This December, I’ll honor those who’ve passed and share their gifts
They taught me that illness doesn't preclude a rich, full life
Every December, I perform a painful yet cathartic ritual: I find a quiet time free of intrusions and, with a glass of killer eggnog, sit down to listen to the musical “Les Misérables.”
While doing so, I’ll recall events that occurred more than 30 years ago, which brings on the tears. And they don’t stop, even after the musical’s final song.
Toward the end of the show, the character Marius sings “Empty Chairs at Empty Tables,” with lyrics by Alain Boublil and Herbert Kretzmer. From the first time I heard the song, its words have always brought painful memories to the surface that I’ll carry with me as long as I live:
“There’s a grief that can’t be spoken
There’s a pain goes on and on
Empty chairs at empty tables
Now my friends are dead and gone.”
You’re probably wondering what this has to do with the myasthenia gravis journey I embarked upon over three years ago. Let me explain.
Let your guard down
Associated Ministries lists 18 religious holidays that are celebrated in December. It’s a diverse list ranging from Wicca-neopagan celebrations of Yule and the winter solstice to Hanukkah and Christmas. Today, some of these holidays entail more than religious observance. Exchanging gifts with family and friends adds a social element to them.
We make gift lists to express our love and appreciation. Knowing what will please or excite the people on our list is usually easy. But every year, there are a few people we just can’t find the right gift for. My difficult list always includes my friends Joe, Ronnie, Bobby, Jim, Harry, and Eddie. I’ve never known what to give them. But this year, I finally found the perfect gift: I’ll honor them by sharing how they made me a better man and showed me that illness and disease don’t preclude a rich, full life.
Their lives were cut short by AIDS. I sat with them as they closed their eyes one final time. Until this year, I’d thought that they’d taken with them the gifts of kindness, loyalty, compassion, and humor that they brought to my life. This year, however, as I listened to “Empty Chairs at Empty Tables,” it dawned on me that those gifts have never disappeared.
My friends left those of us with chronic illness six precepts we can use on our journeys:
- Find out as much as possible about your disease. That’ll help you make decisions about your care.
- Don’t accept something just because it comes from an expert. Even well-intentioned experts can be wrong.
- Become involved with efforts to find a cure for your disease. That will empower you and help to ease any sense of victimhood.
- Let your guard down. Allow others to help you on this difficult journey. It’s impossible to go it alone.
- Show compassion to everyone who comes your way and extend to yourself gentle expressions of love. Some days compassion and love will be the only things that prevent you from giving up.
- Never give up. Fight to your last breath. There’s nobility in this effort that cannot be surpassed.
Dec. 1 was World AIDS Day. Every year, medical professionals join other specialists to work together to debunk the myths that still surround HIV and AIDS and replace them with facts and scientific evidence. In December, they highlight the importance of regular testing, especially for high-risk populations. These are important efforts.
Also important is the remembrance of those whose lives were cut short by the disease, as well as the wounded caregivers and loved ones they left behind.
My words are an attempt to reflect the lives of six men and the lessons they taught us. It’s my Christmas gift to them. While it’ll never disappear entirely, my pain has lessened. I’ll still cry whenever I listen to “Empty Chairs at Empty Tables,” though. Marius’ words will always be my own:
“Oh, my friends, my friends forgive me
That I live and you are gone
There’s a grief that can’t be spoken
There’s a pain goes on and on.”
Note: Myasthenia Gravis News 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 Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.