Dear readers,
Welcome back to our newest edition of The Comenian. I write this editor’s letter with a heavy heart, as actor and amyotrophic lateral sclerosis (ALS) advocate Eric Dane passed away on Feb. 19.
My father passed away from ALS in 2020, and I have seen firsthand how difficult this disease is to manage, both for the person diagnosed and their family around them.
According to the ALS Association, the financial cost for someone diagnosed with ALS is extremely high and increases with disease progression, “ranging from approximately $31,000 in early stages to over $120,000 in late stages, with some estimates exceeding $200,000 annually.”
My father was sick for seven years, but Dane only announced his diagnosis a year ago and passed away at the age of 53. ALS is a progressive neurodegenerative disease that gradually destroys motor neurons, and the timeline varies from case-to-case.
Most individuals die within two to five years after diagnosis, although the course of the illness varies significantly. Some patients survive less than a year, while roughly 20% live longer than five years, about 10% survive beyond a decade, and approximately 5% live more than twenty years. In most cases, death occurs due to respiratory failure as the muscles responsible for breathing weaken.
The cruelty of ALS is not just that it is fatal, but that it forces a person to witness their own physical decline while remaining mentally present. It is not a disease that eats at the brain – only the body, meaning that those diagnosed with ALS are essentially imprisoned in their own body, with a fully functioning brain, until they pass.
When my father was ill, someone had to be home with him all the time in case he coded. Since we could not afford live-in nurses, my mother took on the responsibility of caring for him. She did an amazing job at it, while I drove myself to college tours; my parents were never able to accompany me.
This doesn’t even begin to address the financial toll of ALS – as my mother cared for my father, she could not work, and obviously, my dad could not either. Radicava, one of the first medications that the U.S. Food and Drug Administration has approved for ALS in decades, is extremely expensive without insurance, with annual costs typically ranging between $145,000 and $168,000.
My mother had to call the insurance company every single day for months in order for this prescription to be filled without us paying out of pocket, and this doesn’t include any of the other medical equipment, pills, or edits to our home for accessibility and wheelchair access for which we had to pay out of pocket. This is the burden that caretakers carry every day, all while trying to maintain a stable home life around the diagnosis.
It took my father years to be diagnosed with ALS. Early diagnosis is difficult and is often confused with other diseases, such as Parkinson’s. There is no cure and treatment options are limited. Abd funding for ALS research is at risk with federal funding cuts.
If you take away anything from this letter, it’s that ALS deserves the same recognition, research and support as other diseases. Prior to Dane’s death, he filmed a heart-wrenching interview with Netflix under the series “Famous Last Words,” speaking directly to the public and his two young daughters, knowing it would be published posthumously.
In this interview, he said to his young daughters, “I hope I’ve demonstrated that you can face anything, you can face the end of your days, you can face hell with dignity. Fight, girls, and hold your heads high.”
And this is the most fitting quote I have ever heard someone use to describe the battle with ALS; it’s a fight, and it’s hard as hell, but the determination to keep living under the stress of this disease is a strength I will never understand, yet value forever.
I will always remember my father as he was before the diagnosis, laughing, walking, living freely, not as the disease left him, and I hope everyone does the same for Dane in his memory.
Let this be a reminder that life is short, and you have to enjoy it while you live it. Give your loved ones a hug, and live like today is your last.
In other news, The Comenian is recruiting! If you are interested in writing, editing, photography or running our social media, join us at our meetings every Wednesday at 5:00 pm in Zinzendorf Hall, room 100. For any questions, reach out to me at [email protected].
I would also like to take this opportunity to note an addendum to the Republican Society Article we ran two editions ago, including a response from the Political Science Department at Moravian. A student quoted in the article asserted a claim about bias in the department, and the article did not include a response from the Political Science Department. In the addendum, the department responds.
In addition, one of our editors, Megan Smith, wrote an article about how Moravian is using AI-generated voices to announce names at our graduation ceremony. This is a little blurb from her:
Moravian is using an A.I. speaker at commencement to announce graduates’ names, correcting mispronunciations and streamlining the process. However, the A.I. program has consistently mispronounced names and made the ceremony impersonal. After four years of grueling work to earn our degrees, we deserve human speakers who can relate to us. If you want to see a change, sign the petition here.
Finally, two weeks ago, I was privileged to attend the Lafayette College Jones lecture, where Lin-Manuel Miranda delivered a wonderful speech with some amazing advice. This comes shortly after an opinion article I wrote, “No Cool Speakers at Moravian,” which received some feedback.
Miranda was the most impactful speaker I have ever had the pleasure of witnessing, and I want to emphasize that, unfortunately, this event did not take place at the school I am actually enrolled in. I showed up at the Jones lecture an hour early, and there were at least 50 students already waiting outside the door to be let in. This is the type of star-power speaker that I think our campus not only wants but also deserves.
As always, thank you for reading The Comenian. Try to stay warm in this freezing weather, and remember to take care of yourself with midterms approaching.
Your Editor-in-Chief,
Liz
