Wednesday, February 25, 2009

Reader's comment and my response...

One of this blog's readers, and a FB friend sent me the following post. She sent it to me via FB because for some reason the "comment" section was not working when she tried to leave a blog comment. My response to her comments follow.

Here is her post:

----Begin Note---
Hi Bill- This Blog is beautiful. You are such a wonderful writer but what strikes me the most is what an incredible husband you are.
One of the worst problems, as if the diagnosis of ALS isn't devastating enough, is that people do not have the love and support of their family, even close to what you so eloquently express. I wish I could secretly e-mail this blog to quite a few spouses. I am so focused on helping in any way I can, because I can. I find the courage and determination of people with ALS overwhelming, but I would love to find a way to encourage healthy people who aren't dealing with such a horrible disease to get on board and to start helping.
Yes- a lot of this has to do with raising money, but the more people who find out just what happens with this disease, may become as focused and committed as I am and their dollars will help find the cure. As we have seen with so many diseases, like HIV. In our lifetime we have seen that death sentence turn into a disease with hope. We need to be like Breast Cancer and to also have ALS Survivors. But it's crazy to me, that people battling this disease are almost alone, showing up on Capitol Hill, spearheading fund raisers and yes, writing blogs. How do we harness the healthy people who CAN,to join this fight? Thanks for sharing. I'm sure some people have bumped into it who have never heard of ALS before and maybe they'll become involved after reading your stories.
-----End Note-----

First of all, thank you for that first sentence, I am blushing.

Now to the serious business of this great note. I have a pretty intense opinion about this so hunker down, put on your metal underwear or Teflon jacket, because I'm about to go off on this topic, and remember I do this in the name of Love.

People don't care about something like this until they FEAR IT. Right now ALS - Lou Gehrig's Disease, Motor Neuron Disease...whatever you call it is a phantom to the general public. I know because 2 years ago, I WAS the general public. I had no clue as to what ALS was or what it did to people. I didn't know that if you get it, they tell you they are "sorry, but that you are going to die, probably within 2 - 5 years and there is NOTHING they, you or anyone else can do about it except maybe make it a little more "comfortable" for you to die."

Back in the late 80's hardly anyone that was heterosexual cared about AIDS because it was a gay person's disease. When did the public start caring? When the facts came out: This disease is sexually transmitted between men and women and women and women too, and Oh, by the way, not all men are 100% gay, not all women toe the line either...hmm. If you were sexually active and understand how viruses spread and could do a bit of math (or read any of the columns of the day that did the math for you) then you did learn to fear it.

Oh, and yea...if you get in a car accident or have to have a blood transfusion for any reason, um yea, you could get this from that too. And, you will die if you do.

People started to pay attention, given the fact that they could realistically die and all. Money flew at the problem. Scientists figured out at least how to prevent an HIV infection, caught early, from becoming a death sentence of full blown AIDS. I have friends that are infected living completely normal lives except for the drugs they have to take to keep the infection at bay.

Here's the problem...ALS is, as far as we know, not infectious. Only about 5% of it is hereditary, but guess what...people that have family that died of ALS tend to care about this, and for good reason. If it IS in your family, there's a decent chance that you will die from it. That being said, no one knows what "causes" it if you don't have the gene. H had emergency surgery with multiple blood transfusions about 5 months before symptoms started appearing though. That might scare people a bit...they don't' screen for anything like the ALS gene or things like Lyme disease that may "cause" ALS or at least mimic it. They don't screen for a lot of things that "may cause" it.

H didn't do anything wrong. One day she woke up and couldn't clip her ski boots. That's how it started. 95 or of 100 people that get this disease will never know why they got it. YOU COULD WAKE UP TOMORROW AND NOT BE ABLE TO CLIP YOUR SKI BOOTS, or zip your kids jacket, or turn the keys in your car's ignition on a cold day, or fumble on the last button of your shirt.

People... in case you didn't know this or figure it out from the post above...there is no cure, there is no treatment, there are no "survivors" of this disease to run or walk anywhere for a cure. If you are diagnosed with ALS, you have about a 98% chance that you will be dead within 5 years. Most die within 3 years. A few live for 10 or more years. A FEW. If you are one of them, you probably can't move anything but your eyes, are on a ventilator and have practically unlimited financial resources, holding out hope that someone will figure this out before you have to unplug your vent. These are the stark realities of this disease today...February 25, 2009.

And in reference to the note above related to spouses or family of people with ALS that are not supportive...PLEASE, step up. I, of all people, know this is hard, but hang in there. Do NOT let them down. Do NOT leave them alone or at the mercy of someone else. Do everything you can possibly do to take care of them. Get help too, reach out beyond your comfort zone if you have to, but DON'T LEAVE. It is not fair, it is not right, and you will regret it forever. Please understand that whatever you are going through, they have it 10X worse than you do.

OK, that is out of me, thank God. Once again, I hope I didn't offend you. I seem to be saying that a lot more lately, which means I'm probably on the right track.

If you want to help find a cure, you can contribute on the link below or to your local ALS support group, or any number of places.


Sunday, February 22, 2009

From the Oscars to...anything but...

Well, everyone is blogging about the Oscars tonight, so I figure I better chime in. I guess, from my perspective I am somewhat dismayed at the Worldwide fascination with the Red Carpet and the associated glitz and glamour of it all.

Don't get me wrong. On a lot of levels I respect what actors and actresses do very much. They are true artists in so many ways and the passion that many of them bring to their craft should be the envy of anyone aspiring excel in their work lives. Their work can make you laugh, cry or even carry you away for a time, allowing you to get wrapped up in a different world, just as most good art can. The fact that many actors can feign passion so well is also an interesting irony that I see in the craft, but I don't have a bone to pick with that either, I think it's amazing. It doesn't surprise me that sometimes it transposes to real relationships and ends others, a la "Brangelina." Didn't they get together on the set of Mr. and Mrs. Smith? (...pulls hair dramatically near both ears...shrieks loudly, "Why why why do I know that?")

It is the over the top commercialization and fascination with celebrity by us humans has that dismays me. This is not new by any stretch, we have often been amorous of popular celebs since at least biblical times. Actors and performers were "Rock Stars" in Egypt in the days of the Pharaohs; Gladiators were practically Gods in Rome and certainly film and TV has had it's share of beautiful train wrecks over the years and we have continually been glutinous consumers of it all. Now, it seems to me that the speed at which everything, especially information, moves in this day and age has accelerated this fascination not with talent, but with fame, and I don't think it is a healthy sociological phenomenon.

I have no issue with Brad Pitt or Angelina's "Brangelina" that I despise. And, you know what? I think they despise it too.

OK, what does this have to do with anything? I certainly am no celebrity blogger with any cred. I suppose it has to do with the fact that when things get "real" like they have in our house, that the superficial things fall away from you. I honestly could not care less who is wearing Valentino tonight (even though I hate to admit that I now know he's the "luckiest" designer for actresses wearing his stuff at the Oscars), but I do care that I see our girls captivated by the whole scene and wonder: "If they aspired to be there, winning an Oscar, would it be because they craved fame or because they strived to be the best at their craft?" I certainly will try to emphasize importance of the latter as the days go by. I'll add this: "Care about things that are worthy of your attention, because your attention makes them stronger in some way."

I bet that a lot more people know how many kids Brangelina have adopted than know even within 10,000 how many people die from ALS every year. is it 10,000, 20,000, 100,000? Any idea? The answer is: Trick question: not that many. It is estimated that 4000 - 5000 new cases are diagnosed every year in the USA. Worldwide, an estimated 100,000 people's clocks are ticking as we speak. Statistically speaking, this is a miniscule percentage of the population. 1 or 2 people for every 100,000 will get this horrible disease. Not a very "exciting" number if you are a drug company or research facility. Here's a statistic that might surprise you. Out of that 100,000 or so, how many will die from it in one way or another? Pretty much all of them, most within 3 years.

This ends my Oscar rant. I'm sure you are glad. I hope I did not offend you.

I continue to hear from people I do not know. I am touched by this. Some people share resources that they think might help...emotionally, medically, metaphysically, whatever. It's all good because it is all coming from a caring place. I sometimes wonder "why do these people care about me, about us, or about our situation?" They don't know me or us, so why? What is their agenda?

Well, mostly, it is a human agenda. It is this agenda that gives me hope and helps me keep my faith in mankind and the natural, core, essential beings that we are. People are really trying to help us. I am not foolish enough to think that everyone means well, I've learned that lesson the hard way many times. I am faithful enough in people to listen, learn, and hopefully not make the same mistake more than once or twice. ;-) I can't blame myself for trying to believe though, and neither should you, because no one can take anything away from you that really matters. Remember that.

I am blessed to KNOW so many AWESOME people, and by going through this, I know even more now about people I have known for a very long time. You see my heart bleeding on the sleeves of this blog with every post and many of you have shown your heart to me as well, and I thank you for that. Your hearts, bloody as they may be, are beautiful. Thank you for sharing.

I will reach out to you when the time is right, I promise. I will tap your energy when I need it, I promise. I will also pray for you when you need it, I promise. The greatest thing about Love is that the well does not run dry no matter how much you give. There is always more if you want it. You drop the bucket back down and it comes up bursting every time in colors so bright, so luminous and amazing that it is amost too beautiful to look at them.

The paradox is that You can't keep the love you wind up from that well, you have to give it away. The good news is that You can accept the love that is sent your direction and it is yours to keep forever. It is, without a doubt the most awesome thing, the most awesome gift that we, as humans, can give and this eternal spring is the most awesome gift that we humans have been given. Give it...accept it...give it back...pass it on.
Peace (& Love, of course)

PS, the only word left in yellow after my spellcheck is "Brangelina." Apparently, this word has not found it's way into Google's Blogger dictionary. I find some solace in that for the time being.