. Well, I guess life does continue for some duration of time. Breath does not cease, blood still circulates, and the heart still beats. However, the scientific term for life does not represent its colloquial meaning. I think we can all agree that breathing, blood circulation, and a heartbeat do not make up our sole requirements for living. Life is also our interests, experiences, and highs and lows. A lot of what makes life worth living is the people that surround us, the relationships we share, and who we love. To say that life continues post-diagnosis is to say that all of the parts of life we value so highly remain constant. Unfortunately, this is not often the case. Diagnosis infiltrates a lot more than the body. Just like life is not solely reliant on breath, blood, and the heart, a diagnosis does not remain confined to the walls of your flesh. Its emotional, social, and familial impacts span far beyond what it can do physically.
I never imagined I would be sitting here, writing this commentary on diagnosis. What do I know about health? I’m not premed. In fact, I run from biology (and most science classes, that is). I can assure you that the contents of this piece will not rely on my scientific expertise or interest in the medical profession. What it will rely on is my lived experience: one that I could never have anticipated and one I struggle to put into words as I write this.
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Growing up, I dealt with some “typical” childhood trauma. My parents divorced when I was three years old. Pretty standard, right? Lucky for me, their commitment to amiability and equality made my experience with divorced parents as smooth as could possibly be. My time was split evenly, and, in my eyes, my parents were friends. They each gave me the world, and I was a really happy kid.
My dad and mom both remarried when I was five years old. When I was 12, my mom divorced my stepdad, who walked out on her on Christmas day and later was found to have engaged in some incriminating tax fraud. Okay, a little less basic… Once my stepdad was out of the picture, my life returned to a new sense of normalcy. My mom and I moved to our cozy little house in an urban Seattle neighborhood, and I still split time with my dad and stepmom, who lived nearby. This new sense of normal got me through middle school and into my first year of high school. At the end of my freshman year, the unexpected happened: diagnosis.
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The agonizing part about health diagnoses is that they are often purely a stroke of bad luck. My parents’ divorce(s) could be attributed to poor choices, immaturity, and incompatibility, amongst other things that are within human control. Getting a “bad break,” as my dad would call it, really cannot be traced back to any one decision. It’s the same agony felt when going through a breakup with a partner who did nothing wrong. As much as you wish you could hate them and curse their name for their actions, you can’t. You just have to sit there, feel the pain, and realize there’s nothing you can do but cope with reality.
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My dad’s early-onset Parkinson’s diagnosis was a fairly straightforward prognosis. He was told that his body would slowly stiffen, his movement would become progressively inhibited, his speech would slur, and it would be increasingly difficult to swallow. The doctors could not predict the exact timeline of which my dad would notice this progression (called “stages” in the Parkinson’s world), but they knew it would happen. The mental impacts of the condition were less clear but still communicated. The doctors shared that his mental processing would slow down eventually, it would be more difficult to locate words that used to be easily accessible in his vocabulary, and his medication would produce side effects that mess with his impulse control.
What I have found to be true about words is that they are just that: words. When you hear them for the first time, you have very little capability to imagine how they will take their form, become a reality, and change your life as you know it. I will not discount the fact that these words were terrifying to my dad. What I will discount, however, is that no one in my family was prepared for how these symptoms, a concise list of bullet points on my dad’s visit recap sheet, would completely alter the life he had built.
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A diagnosis is like a nail in a tire. It will test the strength of its rubber, its amount of stored air, and its ability to endure difficult terrain, all while having a little air seep out at every bump. The nail is not immediately detrimental, but the rest of the tire will have to work really hard to make sure that it can remain functioning for as long as possible. For my family, the emotional impact of my dad’s condition infiltrated all aspects of our lives and tested the fabric of our family in every way possible. Over the past eight years, my family has experienced moments of pride but many of emotional turmoil, financial trouble, anger, and heartbreak. The term “family diagnosis” is meant to represent these complexities and how each family member embraces them. My mom put it brilliantly when she said that in cases like ours, not only is the patient receiving a diagnosis, but so is the rest of the family.
As I reflect on the past 8 years of my life, I aim to explain my family’s response to my dad’s condition while honoring the inherent nuance of each of their experiences. The messy tension between the explainable and inexplicable symbolizes the nature of chronic illness diagnosis and complicates the narrative of what a “life” post-diagnosis looks like.
The only way to truly represent my family’s experience is to travel back into the moments that were so defining for me. As l step in and out of the mind of my younger self, I will search for answers and attempt to understand my family's response to my dad's diagnosis.
"My dad was love in its fullest form.
He still is. "
I woke to the creak of my bedroom door, followed quickly by a growing sliver of warm, yellow light that pierces my room’s darkness. Before I could notice my dad’s familiar silhouette in the door frame, his arms wrapped around me and lifted me out of my sheets. His identifiable smell that lived in every sweater and t-shirt was equally comforting as it was indescribable. As he carried me downstairs, I was overwhelmed by a sense of security. Without moving a muscle, he transported me from my bed, down the stairs, and into the cozy corner of our sectional. He layered me in blankets and turned on one of my favorite cartoons, bringing me out of my groggy haze. Before I knew it, he returned with breakfast, and sat with me while I ate before kissing me on the forehead and heading to work. My dad’s and my mornings always began before the sun rose. That way, he could get to work before the rest of his team, offering him extra hours of productivity so he could leave promptly at 3pm to pick me up from school.
My elementary school offered an after-school program for kids whose parents could not pick them up in time for “carpool.” In a Christian preschool-12th grade school, the majority of my classmates had a non-working parent who could pick them up whenever they needed. My dad knew how much I disliked staying after with the few kids who also had working parents. Looking back, staying for aftercare seems minimal, and my aversion to it was probably melodramatic. However, my dad never minimized my feelings; he honored them and did everything in his power to give me the best. Every day that I saw his car pull into the roundabout, sandwiched between white escalades holding my friends’ moms, I felt like I was in the presence of superman. This is just one example of how his life and choices revolved around my needs.
After my parents’ divorce, my dad vowed to make the most of every day, hour, and second he could have with me. Divorce meant he would lose out on half the hours he had with me when he was still married to my mom. My mom’s career forced her to travel frequently, making the week-on, week-off, 50/50 split difficult to maintain with her demanding schedule. Knowing this, my dad turned down every job offer that required travel. More money, better benefits, and bigger titles mattered not when travel was on the table. His sacrifices did not feel like such when it meant he could have “bonus time,” a term he coined, with me.
These sacrifices did not interfere with him remaining a consistent provider. He took pride in building a home, filling it with my favorite foods, and perfecting my room. I will never forget the white canopy bed adorned with a baby pink sheet set that he picked out just for me. My dad has never been confused for a chef, but his staple meals, spaghetti and meatballs, pork chops and applesauce, and mayo-baked salmon, brought me comfort. His home was my safe haven, and he did everything he could to keep it that way.
My dad held each of my family members on his back, making sure no one fell. His siblings would playfully call him the “golden boy” of the family. In the best sense of the term, he was. If you asked his doting mother and sister, he could do no wrong. His buddies from college and high school, though less doting, couldn’t disagree. My dad was seen by all as the do-gooder. A dependable and respected man who would give you the shirt off his back if you asked for it. Every Christmas, my dad surprised our family with an “experience,” which took the form of some sort of vacation. He believed experiences were far more valuable than material possessions and wanted to give our family amazing memories to look back on. At a young age, my dad taught me the joy of giving.
My rock. My shelter. Where there was uncertainty, fear, or sadness in my little mind, there he was. His smell, his 3 ingredient spaghetti dinner, nightly arm scratches, and morning wake ups. Dependable. Self-sacrificing. Provider. My dad was love in its fullest form. He still is.
"Before my dad could take a breath, let alone get a word out, the doctor was out the door and on to his next patient."
My dad always had a limp. On February 26th, 1970, he came out of my grandmother with his left foot turned inward. A club foot. Before the age of 3, my dad’s little leg underwent three surgeries in an attempt to straighten his foot. Whether it was premature medical capabilities or just a bad doctor, my dad’s surgeries never got his foot to a place of full function. He refers to it as his “skinny leg” since the pins in his ankle prevented muscle from ever properly growing around his calf. Unlike his right foot, his left ankle lacks flexibility, making it impossible to properly hinge his joints and rejecting any attempts at rotation. As a young boy, he avoided wearing shorts at all costs, fearing laughter and ridicule from his teammates and peers for his “peg leg.” As a father, he comforted me in moments of insecurity by reminding me that my physical appearance was no reflection of who I truly was. His limp, unlike his lack of confidence, was something that stuck with him through adulthood. I always knew my dad had a limp, which is why I was blind to the initial physical impediments that made him wonder if something was wrong.
2014 was a year of questions. My dad’s first concern rose when he was in the shower washing his hair. As he reached up over his head to scrub in the shampoo, something did not feel right. His hands, which have always moved instantaneously by his brain’s command, were not responding as they usually do. It was as if there was a language barrier between his brain and the tips of his fingers. From there, his left ring finger began to shake like it never had before. These were little things, easy to neglect. However, the longer they persisted, the louder the thought in the back of his mind grew. He needed to address it.
He recalls lying awake at night, attempting to quiet his racing mind. What was it? Brain tumor? ALS? How much time did he have left? My dad was 44 years old, at the peak of his career, and fully engulfed in fatherhood and marriage. He was scared to death. Thankfully, he did not let these worries stand in the way of getting answers.
A common misconception about chronic illness is that these diagnoses happen fairly quickly. Though there are a few identifiable symptoms of early-onset Parkinson’s patients, movement disorders offer a wide variety of unique cases that make them extremely difficult to pinpoint. My dad’s tremor could have been interpreted as an early stage of Parkinson’s, but it could also have signaled a stroke, multiple sclerosis, an essential tremor, hyperthyroidism, brain cancer, and a myriad of other more niche diseases.
It took a year for my dad to get his answer. About eight months into his hunt, a general neurologist told him that he thought he knew what it was. However, due to the condition’s slow progression, he needed my dad to come back in 3 months before he could be certain. Sentenced to three more months of not knowing, my dad was thrown into the emotional Olympics. During this year of uncertainty, he found himself at a mental crossroads. How could he navigate being a present parent, husband, and employee while awaiting his fate? Every time he felt the shake of his left ring finger, he fell deeper into a pit of unease, trying to push away the negative thoughts and enjoy the life that was right in front of him. He had long conversations with himself in preparation for the impending news. He negotiated with himself about whether or not he wanted to know what he had. Knowing the answer meant he would have to face the prognosis and cope with his fate. Not knowing meant he could continue living in ignorance, hopeful for the best. By the end, he determined that not knowing was far more agonizing than whatever the truth would be. This mental gymnastics brought him to an ultimate point of acceptance. He wanted to know and, whatever it was, he would take it in stride and be a champion of strength for our family. After a grueling year of waiting, my dad finally got his answer.
“You have Parkinson’s. I recommend you get your affairs in order,” said the neurologist to my father, who could have won an award for worst bedside manner. Before my dad could take a breath, let alone get a word out, the doctor was out the door and on to his next patient. To be very clear, Parkinson’s is not a death sentence. You die with Parkinson’s, not of it. It is a progressive disease, making life more and more difficult as symptoms worsen with time. However, it is not fatal.
Parkinson’s disease is caused by the death of nervous cells in the basal ganglia, the part of the brain in charge of movement commands. These nerve cells, when fully functioning, produce dopamine, a chemical that drives the brain’s “neuromodulation.” I always associated dopamine with happiness but never understood the role it played in regulating the body’s movement. Dopamine regulates everything from a person’s mood to their ability to walk and talk. A life without dopamine or neuromodulation is impossible, as we all rely on it to function emotionally and physically.
About 500,000 people have been diagnosed with PD in the US. However, projections are much higher than that if the undiagnosed or misdiagnosed were counted. Although it is the second most common neurodegenerative disease after Alzheimer’s, research for a cure has been slow and unsuccessful. People don’t know how much genetics, environment, or other factors influence the disease’s contraction, but it is known that all three play a role. Basically, it is an incredibly frustrating disease that leaves you with very few definitive answers and a whole lot of daily pills.
The vast majority of patients receive their diagnosis after the age of 60. The early-onset community, only 10-20% of cases, receive their diagnosis before the age of 50. My dad strongly believes that early onset should be seen as more than just a proportion of Parkinson’s cases. “Early onset is so distinct from the experience of Parkinson’s patients that it should be qualified as a separate disease all together,” my dad will argue. He believes that the experience of the disease is so integral in its makeup that grouping both early onset and regular onset together would be disrespectful to the unique attributes of the former.
Early onset Parkinson’s is often diagnosed in a patient’s 40s and 50s. The expectations of these decades of life contrast with the 60s and 70s, which is the age range of most Parkinson’s diagnoses. When someone enters their golden years, they are slowing down for retirement, often have already seen the pinnacle of their career, and are usually battling other parts of their body’s slowing. Conversely, a patient in their 40s is likely active every day, supporting children, and climbing the ladder at work. They were not planning for a life shift, where their body and life fast forward to that of a 60 year old in a matter of a couple years. The dissonance between the body and mind puts patients in a place where they can’t connect with their peers anymore but have little in common with elders either. This isolating experience presents additional challenges that someone later in life would not face following a diagnosis.
Completely rattled by the neurologist’s abrasive news, my dad and stepmom sought a second opinion. They found themselves at the Parkinson’s Institute at Evergreen Hospital, which prided itself as a holistic Parkinson’s solution. Unlike the general neurologist my dad initially saw, this institute was dedicated to providing each patient with a team of support for their disease. This support system showed my dad that his diagnosis, contrary to what he had been told, was by no means “the end.” His team consisted of a neurologist, neurosurgeon, physical therapist, occupational therapist, and a social worker named Sarah Winter. Sarah’s role was to help my dad navigate all of the social impacts that come with diagnosis: family, health insurance, and employment, to name a few. It was in some of these preliminary conversations that Sarah provided my dad with blunt but eye opening insight. “You will lose your job because of this,” she shared.
My dad and his cast, circa 1971
"It was because of this, the sense of worth he tied so closely to his work and how protective he was of his career, that he was terrified to share his diagnosis with anyone."
When my dad received his diagnosis, he was at the height of his career. He loved going to work every day, he loved the team he had built and led, and he loved that his career provided so much to our family. His success at work fueled him and gave him a sense of purpose outside of his role as a father. As a self-proclaimed “straight C” student in high school, his guidance counselor once told him that he would never amount to anything. It was that chip on his shoulder that drove my dad’s desire to turn his academic and professional career around. And that he did.
At the pinnacle of his career, he was highly regarded by colleagues who had much fancier degrees than him. It was because of this, the sense of worth he tied so closely to his work and how protective he was of his career, that he was terrified to share his diagnosis with anyone. Not only was this information already the most intimate personal detail he had ever kept, it was also a direct threat to the pristine reputation he had created for himself at work. Until this point, he had proven himself unstoppable. An out-of-nowhere neurological disorder would not change that, or at least he would do everything in his power to prevent it.
Sarah Winter was incredibly direct with my dad about his employment. She recognized how important it was to him, how much value he drew from it, and wanted to help him keep it as long as he could. It is nothing that any employer would admit to, she shared, but there is a direct, implicit response in cases like these to let employees go after they are diagnosed. She advised him to keep his diagnosis from them for as long as he could, as it would only be a matter of time for them to find a reason to let him go once they caught wind of it.
My dad, an already highly private person, committed himself to only sharing the diagnosis with our core family: his parents, in-laws, sister, mother, and ex-wife (my mom). “I have Parkinson’s, and my employment is at risk more than I anticipated. Please keep this information a secret for right now,” my dad pleaded in his initial conversations. He explained that the pipeline from Facebook to LinkedIn was terrifying, and one false move or accidental post to get back to his coworkers easily. He told everyone that as soon as he was comfortable with more people knowing, he would let them know.
A month later, my dad reached back out to each individual to ensure they kept his secret. Everyone immediately confirmed they had kept it but called back just a few moments later, admitting that they had not. Immediately, my dad felt the walls around him begin to crumble. In the first opportunity for our family to prove loyalty to my dad’s needs, he felt betrayed.
As an independent person, my dad was terrified of the potential to need care in the future. He hated the idea of being anyone’s “burden” or reliant on others for help. This disease meant that, one day, his role as the provider would cease, and he would rely on us. In this position of insecurity and discomfort, he was desperate for an inner circle he felt he could trust. Hurt and frustrated, my dad asked each of our family members why they betrayed his trust and how they could have done such a thing without telling him. His heightened emotion and accusatory tone sent the conversations into a spinning wheel of reciprocal defensiveness, fueled by my dad’s desperation to protect his job and my family member’s anger toward his “unrealistic” expectations of them. On the phone, he recalls his mother telling him, “You can’t expect someone to keep this secret.”
I do not discount that secrets are difficult to keep. When my family was entrusted with this life altering information, they entered into a bind that probably left them ruminating, stressed, and isolated. A secret creates emotional tension and the only source of relief is through sharing. Each of my family members who my dad entrusted surely felt his secret burning a hole in their hearts and so desperately wanting to come out. For most people, emotional processing comes through talking. By calling his diagnosis a secret, it became pressurized and restricted. Not only were they receiving the news that their son, brother, or father of their child had a chronic illness, but they were also tasked with holding onto it tightly. I can empathize with the level of difficulty this presented.
This instance was the first moment the diagnosis implicated not only my dad but my entire family. My dad was living in fear of what could happen if his secret got out. My family members, on the other hand, were operating from a perspective of trying to understand while still coping with their own emotions surrounding the situation. Every human seeks self preservation, and my family was not exempt from that need. If they were able to feel my dad’s fear and see the implications of what they agreed to, they would have been more careful.
It is not until we are in each other’s shoes that we can fully grasp the needs and respect the requests of others. Until we are the ones on the metaphorical “chopping block,” we can only try to honor the needs of our loved ones who are. Sure, my family could have had it out for my dad, operated on malicious intentions, or really had a knack for gossiping. In this case, I choose not to believe that. Each one of them could have loved my dad, wanted the best for him, and felt overwhelmingly worried about his situation and still violated his trust. They were just approaching the situation from a perspective that was not his. Without being personally implicated, they could never have internalized the experience and risk my dad was living. Without an understanding of the situation’s gravity, violating his trust probably felt harmless.
This tension and misunderstanding are where the “family diagnosis” comes into play. Every family member, in situations like these, is asked to step outside of their own understanding and try to support the diagnosed individual in the manner their experience requires. Honoring the experience of the diagnosed and going against what may be the best personal route is one of the most difficult tasks diagnosis asks of us.
"We all mourned the loss of the relationship we had with my dad and the role we used to play in the family."
My stepmom was always someone I could count on. Every Christmas, the two of us would go to the Fairmont Hotel in downtown Seattle to take a tour of the festive “Teddy Bear Suite” and share hot cocoa in the lobby. We used to spend hours in her closet. I would pick out my favorite shoes and clothes, sorting them into a “Save for Sailor” pile that I could access once I could finally fit in them. My little feet would stomp around the hardwoods in her high heels. She showed me fashion and femininity and became a role model for the working woman. For our 11 years as a family, she was there for every big moment, created traditions with me, and never once disrespected my relationship with my mom.
My dad’s and her marriage was visibly perfect. They were set up by my aunt, who worked with my stepmom and knew they went to high school together. Straight out of a cheesy romcom, my dad confessed that he had a crush on my stepmom when they were only 15 years old. Just 3 months later, they were engaged. Normally, there would be hesitation towards their hastiness, but it made sense for them. “When you know, you know” my dad would say.
Further conversation with both of them revealed that my external assessment of their perfect marriage, at least for the first 8 years, was spot on. They were the first healthy marriage I ever witnessed, and their love for each other showed through in little moments every day.
The summer of 2019 was when I began to notice a shift. There were definitely early signs that their marriage was slipping that I chose to ignore. My attempts to drown out their heated arguments with my rotation of Taylor Swift, lifestyle Youtubers, and Gossip Girl reruns became commonplace. The house felt tense, which I attributed to my dad losing his job and my stepmom searching for one. Never did I entertain the thought that these situational struggles were only part of a deeper problem.
Once my stepmom began taking work meetings from bed, I began to wonder if something bigger may be wrong. She rarely came out of her room. My lack of background in depression led me to rationalize her behavior as sleepiness. As her days in bed became more frequent, I forgot how she used to be and normalized this version of her. My dad put on a brave face every time I came over, forcing positive energy and optimism. He definitely had me fooled for some time.
I started my senior year of high school in the fall of 2019. With college applications looming and an insane amount of extracurricular activities, I spent more time at my mom’s house. Her house was within walking distance of my high school and living there simplified my chaotic life. In my absence, I missed the worst of my dad and stepmom’s marriage. Sometime in September, my dad confronted my stepmom about her depression, expressed worry, and offered her an opportunity to step away from the marriage if his disease was hurting her. She made the decision to leave my dad for a few months and live with her family in Idaho.
Those few months of uncertainty made me sick, literally. The thought of my dad living alone, not knowing what would come of his marriage, tormented me. The mix of anger and worry I had for my stepmom was agonizing. I tried to compartmentalize the stress and focus on achieving good grades and submitting my college applications on time. All of it became too much.
One morning in mid-October I woke before the sun rose with nausea I had never felt before. I called my mom down and she sat with me as I proceeded to puke for the next three hours. There was nothing left, but my body couldn’t stop. By the time the sun rose, I was fine. It was as if nothing happened. I chalked it up to a freak incident of food poisoning until it came back a couple of weeks later. It was the same timing, length, and feeling. The doctor diagnosed me with cyclical vomiting syndrome, attributing the development to severe levels of stress.
I told my mom that it wasn’t school. School I could do. Through all of my life’s ups and downs, school was always something I could do and do well. It was in my control, outside of the grasp of household chaos. School was my beacon of hope for a peaceful future full of personal passions and stability. I had worked my whole life to get to the point of college applications. If that was my sole focus, it would have been stressful but nowhere near the point of cyclical vomiting.
It was the uncontrollable, unfixable agony that I was living in regarding my dad’s marriage that did this. The pain was stagnant and I had no power in finding resolve. My heart hurt for months, as I awaited answers from my stepmom on when she would come home. I worried about my dad, who was living and managing his disease alone. He began to exhibit strange behaviors, like draining my bank account without warning and going off the grid for hours at a time. I attempted to focus on my future but was tormented by the uncertainty of my present.
My stepmom came back in time for the holiday season. She always had a bias towards artificiality, ensuring every situation appeared even better than it was behind closed doors. This season was no different. She had our “family” pose for a Christmas card sometime in early December. As we stood there, hugging and holding our dog Charlie, the discomfort was palpable. As the people-pleasing only child I am, I put on a brave smile and grit through the holiday season, yearning for a sense of normalcy.
On December 26th, I knew it was over. A fight broke out that I got roped into somehow. Looking back, I can barely recall what it was about. All I remember is my dad putting me in my car and telling me that she crossed a line. In minutes, we were out of there and I was following his taillights down a dark, windy road. I spent that night at my grandmother’s home, shellshocked. From then on, my questions were answered. They were getting a divorce. At least there was a sense of finality that pulled us out of the months-long purgatory.
Role theory, founded in social work, is the way people subscribe to a familial contract. We are most comfortable in our role and tailor our everyday activities and behaviors to our role. Personally, I have lived my entire life in the predominant role of daughter. I have no siblings, and much of my life is centered around my relationship with my parents. As a daughter, I seek parental protection, advice, and rely on them in times of need. My parents, on the other hand, align with their role as my protector, provider, and support network. Whatever role we fall into in life, we embrace it and cater our behaviors around it. When someone’s role in the family changes, the expectations shift. This sparks frustration in the individuals who were comfortable in their role, leading many into a state of resistance.
My dad and stepmom were very comfortable in their roles: husband, wife, father, stepmother. They signed up for those, and they gave them a sense of purpose. My dad’s diagnosis threw a fork in the road, forcing him out of work and my stepmom into a caregiver position far earlier and more suddenly than they could have imagined. Facing these realities sent her, as it did all of my family members, into a state of mourning: mourning her old life and marriage. We all mourned the loss of the relationship we used to have with my dad and the role we used to play in the family.
I mourned my role, too. While my stepmom was gone, my dad began relying on me emotionally more than he ever had before. He would send me essay-long texts about whatever was on his mind that day, and he would keep me on the phone for hours as he processed the emotions of his wife leaving. As much as I cared for my dad, I felt anger at times. “I just want to be a normal kid!” I yelled at him once in a moment when my patience ran thin.
In a different conversation, my dad was pleading for me to go on a vacation with him. I did not want to go. It was the middle of my senior year of high school, and not aligned with any calendar break. Not only did I not want to miss my classes, I was trying to soak up every minute of my last year of high school with my friends. When I expressed this to him, he accused me of not wanting to spend time with him anymore. Why was he asking so much of me? In retrospect, he was battling with the loss of his wife and partner and likely was relying on me to fulfill more roles than just his daughter.
In all of these interactions, I was stuck in a game of comparison. None of my friends had this relationship with their dad, why should I? I missed the days when I didn’t worry about him. I wanted him to worry about me, not the other way around. I wanted a rock to lean on, I did not want to be the rock. My role as my dad’s daughter was permanently redefined when he got his diagnosis, sending me into many moments of frustration and resistance to what the diagnosis was doing to our relationship.
I learned about role theory in a conversation with Sarah Winter, our family’s social worker. In her experience as a social worker in the chronic illness space, she has observed time and time again resistance to role change following diagnosis. This theory draws me in as I attempt to explain my family members’ emotional responses throughout my dad’s disease progression. It would be easy to rely on this theory as the central reason for all of the abandonment and strife my dad has experienced in the last eight years. However, nothing is ever that simple. Theories rely on generalizations, which can be a dangerously slippery slope when dealing with human experience, a highly varied and nuanced subject. My stepmom’s marriage to my dad was likely impacted by her resistance to the role change following his diagnosis, but her response could have also been influenced by elements of her upbringing, intrinsic values, and changes to their relationship that I will never understand. My frustration with my dad’s emotional over reliance was in part my resistance to our changed relationship but also had to do with him overstepping boundaries. As much as I wish role theory could explain fully each of my family member’s emotional responses to my dad’s condition, I know it is only a piece to the puzzle.
"What started as a restful getaway amidst an unprecedented pandemic ended in death and displacement."
Belfair, Washington is a small town of about 4,000 people nestled just beyond the tip of Hood Canal: a hook shaped fjord (not a canal) and one of the four primary basins of the Puget Sound. Equipped with two grocery stores, several dispensaries, a hardware store, and a Starbucks, Belfair has all of the ingredients of a blue collar Washington town. Route 104 shoots through the center of town and wraps down and around the canal, offering miles upon miles of windy roads lining the water. A row of beach houses stands in between the route and the rocky shoreline. During high tide, the sea comes to meet the bulk heads of the homes, creating the illusion of hundreds of floating houses.
About 15 minutes down the route sits my family’s beach house. When my grandma was an infant, her parents bought the home as a weekend getaway from the hustle and bustle of downtown Seattle. She still remembers her first time painting beach rocks and wading in the warm water, which was heated by sunbathed rocks when the tide came in. When my dad and aunt were teenagers, they would bring their friends out to the beach house to party, water ski, and get away from their parents. In 2011, my grandma and grandpa moved back to the beach house to live there full time. My aunt purchased the home next door to serve as a vacation rental and provide extra space when relatives came to visit.
Once my dad’s and stepmom’s divorce was final in February 2020, my dad put their house on the market. Alone and technically homeless, he moved into my aunt's vacation rental next door to our family’s beach house. He looked forward to the company my grandma and grandpa could provide as he began adjusting to retirement, especially since my grandpa’s health was deteriorating.
When the pandemic hit in March 2020, I could not think of a better place to quarantine. School was closed, I was not allowed to see my friends, and my urban neighborhood in Seattle was under a permanent cloud of rain and depression. So, I took the opportunity to spend some time at the beach with my dad and grandparents.
My dad and I look back on the months of March and April 2020 as some of the best times we have had together. Our days were filled with sleeping in, exploring the expansive national park scene with our dog Charlie, and watching the sunset sparkle across the water and disappear behind the Cascade Mountains. My grandma would come over to eat my dad’s specialty meals: Taco Tuesday, spaghetti, and pork chops.
We were in a season of mourning. My dad lost his marriage and much of his identity with his job. I lost my senior year and the opportunity to properly close out my high school experience. Everyone lost normal life as they grappled with the realities of quarantine. Our time at the beach was the silver lining that surrounded our loss and uncertainty.
The month of May brought heartbreak. My dad and I were sitting on the deck when we heard a whistle. Initially ignoring it, the whistle came again. Growing suspicious, we began to follow the noise towards the ditch at the top of the driveway. We looked down and found my grandpa, lying at the base of it, covered in brambles and confused. Luckily, we got him out nearly unharmed. However, the fear and worry it sparked in us all never went away. It was the first time I ever thought to myself that his cancer and age were getting the best of him. He was in his 90s and stopped receiving treatment, it made sense that he was losing his body and himself in the process. After he fell, his confusion grew and he started saying absurd things that had no conversational relevance. It was painful watching him slip away, but it was more painful watching my grandma lose him.
The month of May also brought concern. I woke up early one morning to find my dad nowhere to be found. I don’t know what compelled me to check on him. Maybe it was my general worry about his disease or that I felt like he was keeping things from me, but my concern only grew when he wasn’t home at 4 am.
This concern reminded me of a cruise my dad and I had taken together just a year prior. Under similar circumstances, I woke up in the middle of the night to find him not in our room with me. After incessant calling and no response, I left the room in a panic dying to know where he went. I checked the casino first, maybe because of a recent memory I had being approached by security as I stood alone, underage in a Las Vegas casino after my dad had told me to "wait right there." Waiting for him to come get me, I noticed that he had a tendency to lose track of time while gambling. I did not have to look long before I saw him, hunched over one of the cruise ship's many slot machines. As we made eye contact, I burst into tears, unable to control my emotional mix of relief and anger. I was so mad he scared me but so relieved he was okay. I turned around and he ran after me, back to the room, apologizing for my worry.
Gambling held a presence in my childhood. My dad dabbled in it, occasionally pulling slots or sports betting with his buddies. Never once did his engagement with it concern me. He always told me that, though it was fun at times, he knew when to step away.
When my dad received his Parkinson’s diagnosis, we could have predicted that he would be vulnerable to pathological gambling. Dopamine, the neurotransmitter that Parkinson’s effectively kills, is responsible for managing our brain’s reward system. When we engage in pleasurable activities, like eating ice cream or watching a good movie, our brain releases dopamine. The most common drugs to treat Parkinson’s are Carbidopa and Levodopa, which were initially classified as miracle drugs, capable of curing the disease when they were founded. Though quickly discovered to not cure the condition, the drugs’ ability to increase dopamine production made it the most effective measure against the symptoms of Parkinson’s disease. These medications expose the patient to risk of developing impulse control disorders. By giving the brain a taste of dopamine it's been so deprived of, it becomes addicted to seeking sources of it. Gambling, sex, and eating are all common outlets for Parkinson’s patients to turn to when seeking dopamine highs. This overpowering thirst becomes pathological, allowing the patient to rationalize anything it takes to get the high again.
When I woke up before the sun rose to an empty beach house, I went straight for my phone. Hanging on every ring, I racked my brain for potential explanations he could have for being gone. Maybe he couldn’t sleep and wanted to get grocery shopping out of the way? Is he on a drive to clear his head? My calls never were answered, but I did get a text. He was out seeing a friend of his and that he would be back soon. Funny, why would his buddy want to have company in the middle of the night? It did not feel right. I tried to shrug it off and fall back asleep, but I lay there wide awake until I heard the door quietly creak open. Then, I finally slept.
Throughout the month of May, his disappearing act became more and more common. He began to text me before he left so that I would not freak out if I woke up, which was pointless because I was scared every time I woke up. My gut told me he was not visiting friends, but I tried to ignore it.
My grandpa passed away at the end of May. For how sad it was, it was equally beautiful to see him free of pain. By the end, he was not himself anymore. Our whole family watched his soul leave his body before he actually left us. I cried and cried, wondering why the universe had to take him away while the world was in shambles. In my state of continued mourning, I felt overwhelming gratitude for the pandemic, which bought me weeks of time with him I never would have had if I were in school.
My grandpa’s death did no favors for my dad’s and grandma’s relationship. Not only was my dad still processing his divorce, but he also he lost a parent. My grandma’s loneliness overcame her as she struggled with newfound financial anxiety. My dad ended up asking my grandma for a loan that would go towards remodeling our beach house’s shed into a studio apartment for my dad to live in. During our time living there, he realized how much he loved it and wanted to create space for him to continue to stay. My grandma came to me one day, sharing that my dad had taken her loan and lost all of it on a bet. At this point, I suspected he could be gambling but had no idea of the gravity of his problem.
In a heated conversation between the three of us, he admitted that he had been gambling most nights. His lying killed me, and made me question the foundation of our relationship. He told me he was using parental judgment to protect me. My grandma’s rage was fueled by her financial insecurity and distrust of my dad. As their issues continued to escalate, she kicked him out of the beach house.
At this point, I was back living at my mom’s house. It all became too turbulent for me. What started as a restful getaway amidst an unprecedented pandemic ended in death and displacement. My dad’s and my relationship was on the rocks, but I was not happy with my grandma for kicking him out and leaving him with nothing. My dad started to plan trips for us to go to the coast or stay in a hotel together in downtown Seattle. I could tell he was trying to mask his reality of being homeless, disguising it as nomadic spontaneity. The fear and vulnerability in his eyes were too obvious for his attempts to fool me.
Our dog, Charlie, was my dad’s companion throughout the rocky summer of 2020. I later found out that they spent nights in the car together. My dad’s gambling did not stop, in fact, it increased. Later conversations with him would illuminate that it was the feeling of shame, rejection, and hopelessness that fueled the continued gambling. However, money was running out.
At this point, I did not know who to believe. I was desperately trying to stay supportive of my dad. Seeing him desperate killed me, and I wished I could help. My grandma, aunt, and mom were in my other ear, explaining that my dad had an addiction and that he needed help. I never understood what they meant by "help." To me, I felt that taking him in would help him. I wanted to show him love even in the worst moments of his disease. However, another part of me was mad at him for what had happened. He wanted me to see the rest of my family as to blame for his station in life, and, though I saw their shortcomings in communication and response, I was still mad at him for gambling. For months, I walked the line between anger and love.
My dad always requested that we don’t talk about him without him there. If we had a concern or problem, we were to come to him first. He feared that discussion between relatives would stir misinformation and further false narratives about him. My relatives hated this request. They would tell him that it is an unfair expectation of them to not confide in each other. At times, his request angered me, too. Whenever he upset me, scared me, or asked to borrow money from me, I found myself sitting in my mom’s living room, choking back tears and holding in what happened like a Coke bottle with mentos. Trying to keep myself from exploding, my mom would beg me to tell her. Eventually, I would give in and make her swear to not tell anyone. Any chance of my dad finding out that I had shared an issue I had with him sparked fear of a potential blowup or fight.
It was my family’s betrayal of his request that angered him the most. When he lost my grandma’s money, she went to me to share what had happened. As expected, the information sent me into a fearful panic that only got worse when I talked to my dad about it. As more and more of my relatives found out about his gambling, my dad became an outcast. He had no home, my grandma and aunt shut him out, and he was left fighting to maintain his relationship with me.
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People are people, and they will talk. There was no hope for my grandma, aunt, or mom to hold their tongues when my dad’s gambling worsened. This drove my dad crazy and sent him to a place of manic hysteria. He was so hurt that his relatives betrayed his request for confidentiality that he lashed out at them. Though I will never invalidate my dad’s emotions, I believe his frustration was misplaced. My relatives, love them or not, showed their inability to keep confidentiality the minute they heard of my dad’s diagnosis. When his impulse control issues manifested in a gambling addiction, there was no way they could have kept it quiet. Though I agree their handling of it was immature and emotionally heightened, it did not bother me nearly as much as their villainizing my dad.
As soon as he lost the money, he was abandoned. My family could not separate him from the addiction, or the addiction from Parkinson’s. It was Parkinson's that brought my dad’s impulse control issues, well, more specifically his medication. It was not him. Up until his diagnosis, my dad was the golden boy of the family. He financed every family vacation, took care of my grandmother, and was a reliable backbone. I wish my family’s anger was placed on the disease, the medication, and the symptoms, rather than my dad. This was not him, and I knew that. For whatever reason, my family could not separate the two or accept that this is what Parkinson’s does to people. Rather than seeing his gambling as a reflection of him, I wish it could have been seen as a reflection of Parkinson’s.
It is through shifting the blame and channeling emotion towards the disease rather than the person that preserves relationships in the darkest times. From my dad’s initial diagnosis, the doctors told us that impulse control would become an issue. We knew this to be true. When it became true, my family had no grace to give my dad. He became a villain, and I believed it at times, too. If we all realized that this was a part of the disease and that putting him out, displacing him, and rejecting him would do far more harm than good, I would hope that we would’ve taken a different approach.
"My anger stemmed from my wounds that still were open."
Although I could continue recounting the past two years, its highs and lows, and continued familial strife, I am choosing to jump ahead. This is not because I don’t see value in the learnings of the past two years. I could easily go into more examples of similar patterns of behaviors I have already illustrated, outlining the scenario and how each of my family members handled it. My dad and I have hours of circular conversations on this topic, asking ourselves why our family got flipped on its head and how we ended up here. We have examined each interaction and grown angry over many of our family members’ lack of resilience.
What has hurt me the most about my family’s response to my dad’s condition and the challenging symptoms that come with it is the lack of support. I have communicated this need, begging family members to step up and offer help.
After the summer of 2020, I moved across the country to begin college. I was 2,350 miles away from home, attempting to support my dad virtually while getting my feet under me as a freshman. I was spread thin, and my emotional exhaustion and lack of patience hurt our relationship. Sometimes, I went stretches of days without calling him. He brought me pain and worry, and there were many moments where I wanted to forget about that part of my life and focus on the trivial excitement of college. In my sophomore year, my dad attempted to surprise me for my birthday and, after catching wind of it, I told him not to come. I did not realize I could feel so much exhaustion and pain for someone while also feeling so much love and care for them. There were moments when my selfishness overcame me, and I became the worst version of myself. I recall asking my grandmother for support, explaining that the more people who help him, the less of a burden it would be on all of us.
I empathize with my grandmother. She is 78 and certainly did not expect to have to care for her son in her old age. Usually, it is the opposite: parents receive care from their children as they grow frail. She lost the love of her life, was sent into a deep depression because of it, and did not have the emotional strength to take on my dad’s illness, another major point of sadness in her life. Along with her husband, she lost a version of her son: the provider, rock, and backbone of the family. My dad could no longer be that for her and she likely resented him for it. Her anger at his disease, which was displaced as anger towards my dad, drove her away from him and forced her into a state of villainizing his actions and rationalizing their lost relationship. My dad was not perfect with her, and I have told him that I profoundly disagree with his aggressive response to her rejection. I have told him that his actions agitated a fragile dynamic, making it worse and forcing her the other way.
After he was forced to leave the beach house, they did not speak for much of two years. Towards the end of 2022, they were slow to regain connection. With far more level heads, my dad and grandma were brought back together in May of 2023 at our family’s beach house. The time apart made me cautiously optimistic about the reunion. I joined them for about a week, as I waited in limbo between the end of my junior year of college and the start of my summer internship. This week by the ocean was the first time since our spring in quarantine that I felt a genuine connection between the three of us. Refreshed and hopeful for continued rebuilding, my dad brought up the idea of him moving closer to my grandma. His lease was almost up, and he was ready to give their relationship another try. The three of us toured an apartment complex ten minutes down the road from the beach house, which we loved and encouraged my dad to apply for.
As my dad signed the lease, I remember feeling an overwhelming sense of relief. I was about to move to Washington, DC for the summer. The thought of my dad having someone nearby, willing to spend time with him, and help him with weekly tasks brought tears to my eyes. For so long, I lived in constant worry that he had no one. I hated the thought of him handling his disease alone, which was the reality for a long time. I was overjoyed that my grandma was showing signs that she was ready and willing to help and that I could take the summer off of my constant state of worry.
A few days later, my dad and I were packing the car full of his belongings. I was scheduled to leave for DC in two days, so I wanted to make sure he was moved in and settled before I left. About an hour into the two hour drive from Seattle to the beach, we got a text from my grandma, telling my dad that she did not want him to move out there and that she could not handle it.
Silence fell over the car and my chest started to cave in. I don’t think I took a breath or blinked for a minute as I internalized what she had just done. Again, my dad was displaced. Again, I was carrying him, alone. This time, I was literally carrying his entire livelihood in my car. I had never felt the level of disappointment and desperation I felt in that moment. After my minute of silent shock, rage overcame my entire body. In one moment, my years of cooperation, silence, and empathy were ripped from me. All of my suppressed anger had reached a boil that I could not contain anymore. As I screamed and cried in the driver's seat, my dad sat in silence, allowing me to let out all that he knew I had kept in for so long. I was booked to leave for DC in two days, and we had no answer as to where my dad would live. He had signed a lease and committed himself to a new life near my grandma who had fooled us all into thinking she was ready to embrace it.
We turned the car around and back to Seattle to reassess the situation. My dad and I took turns in emotional fits. Since I was losing my mind, he was doing all he could to calm me down and assure me we would figure it out. These roles flip flopped throughout the rest of the day. Once we got back to my mom’s house, my dad asked for a few hours to sort through his options. We sat there, in silence, racking our brains for any ideas on how to move forward.
Eventually, we came to the conclusion that the best and only option was to go forward with the move. He signed a lease and had nowhere else to go. All of his belongings were in my car. He had to go somewhere. So, we left the next morning to do the same move we left for the day prior. This time, however, felt different. Rather than driving towards an exciting new chapter, we were driving towards a continuation of the past two years. We felt like we were moving backward.
Leaving my dad in that apartment alone was one of the hardest things I have had to do. I spent 12 hours with him that day, getting him everything he could possibly need for his new place. He had no car and there were no forms of public transportation he could use to satisfy his needs if I did not help him that day. My grandma, who was 10 minutes down the road, offered no help in this marathon move. As I drove back to the city, preparing myself to move across the country the next day, I wept thinking about my dad being so close to my grandma but more lonely than ever.
As much as I wanted to hate my grandmother in that moment, I could not fully succumb to hating her. She had reasons for doing what she did. My dad's returning scared her and triggered her PTSD from the last time he lived near her. She feared that this time would bring the same destruction and pain that last time did. She had healed since then and wanted to do everything possible to not reopen her wounds. My anger stemmed from my wounds that still were open. While everyone took their time to heal and remove themselves from my dad over the past two years, I was with him (virtually) every day. I felt his pain, and loneliness, and watched his condition progress. During school breaks, I would spend weeks with him in his studio apartment, which felt like boarding an intense emotional rollercoaster. My wounds were still open, and I cried out for relief so that I could begin stitching them. When she retracted her help again, I felt like a fool who falsely believed something about our situation would change.
"Though I wish I could change things, I have come to accept that I can’t."
As July rolled in, it was apparent that my dad’s situation needed to change. He had been alone for nearly a month with no contact from my grandma. His mental health was at an all time low, and I was terrified of him being alone for even a day longer. My mom saw my fear and hated my grandmother for the position he was in.
My mom and dad’s relationship had been rocky since his initial diagnosis. His trust in her was shaken when she shared his diagnosis against his will, and from there they consistently found themselves in heated arguments about how my dad should handle his condition and relationship with me. Despite the rockiness, my mom decided to pull my dad out of this horrible station he was stuck in. She knew that she could have an immediate impact if she brought him back to Seattle, away from my grandmother, and helped him start a new life. The rejection he felt from his mother was amplified by his proximity to her and the rural environment he was living in left him with no mobility.
She went out there with a moving truck and got him out. She described it as something of a rescue mission, saving my dad from this place of emotional torment and loneliness he was in. I was an emotional wreck throughout this entire process. As I received updates from DC, I felt a mix of immense relief to see my mom helping him and fear for the potential that their relationship would explode into fighting again. I called my mom, telling her that what she was doing was beyond kind but that she did not have to do it. Without hesitation, she said that she had never been more certain about doing anything. She said that she wanted to relieve me of my constant worry for my parents so that I could have the peace of mind necessary to focus on starting my career and living for me. I bawled as she said these things.
It took months for my dad to believe that he was supported and safe. I recall my mom and I sitting with him in his new apartment, just a three minute walk from my mom’s house, repeating to him that we were here and he was not alone anymore. He described the past two years as walking on a tightrope with no net beneath him, terrified of falling.
Since his initial move, the amount of growth and healing that has been done between my mom, dad, and me has been incredible. My mom and dad work out together several times a week, she takes him to the grocery store, and he has started reengaging with the local Parkinson’s community. He sees more of his friends and is starting to regain his sense of self. This disease continues to test us all, but my mom and dad have shown resilience. Nothing is perfect and new hurdles arise every day. What has changed is that there is now an unwavering commitment to making it work and pushing through the rough patches. Where there used to be abandonment and fleeing, there is now resilience and acceptance.
When I spoke to our social worker Sarah Winter about this project, she identified that her primary advice to any family who receives a diagnosis like this or is met with unexpected change is to practice acceptance. For years, my family resisted the realities of my dad's diagnosis. We were angry at it and took that anger out on my dad. We hated that the roles we were so comfortable in were being stripped from us. My dad mourned his life as an able bodied professional and father. My grandma rejected my dad’s changing needs. My stepmom fell into a depression when her marriage as she knew it was lost. All of this resistance manifested in broken relationships.
Extreme situations like this reveal the most about people. I understand each of my relatives in ways that I never could have if not for my dad’s diagnosis. As I have come to understand them through their responses to my dad, I have realized that my anger towards them was misplaced. I won’t invalidate my emotions, but I will urge myself to move forward with a sense of acceptance. Acceptance surrounding who my relatives truly are, what they need out of life, and what they can and cannot provide me. This experience has made all of those things clear. I am grateful for it because I now can say I truly know these people and can pursue relationships with each of them accordingly.
My acceptance has allowed me to rebuild with my stepmom. We will be continuing our tradition and returning to the Fairmont Hotel for Christmas festivities this year. My mom’s acceptance has allowed her to rebuild with my dad and become his primary source of support and caretaking, a step she never could have imagined taking when they divorced in 2005. As soon as I began accepting that my dad’s and my relationship would be different from that of my friend’s, I was able to let go of the sense of mourning and anger I had towards it and embrace what we did have.
I wish my family could have reached this level of acceptance earlier on in my dad’s diagnosis and I wish that some of my relatives find acceptance in their hearts one day. Whether or not that ends up happening, I have personally gained so much by accepting my family’s diagnosis. I have accepted the diagnosis that a lot of my family members were not built with the resilience and level of acceptance necessary to embrace my dad’s condition. That does not make them terrible people or unworthy of my love, it makes them human beings who did not ask for what fate had in store for us. Though I wish I could change things, I have come to accept that I can’t.
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"I acknowledge that our broken society has made it more difficult for families to cope with and support loved ones through diagnosis."
I do not know if this piece will ever feel completed. In the midst of writing this, I traveled home for Thanksgiving. My week at home reminded me that, unlike this piece of writing, my life is ongoing. Every day provides material for a new chapter and every therapy session provides insights that I had not yet considered. The words I write are real people and my relationships with each of them are ever evolving. Before I pause, for now, I wish to acknowledge some of my major takeaways from engaging with this piece.
Acceptance is used in the Oxford definition of acknowledgment. This is because the two terms go hand in hand. Acknowledgment requires the acceptance of a truth or reality. My experience with my family has required me to accept what is and, consequently, acknowledge the realities that were initially hard to swallow.
As a writer, I acknowledge that this piece, which began fairly broad, has narrowed to a degree of specificity that is likely shocking and hard to relate to. No one will experience exactly what my family experienced. There are millions of unique dynamics, choices, and interactions that make our reality impossible to replicate. However, when anything even remotely similar befalls another family, I can guarantee their response will share the same degree of specificity ours had.
This is largely because of the societal superstructure that fails to prepare families, and the rest of society, that is, to support chronic illness and disability. Similar to how I feel my family’s anger towards my dad was misplaced, I believe my anger towards the rest of my family was also misplaced. Before his symptoms progressed, my dad was predisposed to becoming the black sheep of our family. From diagnosis, he became a spectacle for unsolicited opinions, judgment, and shame. As his gambling worsened, my family did not have the tools to see past his divisive symptoms. Through accepting these realities I must acknowledge that there were larger forces at play that made my family unequipped and implicitly averse to the complications of disability.
My dad once described his experience with diagnosis as walking on a tightrope with no net beneath him. Our country’s relationship with disability mimics this metaphor. Every morning, my dad, and the millions of others who also battle chronic illness and disability, wake up with the goal of getting through another day of challenging symptoms. These challenges snowball when met with a generalized lack of support from the community around them. My relatives had no understanding of what supporting my dad looked like because they had never seen it themselves. The task of overcoming our biases against disability and the ugly complications that come with it proved too daunting for much of my family. I acknowledge that our broken society has made it more difficult for families to cope with and support loved ones through diagnosis.
Unfortunately, I anticipate that many families struggle in ways similar to mine when met with a diagnosis. Though their situations are likely very different in makeup, acknowledgment of the craziness will bring stories like mine out of the shadows. Every family, whether battling with chronic illness or not, can be diagnosed with something. By keeping these stories behind closed doors, we are only doing a disservice to the families of tomorrow, who may have a better chance at avoiding history’s mistakes and embracing a life of acceptance.
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