#Alsnakedtruth

There is a movement on Facebook right now to raise awareness of ALS, using intimate and vulnerable photos of patients and caregivers to get your attention.

As the hashtag implies, the pictures are Naked. So here we go…

As much as I’d love to give you all a pinup calendar of in my birthday suit, I will refrain, spare you the manliness and hulking biceps, save

you a fortune in eye bleach, and address the underlying issues.  (If you want the pinup calendar, donate $20 to Archbishop Vigano and SHAME ON YOU!)

This movement was shared to me via Contagious for a Cure, underscoring that if ALS was contagious, they would fund more research. and have a cure.  For real, there is more money in Susan G Komen society for breast cancer, including partnerships with the NFL, and I have a terminal illness way more complex than breast cancer.   Not to knock breast cancer, but there are a ton of dollars there already!

Ok, so this movement uses pictures of patients, and most of them seem to be quite sad.  Talking about bed sores, ventilators, allergies, paralysis, etc.  Very depressing and sad stuff, the very real painful side of ALS.  From this perspective, I agree that people need to see the reality, to not have a sanitized view of illness that we all have.  I fully support the efforts to bring attention.  I will join in a different way.

What this movement doesn’t address is the mental side of ALS.  Yeah, the hidden side.  This ties in to my assisted suicide post from before.  To actively choose to end the life of someone, because it is a mercy on their suffering, it does NOT address the mental side.  So, from someone who is in the middle of ALS, here’s my take on #alsnakedtruth.

Maybe I am delusional, I don’t care.  I have my share of crippling depression, when I feel and think how much better my family would be without having to accommodate my illness.  I think of going to live in assisted living, or even worse, just giving up.  Why should my children suffer, watching me slowly deteriorate?  Why should Mel have to go through it?  Let me die and ease the pain.  Wow, sounds like I want to kill myself, doesn’t it?  Claire Wineland had a Ted talk where she addressed how much being sick sucks.  It sucks!  Being terminal is terrifying, how can we deal? Why is there suffering!?!?!?

I already answered that, in the problem of pain.

I was recently told by a friend who’s husband also has ALS, that she hoped I was not giving up.  It brought up many interesting thoughts and feelings.  And ties now directly in to the Showboys hashtag.

You see, I’m dying.  The end.  The only hope that I have for this life with this disease is that I gave a chance for the research to save the next person’s life.  Otherwise, I’m fighting against the inevitable.  Nothing is “written” death comes to everyone.  There is no survival ratio for life, as much as we fear death.  That means either life has meaning and purpose in itself, or none of it matters.

Ok, so how does this tie in to naked pictures?  Life.  If I focus on all that is sad, or painful, or burdensome, then I devalue the life that I have.  I take away that which is good and replace it with a selfish focus on my own problems, disregarding others, and making sure I live the mantra of “life sucks, then you die”.  But, there is another side.

So, here’s my #alsnakedtruth.  I am loved.  I am held up by my family, friends, neighbors, coworkers, Reader-land, All Saints, the Malta family, Alstdi, ALSA, the stranger at Disney who is praying for me, the bishop in Kazakhstan who is praying for me, and on and on!  Sickness sucks, but the kindness of a coworker sending a note to say Hi, the hug of a child, the conversation with a neighbor, even Facebook discussions with people, does that suck?  No, it is beautiful.  You can’t realize how much the simple things show love unless you stop focusing on yourself and the negative.

My #alsnakedtruth is Jack Z building the most beautiful wheelchair, is Luke sitting with me, is my Jack getting into cars, my Grace and Kate dancing, Mel being beautiful and what makes this family tick and stay together.  It’s getting out when I can, listening to others and not talking, enjoying things that are beautiful, true, and good.  Including beer, the best in the world.  Yeah, there will be bedsores, and pain and depression, but also great joy.  So I want to share that part of ALS.  I hope others will too!

And here’s my pic…