Jordan Jhaveri is part of a family living with ALS. She was eleven when her dad, Akhil, was diagnosed in 2011. Here she gives her sixteen-year-old perspective that was recently posted on her dad’s blog recently.
As my dad’s health declines it’s gotten a lot harder to “keep on keepin’ on.” I’ve decided to share my perspective so that maybe other people can know they are not alone in their battles.
No one is truly “put together.” No one actually has everything “under control.” I am convinced that life is a big card game in which it is part chance, part strategy and planning, and we make up all the rules as we go. Even when someone seems to be completely untroubled, there is no way to know what happens behind closed doors.
The son of an art educator, Konnor (@KonnorSchmaltz) lost his mom to ALS a year ago this July. She fought until the very end, and through her family found strength to last as long as she could have. There isn’t a day that goes by where he isn’t reminded of her and will forever cherish the moments they shared together.
“I consider myself the luckiest man in the world …”
Whether recited by fans of America’s Pastime or by Yankees followers, by those who look to it for strength fighting this horrendous disease now or by loved ones of those they’ve lost – the weight these words carry is unfathomable.
But, why? Why would a man who had everything taken away so quickly be so…positive? Was he referring to the four home runs he hit in a single game? Maybe it had something to do with his Triple Crown win in 1934. Did The Iron Horse and future Hall of Famer not understand what most of us here know would happen to him as time progressed?
My name is Denise Hatfield, and I have been married almost 39 years to the love of my life. We share two beautiful sons, and two amazing grandsons. Rick and I are each others rock, and when he was diagnosed with ALS, my world turned upside down. For 39 years he has been by my side. He has always provided for me. I can’t imagine life without him in it. We do everything together and I will fight this battle to the end and then some. Hoping in his lifetime and in others, I can make a difference.
My husband is a mechanic for big rigs. In January of 2015 he started noticing his hands getting weaker at work. By June he was dropping things.
We took him to the doctor thinking it was maybe carpal tunnel, but I noticed the muscle mass loss in him and the difference in his speech. So we went to a neurologist. He was diagnosed with ALS early, but progressed fast. By October he was out of work.
For six years, he had been building a ’57 Chevy from the frame up. It had been his ultimate dream since he was a kid. So after being off work he decided he had to get his car finished. He worked as much as he could, but got weaker by the day. Our two sons helped around the house, when not working to help him finish this project. We finally sent the car out for a paint job. My husband was still driving but getting weaker every day.
Craig Bower is the son of the late Clarence Bower, who is the father in this story. Craig wrote this piece “in hopes it may inspire others” and dedicates it to his father’s memory.
Stories of strength, survival, success and failure. Stories of “overcoming the odds” after a life-altering (insert horrible disease name here) medical diagnosis.
I have nothing against those stories. In fact, I’m continually amazed and inspired by them. They make me feel good and give me hope, which I think is why I read them in the first place. Most of the stories seem to summarize an amazing person that became a voice and advocate for their disease. They organized, researched, educated, shared—and most importantly, fought—until the very end leaving me (and others) amazed and inspired.
But some stories are amazing and inspiring for other reasons.
Before being diagnosed with ALS at age 28, Rachel Doboga loved her job teaching 5th grade English. Now, she advocates for a cure for ALS and write stories on her blog, “How I Live Now: Life With ALS.” Through her writing, she hopes to increase ALS awareness and create a community for other people with ALS and their loved ones.
My parents and I live very far apart, but we visit as often as possible. Earlier in my disease, our reunions were more normal: catching up, visiting favorite restaurants, hanging out at the bookstore. We did the things we have always done when we got together. Now, one year after being diagnosed and two years into this disease, it’s getting harder to forget I am sick.
Tessa Shull is a personal assistant to two toddlers, a wife, and a social media specialist/writer who resides in the heart of America, Kansas City. Her mother was diagnosed with ALS in 2015, and since then, it’s been important to find a way to continue making a difference, for both her and her mother, despite the disease. You can check out more of Tessa’s writing on her family and lifestyle blog, homemadeexperience.com.
I put it off as long as I could. I buried myself in friends’ lives, picked at frivolous problems and attended an excessive amount of events. I traveled for three weeks straight. I caught up on every T.V. show I’ve ever enjoyed. I cleaned and organized my entire home. And I sorted through every piece of clothing my children own, which took a full three days in and of itself.
Mallory Marrs is a freshman at Hanover College, located in southern Indiana. She is very involved in activities such as Dance Marathon, cross country, and she is the Editor in Chief for the Odyssey Online. She wrote this article in memory of her uncle, who passed away in 2006 after his battle with ALS, and is happy she could honor him in this way.
I decided to do a quick visit home overnight the other day, and I was packing up last-minute items. I was looking over my dresser to make sure I didn’t miss anything, then something red caught my eye. It took me a minute to realize what it was. It was my ALS Association bracelet, with the phrase “never give up” on it. I had to stop for a minute and hold it. I couldn’t think of the last time I wore it or seen it, but it popped up on my dresser as I was packing up to leave for school for a few weeks.
I am a big believer in signs; how objects are placed into our lives at a certain time for a certain reason. I fully believe this bracelet with my motto was placed on my dresser at this time for a reason. The last few weeks of college have been a challenge. I was faced with unexpected disappointments, stress from keeping up with new schoolwork, and the pressure to live up to expectations. While usually, I thrive under these circumstances, the past few weeks had not lived up to my personal expectations and had me feeling like my usual self.