Oh, you mean Lou Gehrig’s Disease…
Even though nothing I can say will do this post justice. There are no words to describe the range of emotions the impact of watching someone with ALS has put me through.
Even though there are no thoughts that can adequately convey how deeply ALS has affected me.
You see, if you had said those 3 little letters – A L S – to me last October, I would have said, “Oh, you mean Lou Gehrig’s Disease?” And the extent of my knowledge would have been that it was a disease made “famous” by a baseball player.
It’s six months later and I can tell you that ALS stands for Amyotrophic lateral sclerosis, although I still have to Google it to spell or say the full name correctly.
I can tell you while it slowly killing you, you lose things like muscle function and the ability to breath and swallow. But, it doesn’t take your mind, so you know every debilitating symptom and regression that is happening to you. The reality is that it has no cure and generally gives a person a life expectancy of 2-5 years after diagnosis.
I learned more about ALS through the Pittsburgh Foundation’s work with Neil and Suzanne Alexander who recently launched Live Like Lou, inspired by the grace and positivity with which Lou Gehrig faced his ALS diagnosis. Neil has ALS. The more I read, the harder it was to imagine handling any disease like this with grace. It was devastating to learn “Most patients die of suffocation or other respiratory failure.”
It’s a weird twist of fate that has happened, that in a six month span, I can now name six people diagnosed or recently passed who have less than six degrees of separation to me. One was a neighbor and ‘church lady’ I’d known for years. Two are parents of friends I’ve known since high school. In a disease that has roughly 5,500 people diagnosed per year and only about 20- 30,000 patients living in the US at any given time.
One of those people is the mother of the person I hold nearest and dearest to my heart and whom I have known for over 20 years. Christopher’s mom is one of the kindest, most loving, honest, and immeasurably wonderful people I know. And, much sooner than we’d ever want, she’ll be taken away from us. Things we take for granted, she will be unable to do.
It’s one thing to read about the progression of ALS. It is quite another to experience it first hand. To visibly see, over very short spans of time, the loss of motor skills, speech, and breathing. All while viewing a person who is still caring and happy, and who smiles as she shares funny stories about life and shows great pride in your accomplishments. It’s hard sometimes to hold back the tears that threaten to overflow, but you do, so you can enjoy the happy memory you are creating together in this moment.
But in those same moments, when you realize that the person you love can no longer lift their arms to hug you, you’re aware that the goodness of their heart still lifts your soul and their laughter brings you joy. You appreciate every word they struggle to speak clearly. Those words give emphasis and clarity to what is important in life. You stop complaining, berating, or self-deprecating. Instead, you recall fond and happy memories, give voice to your appreciation, love, and pride in those around you, and share your wisdom. You find that the little things bring such immense pleasure and you hold on to every moment. You begin to be present in every moment. That is a true gift. And somehow, that gives you strength.
I now understand why people who have the diagnosis and their families become so invested in advocating and researching and generally helping others who are touched by this disease. There is no cure and there is little motivation for pharmaceuticals to invest in researching one. People die too fast, which means there aren’t enough people with it at any given time to drive the drug companies to find meds that could work. So families become the advocates and donors, storytellers and researchers.
That’s where you find real strength – patients are willing to share their stories and document the progression of the disease for future work on treatments and cures; families are willing to spend time sharing hope and resources. There is strength in numbers. There is strength in working together for a world without ALS. Even the weakest of ALS patients has the strength to light a spark of hope in us all.
That spark of hope, the hours of research, and love for a mother has inspired a site called ALS Connections. Christopher’s goal is to put tons of information about ALS together in one place so that people can make connections from research, videos, and other sites; draw conclusions; expand on technologies that might make life with ALS a little better and easier; and find others who give strength to and grace in a tough situation. The site is still being developed, but it has been rolled out and is accepting video submissions.
It’s my small way to help by finding information to share with ALS Connections and in participating in the Pittsburgh Walk for ALS, and sharing this with you so that one day we might “create a world without ALS.”
And, I can ask you to help so that I am using all my strength.
Simply Put – In the 60 years since Lou Gehrig’s death, there have been no major advances, treatments, or cures for ALS. Can we hit a home run and change that before another 60 goes by?
There are many ways to remember and signify the anniversary of the sordid attack of 9/11. Joe Wos, of the Toonseum in Pittsburgh, has utilized his passion for comic arts to present a display of cartoon features that ran in response to the attacks. By the looks of the Toonseum press release this has been quite an organizational effort.
I, for one, am intrigued and already find it bringing the “never forget” thought to the forefront of my mind. Read the Toonseum media release here to find out more and learn about the panel discussion in connection with the event.
945 Liberty Avenue
Pittsburgh PA 15222
Too Soon?: A Cartoon Retrospective of 9/11
An exhibition featuring comic strip and editorial cartoon reflections on and responses to 9/11.
Sunday, Sept. 11, 2011, marks the 10th anniversary of one of the darkest days in American history. It was also marks a day of remarkable bravery and courage. In honor of the occasion, the major comic syndicates have rallied their cartoonists to dedicate their strips on that day to those who lost their lives in the terrorist attacks.
All the participating comic strips will also be appearing in the September 11th, 2011 Sunday comics pages across the country. These iconic strips, all illustrating the Remembering 9/11 theme, demonstrate a wide range of response from patriotic to deeply emotional.
With the help of King Features, The ToonSeum in Pittsburgh, along with the Newseum in Washington, D.C., the Museum of Comic and Cartoon Art in New York City, and the Cartoon Art Museum in San Francisco will host special exhibits featuring the cartoonists’ commemorative works. Each museum will have a different selection of 15 original strips from Beetle Bailey to Mutts.
The ToonSeum will expand upon this exhibit by displaying editorial cartoons that ran shortly after 9-11. These powerful and sometimes controversial pieces were created by editorial cartoonists from the three areas hit by the terrorists: New York, Washington, D.C. and Pittsburgh (Shanksville, flight 93). Garry Trudeau of Doonesbury fame and alternative cartoonist Ted Rall represent New York, Matt Wuerker of Politico represents Washington, D.C. and Pittsburgh Post-Gazette cartoonist Rob Rogers represents the Pittsburgh area.
The exhibition will run from September 10th-September 25th.
As part of the exhibition the ToonSeum will also present a panel discussion on September 9th, entitled “Too Soon?: Humor, Art and Media in a Post-9/11 World.”
The panel will discuss the aftermath of the 9/11 terrorist attacks and the effect it had on humor, art and the media. Everyone from artists to comedians to cartoonists struggled to find their way in the days and weeks following the devastating and tragic events of 9/11. Was it OK to laugh? Was it OK to criticize those in power? Or was it too soon?
The panelists include former Warhol director Tom Sokolowski, WDVE Morning Show host Jimmy Krenn, nationally-syndicated alternative cartoonist Ted Rall, and nationally-syndicated Post-Gazette editorial cartoonist Rob Rogers.
The panel will be moderated by Chris Potter, editor of The Pittsburgh City Paper
Panel will take place September 9th, 7pm at Bricolage Theater.
Event is free to attend by donations are welcome and reservations are encouraged. Tickets at www.toosoon.eventbrite.com
The Exhibition and panel are made possible through the generous support of the R K Mellon Foundation.
September 9th, 2011, 7 PM
937 Liberty Ave
Pittsburgh, PA 15222
September 9th, 2011, 5pm-7pm
945 Liberty Avenue
Pittsburgh, PA 15222
Simply Put- The Toonseum, once again, presents us with a unique way to blend life, memories and comic art.