730 Days - Make Your Life Beautiful

Back on August 18, 2018, Brian posted about the mantra he noticed at the gym "Strength...comes from your spirit and souls...not from your muscles." Last night at the gym, I noticed the words on the wall for the first time. Why this week, am I just noticing these words, does it have to do with it being the week of September 15th? It's been 730 days since we heard his voice, saw his smile, saw the twinkle in his eyes (actually I think it's been longer since we saw that), heard his cluck, touched his hand, kissed him good night, just anything.  730 days equals 2 years. As I sit here and write this, I think about September 14, 2016, at 4:01PM, he was still here, in this house, laying in bed in his room, sleeping most of the day but nonetheless, he was here. Then I think about September 15, 2016, at 4:01PM, and he was gone. No longer here. Our lives forever changed, and today September 14, 2018, at 4:03PM, we are figuring it out. It's not always easy, not always pretty but some how we are managing, mainly because we have no choice. Some days are easier than others, the 2nd year was definitely harder than the 1st, which scares me as we move into the 3rd year. Not a second, not a minute, not an hour, not a day, not a week or month, goes by when I don't think about him. My sweet baby boy, twin B, Ian Alexander Scher. 

The other day, an acquaintance from high school posted a video on Facebook made by Claire Wineland. For me powerful is an understatement of what I felt while watching it. Was this Claire's 

"Strength...comes from your spirit and souls...not from your muscles." I'm sharing her words here, hoping others find them powerful and enlightening. She also got me wondering, did Ian feel the same way Claire did about being sick? Part of me hopes so, I hope every person, sick or healthy, finds the beautiful in their lives. I know I'm going to work on it each and every day, even if it's just for a second, a minute, or an hour. And maybe, just maybe I'll figure out my why.

When you pity people who are sick you take away their power. I am sick. I will probably always be sick. And yet, I am 100% content and happy with my life. 100%. I have something called cystic fibrosis, but I'm actually not her to depress you all about cystic fibrosis. I'm actually here to talk about, how do we change the way that we treat sick people? And that we stop pitying them and we start empowering them. The way that our society works, we teach sick people that when they are sick, somehow, some way, they cannot be as happy as normal, healthy people, right? We teach them that their happiness, their contentment in life, their joy in life, is tied to how healthy we are. And I remember, I was around 7 or 8 years old, and I was flipping through this magazine, and there was this really beautiful picture of this artists in their New York loft apartment.  And I'm sitting there, I look around my hospital room, and I'm like, "I wish I was there." And I had a moment where I was like, "But I'm stuck in the hospital." And I thought, there's a Target right down the street that has some twinkle lights and some throw pillows, and I have a room. I have furniture. Why don't I make something out of this room? Why don't I deck it out? So, me and my nanny decided to completely redo the hospital room. And I don't mean just put some pictures on the wall. I mean completely redo the room. We we're moving furniture. I was sweating. My machines were beeping. The nurses were coming in, like, "What are you doing? You're crazy." And by the end, we had completely transformed the room, and nurses and doctors from all over the hospital came in to see it. And so, every time I ended up going into the hospital, I would deck out my hospital room. I started to realize that people who are sick, and nurses and doctors, as well, everyone in the medical community, everyone in the health care community, get so stuck in this notion that a hospital room is this cold, sterile, white place where we go to be sick, and that that's all that it can be. And we get stuck in that that we cannot see the possibility. We can't see what we can make out of it. We don't see what we can do with it. And I started realizing that our lives, in a way, are like this, right? Our lives are like empty hospital rooms. We get so stuck in the idea that, "Oh, it's supposed to be good or bad. If we're sick, then it's cold and it's sterile, and we just have to live with it like that." We don't let our self realize, we don't let our self see,  we can make that hospital room beautiful. We can make our lives into a piece of art. We all have that ability. We all have that capability as human beings to turn these empty hospital rooms, to turn these lives into something really beautiful. We look at people who are sick, and we pity them, because we believe that their sickness means that their life has to be inherently less joyous than everyone else's. Life is not going to stop unfolding itself to you just because you're sick, or because your life isn't how you think it's supposed to be. There's still going to be beauty. Now, I can honestly say, a majority of the happiest moments in my life have been when I am sick in the hospital. Honestly. And think about the implications of that, because I have lived the kind of life that all of you spend your entire lives running from. I've been sick and dying my entire life, and yet, I am so proud of my life. What does that say? No, really, what does that say about the way we're all living our lives? We're waiting to be healthy. We're waiting to be wealthy. We're waiting to find out passion. We're waiting to find our true love, before we actually start living. Instead of looking at everything that we have, looking at all of the pain, looking at all of the sadness, looking at all the beauty, and making something with that. That's how innovation happens. Innovation doesn't happen because there's some person who's in a great circumstance, and everything's going well, and they just get on a roll, and they make something for the world. Innovation happens, art happens, because of suffering, and when we clamp down to that suffering, when we teach people who are sick, when you teach little 7 year old me that because I'm sick, I don't have anything to give the world, I don't have anything to create.... So, I want to encourage you all, next time you meet someone who is suffering, who is in pain, instead of shutting down, instead of pitying them, I want you to think, "I bet their life is so beautiful." Really look at them, and think, "I bet their life is so complex and beautiful." We all get to be a part of this giant human epic story, right? We get to be a part of human history. We get to add to it. We have something to give. And we realize, it's what we're creating that matters. It's what we're adding to this beautiful story that matters. When we start looking at that, we change the world. 

CHANGE THE WORLD - Claire Wineland passed away shortly after receiving a lung transplant. According to medical staff it was the most peaceful passing that they had ever witnessed. 

Claire Wineland 1997-2018