Our Als Stories

KIERAN

Kieran wrote an essay on the subject of life as a young caregiver, with the help of his mentor, Wendy Angulo, professional poet and writer.

Kieran

Life Isn't Fair: My Journey As a
Young Caregiver

by Kieran

The memory blurs as time passes by, but it never really goes away. I remember sitting at my little desk watching videos on the computer, completely engrossed in them. I was nine years old. It was the summer of 2012 in Nicoya, Costa Rica.

My mom and I were on a vacation in her home country. Everything seemed so simple and routine. Life is always an easy routine, until it’s not. The most pressing issue on my mind was which video game I was going to ask my parents for when I got home.

I was startled by the noise of people sobbing outside the room, I made my way to the living room, hesitant but curious. My mom and three of her sisters were in the living room. A bunch of other cousins and friends were scattered around the house. Over all of the noise, I could still hear the crying. I saw my mom and aunts sobbing, holding each other. I was immediately confused. What was going on? And I was distracted by the smell of the food being prepared in the kitchen.

I hobbled over to my mom, grabbed her shoulder, and asked what was going on. Her response was the classic parental comeback when something is definitely wrong, “Nothing honey, everything is fine.” That would have been pretty easy to believe, if it wasn’t for all the crying. I said okay and went back to my videos. How out of the ordinary it was to see my family crying. But I wanted to use the computer some more.

That incident was mostly ignored for a couple of months after we returned home. I can’t believe I spent all that time completely oblivious to how my life had been changed forever.

Life went on, and everything seemed fine. I remember sitting on our back porch one day, talking to my dad about something. He said it wasn’t fair to keep me in the dark, and asked my mom to sit outside with us. I had no idea what was going on, having almost completely forgotten the Costa Rica episode a few months earlier. Being told that you’ve been kept in the dark is like being told that you are too naive to realize what is happening behind the scenes of your own life. I felt the warm summer air on my skin, but that wasn’t what made me sweat. I was going to be told something that would change my life, my perception of the world, and the very person I had grown to be up until then.

Calmly and gently, my dad told me that he had been diagnosed with a serious and eventually fatal disease called amyotrophic lateral sclerosis, or ALS. He explained that over the next few years, he would lose his ability to move his arms and legs, then lose basically all of his muscle mass, then eventually be unable to talk or breathe. I felt as though I was in some sort of science-fiction movie. How could you go from a perfectly healthy adult to an immobile shell of your former self in just a few years? I didn’t understand exactly what that would look like until I was shown a picture of Stephen Hawking, the British physicist who was diagnosed with ALS at age 21. My parents tried to comfort me by explaining that he had had ALS for more than fifty years, and that cases vary from person to person. They explained that dad could live for more than the two-to five- year life expectancy. Or less.

I remember feeling so overwhelmed I couldn’t comprehend anything being said to me. I felt tears moisten my eyes. I was speechless. I think I spent the rest of that week, dealing with what had just trampled on my life as I knew it. My dad was my best friend, my greatest role model, my favorite person to be around. How could I watch him shrivel into a smaller shell of his former self? He was always larger than life and invincible in my eyes. I didn’t know. Maybe I still don’t.

After the revelation, I fell into a depression. I couldn’t think about anything else. I began to wonder about the afterlife, existence itself. About how a cure could be found during his lifetime. I remember we went to Disney World, “the happiest place on earth,” and feeling like nothing else mattered anymore. If my dad, my greatest hero, was taken away from me, what would I be reduced to? The answers I sought were scattered around the chapters of my life. I have found some answers but others I may never stop looking for. This portion of my life really hurt. There’s no other word to use. Part of me felt damaged during that time. But like my dad always says, “Life isn’t fair.” Why should I have expected it to be?

In these seven years, some aspects of my life got easier, others not so much. Through the grace of God, my dad is still with us today, “alive and kicking,” as he likes to say. I am now one of his primary caregivers, along with my mom, who pretty much runs the whole show. Dad has lost all of his strength in both arms, and can only walk with assistance. He is now totally dependent on me and my mom. A whole world of responsibility fell on me.

There have been ups and downs along the way. But I’d be lying if I said nothing good has come out of it. I truly feel that because of my dad’s diagnosis, I have become a better person. I have grown in empathy and compassion towards others, and I can put myself into other people’s shoes better than if I had lived a more happy-go-lucky lifestyle.

I was forced to grow up really fast, and because of that, I have become more mature. I believe that from suffering comes wisdom. I’m not claiming to be Yoda. I have developed as a human being because of what I have gone through.

From this new sense of maturity and compassion, I have also found ways to serve a purpose greater than myself. During the past seven years, my family and I have participated in many fundraising opportunities to support efforts to cure ALS. We’ve become advocates. We joined the annual Walk to Defeat ALS. We attended the ALS Advocacy Conference in Washington D.C. We have shared our story in videos and newspaper articles. No matter how small a role we play to help eradicate the disease, it feels good to do our part for a cause near and dear to our hearts.

As far as caregiving goes, I spend a lot of my time during the day assisting my dad with his daily needs. I have been taught how to help him maintain as good a quality of life as possible. I’ve learned how to do a daily range of motion exercises, how to use a variety of equipment like braces and breathing machines, and how to assist him in getting into his wheelchair, his bed, and the car. Despite needing help for pretty much everything he does, my dad has shown an incredible amount of resilience in maintaining a positive attitude and sense of humor. His situation undoubtedly takes a toll on his mental state, but he never fails to be the goofball in the room who puts a smile on everyone’s face. His positivity is contagious. I am lifted up when I see him appreciate life so much even under these circumstances. His favorite line to say is, “I have Lou Gehrig’s disease and I wish I could give it back to him.”

Despite everything, the least I can say is that I’m happy. Sometimes, it makes me sad when I think my dad may not be here for the special moments of my life, my college graduation, my wedding, and my firstborn. But then I find comfort knowing that my dad lives inside of me, I am an extension of him and he will forever be in my heart. To other young caregivers who stumble upon my story, know that it gets better. Any sadness you feel will subside. Your uncertainty will teach you important lessons, and your courage in the darkest of times is what will keep you going till the end. Make of that what you will, and good luck as you navigate your own journey.

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Q & A with Kieran
Q: How has your mentor, Wendy, supported you in your writing?

A: During the process of writing my biographical essay, Wendy was very helpful in providing me with the basic information for how I needed to go about writing. I appreciated how she didn’t impose her ideas on me, and allowed me to really be creative before proofreading and making suggestions. She gave me some important talking points to write about, but for the most part she allowed me to write what I wanted. Wendy really allowed me to express myself on my own, and only recommended changes that enhanced my story.

When I was partnered with Wendy, I felt a great relief knowing that someone would guide me through the writing process. I knew she was an expert, and from the start I had a lot of confidence that she would help me to convey my message effectively.

Q: What is the hardest part of being a young caregiver?

A: I wanted to share my story through ALSO US because I know that there are many young caregivers out there who really need something to relate to, or someone to tell them that they are not alone in their struggles. One of the hardest parts of being a young caregiver is the feeling that you have it worse than everyone else. I hope that after reading my story, other young caregivers can find comfort in knowing that there are other people who face the same problems as them. I want them to have the attitude that if I can get through this difficult situation, they can too.

Q: Do you have a favorite story about your dad?

A: My favorite story of my dad is when he stepped in to be substitute coach for our championship soccer game. He really motivated the team and helped us to be confident and have fun. I went on to score seven goals in that game, and I think it’s because my dad being the coach really gave me the motivation and incentive to do my best.

Q: How have you kept perspective throughout this experience?

A: My advice for other teens and young adults impacted by ALS is to really focus on the positive aspects of life. Learn to appreciate the little things and try to stray away from negativity as much as possible. Dwelling on things that make you happy will help you to cope with the emotional strain of being impacted by someone with ALS.