how als change my life essay

Teresa's story: how ALS changed my life

Last updated: 12 April 2019

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'During adversities I always try to see the good side and to see why things happen...it's just a characteristic I have.'

Meet Teresa from Portugal. Spending years as a caregiver, she became an integral part in setting up the Associação Portuguesa de Esclerose Lateral Amiotrofica (Amyotrophic Lateral Sclerosis Portuguese Association, or APELA). 

Now her story begins. Teresa had a pleasant life with family and friends. Her husband was an active person who would take the jeep for a spin, or hop on his motorcycle to drive around the countryside. Then one day everything changed. After experiencing leg cramps and muscle spasms her husband visited his doctor. They were referred to a neurologist who said, 'You have a neurological degenerative disease that has no cure. We don't know the reason for this disease and you will probably be in a wheelchair in a year and will not walk again.'

Her husband had amyotrophic lateral sclerosis, more commonly known as ALS or MND (motor neuron disease). They were devastated. ALS is a progressive disease affecting the nerve cells that control voluntary muscle movement. Over time the muscles weaken and waste away making it more and more difficult to stand, speak, swallow food or even breathe.

Expectations and frustrations

After reading more about the disease, Teresa came to the conclusion that ALS patients at that stage typically had a 3-5 year life expectancy. However, her husband would survive another 11 years and she would stand by him till the end.

Teresa: I was 39 years old so I thought I could just put my life in stand-by and treat him, then resume my life afterwards. And that's what I did, it was a decision I made. [...] The first two years of the illness were very difficult because we did not have time to get used to one situation before we had another one to adapt to. [...] He was very upset about the situation...he was a perfectionist and not being able to do things, it was very complicated.

Patients go to the limit of their abilities

Her husband continued to work for as long as he could. Even when he could no longer walk, he still drove. 'This is normal for patients like him,' Teresa said, 'they go to the limit of their abilities.' A that point eating became very difficult and it would take two hours to feed him lunch. Eventually it became necessary to use a feeding tube. There was a complication while placing the feeding tube, and her husband had the choice between being tracheostomised or to die.

Teresa: It was horrible for me, it was a like bucket of cold water and I remember that I cried so much with the doctor and told him that. I did not know if he would want it.... I never talked to him about the disease, we never talked about how things were going, we always lived day to day, as normal as possible.

[He] asked me, “If I do the tracheostomy will you stay with me?”, and I answered, “Of course. Do you think I stayed with you these two years only to leave you now? Of course I'll stay with you.” And he said, “In that case, I want to do it.” It was a very special day for me because I don’t think I had heard my husband say that he loved me for years, until I heard it that day. After telling him that I was staying with him until the end, he said that he loved me and I think it was worth it just for that.

A day in the life

Teresa: Normally he liked to lie in bed in the morning, he had a television in the bedroom, so he slept and watched a lot of TV. There was a lady who used to help me out in the house with housekeeping, so I used to take this little bit of the morning and I would go out for a little while, which was never too long. I would get up between 7 and 8 am, check his airways, [take care of his] hygiene, and give him breakfast. I'd then leave home at around 11am or noon, and the maid would leave at 1pm, so I’d go out for about an hour. Often rushing everywhere and sometimes I wouldn’t even go out because it wasn’t worth it. If I did go out, it would be for trips to go to the pharmacy, to the supermarket and to visit my mother and be with her for a while, because otherwise I couldn't spend time with her.

Then at 1 o'clock the maid would leave, and it was me who stayed at home. I would lift him from his bed, dress him normally (he never stayed in bed, he didn’t want to), shower him twice a week, give him lunch and in the afternoon we would be there, at home. He was on the computer, he had a specific program that worked with his eyes, and he liked to go to Facebook, read the news, watch a movie if there was one on television that he liked. And I would stick around. At first I had a little more availability because I did not have to be next to him all the time. In the last two years I could not leave his side. The fact that he was so sick for years meant that his eyelid muscles themselves were tired, so he couldn’t blink as easily, which made it hard for him to use the computer. So I spent afternoons leaning on his armchair to click enter on his computer. I spent afternoon after afternoon like that.

Surviving much longer than originally thought, Teresa's husband connected with an ALS patient group and became good friends with a fellow patient. This also gave Teresa some valuable perspective and comfort that she was not alone in this situation. Teresa's husband was able to see his daughters grow up and after battling this disease for 11 years he passed away on Christmas day.

Teresa: I had 33 people spending Christmas at my house...I let him watch TV, like he did every day and went to the kitchen. It was 12:30 and I went to him and said, "People are coming and you're still like this?" Let's get you ready! And he was dead, he’d fallen asleep, it was the most peaceful thing in the world. [...] It had to happen, we knew it was going to happen, but no one expected it, of course, we are never prepared. But I think he chose a perfect day.

Looking back, would you do anything differently?

Teresa: No, not for me. […] I don’t tell people to do things very differently from what I did, because these patients need lots of love and patience. [But] my body started to say, come on, you can't take it anymore. By then I was physically very tired. [...] It was me who carried him alone, who showered him alone, who moved him from the bed to the chair and from the chair to the bed by myself…. I started having heart problems. [...] I am aware that I had reached the limits of my abilities and so had he. [...] I felt that things had to end soon or something would go wrong and I would get [too sick to care for him]. [...] What I say is to seek help because I never had anyone to help me.

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Because of ALS, I started to dream

8 JULY 2020

By Rebecca Rose B. Enriquez

It is never too late to chase after your dreams.

At 48, Vivencio is on his way to his. He recently graduated from senior high school, under the technical-vocational-livelihood (TVL) track.

Vivencio spent most of his years working, and until recently, earning that elusive diploma was nothing but a dream.

As a child, Vivencio helped his parents earn a living. He juggled work and school, sometimes missing classes for a week straight in favor of farming. For extra income, he also climbed trees to collect coconuts which are to be extracted for its oil.

He had his eyes set on college, but was unable to finish high school due to financial problems. And yet, “life must go on,” Vivencio reminded himself.

After dropping out of school, Vivencio worked different jobs, most of which relied on hard physical labor. He manually mixed cement, drove a tractor, cut hair, carried and delivered loads of produce on his back. Late into his 40s, he decided to return to school, while also keeping his job. But how is that even possible?

He found the answer through the Alternative Learning System (ALS).

A student once again

Millions of young Filipinos dream of finishing their studies; unfortunately, not everyone can turn this dream into a reality.

There are 17.7 million Filipinos living in poverty as of 2018, according to the Philippine Statistics Authority. Poverty continues to prevent a lot of Filipino children from exercising their right to education.

The ALS program allows out-of-school children and youth to continue their education through modular and flexible means. The pace of learning depends on the student’s convenience and availability.

ALS helps those who cannot physically go to school on a daily basis due to various reasons. At the end of the program, learners can complete their primary or secondary education.

At first, Vivencio doubted himself because of his age. But his strong drive to earn a high school diploma pushed him to enroll in the ALS program. He realized there was nothing to ashamed of; instead, he should be proud of his decision to continue learning.

Under the ALS program, Vivencio was not required to go to school everyday, which meant he could continue earning a living through his many jobs.

He managed his time well, working in the day and focusing on his studies and assignments afterwards. Throughout the process, his ALS teachers supported him.

After a year of hard work, Vivencio passed his Accreditation and Equivalency Test for Secondary Level. This means he completed his studies until 10th grade.

Where was he headed next? Senior high school.

Without any hesitation, Vivencio enrolled at the Clarencio Calagos Memorial School of Fisheries under the TVL track, specializing in Electrical Installation and Maintenance (EIM).

He plans to use such electrical skills for a sideline business, which could help him save enough money for college. Vivencio worked double time in order to afford his school uniform and other miscellaneous fees.

After two years of toiling away at school, he finally earned his EIM National Certification in March 2020.

Learning adventure

“My life is full of adventures,” Vivencio said in Filipino. “When I was small, I experienced a lot of hardships because of poverty.”

“My family was unable to eat three meals a day because my parents earned just enough to pay off debts,” he continued. “When I left school to work full-time, I was able to help my parents but still, it was not enough.”

That was when he decided to return to school.

“After enrolling at ALS, I started aiming higher,” he shared. “I knew that this learning opportunity would bring me one step closer to college.”

Vivencio admitted that he still encountered difficulties during his ALS studies, “but I had to fight my feelings of hopelessness because I still had dreams to chase.”

“I wanted to learn how to use a computer, I want to be tech-savvy,” Vivencio explained. “I wanted to learn how to communicate with clients, I wanted to be confident in expressing my ideas, and I wanted to be heard. I wanted to influence others to do good.”                    

And he learned all of the above through the  Life Skills Trainings  he attended through Plan International’s RAISE Above Project.

The project also provided financial support to tech-voc learners like Vivencio throughout their learning journey.

According to his teacher, Vivencio is a hardworking and caring student. She never heard him complain of the many tasks they had to accomplish as students and on-the-job trainees.

“Vivencio was always ready to accomplish any task,” his teacher proudly shared. “He had poor eyesight, so he had difficulty with seeing small objects such as screws,” the teacher continued. “And yet he never complained, he did the tasks well.” His teacher also observed that Vivencio enjoyed assisting classmates in whatever way he could. In fact, many of his classmates fondly call him  kuya , which translates to “big brother.”

What is Vivencio’s next destination? College.

He recently took entrance exams. Vivencio wants to major either in mechanical or electrical engineering.

But then the COVID-19 pandemic broke out and Vivencio was filled with anxiety.

He temporarily lost his jobs, which worried him because he had college tuition fees to pay off. He also felt quite sad because his first college experience would have to be put on hold, as classrooms prepare to move online. Whenever all the fears and worries pile up on Vivencio, he stares at his high school diploma and graduation photo. Here, he finds the strength to keep on learning.

“How could I give up now,” he tells himself, smiling. 

Rebecca Enriquez is a Community Development Facilitator under the RAISE Above Project, under Plan International’s  Youth Economic Empowerment Program .

The  RAISE Above Project  empowers Filipinos by making them better realize their rights to education and skills development. We want the youth to raise their hands, raise their voice, and for them to rise above the challenges their communities face.

The Project is implemented by  Plan International Philippines  in  Western Samar.  It is funded by  Dubai Cares .

Education, Skills and work, Vocational training

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Irish's small start to success, a young mother's dream to venture into business, technical-vocational education and training program produce 80 new graduates in barmm.

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My Journey with ALS: an Occupational Therapist’s Story

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Shirley ryan abilitylab was formerly known as rehabilitation institute of chicago [ric] during the time author chris jasch wrote this essay. chris passed away in 2015. we mourn her passing and share this entry with gratitude for her insights..

My name is Chris Jasch and I am an Occupational Therapist in the Technology Center at RIC. I started my career here at RIC in 1987. I worked on the stroke floor for a year then moved to spinal cord. I spent nine years with the team, five years of them as the supervisor of the OTs. In 1996, I moved to the Technology Center, formerly the Brown Center, where I’ve been working with RIC staff and your patients ever since. In 2010, I was diagnosed with ALS. For me, the profession of Occupational Therapy was a perfect match. I thrived on having a role in a person’s return to a meaningful life. I have enjoyed the creativity and collaborative problem solving as we work with our patients to find solutions. We have all worked with patients who have overcome their disabilities to continue on with their lives, as well as with others who have not been able to see their worth after their disability. As OTs, we are in the position to help patients reach their maximum functional level, to influence their attitude, and help them see what they can do more than what they can’t do. Disability has always been a presence in my life. My father had ALS. Having him in a wheelchair and needing assistance was just the way it was. He was my example of a person who lived his life to the best of his abilities, rarely letting his limitations get in the way of what he wanted to do with his family. For example, we continued to go to restaurants, and movies which today doesn’t sound like much of an effort. In the early 1970s, people in wheelchairs were not seen in public much. Ramps were a thing of the future. I distinctively remember him being stared at often. My retaliation was to get in their line of sight and stare right back. In 1975, during my father’s last summer and in a time without any of the technology we have now, he insisted on keeping our tradition of a summer camping trip with friends. I remember that trip fondly, my mother remembers it as a huge effort that could not have happened without friends. When I was ten, my aunt, his sister, was diagnosed with ALS. It was then that we discovered that the familial type of ALS ran in our family. She struggled with depression and rarely left the house. My cousin, her son, passed away in 2003 of ALS. I’ve lived with the knowledge that someday myself, my sister, or my brother might be faced with the same fate. My life is interwoven with disability. I chose a career where I worked with disability every day. I married a man with spinal muscular atrophy who lived his life in a power wheelchair. Disability, for me, has been the norm. We lived what we saw as a normal life. Ken went to college, got a full-time job, a wife, a child and a mortgage; those average expectations needed to fulfill the American dream. When we were younger, we tried not to let his disability limit us. Certainly there was planning (this was pre- ADA), and accommodations were made but we did what we wanted to do. While looking back, I think we should have opened ourselves up to getting more help. On the other hand, our struggles to find the balance between raising our daughter, working full-time jobs, taking care of his needs, and keeping up with our household responsibilities, forced us to work together to find solutions. In November 2008 I started having fasciculations at my left knee. I was terrified. But after checking with my doctors and hoping it was a side effect of medication, I resolved to put it out of my head. In July 2009 weakness in my left foot started and panic set in. After testing we were told by a neurologist that it was not ALS. I had a bulged disk at level L4-L5 on the left side. A little physical therapy to strengthen my core should do the trick. I never truly believed these findings and feared for the worse. My wonderful coworkers became a source of great comfort when crying in my office became a regular occurrence. I was terrified of what the future held and worried about the impact this would have on my daughter, my husband and my job. In November 2009, my husband of 23 years passed away unexpectedly. The progression of my weakness then sped up. We will never know if this was due to the natural progression of the disease or from stress. By February 2010, I needed a cane, by April I needed a foot orthosis, by June I needed a walker, and by August a scooter for distances. July 2010 brought the official diagnosis, something I already knew. Each new stage brought a new challenge. Moving from the cane to the walker; the walker to the chair. My ability to perform those all-important ADLs progressed from independent, independent with equipment, then to the predictable MIN assist, to MOD assist, to directing my own care. I repeated those steps for every activity of daily living; bathing, dressing, toileting, feeding, driving, reaching, grasping and holding objects, typing, writing etc. I was the FIM scale in reverse. After years of rating my patients and developing goals for them to move up the scale, I was quickly moving down the scale. I watched my patients get better as I got worse. I referred to these times as transitions. Each transition brought denial, anxiety, anger, sadness and a great fear of the future. The denial was the most dangerous. Certainly I could still (fill in the blank)… walk to the parking lot (fell), turn off the kitchen light (leaned out of my center of gravity, fell), transfer to the shower chair (fell), continue to dress myself (became a two hour task). It was as if I had never heard the words “injury prevention” or “energy conservation.” It was pointed out to me that while I viewed each change as a transition, the reality was each stage was a loss in my life. Once I began looking at a transition as the loss that it truly was, I was able to acknowledge and grieve the loss and move to the next phase of functional change with easier acceptance and less denial. However, the emotional toll was huge. I was blessed to have a ramp into my home, an accessible bathroom and accessible van. I used a Hoyer lift with my husband every day for twenty-three years. However these necessities were for my husband, not for me. I wasn’t supposed to need them. Yet here I was. I also struggled at work. I tried to minimize my condition. Not easy to do when I was seen using the cane, then the walker, then the wheelchair in the infamous elevators. A packed elevator is not the most ideal location to tell somebody you have worked with for 20 years that you have ALS. In a building full of medical professionals the diagnosis has an instant recognition. On a day-to-day basis as I ran into people I hadn’t seen in a while I watched a common reaction pass-through their eyes; shock, disbelief, followed by a realization of the implications, all within a 90-second elevator ride. The most common question I got was, “Are you sure?” I was lucky enough to have coffee with Dr. Henry Betts one day. He was coming to RIC for therapy on a regular basis. We had the chance to share the irony of our situations and he told me two things that I will never forget. Dr. Betts was comfortable coming to the Institute in his wheelchair and going through therapy. But, I was reluctant to get outpatient therapy. I felt I would be taking therapy time away from somebody who really needed it. After all, I was a therapist myself and should know what needed to be done. Dr. Betts contradicted my reluctance very clearly: why would I not come to the best place in the world for therapy? Dr. Betts was wisely able to put himself in the patient role while I saw myself as an employee that was being a nuisance to other therapists. As I expressed my fears of the future, he very gently said, “You can’t worry about what has not yet happened; the future never works out the way you think it will. You can think about what your evening will be like tonight but it won’t turn out that way. The same concept applies about tomorrow, next month, and next year.” Along the way, I was able to use my OT skills to identify creative adaptations such as using salad tongs to reach various items because the reacher was too long, and using a pair of pliers in the car to retrieve the ATM card or a parking ticket. I started wearing skirts almost exclusively, which made toileting and dressing myself easier. I used common tricks of the trade- long shoehorn, bed ladder, leg lifters, sliding board, quad grip on my electric toothbrush, long straws, drink holder, and modified buttons on my cell phone. I even tried a balanced forearm orthosis (BFO). Work simplification and energy conservation became daily habits. I am certainly blessed to have firsthand knowledge of available technology. I knew which options were available in wheelchairs and have easy access to the experts. I knew how to adapt my cell phone when I was still able to manipulate it and which technology to get once I lost use of my hands. I knew which electronic aids to daily living (EADL) would be the most economical and functional. Fortunately I did not have a learning curve which many of our clients have to overcome. I had been teaching voice recognition technology for the last 17 years, I now use it daily. I can think back to how many times I presented technology options that were technically possible but functionally ridiculous. I now have a user’s understanding of the inherent frustrations that come with technology. Again I am lucky that I am skilled with problem solving but have a better understanding of why some technology winds up in the closet. And here I am today. I can fully move my head and shrug my shoulders. I can still swallow and I can still talk. More importantly, I can still laugh and cry. I can still feel joy as well as sorrow. I can feel a person’s touch, see my daughter smile, hear my cat purr, smell freshly ground coffee and taste rich dark chocolate. I am able to see that I have more blessings in my life than losses. That may sound strange coming from somebody who has experienced a tremendous number of losses in the last 4 years, but I’ve been able to see and experience an unbelievable amount of support, love, and compassion. Had I not been tested, I don’t know if I would have witnessed them as vividly. I have experienced firsthand the power of prayer-how else could I’ve survived the last 4 years? I am not angry at God but know that He is at my side helping me through this part of my life. I still am working, seeing a few patients two days a week with the help of coworkers, students, and volunteers. My manager all the way up to RIC CEO Dr. Joanne Smith has been flexible, accommodating, and supportive beyond imagination. I’ve had several non-RIC people ask me why I’m still working, I’m certainly eligible for disability. To me the answer is simple. This is what I do, this is who I am. It is a huge part of my identity and I feel I can still contribute. My coworkers are like my family. It would be difficult not to see them on a regular basis. I’m teaching patients, students, volunteers, and maybe a few employees what perseverance looks like. I have knowledge and skills that can benefit my patients and colleagues. Plus, with Oprah off the air, daytime television is truly horrific. Before I had my 24-hour caregiver I was at home alone for about six hours, a few days a week. Twenty-five current and former RIC OTs took turns coming over to help me with lunch and odds and ends around the house. I have people making meals for my daughter and me on a weekly basis. I still have people coming over for lunch five or six times a month. You know how we always say “let’s get together”? Well I get to do that. To spend time with people I would otherwise not taken the time to do has enriched my life. I am blessed with an overwhelming amount of support and caring from the RIC community. Throughout this experience I have seen the RIC core values in action. I have hope that the future will be okay, however it plays out. That doesn’t mean it’s going to be easy or without sorrow, but it’s going to be okay. We’ll get through it and we won’t be alone. I have discovered a strength within myself I never knew I had. I have also discovered how wonderful the people of this world are to others. I have experienced compassion beyond measure and have been able to collaborate with the best rehab professionals in the world. In a very unexpected way, by accepting my need to be helped, I have learned perhaps more about life and love than when I worked to the best of my ability to be helpful.

This content is for informational purposes only and may not be comprehensive. Information contained does not imply an endorsement from Shirley Ryan AbilityLab, and does not replace the advice of a qualified healthcare professional.  See here for further details.© Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago). Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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5 Things I’d Tell My Pre-ALS Self That I Learned From Caregiving

A columnist shares valuable takeaways from living with her late husband's ALS

by Juliet Taylor | January 27, 2023

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I’ve read dozens, if not more, of the kind of column I’m about to write: first-person narratives that offer advice to one’s younger self, full of lessons learned from difficult life experiences. Before my late husband, Jeff, was diagnosed with ALS , I devoured these columns, always looking for some relatable wisdom I could use to better find my way in the world.

Jeff’s diagnosis changed me so much that I now divide my life into two distinct periods: before and after ALS . Once ALS hit our family, all of my collected quotations and inspiring phrases went out the window. My go-to phrase in early adulthood — “Do one thing every day that scares you” — felt like a mockery. I was doing multiple things a day that scared me .

Living with Jeff’s ALS meant I had to learn new ways of being, but I didn’t realize what they were until the “after.” Following are five things I’d tell myself before ALS entered our world:

1. Give up my people-pleasing tendencies

One trait I developed in my pre-ALS life was a broad desire to meet others’ needs, to make as many people happy, or at least not unhappy, as possible. People-pleasing is impossible to achieve when living with ALS because it contradicts the needs of our loved ones.

Meeting Jeff’s caregiving needs in a way that provided him with dignity and safety meant that other things had to give. In becoming Jeff’s advocate, it became, as a matter of necessity, much easier to embrace the things we needed and to say no to things that didn’t serve him. Prioritizing in this way gave us focus and clarity, gave him better care, and brought me greater peace.

Revisiting Both Sad and Happy Memories of Life With ALS

2. expand my heart to total strangers.

This may seem counterintuitive after No. 1, but it’s just as true. When living with ALS, we were offered kindness, support, and love from people we’d never met and may never see again. A local hospice volunteer brought me a rose on Mother’s Day and we talked for an hour in my driveway. That morning, I never would’ve seen that conversation coming or known that I needed it. I cannot recall our exact words, but that time is one of the beautiful moments I remember from life with Jeff’s ALS.

I believe there’s a recognition of suffering and loss that binds many of us together. Some of the most beautiful gestures came from people who’d experienced this before and wanted to offer comfort, to let us know that we weren’t alone. One gift left to me by that time in life was that I’m now moved to do this for others, with no agenda or expectation of return.

3. Give myself and my loved ones grace

Early on in Jeff’s ALS, my first caregiving task was to put on his shoes in the morning, as his earliest symptoms kept him from doing so by himself. I remember one morning inadvertently putting his shoes on the wrong feet and him becoming upset with me, something I still feel bad about because it was — for both of us — about so much more than shoes. For him, it was the first physical loss, and for me, it was the recognition that my strong husband could no longer do this for himself and must have felt great sadness.

Rather than focus on the mistake I made, or his reaction, I learned in that moment — and many that followed — that so often, the feelings surrounding mistakes and missteps are often about more than the actual event.

4. Laughter is healing

Many funny things — hundreds, maybe thousands — happened during our time living with Jeff’s ALS. We laughed every day: at the dogs, at the squirrels, at the often ridiculous and frustrating situations that ALS placed us in. While the latter weren’t funny per se, we had the choice to laugh or cry together. Since we did plenty of crying, laughter, when available, always felt better.

5. Be present

Days with ALS were long and exhausting for both of us, one day spilling into the next through many sleepless nights. Scary and sad moments abounded, but so did quiet moments when it was just me and Jeff sitting outside watching the birds, learning to communicate without speech.

ALS didn’t change the fact that he was a wonderful husband, loving and loyal. During those quiet moments, we could soak in the love that we felt for each other, a feeling that helped empower us for tough moments ahead.

Jeff and Juliet on the beach in the Dominican Republic in December 2019, just over a month after Jeff’s ALS diagnosis. (Courtesy of Juliet Taylor)

Note:  ALS News Today  is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or  treatment . This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of  ALS News Today  or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

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Such a beautiful article... Thank you!

DeEtte Petrie

I was diagnosed with ALS in October 2022. Reading some of these stories and watching some Youtube Videos has me scared for the future.

John alvarez

thank you for your tender insightful comments i have a favour to ask there has been reported from professor Tim tree kings college London about a recent breakthrough with als a70% survival benefit at two years with placebo controlled trial and I have been trying to get als news today interested but unable to communicate with them hence when I read your article i thought that this may be a way to get the news out there!

DOREEN ANN MAJEAU

Thank you for sharing these thoughts of wisdom. They were very helpful for me to read.

Juliet, tears flow when I read your columns because you put into words so beautifully everything I am feeling and learning as I share my husband's ALS journey. Many, many thanks.

Your comments about life with ALS are so right on. Thanks for writing them.

Thank you Juliet, so much wisdom

Chris Cantergiani

Thank you so much for this timely article, Juliet! I've passed it along to a friend who is doing some ALS caretaking for his mother. You are a gifted writer with an important message. Do not stop!

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Patient Reflections

“Suggestions for ALS patients and their loved ones:

Without a doubt, an ALS diagnosis is rotten – but so is any diagnosis of a disease that can/will kill you. Rather than dwelling on the negative, however, I have chosen to focus on the positive and I find that I am experiencing a surprisingly happy period of my life. Let me explain.

First, I’ve approached this diagnosis the same way I’ve lived my life: according to the precept that says, ‘There’s nothing either good or bad but thinking makes it so.’ Anything can be seen as good or bad, it’s simply up to you to place a value judgment on it. I decided, for example, to treat myself to a very special trip, something I never would have done without this diagnosis. The trip was wonderful – truly one of the highlights of my life. Thank you, ALS.

I think one of the hardest things about getting any type of dreadful disease is the loss of control one feels. I can’t control the ALS, but I can control how I choose to respond to it. And I choose to be positive.

Second, I don’t waste my energy searching for other diagnoses or some silver bullet that’s going to magically make things better. ALS is a terminal disease and for the time being that’s all there is to it. Dying sucks, but it’s not like it’s a surprise. We’re all born, we all live, we all die. Why should I expect to be any different? I let go of the ‘it’s not fair’ routine. Life isn’t fair and deep down, we all know it.

I choose to use what energy I have on doing things that I enjoy: reading, having lunch with friends, taking short trips (I poop out too quickly now to do anything more than a short jaunt). All my life, I’ve worked very hard and denied myself the chance to do these simple things. Now it’s my time to be good to myself.

I truly do now take time to stop and smell the roses. Well, maybe not the roses, but the sunrises I see from my living room window, the birds hopping around my backyard, and the antics of my cat when she finds a bug in the house. Of course, all these things were taking place before my diagnosis, but I never stopped to pay attention – I was too busy. Now, I sometimes just stand in the window for several minutes in the morning, and give thanks that I’m able to witness such beautiful, shifting colors as the sun comes up.

Third, I’ve been open and honest with my friends about my diagnosis and I’ve been astonished by the support and love that has come back to me. In part, I’m guessing people are responding so positively because I’m not dwelling on the negative and so it’s not hard (yet) to be around me. The payoff, though, is that everyone is being incredibly nice to me. They take me out to lunch. They tell me how great I am, inspirational, etc…

Everyone has to find their own way in life. I can’t advise anyone on what to do, all I can do is say what has worked for me. And for me, I’m finding this stage of the ALS chapter of my life to be a time when I can do what I want and find lots of encouragement from those who care about me. It’s not all bad.

Written by Tamara, Patient diagnosed with ALS February 2015

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Essays About Life-changing Experiences: 5 Examples

Discover our guide for writing essays about life-changing experiences that combine three different elements: narrative, description, and self-reflection. 

Each of us has gone through life-changing experiences that shaped us into the individuals we are today. Because of how powerful they are, these events make for fascinating topics in writing. This subject doesn’t only let us tell our life stories, and it also pushes us to evaluate our behavior and reflect on why an incident happened.

Attract your readers by creating an excellent introduction and choosing a unique or exciting encounter. Paint a picture of the events that describe your experience vividly and finish with a strong conclusion.

5 Essay Examples

1. long essay on experience that changed my life by prasanna, 2. life-changing events: personal experience by anonymous on studycorgi.com, 3. my example of a life-changing experience by anonymous on gradesfixer.com, 4. life-changing experience: death essay by writer annie, 5. a life-changing experience during the holiday season by anonymous on studymoose.com, 1. life-changing experience: defined, 2. the experience that changed my life, 3. life-changing events and how they impact lives, 4. everyday events that change a person’s life, 5. the person who change my life, 6. books or movies that changed my life, 7. a life-changing quote.

“Experiences can be good and sometimes terrible that results in a positive or negative impact on one’s life. Life is full of many unexpected challenges and unknown turning points that will come along any time. People must learn and grow from every experience that they go through in life rather than losing yourself.”

In this essay, Prasanna discusses her father’s death as her most challenging life-changing experience. She was cheerful, immature, and carefree when her father was still alive. However, when her father left, she became the decision-maker of their family because her mother was unable to.

Prasanna mentions that she lost not only a father but also a friend, motivator, and mentor. That sad and unexpected experience turned her into an introverted, mature, and responsible head of the family. Ultimately, she thanks her father for making her a better person, and because of the devastating incident, she realizes who she can trust and how she should handle the real world. You might also be interested in these essays about choice .

“In life, certain experiences present challenges that change the way people relate to themselves and their families. Certain life events mark life-changing moments that alter lives either positively or negatively. It matters how people handle their relationships at such critical moments.”

This essay contains two life events that helped the author become a better person. These events taught them to trust and appreciate people, be responsible, and value family. The first event is when their best friend passes away, leading to stress, loss of appetite, and depression. The second circumstance happened when the author postponed their studies because they were afraid to grow up and be accountable for their decisions and actions.

The writer’s family showed them love, support, and understanding through these events. These events changed their behavior, attitude, and perspective on life and guided them to strengthen family relationships.

For help picking your next essay topic, check out our 20 engaging essay topics about family .

“I thought it was awkward because he looked and acted very professional. In that moment I thought to myself, ‘this person is going to have a great impact in my life!’. I was very curious to meet him and get a chance to show him my personality.”

This essay proves that you should always believe in yourself and not be afraid to try something new. The author recalls when they had many problems and met an extraordinary person who changed their life. 

When they were in sixth grade, the writer had life issues that caused them to be anxious about any future endeavor. The author then says they don’t usually open up to teachers because they fear their reactions. Then they met Mr. Salazar, a mentor who respects and values them, and the writer considers him their best friend.

“When the funeral was over and he was laid to rest, I had a feeling I can’t even describe. It was almost an empty feeling. I knew I had lost someone that could never be replaced.”

Annie never thought that she’d go through a life-changing experience until the sudden death of her father. Her thoughts and feelings are all over the place, and she has many unanswered questions. She says that although she will never wish for anyone to experience the same. However, her father’s passing improved her life in some ways.

Her mother remarried and introduced a new father figure, who was very kind to her. Living with her stepdad allowed her to explore and do things she thought she couldn’t. Annie still mourns the loss of her birth father, but she is also grateful to have a stepdad she can lean on. She gradually accepts that she can’t bring her birth father back.

“This story as a whole has really changed me and made me an even better person in life, I’m so thankful that this happened to me because now I have a greater appreciation for the little things in life.”

The essay shows how a simple interaction on a cold day in December can completely change a person’s view on life. It starts with the writer being asked a small favor of an older man with Alzheimer’s disease to help him find his car. This experience teaches the writer to be more observant and appreciative of the things they have. The author was inspired to spend more time with loved ones, especially their grandfather, who also has Alzheimer’s disease, as they learned never to take anything for granted.

7 Prompts for Essays About Life-changing Experiences

Everyone has their definition of a life-changing experience. But in general, it is an event or series of events profoundly altering a person’s thinking, feelings, and behavior. Use this prompt to explain your understanding of the topic and discuss how a simple action, decision, or encounter can change someone’s life. You might also be interested in these essays about yourself .

For this prompt, choose a specific memory that made you re-evaluate your views, values, and morals. Then, discuss the impact of this event on your life. For example, you can discuss losing a loved one, moving to another country, or starting a new school. Your conclusion must contain the main lessons you learned from the experience and how it can help the readers.

Various positive and negative life-changing experiences happen anytime and anywhere. Sometimes, you don’t notice them until they substantially disturb your everyday life. 

To begin your essay, interview people and ask about a momentous event that happened to them and how it influenced their way of living. Then, pick the most potent life-changing experience shared. Talk about what you’d do if you were in the same situation.

Some life-changing events include common things such as marriage, parenthood, divorce, job loss, and death. Research and discuss the most common experiences that transform a person’s life. Include real-life situations and any personal encounters for an intriguing essay.

It’s normal to meet other people, but connecting with someone who will significantly impact your life is a blessing. Use this prompt to discuss that particular person, such as a parent, close friend, or romantic partner. Share who they are and how you met them, and discuss what they did or said that made a big difference in your life. 

Movies like “The Truman Show” help change your viewpoint in life. They open our minds and provide ideas for dealing with our struggles. Share how you reached an epiphany by reading a book or watching a movie. Include if it’s because of a particular dialogue, character action, or scenes you can relate to.

While others use inspirational quotes for comfort and to avoid negative thinking, some find a quote that gives them the courage to make drastic changes to better their lives. For this prompt, search for well-known personalities who discovered a quote that motivated them to turn their life around.  Essay Tip: When editing for grammar, we also recommend spending time and effort to improve the readability score of your essay before publishing or submitting it.

Maria Caballero is a freelance writer who has been writing since high school. She believes that to be a writer doesn't only refer to excellent syntax and semantics but also knowing how to weave words together to communicate to any reader effectively.

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Changes in Life: Positive and Negative Effects Essay

One of the invariable realities in life is that we are every in a state of change. These changes may be positive or negative but regardless of their nature, they are a fundamental part of our lives and it is important that we brace ourselves for them. In my life, I have had many changes; some of which have been inconsequential and other which have literally marked a turning point in my life.

In this paper, I shall narrate one of the significant changes in my life so as to highlight the fact that our perception of the change does at times determine whether the experience will be enjoyable or shall yield to discomfort and insecurity.

The particularly significant change in my life came about as a result of the announcement by my parents that we would be moving from Texas to New Mexico. What made this change so significant to me was that we had been living in the same neighborhood for as long as I could remember and the moving process felt like literally been uprooted.

As such, the change represented being taken away from what I was familiar with and loved to being placed in a foreign place which held a lot of uncertainty for me. My initial reaction was that of shock and distress at the prospect of what life in the new place would hold.

While I did enjoy visiting new places, I had never pictured myself moving from my home town on a permanent basis. In a bid to resist the change, I tried to reason my parents out of their decision. This was a futile attempt mostly because I had no solid reasons as to my opposition to our moving.

When it was finally clear to me that we were going to move regardless of my stance, I resigned myself to my fate and I recall wallowing in self pity as I expressed my predicament to my friends. However, one of my friends who happened to have come from New Mexico remarked that the place was actually enjoyable and held many a fascinating scenes for people.

In addition, he commented on the lovely neighborhoods and the tight knit communities that were there. His statements opened my eyes to the possibilities that the change in my life presented. I had been too indulged in the uncertainty and discomfort that would arise from the move that I had failed to consider the numerous possibilities that the change presented.

In my blindness, I had set out to avoid the change and failed to recognize the fascinating new possibilities. From this point on, I took up a more positive outlook and actually looked forward to the move.

On getting to New Mexico, I discovered that while everything was not as picturesque as my friend had suggested, the place was actually enjoyable and the community was not that different from the one in my previous neighborhood.

Due to the fact that I had braced myself for the change, I overlooked the negative aspects of my new home town and as a result of my optimism and high spirits, the change turned out to be one of the most memorable ones in my life.

From my experience, I learned that sometimes the changes in our lives are neutral and it is our perception that makes them either a joy to be looked forward to or a pain to be shunned. I also learnt that our fears of change in most cases spring from unfounded assumptions and our own prejudices.

As such, it is important for us to adopt an open minded and optimistic outlook as we undergo the numerous changes that life presents to us. By doing this, we will be increasing our chances of leading a satisfying and fulfilling life.

• Chicago (A-D)
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IvyPanda. (2023, October 31). Changes in Life: Positive and Negative Effects. https://ivypanda.com/essays/changes-in-life/

"Changes in Life: Positive and Negative Effects." IvyPanda , 31 Oct. 2023, ivypanda.com/essays/changes-in-life/.

IvyPanda . (2023) 'Changes in Life: Positive and Negative Effects'. 31 October.

IvyPanda . 2023. "Changes in Life: Positive and Negative Effects." October 31, 2023. https://ivypanda.com/essays/changes-in-life/.

1. IvyPanda . "Changes in Life: Positive and Negative Effects." October 31, 2023. https://ivypanda.com/essays/changes-in-life/.

Bibliography

IvyPanda . "Changes in Life: Positive and Negative Effects." October 31, 2023. https://ivypanda.com/essays/changes-in-life/.

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Four healthy lifestyle choices could add years to your life, regardless of your genes, scientists say

• A study found linked between healthy lifestyle habits and living longer.
• This was the case whether people were genetically predisposed to long lifespans or not.
• Lifestyle changes such as eating healthily and exercising can extend lifespan, the study suggests.

Healthy lifestyle choices could help us live up to five years longer, regardless of our genetic makeup, a study suggests.

As life expectancy creeps up worldwide, there's growing interest in living healthily for as long as possible, with some trying to reduce their "biological age" and others turning to personalized medicine to prevent health issues. Evidence suggests that a combination of a person's genetics and lifestyle governs how long they'll live, but a study published in BMJ Evidence-Based Medicine on Monday is thought to be the first to compare the effects of the two on lifespan.

The study looked at data from 353,742 adults with European ancestry collected between 2006 and 2010, and tracked their health until 2021 to ascertain whether their genes or lifestyle had a bigger impact on their lifespan.

The researchers ranked the participants according to whether they were genetically predisposed to diseases that could shorten their lifespan, and whether they led a healthy lifestyle. Not smoking, exercising regularly, eating a healthy diet, getting enough sleep, having a healthy body shape, and drinking alcohol in moderation defined a favorable lifestyle, while the opposite was unfavorable.

Healthy lifestyle choices appeared to offset the impact of genes on longevity

Participants who led "unfavorable" lifestyles were 78% more likely to die early than people with favorable lifestyles — regardless of whether they had genes linked to a shorter or longer lifespan.

Related stories

The study also found those who were genetically predisposed to short lifespans were 21% more likely to die early than those predisposed to longer lives, even if they made favorable lifestyle choices. At the same time, a healthy lifestyle appeared to offset the effects of genes linked to a shorter lifespan by 62%.

Making favorable lifestyle choices despite having genes linked to a shorter lifespan was linked to living 5.22 years longer than those who made unfavorable choices.

Dr. Liz Williams, a lecturer in human nutrition and a member of the Healthy Lifespan Institute at the University of Sheffield, who wasn't involved in the study, told Business Insider that she wasn't surprised that the study found a link between lifespan, genes, and lifestyle factors. However, she said that the effects of lifestyle factors in the study were notable because they suggest that while we can't change our genes, healthy habits may lessen their impact.

Not smoking, exercising regularly, getting enough sleep, and eating a healthy diet could help you live longer

The researchers argued that not smoking, exercising regularly, sleeping seven to eight hours a night, and eating a healthy diet formed what they called an "optimal lifestyle combination," which appeared to help people live longer while being sustainable over a long period.

The study defined adequate exercise according to the American Heart Association's guidelines of 150 minutes of moderate activity, such as walking, gardening, or tennis, or 75 minutes of vigorous activity a week, such as hiking, swimming, or heavy yard work. A balanced diet with an adequate amount of fruits, vegetables, whole grains, and fish, and a low amount of red and processed meats was deemed healthy.

The researchers didn't include having a healthy body shape — i.e., having a BMI of between 18.5 and 30 — or reducing alcohol consumption in their "optimal lifestyle combination." However, the Centers for Disease Control and Prevention states that obesity is associated with the leading causes of death, and that drinking too much alcohol can shorten people's lives by an average of 24 years.

Williams said that alcohol consumption and body shape "definitely still matter" for longevity.

It's also important to note that the study was observational, meaning the researchers couldn't prove that the lifestyle changes improved the participants' longevity. Plus, because this study was only done on people of European descent, the same associations might not apply to other populations, Williams said.

Watch: Gen Z is receptive to health information, especially in the social channels where they live, says Haleon's CMO

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Home — Essay Samples — Education — College Life — How College Will Change Your Life

How College Will Change Your Life

• Categories: Change College Life

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Words: 621 |

Published: Sep 5, 2023

Words: 621 | Page: 1 | 4 min read

Table of contents

Personal growth and independence, academic and intellectual growth, career preparation, expanding social horizons, shaping values and worldview.

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Narrative Essay on The Book That Changed My Life

Books have the power to transport us to different worlds, challenge our perspectives, and inspire personal transformation. In this narrative, I will share the profound impact of a particular book that changed my life, exploring the moments of enlightenment, self-discovery, and growth that have shaped my journey.

Discovering the Book

It was a nondescript day like any other when I stumbled upon the book that would alter the course of my life. Tucked away on a dusty shelf in the corner of a bookstore, its title caught my eye, beckoning me to delve into its pages. Little did I know that within those worn covers lay the keys to unlocking a world of insight and revelation.

Immersion in the Pages

As I immersed myself in the pages of the book, I found myself captivated by its wisdom, its words resonating deep within my soul. Each chapter unveiled new truths, challenging my preconceived notions and inviting me to question the very fabric of my reality. It was as if the author had reached through the pages and touched the innermost recesses of my being, igniting a spark of curiosity and introspection that would forever alter my perspective.

Moments of Enlightenment 

As I journeyed through the book, I experienced moments of profound enlightenment that left me breathless with wonder. I discovered new ways of thinking, new paths to explore, and new depths of understanding that I never knew existed. With each revelation, I felt myself shedding the layers of ignorance and complacency that had weighed me down, emerging as a more enlightened and aware version of myself.

Self-Discovery and Reflection

The book served as a mirror, reflecting back to me aspects of myself that I had long ignored or denied. It challenged me to confront my fears, my insecurities, and my deepest desires, forcing me to reckon with the truth of who I was and who I wanted to become. Through moments of introspection and self-reflection, I embarked on a journey of self-discovery that would forever alter the trajectory of my life.

Growth and Transformation 

As I turned the final page of the book, I realized that I was not the same person who had first picked it up. I had grown, evolved, and transformed in ways that I never thought possible. The lessons I had learned, the insights I had gained, and the truths I had uncovered had fundamentally shifted my perspective on life, love, and the pursuit of happiness.

Integration into Daily Life 

Armed with the knowledge and wisdom gleaned from the book, I set out to integrate its teachings into my daily life. I sought to embody its principles of compassion, mindfulness, and gratitude, striving to live each day with intention and purpose. Though the journey was not without its challenges, I found solace in the knowledge that I was walking a path of authenticity and integrity.

The book that changed my life served as a catalyst for personal growth, transformation, and self-discovery. Its words became a guiding light, illuminating the path ahead and inspiring me to become the best version of myself. As I continue on my journey, I am forever grateful for the profound impact of this book, and the lessons it has taught me about life, love, and the boundless potential of the human spirit.

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Friday essay: Alice Pung — how reading changed my life

Author (non-fiction, fiction, young adult), The University of Melbourne

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Alice Pung does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

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Having survived starvation and been spared execution, my father arrived in this new country, vassal-eyed and sunken-cheeked. I was born less than a month later and he named me Alice because he thought Australia was a Wonderland. Maybe he had vague literary aspirations for me, like most parents have vague infinite dreams for their babies, so small, so bewildered, so egoless. I arrived safe after so many babies had died under the regime created by a man who named himself deliberately after ruthless ambition — Political Potential, or Pol Pot for short.

“There was a tree,” my father told me when I was a teenager, “and this tree was where Pol Pot’s army, the Khmer Rouge, killed babies and toddlers. They would grab the infant by their ankles and swing them against the trunk and smash them again and again until they were dead.”

When I was an adult, I found out that there was not just the one tree. There were many such trees from which no cradle hung.

But as a child, growing up in Australia, the oldest of four, I knew the words to comfort crying babies. They’d been taught to me by my schoolteachers, with rhyme but without reason: when the bough breaks the cradle will fall and down will come baby, cradle and all. A gentle song to rock my sisters to sleep. If my mother understood the words I was singing, she’d yell at me.

My mother was always hollering at me about one thing or another. After the age of eight, I was never left in peace. She repeatedly told me that babies had really soft skulls, that there was even a hole in their heads that hadn’t yet closed. When I looked at my baby sister, I could see something pulsing on the top of her scalp, beneath the skin. Never drop a baby, they warned me, or your life will be over. They spoke in warnings and commands, like Old Testament sages. They’d seen babies dropped dead. Their language was literal, not literary, but it did the trick.

We could not complain that we were dying of boredom because they’d seen death close-up, and it was definitely not caused by a lack of Lego. We could not say that we were starving because at one malarial point in his life, my father thought that if he breathed inwards he could feel his backbone through his stomach. We could never be hungry or bored in our concrete house in Braybrook, behind a carpet factory that spewed out noxious methane smells that sent us to school reeking like whoopee-cushions.

But in this scatological suburb, I was indeed often bored shitless. Imagine this — you go outside and hoons in cobbled-together Holdens wind down their windows and tell you to Go Back Home, Chinks. So you walk home and inside, it’s supposed to be like home. But it’s not a home you know.

It’s a home your parents know, where the older siblings look after the younger ones and your mum works in an airless dark shed at the back making jewellery, and you think it’s called outworking because although she’s at home she’s always out working. Just like her mum in Phnom Penh and her mum’s mum in Phnom Penh and every other poor mum in the history of your family lineage.

“What are you doing here? Stop bothering me,” your mum would tell you. Or when she was desperate, she’d be cajoling: “Take your siblings out. Go for a walk. If you give me just one more hour, I’ll be done.” Her face would be blackened, her fingers cut. She’d have her helmet on, with the visor. She looked like a coal miner.

Back in Cambodia, the eldest siblings looked after the bevy of little ones, all the children roaming around the Central Market, en masse. Here, in these Melbourne suburbs they’d call it a marauding Asian gang, I bet. I preferred to stay at home. I had plenty to keep me occupied there. Our school library let me borrow books, but I can’t even remember the names of the librarians now. They didn’t like some of the kids because sometimes we stole books.

My best friend Lydia read a book about Helen Keller that so moved her, so expanded her 10-year-old sense of the world that she nicked it and stroked the one-line sample of Braille print on the last page until all the raised dots were flat. I nicked books too, books on needlecraft and making soft toys. Sometimes one of my aunts would come by and give us a garbage bag filled with fleecy fabric offcuts from her job sewing tracksuits in her own back shed.

Being a practical kid who bugged her parents at every opportunity possible for new toys, I wanted to have reference manuals on how to make them. I didn’t nick story books or novels because to me, those were like films I often only wanted to experience once.

One day, my baby sister rolled herself off the bed when I was supposed to be watching her. She was three months old. I had just turned nine. My mother ran into the house and railed at me like a dybbuk, “You’re dead! You’re dead!” She scooped my sister out of my hands. “What were you doing? You were meant to watch her!”

“She was asleep,” I sobbed, “I was reading a book.”

While my mother was working to support us in the dark back shed, I had been in the sunlit bedroom, staring for hours and hours on end at little rectangles, only stopping occasionally to make myself some Nescafé coffee with sweetened condensed milk. If this wasn’t the high life, then what was? Those books were not making me any smarter, she might have thought. Or even said, because it was something she was always telling me, because she couldn’t read or write herself. The government had closed down her Chinese school when she was in grade one, as the very first step of ethnic cleansing in Cambodia.

My mother called up my father and roared over the phone for him to come home immediately because I’d let my sister roll off the bed and she might be brain-damaged. “If she’s brain-damaged, you’re going to be dead,” my father said to me, before they both left for the hospital with my sister.

I hated my parents at that moment, but I hated myself more. I also hated the Baby-Sitters Club, all of those 12-year-old girls for whom looking after small children was just an endless series of sleepovers and car-washes and ice-cream parties and they even always got praised and paid for it. The only people I did not hate were my siblings. They were blameless.

This fucking reading , I thought, because this is how I thought back then, punctuated by profanity, because this is how I wrote back then in diaries I made at school of folded paper stapled together with colourful cardboard covers that I’d then take home and fill in with pages and pages of familial injustice. Sometimes the pen dug in so aggressively underlining a word of rage that I’d make a cut through the paper five pages deep. And this is how the kids talked at school, and also some of their parents who picked them up from school. But then I also realised, reading’s the only fucking good thing I have going for me .

It showed me parents who were not only reasonable, but indulgent. They were meant to be friends with their kids. They were meant to foster their creativity and enterprise. They hosted parties and baked cupcakes and laughed when their children messed up the house, and sat them down and explained things to them carefully with great verbal displays of affection. But only if the kids were like Kristy or Stacey or Dawn in the Baby-Sitters Club.

Read more: Friday essay: need a sitter? Revisiting girlhood, feminism and diversity in The Baby-Sitters Club

If they were anything like me, then they didn’t talk very much. We were refugees in school textbooks, there for edification, to induce guilt and gratitude. The presence of third-world people like us in a book immediately stripped that book of any reading-for-pleasure aspirations. We were hard work. We were Objects not Subjects. Or if subjects, subjects of charity and not agents of charity. Always takers, never givers. No wonder people resented us.

Hell, even I resented us! “Girls are more responsible,” my mother always told me. When my aunties dumped their children, my little cousins, with me, they’d always say, “Alice is so good. We trust her.” What’s one or two or three more when you already have so many in the house? they reasoned.

I imagined if some prying interloper had called the cops on my parents when I was young, seeing our makeshift crèche with no adult supervision around. “If you tell the government what I do,” my mother always warned me when I was a child, “they’ll take me away and lock me up and your brother and sisters will be distributed to your aunts and uncles or be put in foster homes.”

What she did — her 14-hour days in the back shed, working with potassium cyanide and other noxious chemicals to produce the jewellery for stores that would then pay her only a couple of dollars per ring or pendant — she thought was a crime. She got paid cash in hand, so she never paid any taxes. She just didn’t understand that she wasn’t the criminal; she was the one being exploited.

My mother began work at 13 in a plastic-bag factory, after her school was closed down. When all the men were at war, the factories were filled with women and children. One afternoon, she told me, she accidentally sliced open a chunk of her leg with the plastic-bag-cutting machine. She had to stay home for the next two weeks. She spent those two weeks worrying whether she’d be replaced by another little girl. In her whole working life, spanning over half a century, my mother has never signed an employment contract because she can’t write or read.

“People can rip me off so easily,” she would often lament, “that’s why I have to have my wits about me at all times.” She’d always count out the exact change when she went grocery shopping even though it mortified me as a kid, and drove those behind her in line nuts. “If they overcharge me and you’re not here, how can I explain anything to them?” she’d ask, “I don’t speak English.”

She’d memorise landmarks when driving, because she couldn’t read street signs. During elections, she would put a “1” next to the candidate who looked the most attractive in their photo. And she’d ask me to read the label on her prescription medicines.

“Tell me carefully,” she’d instruct, “too much or too little and you could kill me.” The power over life and death, I thought, not really a responsibility I wanted at eight. But power over life and death is supposed to be what great works of art are about. Sometimes, there’s not a huge chasm between being literate and being literary. They are not opposite ends of a continuum.

Sure, I enjoyed the classics, especially that line in Great Expectations when Pip determines that he will return a gentleman and deliver “gallons of condescension”. But the depictions of working children, children treated as economic units of labour, as instruments for ulterior adult ends – this was nothing new to me.

Looking after children is hard work. No one cares when things go right, it is the natural course of the universe. But everyone swarms in when things go wrong. A whole swat team, sometimes consisting of your own extended family members, ready to whack at you like a revolting bug if harm should befall your minor charges. The sad reality is that when you slap a monetary value onto these services, people sit up.

They pay attention. They first splutter about how outrageous it is. Then slowly they accept it. You hope that one day no children will be left at home, minding other children while their parents work, because all working parents will be able to access good, affordable childcare.

Often when people rail, think of the children! they are not really thinking of the children. Otherwise, they would listen to the children, not condemn the parents for situations beyond their control — illiteracy, minimum wages, poverty.

Jeanette Winterson wrote about art’s ability to coax us away from the mechanical and towards the miraculous. It involves just seeing the extraordinary in the ordinary. To understand that an eight-year-old can and will take responsibility and care of themselves when left to their own devices requires imaginative empathy, not judgement.

Reading showed me what the world could be. My life told me what the world was. It was not Jane Eyre or Lizzie Bennet or even Nancy Drew that opened my life to the possibility of a better existence. It was Ann M. Martin and her Baby-Sitters Club. That children should get paid was a crazy idea, that they should get paid for babysitting even more audacious.

That a handful of pre-teen girls could start a small business from Claudia’s home — beautiful artistic Asian Claudia Kishi with her own fixed phone line — and that they could muster all the neighbourhood children under their care and largesse was revolutionary to me.

In my life, the miraculous does not involve magic. There is nothing that makes the state of childhood particularly magical. There is a lot that is frightening, brutal and cruel about every stage of life. After all, I know that a single tree can harbour a cradle or a grave. But to be able to do what my hardworking, wonderful mother never could — time-travel, mind-read, even never to mistake dish detergent for shampoo because the pictures of fruit on the bottle are similar — this is a gift I will never take for granted.

This is an extract from The Gifts of Reading: Essays on the Joys of Reading, Giving and Receiving Books curated by Jennie Orchard, with all royalties to be donated to Room to Read (RRP $32.99, Hachette Australia), available now.

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How COVID-19 pandemic changed my life

Table of Contents

Introduction

The COVID-19 pandemic is one of the biggest challenges that our world has ever faced. People around the globe were affected in some way by this terrible disease, whether personally or not. Amid the COVID-19 pandemic, many people felt isolated and in a state of panic. They often found themselves lacking a sense of community, confidence, and trust. The health systems in many countries were able to successfully prevent and treat people with COVID-19-related diseases while providing early intervention services to those who may not be fully aware that they are infected (Rume & Islam, 2020). Personally, this pandemic has brought numerous changes and challenges to my life. The COVID-19 pandemic affected my social, academic, and economic lifestyle positively and negatively.

Social and Academic Changes

One of the changes brought by the pandemic was economic changes that occurred very drastically (Haleem, Javaid, & Vaishya, 2020). During the pandemic, food prices started to rise, affecting the amount of money my parents could spend on goods and services. We had to reduce the food we bought as our budgets were stretched. My family also had to eliminate unhealthy food bought in bulk, such as crisps and chocolate bars. Furthermore, the pandemic made us more aware of the importance of keeping our homes clean, especially regarding cooking food. Lastly, it also made us more aware of how we talked to other people when they were ill and stayed home with them rather than being out and getting on with other things.

Furthermore, COVID-19 had a significant effect on my academic life. Immediately, measures to curb the pandemic were announced, such as closing all learning institutions in the country; my school life changed. The change began when our school implemented the online education system to ensure that we continued with our education during the lockdown period. At first, this affected me negatively because when learning was not happening in a formal environment, I struggled academically since I was not getting the face-to-face interaction with the teachers I needed. Furthermore, forcing us to attend online caused my classmates and me to feel disconnected from the knowledge being taught because we were unable to have peer participation in class. However, as the pandemic subsided, we grew accustomed to this learning mode. We realized the effects on our performance and learning satisfaction were positive, as it seemed to promote emotional and behavioral changes necessary to function in a virtual world. Students who participated in e-learning during the pandemic developed more ownership of the course requirement, increased their emotional intelligence and self-awareness, improved their communication skills, and learned to work together as a community.

If there is an area that the pandemic affected was the mental health of my family and myself. The COVID-19 pandemic caused increased anxiety, depression, and other mental health concerns that were difficult for my family and me to manage alone. Our ability to learn social resilience skills, such as self-management, was tested numerous times. One of the most visible challenges we faced was social isolation and loneliness. The multiple lockdowns made it difficult to interact with my friends and family, leading to loneliness. The changes in communication exacerbated the problem as interactions moved from face-to-face to online communication using social media and text messages. Furthermore, having family members and loved ones separated from us due to distance, unavailability of phones, and the internet created a situation of fear among us, as we did not know whether they were all right. Moreover, some people within my circle found it more challenging to communicate with friends, family, and co-workers due to poor communication skills. This was mainly attributed to anxiety or a higher risk of spreading the disease. It was also related to a poor understanding of creating and maintaining relationships during this period.

Positive Changes

In addition, this pandemic has brought some positive changes with it. First, it had been a significant catalyst for strengthening relationships and neighborhood ties. It has encouraged a sense of community because family members, neighbors, friends, and community members within my area were all working together to help each other out. Before the pandemic, everybody focused on their business, the children going to school while the older people went to work. There was not enough time to bond with each other. Well, the pandemic changed that, something that has continued until now that everything is returning to normal. In our home, it strengthened the relationship between myself and my siblings and parents. This is because we started spending more time together as a family, which enhanced our sense of understanding of ourselves.

The pandemic has been a challenging time for many people. I can confidently state that it was a significant and potentially unprecedented change in our daily life. By changing how we do things and relate with our family and friends, the pandemic has shaped our future life experiences and shown that during crises, we can come together and make a difference in each other’s lives. Therefore, I embrace wholesomely the changes brought by the COVID-19 pandemic in my life.

• Haleem, A., Javaid, M., & Vaishya, R. (2020). Effects of COVID-19 pandemic in daily life.  Current medicine research and practice ,  10 (2), 78.
• Rume, T., & Islam, S. D. U. (2020). Environmental effects of COVID-19 pandemic and potential strategies of sustainability.  Heliyon ,  6 (9), e04965.
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How Does ALS Affect My Life?

This is a personal statement read by Jennifer Bernay on the 2021 virtual hill day held with the ALS Association Northern Ohio Chapter, ALS patients, families and caregivers, and members of congress representing the state of Ohio. 

My mom was diagnosed with advanced stage sporadic ALS last November. She passed away approximately five months after receiving her diagnosis. I would like to begin by thanking our local ALS chapter for their support and guidance in helping us navigate her fight against ALS.

What began over a year ago was her quest to find answers to her “floppy foot,” which was the initial symptom. With no family history of the disease, she spent over a year going to doctor appointments, actively searching for answers. She was determined to get her life back, visiting her PCP multiple times and seeking answers from several neurologists. She was told it was due to a nerve compression in her spine and untreated scoliosis, was scheduled for surgery, and she was hopeful. She endured the surgery and subsequent rehab isolated from her family, but, unbeknownst to her, she was entering a battle for which she was not given the ammunition. We need to do better. ALS patients deserve better.

Due to her diagnosis with advanced stage ALS, she was unable to participate in clinical trials. Providing more funding to create more opportunities for clinical trials, including trials for all stages of ALS, is essential. My Mom would have participated in any type of trials that might stop or slow the progression of her condition, anything that could provide some kind of hope for her.

My mom, like most ALS patients had been healthy her whole life, and she faced the news of her ALS diagnosis courageously. She fought to the best of her ability, at 79 years of age, against this brutal disease but also had to contend with the denial of services by Medicare that were so needed, such as PT, OT, speech, and respiratory therapy. CMS determined that she would not benefit from these services, although fiercely advocated by ALS specialists. She deserved every tool available to fight this disease and to be given the appropriate equipment in her arsenal. She was so much more than her member ID. Her mind remained unchanged during all of this as she gave witness to what ALS was doing to her body. She was unable to talk, hug her family, cry, or even scream over the frustration of it all. There is nothing more heartbreaking. 

Our family was also faced with the costs of providing 24 hour care to meet the needs of her rapidly declining health. I applied for grants and assistance where I could, but the financial costs, even with her long-term care insurance, could not keep up with the overwhelming burden. The cost of bringing in aides to help with her care in her last few months cost $35,000. For many families, covering these types of medically necessary costs is problematic, as these are unforeseeable circumstances that are difficult to plan for in retirement or at any point during one’s lifetime.

I also feel that ALS needs to be recognized as a reportable disease. This disease, which has been around for more than 80 years, can strike anyone, at any time. Case counts fluctuate and more funding to help the ALS Registry house this information in a central database will help with research as to possible causes or links to triggers with this disease.

How does ALS affect my life? It took away an irreplaceable part of my light, laughter, joy, and a piece of my heart. Her case can never be an example of what others should go through. We have the doctors, the services, and the specialists available to make ALS a livable disease by 2030. What we are missing is funding for research, awareness, educating and training for PCP’s, treatments, and insurance benefits to aid those in their battle. My mom was not given a fair fight, she had more to contribute, more love to share, and more people to inspire. Please use our story so that no other family has to endure what we did, helplessly watching a loved one succumb to this cruel disease, especially in a matter of months. I, personally, will do whatever it takes, as her fight is now my fight. ALS might have won in her battle, but I am now her voice and I will fiercely advocate and continue the fight against this disease for her and others.

Thank you for your time and providing me with the opportunity to speak with you today.

Jennifer Bernay, a member of The ALS Association Northern Ohio Chapter

Northern Ohio Chapter