Showing posts with label death. Show all posts
Showing posts with label death. Show all posts

Tuesday, May 21, 2013

Up in the Clouds


As I do most mornings, I woke up far too early and lay in my bed for a while scrolling through my Facebook newsfeed until my body caught up with my mind and together we could roll out of bed. On several friends’ and organizations’ pages, I learned that Zach Sobiech died last night. He was a fellow young guy living with cancer – far younger than me. He was diagnosed at 14 and died at 18 from osteosarcoma, a bone cancer.

Maybe you heard his story already, but I felt compelled to share it because of how much he has moved my life. I learned about him when his now-viral YouTube video shared the online pages of Huffington Post’s Generation Why section with a story I had written.

His doctors had given him a year to live, and he made the decision that he wanted to spend that time with the people that he loved, at home, doing what he loved, which was songwriting and music. His song, “Clouds,” is a bit of a farewell, written knowing that the time he had left was short. Though what he sings about is tragically sad, its upbeat tone and positive lyrical spin demonstrate his zest and appreciation for life, as well as his peace with his impending death.

For anyone to reach that awareness is a beautiful gift, for it to happen for such a young man, even more so. His music video for "Clouds" went viral and a tribute was made back to him with several celebrities who were moved by his story and were filmed singing his song. I loved everything about this humble young man who made it known that the solution to happiness really is so simple.

This morning I watched a documentary about him,"My Last Days: Meet Zach Sobiech," created by SoulPancake. It is more than worth the 22-minute watch. Settle in and your life will be changed, too. Listen to what he has to say. I cried and cried all through it as I related on so many different levels. I cried because I am sad that he is gone far too young, but I also cried because I was so happy to know that he lived such a full life that he could be proud of, and at peace with, in spite of dying from disease. As they say at the end of the film, he touched so many lives not because he was dying, but because of the way he lived. That is beautiful and something I aspire to every day.

Learning of Zach’s death, and then more intimate details of his life, inspired me to seize my day. As he touches on in the documentary, I too, often live in the extremes: really good days and really bad days. I woke up pain-free and was determined that today would be a good day. I pushed my weak, little body – with barely any red blood cells – to get my kayak out of the shed from under the snow blowers and fertilizers and stand-up paddleboards, into the Jeep and onto the river.

It was the first time it’s been out this season and the first time I had ever kayaked without Craig to help me. Though it took a long time and a lot of effort to get everything together to get that boat in the water, I did it and I was proud. It was 85-degrees and sunny today. The river was so peaceful, and I couldn’t help but think that this total stranger’s spirit had helped to get me there – helped to give me the perspective to even believe that I could. Fear and excuses were washed away today and I just had to go.

The Jeep is full of mud, the shed a mess from my struggle, and I’ll be sore as hell from lifting and dragging the 50-pound kayak, but the self-satisfaction and the peace felt floating with the current was worth every effort.

Not including Zach, three people in my online cancer support world died in as many weeks: two from Hodgkin Lymphoma and another from bone cancer. It happens far too often, but that is my world, brutally aware of the realities of this disease. As much as it’s a punch to the gut every time, it also adds fuel to my own focus to not take this life for granted. I am still going strong and for every added day I’m given, I am so grateful and I try to live it in their honor.

Thanks for the song and your spirit, Zach.



Tuesday, July 24, 2012

Q: Will I Live or Die? A: Yes.

I am going to die. You are going to die. Every single one of us is. No one is invincible. Death is the only real guarantee in life. It’s what we do with that reality that matters. It’s when tragedies like that in Aurora, Colorado happen that these existential questions come to light. It’s a time to contemplate and evaluate and appreciate the reality of life and death. As many were, I was deeply affected when I heard the news of this unthinkable act. What human cannot pause and think about what something like that means for their own lives and the world at large? It’s something far too important to turn our heads at.

For me, it brought up a lot of questions: Why them and not me? What’s it like to be gone in a shocking instant versus someone else that has a long-term terminal illness? Is one ever preferable over the other? What is worse for the victim? How about for those they leave behind?

Why am I, with a body that was full of lymphoma from nearly every lymph gland right through to my spleen, now not just surviving, but I believe thriving, while a six-year-old out for family night at the movies had her life cut short at the hands of an erratic and disturbed gunman. These questions are unanswerable.


Would you want to know when your day will come? What would you do with that knowledge? It’s a nagging that fellow longtime cancer patients and I carry with us daily – for better or worse. Most of us long to live. But this can't be said for everyone. I’ll never forget the time in the Emergency Room when after finding out I was a cancer patient, a man told me I “am lucky because most of us are trying to die.” I am not trying, and I’d venture to guess that those there for the midnight Batman screening were not either.

When the Dalai Lama was asked what surprised him the most he replied: "Man, because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then he dies having never really lived."

Surprise: we are all going to die. Like those in Colorado, some seemingly too soon and too tragically, but it does not change that reality. When I really look at it, am I more likely to die than anyone who drinks away their weekends and smokes a carton of cigarettes a day? Would I have been any more likely to fall victim than the positive and driven sports blogger who had already narrowly escaped another random shooting? No, I don’t believe that I am.

Okay, maybe my red flags are a little brighter than others, but we’re all waving them: whether it’s the massive amounts of stress we’re under, underlying disease, environmental factors, risky lifestyle choices. There are arteries clogged, communicable diseases acquired and fluke accidents happening every minute of every day. My risk factor just happens to be cancer, which is why I have to be so much more conscious of keeping the other risks low.  

To be able to wrap my head around that has allowed me to feel better integrated with the world around me. I am not unique in facing death. It can and will happen to any one of us at any time. I just know my enemy in advance unlike the nightmare that these 12 innocent victims had no opportunity to process amid shear chaos. By no means do I have contentment about it all the time; it is certainly a practice. Yes, I have a disease that will potentially be the thing that kills me. But something will kill all of us. That doesn’t mean to live in fear of it, but rather the exact opposite.

I wrestle a lot with the immediate question: Am I going to live or am I going to die from this? As my therapist once so perfectly responded: “The answer is ‘yes’”.

Because of the state of my disease I have to live in the present, unable to plan too far for the future. I have what can be seen as an opportunity that others don’t get to because they are too afraid to think about it or be conscious of death. I don’t have a choice in the matter really, but I can only hope that others will see stories like mine, and those of the beautiful lives lost in this massacre, and also be able to come to that realization that we get just one chance – in this lifetime anyway.

It doesn’t mean that we need to think about dying all the time, but I do believe that we should think about living all the time. Living has different meanings for everyone, but it’s about finding whatever that authentic path is and running with it.

Of course it doesn’t – and shouldn’t – take a life-threatening disease to come to acceptance of this. I think it comes with age as well as we all move past the blissful unawareness and invincibility of youth. Diagnosed at age 26 I haven’t been able to stay unaware as long as most, but I feel that that has been a gift to me. It has given me the opportunity to feel the full gratitude of what I have and to look at the brevity of it all in the face and decide what to do with it. That carries both an immense weight and freedom with it.

Craig told me that he remembers me saying a few months before I got sick that if I died on any given day I would die happy with the way I lived my life. I agree even more whole-heartedly today. I am happy with the adventures, the challenges, the love, the beauty I’ve experienced. I want more of it and I lust for it, but it’s not that I’m trying to avoid death now because that is inevitable. It’s that I’m trying to make the most of this life, this body, my relationships and the mark I am making here.

I want to be clear not to give my cancer credit. I do not believe that having cancer transformed me. I do believe that it enhanced what was already there – the good and the bad. I didn’t need cancer, but I believe that we have learned and continue to learn from each other. Maybe this comes as a surprise to people who look at the cards I’ve been dealt and thank the universe every day that my life is not theirs. I’m fully aware that the thought likely often crosses people’s minds: “At least I’m not Karin” when comparing my situation to their own circumstances. However, I consider myself extremely fortunate.

If those 12 people that were tragically shot had the choice to take a life of cancer treatment and living with lymphoma to get another 5, 10, or 20 years then maybe they’d take it. We’ll never know. Or maybe that’s too much to bear for those who would rather not have the time to think about the finality of death and impending doom. Death can be sudden and tragic. It is always sad, mournful, and painful for those left behind. But it shouldn’t be a surprise to any of us. We never know what each day will bring. Every morning I thank my body and the world for giving me another sunrise, and I make a promise to myself that I will continue to honor this gift that is life.

We can’t not do things or plan for things because we mightdie. In fact, we should do things because we will die. I’m not talking traversing the globe on a raft or solving the U.S. healthcare debate. I’m talking the every day things, like calling that friend and scheduling that coffee date or actually stopping into that animal shelter that you drive by every day and think about volunteering for.

This is something positive that can come out of such a horror that was that shooting – that it will get people to realize that it can all be gone in an instant, to shift priorities and focuses where necessary and to take the time to savor and be present, to get rid of that guilt and worry and shame and the squelching and the swallowing, and instead let ourselves shine brightly as we are meant to.

I am grateful that this reality of death is smack in my face and this recent tragedy again brings it right to the front of mind. I’ve had a chance to consider it and come to terms with what that means. I’ve learned over the past three years to be able to control that fear of death’s inevitability. When I was first diagnosed, and through much of the initial barrage of treatment, it was much about avoiding death, but now it’s much more about living life. There’s a big distinction there, and it’s taken a lot of work to create that mind shift.

At points I was so hell-bent on ridding my body of this disease and frustrated with the difficult process that I’d forgot to be enjoying my life. It doesn’t come easy, but it’s very vital to survivorship to not think of the time with cancer as something to “get over”, a “blip” in life, because it was and is my life.

Dangling in limbo between death and life, health and disease is not an easy place to be. I don’t have the capacity to live in the future, only in the present and this is a gift.

No one can avoid death, but we can maximize the strength of our bodies, our minds and our hearts and we have the ability to affect others and the Earth during our time here. This can happen in both a positive and a negative way.

Be ready every day. Don’t live with regret. Do what you want to do, what you love. Tell the people that you care about that you care about them and take the time to invest in those relationships. Above all invest in the relationship with your self and the things that matter to you. In the end, all of the other junk just dissipates. You can’t take it with you and it’s about the experiences that you create.

I hope that those that were lost in this shooting did live their lives that way. I like to think so as they were out enjoying the excitement of a midnight showing of a movie they had obviously been highly anticipating – out to have a good time. They had no idea that this would be their last night on Earth but it helps to imagine that before that terror they were out doing something they loved to do – childlike and carefree, eager with anticipation.

Who would ever fathom that this would be where those that survived would bear witness to such an unspeakable tragedy and those that died would never see their loved ones again? No one would. And that’s the beauty of the human race: our resilience. If these people all stayed in their homes, letting death stare over them for fear of entering crowds or being out in the world then they’d miss all that life has to offer and they would still die.

Maybe I’m going to outlive everyone I love and die alone well into my nineties in a little cottage by the sea wrinkly and smiling. Or, maybe I’ll develop a whopping infection in my mediport or my organs will suddenly give out from all the toxins they’ve been dealt and I will die tomorrow. Or, maybe I’ll get hit by a bus. No one knows when and how, but death will happen – to all of us – and it’s something we have the potential to be ready for.

Now is as good a time as any to take pause and reflect. We can’t live in that constant state of stress and fear as it will only exacerbate the process and destroy the chance we have at joy. We do have the means to choose how we journey along our way to death, no matter how long or how short our journey may be.

Tuesday, June 29, 2010

The Other Side of The Rainbow

The Other Side of The Rainbow
Yesterday 6/28/2010 at 5:30 pm my dad made the journey to the other side of the rainbow.
James Elisher Johnson  10/26/1923-6/28/2010
We are sad yet we did not want him to linger in suffering or pain.
These,  the colors of the rainbow in his blessed long life are as follows,
Red because red was his favorite color,
Orange because the colors of the sunset over the muddy river was beautiful to him,
Yellow because sunflowers are yellow and this represents all 4 of his sunny children,
Green is for the grass that was rich and green on the banks of the river, 
Blue is for the color of his eyes so bright and mischievous,
Indigo is for the deep richness of his love for my beautiful mother in their 68 years together,
Violet is for the place he is now , a place of peace and contentment on
The Other Side of The Rainbow