My head has been swirling for the past couple weeks for many reasons. Two of which are the sudden death of Robin Williams and the ongoing debate over the ALS Ice Bucket Challenge. In regards to the ALS debate: I ask you this – When was the last time you heard a conversation or saw a commercial about curing Alzheimer’s, Cancer or Heart Disease? Okay. Then when was the last time you heard a conversation or saw a commercial about curing ALS? Yep. That’s what I thought. Our silence about this insidious disease is allowing it to claim more victims with each passing year.
I’ve been amazed and so disappointed at the rude, ignorant comments that have been left on some ice bucket challenge posts. Ignorance is never bliss people. Knowledge is power. And asking questions is a form of kindness, intelligence and love. So ask away. Learn something new. Next time you watch a silly ALS Ice Bucket Challenge post – Listen to your friend’s gasp as they receive a shock to their body and mind. Think of the ability they have to run away from the shock, as most of them do, to grab a towel as they dry off and warm up…comforting their body. Remember that from that point on, they can get back to life as usual. Then please join the rest of the country and continue to donate millions to find a cure for ALS. And please remember, it’s not about the ice bucket. It never was. It’s about raising awareness and raising money. It’s about ALS.
Through all this (and more) I’ve learned, once again, that life is funny. And people are funnier, still. Even sad people like Robin Williams.
Life is confusing and hard. We set goals. We make plans. We fail and we fall. We get up again and again, feeling a little more bruised for having fallen so much.
WHILE OTHER TIMES
Life is beautiful and grand. We set goals. We make plans. We watch them fall into place, like that last piece of the puzzle as we exuberantly exclaim, “There, I did it!” Almost forgetting the frustration of trying to make the edges fit so you could fill in the center. And we feel grateful for having connected all the peculiar pieces together so well. Remembering that odd piece that didn’t seem to fit at all…until it was so obvious you wonder how you ever missed it.
So where do we start? On the edge? Or in the center?
BOTH ARE IMPORTANT
Feeling, still, mystified by the affect that the death of Robin Williams had on me: as a sadness fell over me, a verbal gasp followed by, “What??” as I heard the news. As if I personally knew him. Obviously I didn’t know him nor have I ever met him. But like many, I felt a connection due to his openness. His humanness. Such an endearing person. A multi-talented individual. A person who by all accounts was giving and loving. Apparently generous to a fault. A larger than life personality. A wonderful father. Husband. A lovely human being.
So why then, couldn’t he…no matter how much his family loved him, live past the dying on the inside? No matter how hard they secured his edges with their loving arms and hearts – his center remained empty. No matter how much or how often they worked together to fill his center – his edges fell away.
DEPRESSION IS THAT DIFFICULT PUZZLE. AN INTERNAL AND EXTERNAL RUBIK’S CUBE.
I don’t claim to personally know anything about depression. But here’s what I do know. Several people who I know and love have shared their struggles with me. And frankly, I’m sick and tired of having “closeted conversations” about mental illness with them. I’m fed up with the fact that they feel they can’t talk about their illness in the bright light of day without fear of judgment!
THIS HAS TO STOP!
Every smile we see has a thousand frowns that came before it. A singular moment that attempted to define a human being. A million teardrops that washed away the hurt. And then back to smiling. And perhaps my sadness lies in the sheer fact that all the while Robin Williams smiled. As he made other people laugh and smile – he wore an internal frown. I’m not saying don’t smile. I’m not saying don’t be positive. What I am saying is that what society tells us is confusing and misleading.
WHAT DOES SOCIETY TELL US?
Society often tells us – Chin up! Cheer up! You can do this! Or better yet – Be Strong! These encouraging words are all fine if you’re not trying to slay an internal monster, invisible and unknown to others.
Strong is one of those undefinable words like normal. Go on. Try. I defy you to define it. What if being strong steers us away from getting to the root of the problem? What if being strong means letting go of all you know and crying until your brokenness begins to heal.
Society doesn’t always tell us to get to the root of the problem. It tells us to dig it up and start over, albeit in the same diseased plot of ground. And to smile. And so we walk around wearing our smile masks proudly. Our humanness hidden.
Living past the dying on the inside is in knowing that no matter how broken you are, there is hope that it will not break you. No matter your brokenness – be it a few scattered pieces or a hundred thousand pieces. This will not break you.
But please – feel free to be broken. To tell your broken story. And to ask for help from another broken human being.
THIS IS CALLED HOPE. THIS IS CALLED LIGHT.
WE DON’T LOSE LOVE.
WE LOSE HOPE.
IT’S TIME TO TAKE THE MASK OFF THE FACE OF ALS AND DEPRESSION. PLEASE.
I suppose that in the end, Robin William’s comedic, genius mind, along with his beautiful heart and soul, couldn’t overpower his tormented mind. The mind devoid of hope, inside the face of a million smiles.
And while we are all saddened by his passing, I know the angels are laughing like they’ve never laughed before.
I now have a renewed hope. To be honest, a hope I’ve never given much thought to: That ALS now has the eyes and ears, the hearts and minds of our country. And that, one day, a mask will be something solely worn for Halloween.
“Hope is the thing with feathers that perches in the soul, and sings a tune without the words and never stops at all.” Emily Dickinson
37 thoughts on “living past the dying”
You just me brought me to tears with your heartfelt post on ALS and depression!! So poignant and beautifully written! I suffer from depression myself, it runs in our family, I take medication for it but I still go down the rabbit hole more often lately than not. I have been really shaken up by Robin’s suicide. I wonder with all he had going for him, and he couldn’t make it, what chance do I or others have of not giving in to the monster one day. I mean he was all things humane and he was unable to reach out in his darkest days and this terrible disease took him.
So terribly sad. I didn’t know him either but have been deeply affected by him leaving us.
And, thank goodness ALS is being brought to the forefront to be recognized as the killer it is and hopefully millions will be raised. It’s about time!!
Thank you for addressing these topics so authentically, which I am sure have been on a lot of our minds….mine for sure!!
Love and Hugz
I am most humbled that my post touched you, Cathy. I sincerely hope that the death of Robin Williams brings about much needed change. I can’t wait for the day that you and others like you can talk about depression the same way someone would speak of having a physical illness and have others ask how you are feeling. And more importantly if you want to talk. And as for ALS well it’s just horrific. Here if you need me… ❤
An OUTSTANDING post on multiple levels. How you managed to concisely wrap up two such complicated issues as succinctly and intelligently as you have is a real testimony to the excellence of your writing and the clarity of your thinking. I bow down!
Thank you, Barbara! My goodness – you are too kind. xo
This is a very important post, Karen! I have been thinking about you….I send you love ❤
Thanks, Lorrie! I send you love right back! ❤
I had no idea until the last day or two that people were being rude about the Ice Bucket Challenge. You addressed this brilliantly. It isn’t about the bucket but about the message and the gathering of our selves in to community to give support and bring about awareness.
Robin Williams……again, you said this so beautifully. I do believe the world was better for him. And even from his passing some awareness and light may shine in to the darkened hearts and minds of those suffering. I suspect he would be humbled if his death brought change and awareness to how we treat one another and how we address mental illness.
Powerful post Karen.
Thank you, Colleen. Hopefully his death will bring about much needed change. xo
I read this post. I had tears in my eyes. Your writing ability on two very difficult subjects I honestly take my hat off to you. I’ve been reeling about Robin Williams for more reasons I could state here. I also live with and help a Vietnam Vet who suffers from depression, and over the many years we have been together, both family and friends have left. It is time all of us came out of the closets and speak honestly about these mental conditions. Society puts the label of shame on them both, and man, I just about could scream. Speaking of screaming …. in the process of healing I have gone through, there have been times I would have just loved to scream. Our society is so cut off from real emotion that to scream would have police running. We are told to keep our chins up, stiff upper lip and so on, yet, that is SO wrong. When you have been hurt or your mind is going nuts, you just want to scream to let some steam off. Talking as well. People just do not want to talk about these subjects until again I just want to scream. Enough said. Brilliant post. And I really loved every word. Thank you. Love, Amy
Wow. Thank you, Amy. And what a powerful story you have, my friend! Having taken care of a child with Cerebral Palsy for 23 years I am familiar with labels. We need to peel away labels and start talking about human beings with conditions and how to best treat them. But more importantly…understand and listen to them. I hope to touch on several of these topics in the book I’m working on. Love, love ~Karen~
Karen, I couldn’t agree with you more about labels. I refuse to use them or be associated with them. The only time I do use them is to explain as I did with you. I really know that when we keep associating ourselves with a label, we become that label. What we think so we are. I have said this sort of thing over and over at Petals, and even with my own life, I must catch the thoughts that would love to pull me down. I am so glad our paths have crossed. Really. Love, Amy
I have no wit to share right now, Karen. This was maybe your best post yet. I identified with it on more than one level. But- I have been bucket challenged several times now and I am just not going to take the bait. I don’t judge those who want to do it! If they want to, have at it! But, I don’t like being the center of attention for any reason. There are lots of charities and the original challenge said to donate to ALS or your favorite, if I remember correctly (which I probably don’t). So- sorry everyone- you won’t see me in a wet t shirt (and never have- thanks to the generation I was brought up in! LOL!) but, I will make some donations and say some prayers and thank those of you who have challenged me to give. We should be so motivated on a regular basis. xxoo.
Ah, Sue – thank you so very much! But I know better, you always have wit to share! 🙂 I agree with you, whether one feels motivated to do the challenge or not it really doesn’t matter as long as money for research is raised and put to good use. Thanks for being here and supporting me…I’ll be writing my last post today. xo
A wonderful post K. I empathise with all sufferers of ASL and with every mental illness that fills the medical journals. You know as do others, that my daughter suffers mild depression, BPD and BiPolar. For years I never saw or picked up on any signs, until it manifested last year. The masks are worn, most unknowingly. It takes a break out, a melt down, or worse death, before people stand and notice. I was one of those people, I thought she was being a spoilt brat at 26, telling her to be responsible, to grow up. I did not know, I carry that guilt. Sorry I have gone off track a bit here. Getting all the pain that these people suffer out in the open as you have written is so very important. None of us should hide. x
Thank you kindly, Jen. PLEASE don’t ever feel guilty (says she who has felt the same), you can’t know what you don’t know. That’s why information needs to be out there like warning signs for various other disease and conditions. I think of you often. Well be in touch soon. Hugs & Love #lifeiscrazyrightnow ❤
I guess the guilty stamp on my forehead will remain for a wee while. Glad to see you back, hope your world settles down quickly for you too. Keep in touch. Hugs and love ❤ xx
Beautifully, beautifully written. I nodded my head as I read each word. You nailed it all. Personally, I haven’t seen/heard bad comments about the ALS bucket challenge. I’ve been so happy to see info on ALS spread around the country in a ‘fun’ way – the ice bucket challenge – that has challenged people to learn more about the disease. Now we need a similar ‘challenge’ for depression. Because that disease is even more insidious, hiding itself behind smiles and laughter. Yes, it’s still ‘in the closet’ – I hope that changes quickly. Thanks for this magnificent post.
YAY! You nodded your head – that’s all I need to hear, Pamela! (You’ll laugh when you read my last post coming out today, hopefully). And yes, everyone and everything needs to come out of the closet, once and for all! xo
Lovely post on two important topics of which I’m close to both, sad to say. My family carries a rare gene for a disease similar to ALS, (albeit in the MDA family) extremely insidious, but much more rare. Many in my family too, have battled depression, myself included. I feel terrible at Robin William’s loss, as though he was a member of our ‘family,’ and in a way he was I guess. Although, I can never imagine taking one’s life, I do know the pain and suffering he must have felt. So sad to think he felt there was ‘no other way,’ when life is full of other answers.
I too am saddened that both topics are close to you, my friend. I’m so sorry to hear that your family carries a gene similar to ALS – hopefully the money raised will help your family, as well. While I’m sorry to learn that you (and family members) battle depression, I’m glad that you’re talking about it openly. I won’t be blogging anymore (book) but please feel free to email me. I will miss reading you. hugs & love ❤ ~Karen~
Every time I read a post of yours, I am more inspired. I have just nominated your blog for the Very Inspiring Blogger Award. Please visit my site to see. http://kimgosselinblog.com/
Aww…thanks Kim! You have been so very kind and supportive! And being nominated by someone as talented as you means the world but I became an award free blog a few months ago. THANKS for the nomination! ❤
Thank you so much Karen for this heartfelt post bringing light to two desperate diseases – ALS and depression. Society does indeed tell us to be strong, cheer up, and smile. But often those who are depressed are the ones who smile and laugh the most, at parties, with friends and family. It is easier to cover up the dire thoughts and take the attention off the turmoil that they suffer when alone, in the dead of night, buried beneath the bed covers or staring at the floor for hours at a time. What? She’s depressed? How can she be? She’s always the life and soul of the party. That’s because she can’t possibly tell her friends how desperate she is for fear of them telling her to cheer up. She can’t cheer up. Strong people become depressed because they can’t take any more. It is insidious and tragic and robs life of all joy and light, bringing only an endless grey that numbs everything. It brings confusion, inability to make decisions, to think outside the all-pervasive fog that creeps around her brain and sucks the life out of all her energy and concentration and tries its hardest to destroy all hope. As for ALS, what more can be said? A truly devastating disease. I’m not aware of the negativity over the ice bucket challenge that is going around the world and just goes to show that there will always be ignorant, pathetic idiots who have nothing better to do with their lives, but the challenge is in full flow and that’s what counts. Bless you Karen, and again thank you for your beautiful, loving heart. Faith, love and hope ❤ xo
My dear, Sherri…I feel as if you and I could talk for hours upon hours. ❤ You are so right, it is always the brightest light that dims so quickly when not with others. Hopefully, awareness of both of these important topics will shed some light on identifying & treating depression and finding a cure for ALS. Hope all is well with you. Thanks for being YOU! xoxo
It was comforting to have something so coherent to read about these two issues. I have been trying to make sense of the ice bucket challenge and it was refreshing to hear a positive and informed perspective on it. Robin Williams’ death hurt me deeply, as it did so many many others. A beautiful exploration of this and a sensitive discussion of depression – thankyou so so much.
Reblogged this on Humble Heart Scribbles and commented:
Such a heartfelt exploration of two topics at the forefront of discussion- I wanted to share it with you all.
Thank you kindly for reblogging, Merryn! 🙂
Thankyou so much for your inspirational writing – I want to recognise your blog with A Very Inspirational Blogger Award. No obligation to participate, but if you have the time and you would like to, head over to my page at http://humbleheartscribbles.wordpress.com/2014/09/06/thankyou-a-very-inspiring-blogger-award/ and you will find the instructions there.
Aww – Thank you Thank you Thank you, for nominating my blog for A very Inspirational Blogger Award – it is much appreciated; however I became an award free blog a few months ago. ❤
No worries at all! Wanted you to know how much I appreciate your blog and also share it with others :). Sorry I didn’t notice the award free bit.
I agree with all of your great points 100%, Karen! I am angered at divisiveness. I think that the conversation that has started, along with all the commitments being made due to the ice bucket challenge overshadow any of its little ‘flaws.’ I would never understand anyone not caring about Robin W’s death nor any of the ways people ‘pick apart’ the famous. Everyone, in many aspects of life, are on ‘even playing fields.’ With death and disease, we have everything to lose.
I lost an ‘ex-babysitting child,’ who became a confused young adult who was being bullied in high school, ten years ago. I wrote a memorial for Ben, who ran out of the high school lunchroom at age 14 and into the path of a train. Depression and sadness permeates my being, when I think of all the ways others should have helped him. His parents, a nurse and an OSU professor, had him in counseling and loved, loved him. My son, James, was one of his best friends…
I know you are one who has lost someone, your dear son. Your heart must break and wounds must bleed, when things happen to others in different areas of the world. You have such a sensitive and loving soul, Karen. Hugs for your words and choices for standing up against those who don’t support what needs to be a united front, in the battles of diseases.
I love what you say about being broken and human and hope… Yes, I found it rather beautiful to go deep and embrace my own brokenness and to live from this place. It was a little surprising that this is where I have ended up after 4 years.. still a little bit broken.. but fine with it. ❤ Much love —
Thanks – it comes from a place of truthfulness. There is such pressure to ‘be perfect.’ We are all broken, I hope anyway. Love – from one broken human being to another. ❤
Thanks for your kind words. What a tragic story, Robin. Unfortunately it could probably be told in every school. Hopefully some good will come out of Robin Williams’ pain and suffering. HUGS xo
WoW.. this was a most indepth post.. Yes life tips us upside down many a time.. Sometimes we climb right back up, while at other times its the straw that breaks the camels back…
I so related with your post.. I suffered from a teenager with depression, fighting the inner demons is perhaps the hardest battle…. I came close several times to shutting the door for the final time..
You pull yourself up and dust yourself off… Even a total nervous breakdown in the 90’s which left me a gibbering wreck.. I never then thought of the door…
No one can understand the working of the mind at the time of making those choices.. It was a choice made in perhaps a moment of deep depression where it made sense to do so then…
Depression is something people push under the carpet.. People who have no idea of depression tell them to pull themselves up … I wish it was simple.. xxx Great Post
Thank you, Sue. First let me say that you have my utmost respect and admiration for having gone through depression and being courageous enough to talk about it. While I’ve never experienced clinical depression, I’ve always said that losing a child made me very empathetic of people who were fighting the depression monster – for it was as close to depression as I’ve ever known. So thank YOU! So many people have come forward since I wrote this piece. Some friends, of course, I had no idea …they were always SO happy. I hope and pray that the death of Robin Williams brings about true change. Be well. xo ~Karen~