Paul's Heart

The Benefits Of A Challenge

Hodgkin’s Lymphoma is considered a rare form of blood cancer. I know this, because I battled HD over 24 years ago. My doctor back then, I will call him Dr. S., misdiagnosed me as having a common cold. Oops, imagine that mistake. The reality, unless you were being checked for breast cancer or skin cancer, many doctors had no idea what to look for.

The upside was that for what little I knew about HD, the cure rate was considered high. It was not 100% curable, but a great cure rate nonetheless. But unlike breast cancer, lung cancer, and even other major ailment such as cardiac disease, diabetes, Hodgkin’s Lymphoma did not, and to this day does not get a lot of publicity for fundraising such as the prior mentioned ailments.

I recall seeing one commercial, during late night television, which featured a young female, a common demographic for a Hodgkin’s diagnosis, lying in a hospital bed in the middle of Manhattan. Of course, as is common in New York City, people just go about their business, not paying any attention to the sick young women on a hospital bed in the unusual location of a NYC street, or why she was there. As goes the knowledge of people battling Hodgkin’s Lymphoma.

And unlike the attention to a particular cancer paid, when celebrities such as Michael Douglass or Cheryl Crow, or even Lance Armstrong (sorry, I know, but performance enhancing issues or not, he did battle a serious cancer), there have been plenty of celebrities who have battled Hodgkin’s Lymphoma. And as each one is publicized, I hope that one celebrity becomes the one that finally will be the one who can bring Hodgkin’s to the forefront for a cure, the first cancer with a 100% cure rate. The most noticeable celebrity right now facing Hodgkin’s Lymphoma is Def Leppard guitarist Vivian Campbell.

Mr. Campbell is finishing up his second treatment regimen, the first treatment only putting him into remission temporarily. He has continued to play and tour with his bandmates. As someone who worked through his HD treatments, I can truly appreciate his efforts to continue to tour. But here is an example of someone who should clearly have the money and resources available to get the best treatment for a curable cancer, and yet, he has struggled. Perhaps with a little more research, the better and more effective cure can be found. But that costs money. To get money, you have to bring attention to the cause.

Which is why I have to admire the ALS Ice Bucket Challenge. I was challenged today by another local author, Stephen Kaufman to complete this challenge, and issue a challenge of my own to other individuals. The task, dump a bucket of ice cold water over my head, or donate $100 to ALS. This challenge has received mixed reviews as many cynics felt that doing this task was not going to do anything for the benefit for ALS research. Many felt that all the task was doing was giving people their Youtube fame on Facebook, and not much would be done for ALS research or patients.

But the truth is, people have not only been doing the challenge, but also making the donations, and many making more than just the $100 donation. Celebrities are also joining in the challenge from rock stars to athletes to politicians, to actors, many making enormous donations to fight ALS. Even ALS patients themselves are getting into the act.

As personal as my fight with the rare blood cancer, Hodgkin’s Lymphoma, my fight with ALS became personal several years ago when a co-worker was diagnosed with ALS. Ron would be the first person I would encounter, unfortunately not the last. Two years later, my brother-in-law Mike would be diagnosed following an unusual slurred speech development. If only our lighthearted concerns of being too much Jack Daniels would have been the case, unfortunately it was Lou Gehrig’s Disease.

With this being my brother-in-law, someone I was very close to, almost as a brother, I saw first hand the Hell that an ALS patient goes through as their body slowly destroys itself. One of the worst parts of the disease is that the mind is relatively in a state of complete awareness as to what is going on, but as the body slowly loses its ability to eat, swallow, speak, grasp, stand, the mind can do nothing about it. Even more frustrating according to Mike, was the inability for him to communicate. While technology would provide an avenue for him to speak, an app for his Ipad, that when he either typed words or wrote words with his finger tip, the Ipad would vocalize for him, this was not the same as being able to have just a regular vocal conversation.

Over time, the ALS became more evident in Mike, but it did not stop him from trying to do what he enjoyed. He continued to work through most of his illness, his employer accommodating him pretty much up until the end. He rode his motor cycle and finally made a pilgrimage to Ireland, a life long dream of his. At one point, he joined others, in an attempt to draw attention to ALS, by travelling to the Jersey shore in the middle of Winter, for a “polar plunge” into the Atlantic (the original version of the Ice Bucket Challenge).

It will be two years next month that Mike lost his battle. So today, I accepted my challenge, nominated four others to complete the challenge. And as many others, I will also send a check into the ALS Foundation as I have done in the past, in Mike’s memory.

It was noted via various media resources that last year alone, only $1.7 million had been raised for ALS research through various fundraisers. But in just the past two months, over $25 million has been raised through this Ice Bucket Challenge. Awareness for a rare and fatal disease has been made. Funds for research have been earned.

As someone who has battled another rare disease, I appreciate the efforts this cause has put out, and earned. I hope someone, every disease, regardless of severity, can find its own “ice bucket challenge” to help their cause.