Monthly Archives: August 2014

Why My Family Did the #IceBucketChallenge; or, Dear Leslie, this one’s for you.

My sister Leslie is my favorite of my older sisters. Sorry to the rest of you, but 1)she’s probably the only one who would’ve read this web blog anyway so you won’t even know I’ve said it, and 2)c’mon. She’s your favorite too.

My earliest memory of Leslie was when I turned 7. I had just been part of a merger–meaning my dad had married her mom. I had 6 older siblings already, and then became “#11 of 12” in another family. It was cool, because Rachel, my actual favorite sister (but not older, so there’s no contradiction there), was my best friend so it was kinda an extended sleepover, at first.  Anyway, that’s another story.  My 7th birthday, I got a package! From California! It was a red Minnie Mouse watch from my sister Leslie.

Leslie lived far away, in California–so when she came for Thanksgiving or other visits, it was a HUGE deal for me. Leslie taught me to play poker (don’t pick up the cards until they’re all dealt. They’ll cut your hand off!). She laughed at my jokes when everyone else just rolled their eyes or told me I was inappropriate. She called sometimes when I was a teenager, just to talk to me (don’t let any boy treat you like anything less than a princess, no matter how cute he is). When all the sisters got together to go shopping and elected me to watch all their kids instead of going, Leslie was the one who thought to buy me a shirt. It was black and white striped and I wore it until my midriff hung out the bottom and it was mercifully disappeared. I never felt like the goober of the family around her. Leslie got me.

Leslie was an artist, a sculptor, an interior designer. She was so creative and talented. She was so beautiful. She was full of life, spunk, sarcastic wit, fire.  This is a picture of her, popping up out of the sunroof of the limo–this was classic Leslie:img086
So what does all this have to do with the Ice Bucket Challenge? Well, my favorite older sister was diagnosed with Amyotrophic Lateral sclerosis. ALS, or Lou Gehrig’s disease. It started with her having problems with her hands. My sister, the artist, couldn’t use her hands anymore. It progressed so quickly. We kept hearing things–look at Stephen Hawking, he’s been around for decades; it might stop progressing at some point; it could be quick; it just depends…..

I started calling Leslie to talk to her, to hear her voice, because she was losing her ability to talk, too.  Oooh, how it broke my heart to hear the slur, and the frustration because her mouth, her vocal chords, couldn’t keep up with her perfectly untouched, amazing brain. I wished I could record everything, because I knew it was going to end soon.

I had the opportunity to travel to California when I could take time off from work, and help out when her sweet husband couldn’t be there. Those times were bittersweet. I remember hanging out on the couch, watching HGTV with my sister, just having conversations. I still hear her voice from time to time, berating me gently for not following my dreams: “Don’t wait! If there’s something you love, that you want to do, don’t wait! You never know what is going to happen, you have to just do it now. Don’t wait.”  I never wanted to leave, but I also could just feel the hopelessness of knowing that no matter how long it took for Leslie’s body to kill her, she would be trapped in there, perfectly sound of mind, with no ability to speak, move, swallow–yet strangely she was still able to feel pain. I would cry myself to sleep every night while I was there, and pray for the strength to be positive and to be as cool for my sister as she was for me when I had needed her.  I hope I was. I really tried, even though there was often nothing I could do but…..well sometimes there was just nothing I could do.  img087

My sister passed away, leaving her awesome and wonderful husband, and my niece Andrea (who is pretty freaking amazing too).

When I talked about Leslie, I would say she died from ALS, and people just shook their heads. I could say, “you know, Lou Gehrig’s disease” and then they might get it. Usually not. When Leslie was sick, there was like, one or two experimental drugs she could try, that might help, might slow things down. They didn’t. There isn’t a lot of demand for research for cures or treatments when people don’t even know what ALS is.  Usually fundraising for ALS gets lumped in with Multiple Sclerosis fundraisers.

Along comes the Ice Bucket Challenge. The rules are simple. You have 24 hours to dump a bucket of ice water over your head and donate 10 bucks to ALS research, or you donate $100 to ALS research instead. You take a video of your ridiculous reaction to being freezing cold and wet, and challenge others. It started with one man, and then his friends, then it spread through the pro athlete community, then celebrities and then EVERYWHERE.  It’s gotten to the point where people are bothered. There’s a backlash. People are angry because it wastes water.  Or because they have info that the ALS Association doesn’t spend the money it gets on research, just salaries for officials. Or that ALS cure research means stem-cell research, which of course means that if you support it, you want babies aborted.  All, as my Brit friends would say (or Doctor Who), bollocks.  Here’s my thought.  This challenge is spreading because people can do something good, and have fun, and challenge other people and watch their videos. Enough evil and sadness and negativity is spreading, and people are super-psyched to pass on all of THOSE Facebook posts. Why can’t we do this and just spread the goodwill, ya know?

There is so much more….. every time I see someone I know, or don’t know, or celebri-know, dump a bucket of water over their head, and then freak out, and then laugh, I picture my sister laughing along with me. I know that as a family member  of someone who died from ALS, I feel the comfort of knowing that other people are learning just what our family, and my sister went through. Then there’s the money–the kind of money being thrown at this disease could very well fund at least some treatment, if not a cure.

Project ALS is an organization that funds and facilitates research for a cure for ALS. They have a 4-star, 91.4 percent rating on CharityNavigator.org. Here’s a link for them:  www.projectals.org . There’s the ALS Therapy Development Institute, also 4 stars and 97.31 approval rating through Charity Navigator. Their link is www.als.net.  (For the record, the ALS Association also has a 4-star, 90.73 percent rating through that website).

I’d love for you to go watch this video on YouTube. It’s Anthony Carbajal, doing a rather burlesque Ice Bucket Challenge. If you don’t want to see a man in a bikini top and tight shorts, washing his car (sometimes with his butt), then fast-forward to about 1:44 into it. What I REALLY want you to see is his explanation of what the Ice Bucket Challenge means to him.

Then, go to http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challenge/  and read.

If you need some fun, you can watch the Williams family Ice Bucket Challenge. There are cute kids and stuff, too.  Then maybe YOU can jump on this bandwagon. It’s a worthy cause, I promise you.

But for me, it’s personal. This one’s for you, Leslie (I still get choked up when I see Design on a Dime).

 

Making Sense of the Senseless: Some Thoughts on Suicide Which Won’t Make it Any Less Incomprehensible

Robin Williams is not the first person I’ve known who has committed suicide. It’s funny to say “known” because I of course only know the outward persona of Robin Williams–the side he chose to let me see by portraying characters in film and TV, and through interviews, stand-up comedy, etc. So, I don’t really know him–but I knew him enough that his death effected me. It effected many of us. Robin Williams was a comedic genius, who also had such heart and depth of feeling  that the roles he played just stayed with us. So, when it was announced that he had committed suicide, we the public reacted with intense feelings.  Sadness, of course. Shock. Disbelief. Anger. It’s the same myriad of feelings that comes with any death, especially suicide. This was just played out on a globally public stage. Matt Walsh, a popular conservative blogger, posted “Robin Williams Didn’t Die from a Disease: He Died From His Choice.” The backlash to that was fast and furious. People were angry , not just because of what Mr. Walsh wrote about our beloved Genie, but because of the implications for ALL people who are depressed to the point of suicide, who have succumbed or who have somehow been brought back from the brink. He was accused of being everything from insensitive to the devil incarnate. But….Was he wrong? In reality, Matt Walsh is both right AND wrong. It’s never been a secret that Robin Williams suffered from depression and addictions.  He talked about it during his lifetime, and he was always open about his struggles. His family has been fairly open, or at least matter-of-fact, about the details of his death.  It is accepted that depression is an illness, as real as cancer, diabetes, dengue. So, is suicide the same as dying from kidney failure if you’re diabetic? Or is it a choice, as Mr. Walsh proposes? As I’ve said, I am no stranger to suicide. My grandfather took his own life when my father was two years old. I will never know why–it wasn’t discussed–but I can imagine that it may have had something to do with the Great Depression, with being a veteran in WWI….and I don’t know what other demons he may have battled. Judging from poetry I’ve found that my dad wrote, my own father struggled with depression, and I know that I have had my…. we’ll call them “moments.” I’ve had more than one coworker take their own life. I worked with cops for 15 years, so that was inevitable. Suicide is a major cause of death to police officers and retired police officers.  I have had other family members take their lives as well. So I’ve felt it. The sadness. The guilt. The RAGE. How could they make that choice? Honestly, it’s a question that gets asked, in our heads and hearts. The reason we ask, is because everything we do, every day, from rolling over in bed as we wake up, to pulling up the comforter as we lay down to sleep, involves choices. So, obviously, the choice to step off that chair, or pull that trigger, or swallow those pills, is clearly, a choice. Here’s how we need to look at it, though:

What Hopelessness Looks LikeCan you see the door in this room? Can you see where the light switch is? If I told you to just open the door and leave, could you? Can you even choose to turn on the light if you don’t know where the switch is? Now imagine that this “room” is infinite. It’s your life. Everyone around you offers you hope, and maybe you find it for a time–but at some point, you wake up, and there you are in the middle of the oppressive blackness again. At some point, “choice” becomes a meaningless word because it doesn’t seem there ARE any choices anymore. If there are, you can’t see them.  An option you can’t take isn’t really an option, is it?

Okay. I don’t know if that analogy makes sense to anyone but me.

I recently read of depression and suicide as being akin to a descent down a declining trail. At some points the fall can be slowed and possibly reversed, but circumstances (again, circumstances that only God and the person living them can understand) cause the decline to be steeper and steeper, until it ends at a cliff.  At some point, the sufferer can no longer stop the slide and has no choice in going over the edge.

I don’t know if that analogy works better but hopefully some combination of the two can make my point about choice.

But here’s the REAL gist of what I need to say.

Dear Everyone:  IF YOU AREN’T THE PERSON IN WHATEVER THE SITUATION IS, YOU HAVE NO RIGHT TO JUDGE WHAT THEY DO, WHAT THEY FEEL, HOW THEY REACT!

No one can say, “I’ve been depressed, and I didn’t commit suicide.”
“I just got medicated and it helped.”  “Jesus helped me feel happy.” “I found a way to make my spirit happy and that was that.” or whatever you want to say.

NO ONE can fully understand why someone would take their life. What cross they have to bear. IS depression a sickness of the spirit as much as of the body? YES I believe it is. But not in the same way that Matt Walsh does. The spirit, that part of us that is eternal, is in the flesh–it’s in the body. When a person is born, and they have some sort of disability or sickness, that sickness can for sure effect the mind and the internal, eternal spirit. Depression, being a sickness that just sucks the life out of everything and colors the most beautiful things in a drab, lifeless, colorless nothing, can overpower the most spiritual of spiritual people.  I mean, we are told that if we have faith we can do anything–but no one tells a cancer patient “If you just had enough faith, those cancer cells overriding all your organs would just go away.”  Let’s not try to dissect something as senseless as suicide with our finite and mortal minds. It’s not our job, and it doesn’t help anyone.

By the way, here’s the guy who is capable and qualified to judge what’s going on when someone commits suicide:

128px-Christ_in_GethsemaneI chose this picture on purpose. Only Christ knows what any one of us are going through at any time. Only HE can understand fully what anyone’s state of mind is when they choose to end their life–and if that “choice” is really a choice at all at that point.

I know that God loves us all. I know that He wants to give all of us EVERYTHING. So, I KNOW that when Robin Williams left this life, God gave him ALL of the peace that He could.  God knows His child Robin, He knows what illness was in his mind and body, He knows the desires of his heart. It’s not some balance where the good deeds and the evil deeds get weighed against some absolute mystical measuring device.  God our Father and His Son have one goal in mind: the “immortality and eternal life of man.” So, they are going to provide the absolute upper limit of mercy to their beloved Robin. They will do the same for their beloved Leann, their beloved Matt Walsh, their beloved (insert your name here).

For myself, I don’t try to understand the incomprehensible horror that is suicide. To do so doesn’t help me, or the person who is already gone, or their families. What I CAN do is pray for peace. Peace for him, for his family, friends, and for the enormous extended family that was made better by his contributions, and who feel the loss at his death.