Original Publish Date on Word Press: 10-12-14
The gods envy us. They envy us because we’re mortal, because any moment may be our last. Everything is more beautiful because we’re doomed. You will never be lovelier than you are now. We will never be here again.
The gods envy us. They envy us because we’re mortal, because any moment may be our last. Everything is more beautiful because we’re doomed. You will never be lovelier than you are now. We will never be here again.
-Homer, The Iliad
Abraham Maslow was an American psychologist best known for creating Maslow’s Hierarchy of Needs. This Hierarchy of Needs was predicated on the theory that once a person’s basic needs are fulfilled, only then can self-actualization be realized. (Think the 60’s and the ME generation; doing what feels good to and for me.)
Alternatively, Viktor Frankl, an Austrian neurologist, psychiatrist, and Holocaust survivor, developed a very different theory called logotherapy. The idea behind logotherapy is that our main motivation for living is to find true meaning in life – which isn’t necessarily just fulfilling our basic needs. In fact, Frankl posits that life has meaning, and possibly even more meaning, while being endured under even under the most miserable of circumstances.
It was this sort of thinking (which became the foundation of his logotherapy theory) that allowed him to make it through the Holocaust alive when so many others did not. This idea, called self-transcendence, is the driving force behind self-evolution. It is a person’s desire to find meaning in life that goes way beyond simply fulfilling their own needs.
Last week I attended a day conference for work. The speaker was University of Michigan professor Victor Strecher who is the Director for Innovation and Social Entrepreneurship at the School of Public Health. The broad theme of the conference was work-life balance with Dr. Strecher as the keynote speaker and then several break-out sessions.
In addition to the work Dr. Strecher does at the University of Michigan, he also writes and speaks about the meaning of life and changing your life on purpose. When his daughter was 6 months old she was diagnosed with a heart condition after having chicken pox. They had to decide whether or not to take her home from the hospital and let her pass or try for a heart transplant to give her more years. A heart transplant had not yet been done in the state he was living in at the time and even with the heart transplant the doctors weren’t sure how much quality or quantity would be added to her life.
After what were certainly excruciating discussions, they made the decision to move forward with the heart transplant. Their daughter ended up living life and living it well up until the year 2010. Spring break 2010, the Strecher’s took their daughters and their boyfriends on a location vacation for spring break. While on this vacation, their daughter (who had not been sick), told her boyfriend that she had lived her life so well she could die now. (I’m sure I’m paraphrasing horribly here.)
She died that night.
You’d have to read his book, website or blog if you wanted more of the story but the point is that while I was listening to his talk, every single word he said resonated with me. Sure the details were all a little different but the theme was the same.
Throughout our 10-year journey with Willy and his lissencephaly, we’ve also had to make decisions that are absolutely no less than life or death; quality versus quantity. As a parent, we want our children to live long, healthy lives. When we find out they are terminal, something in us still begs for them to live as long as they can. We put them on meds, and make decisions about surgeries and such but the question begs to be answered. What is the cost of all this? Is a longer life necessarily a better life? Some countries that have the longest life expectancies also have the highest suicide rates.
Last spring we had to make one of these decisions. Willy had been having increasingly difficult pulmonology issues and it became time to consider a tracheotomy. (http://www.surgeryencyclopedia.com/St-Wr/Tracheotomy.html)
We decided not to do the trache. For one, Willy loves swimming and the trache would eliminate his ability to swim. Secondly, the trache often causes infections since it is another opening in your body. By deciding against the trache, we instead ended up with a cumbersome pulmonology routine that often takes hours a day. For us, this was a prime example of quality versus quantity.
On July 9, 2004 when Willy was diagnosed in the University of Michigan Emergency Department, we were told his life expectancy would be around two years. After about twelve hours of self-pity, we decided together to give him the best life we could regardless of the amount of time.
It’s been a tough 10 years. There have been days we cursed lissencephaly, cerebral palsy, epilepsy, cortical vision impairment, chronic lung disease, wheelchairs, insurance companies, seizures, medications – I could go on. We worry about what this has done to the other two kids. We wonder to what extent our marriage and subsequent divorce were affected by this.
But at the end of the day, there are small moments of absolute wonderful that shine through like little tiny openings of light in a stormy sky. Winning a battle with the insurance company. A smile properly timed as if he heard what we said. Seeing his brother or sister tenderly watch over him while he’s having a seizure. Photos from his teacher as they work hard during the day with therapy, movies, songs, outings, and more. Appreciating an effective medical team and the fact that one of the best medical centers and universities in the world is in our back yard.
And this from his teacher, Jessica (seen in the photo above with Willy), last week on the note she sends home each day:
“We have never seen Willy smile as much as he did today. We had so much fun with him.”
Look at this. The child I thought would pass by the age of two is now ten and living a life that, while not without challenges, is happy. After hours of work each day, after dramatically changing our life plans, after all the ups and downs, we have a happy child.
And there, friends, is my moment of self-transcendence.
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