ALS – From Wasted Water to Watershed

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I was scrolling through Facebook seeing all these videos of people pouring water on each other and naming people to “the challenge”, except I noticed the “challengers” never explained the challenge.  As Texas endures another serious drought, this seemed like a huge waste of water just to “call someone out”.  I mean… what’s worth increasing drought conditions?  As the challenges went on… it seemed like people used more and more water, not even caring to dump it on grass or gardens. 

I was curious. I kept watching, and even agreed with a post I thought was lamenting the wasted water.  I didn’t know what ALS was and freely admitted my ignorance.  The reply was a clearly irritated, “how hard is it to look up ALS”?   Uhm… not hard at all, but why be cross?  We ARE in a drought, and pouring water out without explaining the challenge seemed extravagant.  I can hear mothers everywhere screaming “turn off the water”!  The more videos I saw, the more of a gimmick it became.

Eventually, the challenge made the local news where I finally learned it was supposed to be to educate people about a disease called ALS, commonly known as Lou Gehrig’s disease and raise money for it.  You either donate OR pour ice on your head to raise awareness.  I’d seen dozens of these videos and no one mentioned ALS, so I had to wonder is this really educating people about ALS?  Are these people affected by ALS?  Donating to ALS?  Remind me again, what is ALS? Even the news focused on ALS donations which hit an unprecedented $50 million as of today. I still didn’t know what it was.

OK, I looked it up.  It means Amyotrophic lateral sclerosis, and it’s a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. 

And then I saw “Uncensored and Sexy” Anthony Carbajal

It starts off rather cheesy.  I almost turned it off.  Then, this handsome, funny man trying to raise awareness for ALS starts talking and through his grief, fear and frustration he tells you about his inheritance.  And ALS became human.  My mind went back to the definition of ALS…  “affects” is not even remotely close to a definition….. “affects”!!!??? 

I seized on my former childhood neighbor’s angry retort.  We clearly missed an opportunity – of him to educate me about ALS – of me to offer kindness.  This definition was hardly a tangible explanation of the human cost of ALS on those afflicted and those supporting them.  I accepted with great sadness my inability to do more than offer words to my former neighbor and I felt his anguish.  My childhood neighbor’s relative had ALS along with 30,000 people in America.  Through Anthony Carbajal I understood the response to my ignorance. My friends’ brother is slowly losing the ability to have his body function properly, there is no cure…. and enduring this devastation, your mind as sharp as ever knows what the body no longer undertakes.  ALS diagnosis forces you to …..  HEY!  Did you watch the video?  All of it? 

It’s beyond definition. From wasted water to a watershed moment I waded through the wasted water becoming grateful for all the goofy videos and hopeful for Mr. Carbajal, James Rudy and my childhood neighbor. 

So please, if you’re taking the challenge, NAME it. Consider a donation so we save the water … and a life.  To those dealing with ALS, please let our ignorance of this disease be an opportunity to share the human story of ALS.  Anthony Carbajal, you are a walking miracle of love; James Rudy…. you’re a brave and witty man; and to my childhood neighbor…thank you for helping me understand the human definition of ALS.   

Classy Ice Bucket Challenge / ALS Donations raise $50 million / James Rudy ALS Survivor

 

Undisclosed Signs

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Undisclosed Signs

Undisclosed Signs

Robin Williams comic genius stunned the world, as did his premature death. If you’re wondering how such a funny, intelligent person who touched so many lives in such a favorable way could be so depressed that he would commit suicide…. you’re not alone. I think anyone who experiences a loved one killing themselves (or attempting to) is left with many unexpected feelings and questions.

Robin Williams had it all yet stayed grounded, he was honest about his struggles and exemplified the best of humanity, and still he is gone. Fame and fortune offer no protection from life’s struggles, and social media gives voice to keyboard cowards who delight in being divisive and judgmental.

As we scratch our heads in disbelief over suicide, or someone who attempts it unsuccessfully, I am reminded of my own brushes with this unmentionable topic and found myself asking questions.

I lost a friend to suicide about 20 years ago, and as a child had a family member who attempted suicide several times. Both experiences left me befuddled and still can make me sad and angry if I think about it too much. It’s a strange combination to experience when contemplating the value of a life.

My second experience was with a young couple who lived separately in the same complex as me about 20 years ago. We met at the pool and often hung out while playing water volleyball. It was a happening place bustling with pool parties and people. “C” (as I’ll call her) and I grew close over time and often visited while her boyfriend “K” played water sports virtually every weekend at the pool.

K was a smart, friendly, handsome guy who always had a kind word for anyone. One day in about my 3rd year living there I was getting the mail and ran into K. I asked how he was, talked about his job search, meeting up at the pool, and he mentioned I wouldn’t be seeing him anymore as he was moving to Austin. It was a friendly chat and I hugged him, said I would miss him alot and asked him to stay in touch. He seemed a little down, but he was out of a job and moving. It was an ordinary conversation you’d have with anyone you are fond of that’s moving and out of work. I remember telling him I’d love to visit once he was settled, and off we went.

About a week later, I was heading to the mailbox again and saw C heading there as well. She didn’t respond when I called her name, her perky disposition was markedly absent. As I got closer, I noticed her normally jet black hair had gone grey in the front, which was odd on my 26 year old friend. I asked where she had been and she still didn’t respond. She was vacantly staring at the ground as she walked toward the mailbox unaware of my presence. I stopped her and said, “Are you ok?” She looked up and slowly replied, “K’s dead” …. followed by the strangest, small noise I’ve ever heard come out of her. The light was gone from her eyes, she was morose and fearful. The walking dead.

She explained how K had shot himself. He’d gone to his church and, at some point, the police arrived to prevent his suicide … as did she. K sat inside talking to them and clutching a tiny piece of paper with C’s name and number written on it. The police found it on him along with detailed plans to kill himself that began over a year ago. She said she thought they had finally made progress when they all heard the shot. She stood there holding the paper covered in his blood stained fingerprints, and shared his plans that detailed how to hide his actions so no one would notice. One line said to tell everyone he was moving so that no one would miss him afterwards…. and suddenly I comprehended my last conversation with K very differently. It was gut wrenching. I know my last words to him were kind and I hugged him and said I’d miss him.

I never saw a hint of depression, but that’s what he wanted. I knew he was looking for a job, but had no idea he’d had to give up his apartment or sell his things or couch surf. I knew he stayed at C’s often and had recently sold his car, … but suicide? Was he so convinced it was time to go that even kind words went unnoticed?

C then explained that K’s family blamed her for his suicide despite the police finding a detailed list of K’s plans that no one was aware of. He’d had another friend who visited often for long hours, and it seemed like he might break things off, so any secretive behavior was likely cheating, not a plan for death. I was baffled at how happy he appeared and distressed that I had detected nothing. Now C was vulnerable to suicide and someone blaming her could push her over the edge. K’s family continued to call with questions she could hardly answer and accusations she did not deserve. Then, someone killed her cat and later her apartment was ransacked.

I pictured him clinging to hope staring at her number, talking to police while sitting in a church. The causticness of him reaching for God in such desperation while concealing his true intentions from everyone did not escape me. No one could believe it, but why blame her? I visited regularly to offer comfort, but her perky personality was forever altered.

My first experience with suicide was quite different. I was a child and indirect witness to a relative who tried to commit suicide several times. I can’t say that I really knew what was going on, just that we all knew something was wrong. As a teen, I was asked to come help after an attempt and was ill prepared. My words were poorly stated. I was scared and frustrated, and found myself angry. She was so sad she could hardly speak or look up, she seemed embarrassed to be in this condition. I felt responsible and helpless. I imagine C felt the same. And even though this person didn’t succeed (thankfully), their struggle was palpable. Once that moment passed, it was never discussed. If they sought or got help outside of a prescription, it was never known. Everyone behaved as if nothing happened…..but something did happen. How does a suicidal person move on or “act”? I could hardly move on myself and I was on the sidelines!

In both cases, both persons convinced everyone things were fine when they were not. Was it easier to pretend? Whatever they were dealing with was undoubtedly overwhelming. How does one ask for help or offer it? If they are acting, how does one intervene? Will responsibilities pull you into or out of depression? Greater minds than mine may know, but I do not.

These experiences are a part of why I firmly believe in having a respectful dialogue about all issues. I don’t like leaving things unsaid or walking around a topic/person on eggshells. You don’t need to rip the bandage off or pick the scab, but it should be safe to say “how is the band aid”. 

Even though lots of people go to therapy… depression and family issues are still very taboo. No one wants to be labeled as mental and there’s always some moron who says the wrong thing on purpose or a jerk who read something and is suddenly qualified to diagnose you (unwanted or not). It’s hard to know the proper course of action.

While both people needed far more support, it’s compelling that they both felt the need for secrecy. The cyber bullying of Robin Williams family alone magnifies the reasons why people often mask their true feelings, especially those of depression and suicide. The fear of attacks, of being labeled, handled or controlled, the need to be “on” for everyone else … it seems very taxing in a healthy state of mind, let alone someone who is thinking (incorrectly) that they don’t matter, that the world is better without them, or one unable to go on the same way.

I remain shocked by the suicides of Robin Williams and K. When I see someone being unkind, I kindly speak up …. you never know who may need a smile or kind word, it might save a life or just make the day a little brighter. Be kind to one another, you never know what burdens someone is carrying.