Author Archives: Simi K. Rao

1 2 3

Addiction Diaries: Lucky Boy

Addiction is an irresistible craving for a drug, leading to out of control use, and continued use despite consequences. 

As a physician practicing in acute care I’ve seen many terrible things. But what has surprised, shocked and saddened me the most is when I’ve dealt with cases of addiction. The consequences can be severe, even fatal. It’s important to talk about it and acknowledge that it exists. Because addiction is a long term problem and social/family support is perhaps the most important factor for recovery. The aim of this series is to inform and raise awareness, not to sensationalize. Whatever I write is based on facts and facts alone.

The following is based on true events:

RM is only 21. “Don’t be surprised doc. He’s tiny!” His nurse informed me before I stepped into the room. So he was. Tiny (barely over 5 ft, under a hundred lbs) and young. His innocent face belied the colorful life he’d led so far. RM had been admitted because he had popped a couple of fentanyl tablets he’d bought on the street  (the same drug that was found in Prince’s and Tom Petty’s system). When I inquired why, he said he’d been taking the drug for the past 6 months or so; 2 to 3 a day “to get high that’s all” he informed me as if talking about the weather. “No, I don’t want to kill myself but I get depressed sometimes;” was his response when I asked if he’d had any intention to cause harm to himself. I tried to maintain a straight professional face but I was flabbergasted. I was shocked he was still alive. The lethal dose of fentanyl is very small– a quarter of a milligram, and this young man had consumed several times that. He was one hell of a lucky boy. 

Fentanyl is the most powerful opioid/narcotic drug—100 times more potent than morphine (the usual drug used to treat pain) and 50 times more potent than heroin (the common street drug). All opioids bind to the opioid receptors in the brain and block pain signals (hence are used to treat pain), at the same time they produce sedation and euphoria by increasing the levels of the neurotransmitter dopamine producing the ‘High’ or ‘Feel good’ sensation we commonly hear about and what people get addicted to. Opioids also depress the breathing center in the brain thereby causing respiratory arrest which is the usual cause of death. Fentanyl is a highly controlled opioid and is usually prescribed to treat severe chronic pain in the form of slow release patches and as lozenges, lollipops and tablets for breakthrough cancer pain. In the hospital it is administered intravenously under closely monitored state. It is vital to know that Fentanyl should not be used to treat acute/short term pain and in someone who is opioid naive (has never been prescribed/taken opioids). 

The details about my patient poured in gradually. I learned the young man was on parole. He’d gotten into trouble for an alcohol related problem– and had been ordered by the court to attend rehabilitation classes. So, as he could no longer drink, he switched to another source (not an uncommon occurrence under such circumstances). And no, this young man was not a derelict or an orphan. He had a very caring mother who told me how terrified she was as she didn’t know when she was going to lose him. She was at the end of her wits. In fact, it was she who’d saved his life. She was his chaperone who was driving him home from the class when he passed out in the back seat then went ‘blue’ and started convulsing. She drove him to the ER which luckily happened to be just around the block. He was immediately administered a fast acting antidote called Naloxone, and revived. His life was saved, following which he was admitted for observation. What had happened is that Fentanyl, had suppressed the breathing center in RM’s brain, causing him to stop breathing. He’d have been dead if the effects hadn’t been reversed in a timely fashion. 

His mother was a brave soul. I guess she’d been through similar circumstances before hence had acted quickly. Many victims aren’t so lucky. Though her son had overcome death for the time being, there was no guarantee this wouldn’t happen in the future. She begged me to send him to rehab. She was tired and exhausted. At the end of her wits. I didn’t want to be in her shoes. I too have a teen daughter. I can’t imagine how I’d have reacted in a similar situation.  Even though RM appeared motivated to quit (or so he told me) the likelihood for relapse was very high, despite rehab, family support and so on. I know since I’ve seen it because these drugs bring about long lasting changes in the brain.Therefore, it’s important to avoid triggers and not give up hope even if relapse occurs. 

Young people are curious. They want to conquer the world. They want to experiment. It’s in their nature to be impulsive. They are also defiant and would rather go against than heed good advice. The teenage years are the most crucial as seeds of addiction are most readily sown during this time. Not that adults are spared. It takes only a few days to get addicted to a certain drug– so next time your dentist prescribes something for a toothache think twice and if you do indeed have to take the drug do so for the shortest time.  

But as we are all aware addictive substances are available on the streets under various names and formulations causing various effects, but did you know they are also available OTC (over the counter) in your local medical store or pharmacy? Things like cough and allergy medicine, decongestants, motion sickness pills. Sometimes when one drug doesn’t produce the desired effect, people take a cocktail which can include pain pills, sleeping pills, antidepressants, muscle relaxants, cough medicine. 

My advice to everyone out there (young and old) is to say NO– to drugs, alcohol, tobacco etc. You never know when that one glass of wine becomes two, or three or more, or that one pill becomes a dozen. If they say it’s cool to do so, tell them it’s not cool to lose your life.  

Dear parents- Talk to your kids, learn about their likes and dislikes, encourage them to share their fears and anxieties. Inquire about their friends and peers. Keep the channels of conversation open all the time. Assure them of your support. 

And if you choose to smoke, drink or indulge in risky behavior avoid doing it before them– as young people tend to mimic their parents. 

PS: Please feel free to share your thoughts and experiences as well. Thanks for reading!

simi blog imageDr. Simi K. Rao, creator and founder of The MedBag is a board certified internist and hospitalist currently practising in the Denver area. She has special interest in preventive medicine. She is also a published author. You can learn more about her work at https://simikrao.com//

 

 

Surviving Cancer/Sustaining Self 6: Privilege, Care and Support

In previous posts in this series, I described several coping strategies that sustained me throughout my prolonged treatment for acute myeloid leukemia. Here, I describe how my healing and recovery occurred in a larger context that was unusually privileged and highly favorable for my successful outcome.

First, my employer provided excellent health insurance that covered virtually all my major expenses. My longevity in my position earned me a year of paid sick leave, covering the period from the onset of my disease to my retirement date.

After retiring, I maintained a version of this same good health insurance and began receiving a significant pension. Thus, I had the good fortune to not have to worry about financial constraints on the decisions I made and the care I received. (My privilege should be everyone’s right in an “advanced,” industrial nation, but that’s a whole other talk show.)

There was an interpersonal aspect that worked in my favor as well. As a highly educated, professional white male, I was taken seriously and treated respectfully by everyone I encountered. When I responded in kind, all my interactions with medical personnel were congenial and productive. This helped give me the confidence to be my own advocate.

My self-advocacy reminded me of a friend (who is a registered nurse) who believes every hospital patient needs an advocate to represent their needs while navigating the complexities of hospital care. If they are unable to play this role themselves, a caregiver advocate should be assigned to them.

Another positive factor was the quality of care that I received throughout my treatment within two major hospitals. There were, of course, too many forms to complete, some silly bureaucratic impediments, and some truly awful hospital food. But when it came to the important things, the care I received was superb. My doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. Suffice it to say, my stereotypical views of the medical profession have been forever transformed into a profound appreciation.

Alongside that care, it would be impossible to overstate the benefits of the social support I received from my spouse, relatives, friends, neighbors, and colleagues. Through their hospital visits, phone calls, emails, get-well cards, gifts, and the key lime pie my wife and her sister smuggled into my room, I was continually reminded of how many people were pulling for me, praying for me, thinking of me, and sending me positive vibes.

I am deeply grateful for my privileged status, excellent care, and social support. And I’m acutely aware that others without my privileges may not receive the same level of care. For me, these privileges made it much easier to implement the various coping strategies outlined in previous posts. But the inequalities of privilege are also a reminder that however much we may try to control our destiny, outcomes are always intertwined with larger forces beyond our control.

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing. His website is at www.stevebuechlerauthor.com/

 

 

 

Surviving Cancer/Sustaining Self 5: A Secular Mindset

I composed the post below before reading Diamante Lavendar’s powerful paean to spirituality on this site. The benefits of spirituality that she describes are undeniable, but I believe they are also available through other means and without reliance on a supreme being. Here’s my take on one such alternative pathway.

In previous posts, I described some strategies that sustained me during my prolonged treatment for acute myeloid leukemia. Here, I add one more item to that list. While many people rely on religious faith in a medical crisis and while I respect such beliefs, I followed a different road.

It didn’t start that way. My parents were nominal Catholics and I was raised in that tradition. I was baptized, took first Communion, was confirmed, and attended Sunday Mass with my family into my early teens. With the onset of puberty and a teenager’s classic sense of immortality, however, Catholicism lost its relevance for me. I fell away from a religion I had never fully embraced.

After drifting through my teenage years, I enrolled in college and became enamored with philosophy and sociology. I found their emphasis on scientific observation, logical reasoning, and rational explanation to be much more compelling. I became a “child” of the Enlightenment, a practicing sociologist, and a secular humanist.

One benefit of this world-view is described in Philip Zuckerman’s Living the Secular Life: New Answers to Old Questions. He notes that secular-minded people may actually weather challenges such as a life-threatening illness more readily than someone who is religious. For the latter, such an event may precipitate a crisis of faith and a quest to restore that faith while also dealing with their illness. For the secular-minded, there is no crisis because there was no ultimate faith to be shaken in the first place.

This could allow secular-minded folks to more readily adopt a pragmatic, problem-solving attitude toward life’s misfortunes. This attitude was certainly reflected in the pro-active stance that I brought to my treatment. Whenever possible, I sought to act and solve problems in ways that would foster my recovery. When that wasn’t possible, I learned new levels of patience and non-judgmental acceptance from my practice of mindfulness. And finally, I also accepted that there was an irreducible element of luck or random variation that would determine the outcome of my treatment.

My beliefs allowed me to arrive at a good place during a bad time. The secular world view I had nurtured my entire adult life was like a comforting companion on the roller coaster ride that was my diagnosis, treatment, and eventual recovery.  Standard disclaimer: I have no idea if my secular practicality had any direct bearing on my successful outcome, but it certainly sustained my sense of self over the long haul.

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing. His website is at www.stevebuechlerauthor.com/

The Effects of Spirituality on Health

For years I have been seeking Spirit to help me through life hardship.  I have also been seeking a relationship with Spirit to help me achieve the things I believe that my destiny holds for me.  There was a time when I was an atheist.  But that has drastically changed.   I have experienced both sides of the story.  And I can truthfully tell you that I am much happier now that I have a relationship with God.

It was strange how I came to know my Father in heaven.  It was something I had experienced in brief “bursts” as a child.  I called it the “Christmas feeling”.  A deep sense of peace and wellbeing would come over me during tough moments in my childhood.  I didn’t know how to explain it but it was truly beautiful.  The moment that really changed the course of my life was when I buried my first child.  Losing her catapulted me into a relationship with God because I was so deeply devastated.  Since then I’ve been on a spiritual journey of learning and growing.  It has truly changed me over the years.

One way that it has changed me has been that my relationship with Spirit has made me more positive and hopeful.  There have been so many studies regarding the effects of positive thinking on health and overall wellbeing.  All of them support the fact that positive people are happier and healthier.

First of all, positive thinking is key to effective stress management.  Effective stress management directly impacts your health in a positive way.  It increases your lifespan, lowers depression and distress,  increases your resistance to diseases and decreases the risk of cardiovascular disease.  (mayoclinic.org, “Stress Management”)

Spiritual beliefs take it one step farther.  Having a deep sense of God, or Spirit, helps to give you purpose and meaning in life.  You don’t feel like you’re some random “accident”.  You feel that you are alive because of a loving force who needs you and wants you.  You come to know that you have a destiny to fulfill, a reason for being alive.   It also prevents isolation and depression.  When you are part of a group of like minded people, you have the support of a community.  You are not an island onto yourself.  You realize that there are others who believe the same things that you do.   (everydayhealth.com, “6 Ways Spirituality Can Make You Healthier”)

Spirituality also decreases stress because you feel that you have a destiny, and a powerful support system through a heavenly perspective.  It isn’t just “you against the world”.  It is you, your angels, guides, your Father who loves you and relatives on the other side interceding for you, visiting you and helping you.  You have a huge extended family!  In fact, depending on your spiritual perspective, you may even believe that we are all a part of a huge, loving family comprised of those on earth as well as those in heaven!  With a support system like that, it helps you maintain the perspective that no matter what happens, you will get through it.  It might be really tough at times, but you’re definitely not alone!

Spirituality also makes people more resilient, more faithful in relationships, have happier children and creates a deeper sense of satisfaction with your family life.  (psychologytoday.com, “The Surprising Health Benefits Of Spirituality”).  When we concentrate on love, lending a helping hand, and raising our children with a sense of caring and compassion, we promote wellbeing not only in our families but in the world around us.  We leave a positive mark on those who we interact with.

There are so many reasons that make spirituality a helpful component of health and wellbeing.  If only for the effect it has on us to be more loving, kind and empathetic, it is a fountain of good for ourselves and the world around us.  What a wonderful way to stay positive, motivated and driven to make a change in ourselves, those we love and our surroundings!

If you’d like to read more about my work, you can visit me at www.diamantelavendar.com.  I’m also an artist and my art can be found at www.diamante-lavendar.pixels.com

Surviving Cancer/Sustaining Self 4: Humor

My previous posts have described how mindfulness, physical activity, and a pro-active stance sustained me during my treatment for acute myeloid leukemia.  Alongside these strategies – and not to be underestimated – was maintaining my sense of humor.

To be sure, cancer is no laughing matter. Nothing about it is easy, and it’s certainly not funny. That is precisely why I found it essential to retain my sense of humor upon my diagnosis and throughout my treatment.

Doing so became an antidote to the somber reality of what I was facing. It was a quiet form of resistance that kept the cancer at arm’s length. In my mind, humor was a way of saying you may make me sick and may eventually kill me, but I’m still going to enjoy a good (or bad) joke along the way.

In my interactions with doctors, nurses and staff, I routinely used humor to break the ice and lighten the mood.  It was not a denial of my situation as much as a way of transcending it, and they seemed to appreciate the respite it provided from the gravity of my condition and the details of my treatment.

In my periodic, written reports to family and friends, I concluded each message with a joke. They weren’t necessarily great jokes. They weren’t necessarily new jokes. Some might even say that I favored quantity over quality. But the process of finding and composing them was a welcome diversion that elevated my spirits even on dark days.

For my readers, I suspect they lightened the impact of my often-dire news and let people know I was not losing hope.  And it let them know they could connect with me as the person I’ve always been and not just as a cancer patient.

The standard disclaimer in this series of posts still applies. I have no idea if my reliance on humor had any direct bearing on my successful outcome, but it certainly sustained my spirit over the long haul.

And so, in closing, I would just like to say:

An agnostic, dyslexic, insomniac walks into a bar.

The bartender serves him a drink and says, “Hey pal, you look really tired.”

The guy says, “Tell me about it. I lay awake every night wondering if there really is a Dog.”

Surviving Cancer/Sustaining Self 1: Mindfulness

Surviving Cancer/Sustaining Self 2: Physical Activity

Surviving Cancer/Sustaining Self 3: Being Proactive

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

 

 

 

 

 

 

Surviving Cancer/Sustaining Self 3: Being Proactive

My treatment for acute myeloid leukemia required four separate hospital stays.  They began with a 37-day stint for initial treatment and concluded with a 25-day stay for my actual transplant, with two, one-week stints in between to keep my disease under control until my transplant.

From my first days in the hospital, it was evident that there was very little I could control in my new circumstances. Rather than indulging in despair or frustration, I resolved to focus on my immediate environment and be as pro-active as possible in that small world.

Toward that end, I took charge of my room by making my bed every morning and fastidiously keeping everything neat and tidy throughout the day. I began the exercise routines and mindfulness practices described in previous posts.  I wrote regular reports to keep people informed about my status. It wasn’t much, but it still provided some sense of agency and control within my new “home.”

I also brought a pro-active attitude to my medical care. I looked forward to my daily consultations with the doctors whenever they happened to drop in.  I always had questions ready about my treatment, medications, and progress. Their willingness to entertain my questions and concerns felt very supportive, and our consultations came to feel like a synergistic collaboration.

For example, there were at least two occasions when I experienced unwelcome side effects from my medications. As they speculated on the causes, I would add my own observations about the dosing, timing and effects of various drugs.  Through these collaborative discussions, we successfully resolved some problems that had perplexed each of us individually.

My most frequent and prolonged interactions, however, were with my nurses. From the start, I sought to create some rapport as they tended to my needs.  This began as a conscious strategy on my part, but quickly evolved into a genuine appreciation for all they did and a grateful acknowledgement of their challenges throughout the day.

When time permitted, we would chat about relatives, crack some jokes, commiserate about politics, or share life stories. Each of these conversations reframed their clinical care-giving into a more human and personal interaction. The small efforts I made to establish rapport were repaid many times over in the care I received.

In all these ways, I sought to be an active subject in my care rather than a passive object receiving medical ministrations. Now for the standard disclaimer. I have no idea if my proactive stance had any direct bearing on my successful outcome, but it gave me a significant role in my medical drama that was rewarding in itself.

Surviving Cancer/Sustaining Self 1: Mindfulness

Surviving Cancer/Sustaining Self 2: Physical Activity

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

Surviving Cancer/Sustaining Self 2: Physical Activity

Alongside the practice of mindfulness described in my last post, I also coped with my prolonged treatment for acute myeloid leukemia by doing as much physical activity as possible.

My induction chemotherapy and initial recovery occurred during a 37-day hospital stay.  I arrived with no debilitating symptoms, so I was restless right from the start. I began doing some isometric exercises and stretching to go along with my evening yoga. My routine was enriched when physical therapists gave me additional exercises and some resistance bands to tone various muscle groups.

But my most valued activity was walking the halls.  I walked in the late morning, late afternoon, and before bedtime, pulling my IV pole alongside like a faithful companion.  I followed a serpentine path down the main hallway and every side corridor, repeating it three times on each outing.  They tell me I was walking about five miles a day, which is ironically more than I ever walked in my pre-cancer days.

When I was feeling adventurous, I would hop on the elevator and go down to the main floor and mingle with the civilians.  I would also go out a side door to visit a garden area and feel the sun on my face.  And sometimes I would march out the front door to drop a utility bill in the mailbox.  I was once playfully warned by a nurse that if I had taken one step further, it would have triggered a “code white,” meaning a runaway patient. But like a dog respecting an invisible fence, I never strayed beyond my permitted perimeter.

It felt great to move, but my walking also brought an unexpected benefit.  On my strolls, I would encounter nurses and staff all along the way.  They would often greet me, and we would chat for a minute if time allowed.  It gradually dawned on me that this was the most rewarding part of my walking routine: that I was seen, recognized, and acknowledged as a person and not just a patient.

When I moved to my transplant hospital for a 25-day stay, I was confined to my room for the duration to minimize the risk of infection during the transplant process. I did get a treadmill in my room as a poor substitute for my prior hall walking, but it never could match the social benefits I previously enjoyed roaming the halls.

Standard disclaimer: I have no idea if my physical activity had any direct bearing on my successful treatment outcome, but it sure maintained my spirits during a difficult time.

Surviving Cancer/Sustaining Self 1: Mindfulness

Steve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

Surviving Cancer/Sustaining Self 1: Mindfulness

During my lengthy and ultimately successful treatment for acute myeloid leukemia, there were several practices I deliberately engaged in to sustain myself throughout the ordeal.  These will be the subject of my next few posts.

The first thing that sustained me was mindfulness.  It helped me bring a rich, non-judgmental awareness to each moment as it occurred and realize that everything else – ruminating about the past or worrying about the future – is just noise that detracts from the present moment.

Throughout multiple hospitalizations, prolonged treatments, and gradual recovery, mindfulness reminded me that although I could not control what I was experiencing, I could control how I experienced and responded to it.

My hospital days thus followed a routine of mindful morning stretching and exercises, deep breathing and meditation during the day, evening yoga poses, and a bedtime body scan that led to a peaceful sleep interrupted only by the inevitable intrusions that punctuate every hospital night. The cumulative effect of these practices was a calm acceptance of my situation alongside a serene hope that all would work out for the best.

As I noted in a previous post, I will never know if there was a causal connection between my practice of mindfulness and my recovery and survival. But I do know that this awareness kept me grounded, preserved my identity, and sustained myself through some harrowing times. That in itself felt like a major accomplishment.

 

Steve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

Who Survives Cancer…. and Why?

When people are diagnosed with cancer, the question “why me?” looms large.  For those fortunate enough to survive, the question arises again. While definitive answers to who gets sick and who gets better remain elusive, the questions remain.

In 2016, I was diagnosed with acute myeloid leukemia. I didn’t spend much time asking “why me” because it didn’t seem like a healthy road to go down. After being successfully treated and recovering, I have the luxury of pondering the second question.  Why did I survive while others did not?

In transplant support groups, I often hear people say that everything happens for a reason. I think that is true in a narrow, probabilistic sense. Personal medical history, comorbidities, environmental factors, and genetic abnormalities can dramatically alter the chances of getting and surviving cancer.

But when people say everything happens for a reason, they usually mean that there is a larger, metaphysical reason for the differential survival of patients. As a sociologist, I understand the quest for meaning in the face of life-threatening illness and I respect belief systems that provide comfort and reassurance.

But I just don’t buy it. I don’t think there is an overarching rhyme, reason, or plan that explains life’s most fateful outcomes, whether “miraculously” good or horrifically bad.  Despite our impulse to find larger meanings in such events and after acknowledging how medical interventions can improve our odds, I think there is an irreducible randomness when it comes to surviving a lethal illness.

These thoughts were triggered when people gave me “credit” for surviving my disease. I have always felt uncomfortable accepting such credit.  Part of my discomfort stems from the coupling of credit and blame and the unintended consequences of such thinking.  For example, does crediting survivors for their “positive thinking” imply that non-survivors just weren’t positive enough?

As a patient, there were several coping mechanisms I relied upon throughout my treatment. But I will never know if there was any causal connection between those practices and my positive outcome. What I do know is that they maintained my sanity and preserved my identity during the most challenging experience of my life.

While acknowledging that outcomes may be unpredictable and somewhat random, sustaining ourselves along the way is a worthy goal in itself.  And if it does enhance our odds of survival, so much the better. My own story of what I did to sustain my self will be the subject of posts to follow.

 

Steve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

How Autism Shaped Me as a Writer

      In eighth grade, I discovered a new word I didn’t know existed: ‘autism’.

            Beforehand, I never knew what it meant, until I asked my parents about the definition one day. When I found out, my perspective on my childhood and the world around me shifted, rather than changed completely. Learning that word gave me a sense of clarity. It explained my prescription pills, the challenges I faced compared to other students, and why I couldn’t pay attention to my teacher in class.

For those unaware, autism is a neurological disorder currently found in 1 of 100 children. It is often categorized by an impairment of communication skills and difficulty in social interaction. While the severity of it is variable between patients, symptoms of autism include (but aren’t limited to) a delay in speech during early stages of childhood, anxiety in public spaces, repetitive behaviors/actions/movements, a poor ability of maintaining eye contact, heightened sensitivity and a lack of empathy. All of these symptoms are found on the autism spectrum, which catalogues a person’s autism spectrum disorder (ASD) on a high-functioning/low-functioning scale.

You might have heard of autism in Hollywood films such as Rain Man, Mozart & the Whale, Extremely Loud & Incredibly Close, or even TV shows such as The Good Doctor, where the autistic character is sometimes portrayed comedically as a socially-awkward yet talented savant. While there is some truth to savant syndrome and autism spectrum disorder being often linked, it is not the same for every person on the spectrum. Not every autistic person can be Dustin Hoffman and win every game of blackjack at a casino, or even find the bravery to break away from a planned schedule in their head. It is different for everyone, just as it was for me.

After my revelation, I became depressed. My entire world had been shattered, and I was convinced everyone considered me a freak, and I held this firm belief for a long time. Then I watched a wonderful film called Temple Grandin, a biographical movie about the life and career of Mary Temple Grandin (played by Claire Danes), a woman with autism who revolutionized the humane practices of livestock in slaughterhouses and ranches. Observing how Temple’s mother resisted having her autistic daughter institutionalized, encouraging her daughter to go to college and witnessing Temple become a spokesperson for autism inspired me. It made me believe I was more than a disorder, making me feel more hopeful for the future.

To this day, I’ve unfortunately haven’t had the opportunity to meet Temple Grandin herself, but my younger brother has. He’s attended one of her visiting talks and even requested that she sign a copy of her book Thinking in Pictures for me (Thanks again, Jacob!).

Believe it or not, I originally wanted to become a magician. I wanted to entertain people by pulling them into the wonder of an illusion, which is now the same goal I yearn to accomplish in each story I create. However, it wouldn’t be until tenth grade that I decided to try writing a short story for the very first time. It didn’t seem hard to me, considering I’d often spend my lunch hours in the high school library to escape. I had already devoured almost every book on the shelves, but I craved for more stories to read. There were more stories I wanted to experience, which is when I decided to write my own.

My early writing days are currently a blur, but what I remember the most revolved how to make a story believable. I experienced every symptom of an amateur writer trying to find their style; awkward grammar, complicated stories and writing too much exposition. Each story was harder to write, but each story grew bolder and better. At the same time, I opened myself further than I ever dreamed about. Over time, I slowly realized a writer cannot tell a story about life without experiencing it. If I wanted to make a conversation more believable, or an interaction in a crowd sound more real, in order for the reader to become more engrossed into the narrative, I needed to experience the same thing my characters would.

Creative writing requires patience and the will to let an idea flow to you naturally, which compelled me to practice my craft. At the same time, it compelled me to become more patient in anxious situations. Storytelling also requires making the fictional characters seem as real as you and me. The more I interacted socially, the more I could utilize the diction and mannerisms of a conversation into my dialogue, which in turn benefited my ability to recognize facial expressions and what they mean. Every leap into a conversation improved my writing style, and every interaction in a social setting allowed me to form lasting friendships over the years.

In some way, autism helped me become a better writer and a better friend. Granted, it doesn’t change the fact I still have autism. I become uncomfortable in loud places and sometimes need someone to tell me what they mean versus what they say, which can sometimes irritate my loved ones. Nevertheless, my family, friends and colleagues are very supportive of me as a writer and as someone with high-functioning autism. They gave me the determination to achieve.

In conclusion, I do not consider myself an autistic author, but an author with autism. Ever since my awkward days of high school, it was my dream to be published. Now that I’ve accomplished this goal, I hope to become a spokesman for the autism community. I want to prove to children with autism, Asperger’s or ADHD that the disorder never should define them. They can achieve important things, meet amazing minds and treasure friendships while finding a day of solitude as equally rewarding. Writing helped me overcome many of the obstacles of my condition, which can be the same for another person on the spectrum with their passionate hobby. If you’re a parent with an autistic child, my best advice for you is to encourage their interests and let them evolve into something beautiful.

To quote my hero, Dr. Temple Grandin, “If I could snap my fingers and be non-autistic, I would not. Autism is part of what I am.”

 

Nathan HoppNathan Hopp was born and raised in Green Bay, WI, and discovered his love for literature at a young age. He’s written countless short stories and flash fictions across several years, from vignettes submitted to magazines to short stories he posts online. His debut novel, “The Adventures of Peter Gray” was published in April 2018.

1 2 3