LifeStory

Daniel William Schast

The following is a note that I posted on Facebook on my son's birthday, 2 years after he died by suicide. It shares part of his life's journey and the beautiful person he was and will always be.

I am the proud mother of Daniel Schast. He was born 27 years ago today. There are tons of Daniel stories floating around. Today, on his birthday, I want to talk about him. This is a bit of his story, through my eyes.
Daniel...A Beautiful Life.
He was our beloved son, brother, and grandson whose life ended on November 25th, 2013. He was a beautiful young man who suffered with the disease of addiction, coupled with monumental medical challenges.
Daniel was born the most loved little boy…..no baby was ever more wanted than him. He was happy, healthy, and had an exhuberant zest for life. He was incredibly intelligent and entertaining and always had a smile on his face from infancy to adulthood. I can’t begin to tell you the joy he brought to my life. He was an easy child in so many ways. In other ways, he was not easy.....he definitely challenged us! But talk about funny. He was a funny toddler, funny boy, funny teenager, funny young man. He was not a natural athlete. With our encouragement, he tried many sports. Not his thing. It was his creativity that was his forte. His passion for film developed at a very early age. I recall watching movies with him. Not really fun for me. He definitely critiqued and dissected movies. I was not about lighting or camera angles. He was about every aspect of everything he watched.
At age 16, he was a passenger in a car accident; broken back, hospitalization, medications. Fast forward a year and a half…..addicted to opiates. With the help of scholarship, Daniel entered Caron Treatment Center (http://www.caron.org/) in May of 2006. He spent 4 lifesaving months there, and entered the world of recovery. Not without challenges and ups and downs, he worked hard on his recovery and sobriety. He became a spokesperson for Caron and he sat on education panels. With a few others he helped create YARN, the Young Adult Recovery Network which helps new people in recovery to find a network of sober fun and support.
On 07-08-09, at the age of 20, Daniel was on a vacation in Rehoboth. He had spent a great day on the beach with some of his sober friends. That night, he attended a charity poker event with his good friend Sam. In an instant, his life changed. Daniel had a cardiac arrest. Sitting in the chair next to him was an angel trauma surgeon who performed CPR on him for 20 minutes until EMTs arrived, shocked him and got him to the hospital. He spent the next few days in a coma while undergoing hypothermia treatment. He was transported to The Hospital of the University of Pennsylvania and was diagnosed with a rare and genetic cardiac issue called CPVT. He had a defibrillator implanted. Another part of his CPVT was he had epileptic seizures. He then began the journey of living life with these challenges while in recovery.
A month after Daniel's life changing cardiac event, he bravely continued to follow his dream and went to film school in New York City. Again, not without challenges, he lived his life enmeshed in recovery. He returned home in August 2010, not feeling well at all. A new physician began treating him for "reoccurrence of Lyme disease". He actually had sepsis, his defibrillator leads were infected and he was as sick as anyone can be without dying. We were told that had we waited another 12 hours, he would not have made it. He had surgery to have the defibrillator removed and he spent the next 6 weeks at home wearing an external life vest while infusing heavy antibiotics round the clock. He then had another type of defibrillator implanted and again began to live life with the challenges, including the medications needed post surgery.
Daniel was honored as Caron's Young Person Alumni of The Year on July 16th, 2011. I remember the day well. He had just been released from the hospital having been treated for another infection. On the ride to Caron to receive the award, he kept saying that he felt he wasn't deserving.....there were so many other people who were more deserving. I assured him that despite his reasons why, Caron chose to honor him and he was deserving.
The new defibrillator and his epilepsy posed more challenges than I can explain. He had infections, he had seizures, he had ups and downs with medications. He relapsed and isolated. He went into detox 2 more times. He reconnected with his recovery community in a big way. In December of 2011, he asked for help to detox off of Suboxone which he had tried to manage himself. Caron gifted him a detox stay. My daughter and son in law lived in LA and are connected to the recovery community Beit T'Shuvah. They helped Daniel to find his way to LA. A film career in LA was his life plan.....the way he got there was a circuitous route.
Daniel spent the next year immersed in Beit T'Shuvah, sober living, living life, pursuing his dream career, trying incredibly hard to make life work.....despite all of his medical challenges. He had to have the 2nd defibrillator removed and replaced. Another infection. This is exhausting for me to even write.....can you even imagine his daily struggle? My precious son just wanted to live his life, be "normal", pursue his dream in the film industry, love freely, work and take care of himself, be self-sufficient, and help others. Every time he found work, a medical challenge arose and he lost his work. One step forward, two steps back. He was movie star handsome on the outside, yet so flawed on the inside. I have always said God gave him a lot of challenges, but he didn't give him ugly. Daniel rarely complained.
People knew his challenges, but did not know the emotional toll it was taking. Of course I knew.....he shared his heart with me. But none of us had a clue it was as dark as it was. Even on his last day, he assured me he was okay.....he protected me, his father, his sister and brother in law, his true love. He felt he was a burden. I assured him HE was not a burden. HE was burdened by his challenges. He was loved unconditionally and he knew it. He loved us all in a most beautiful way.
We have no answers, only deep and profound loss and grief. We all feel shattered that we could not help. We all wish we would have been more proactive in getting him elsewhere to different doctors. He was exhausted by life. His sister said it best....the medication that he had to take to stay alive was what made him not want to live. We believe the professionals should have understood that. It was a medication that took him to dark places. He kept his darkness a secret.....to protect us. He was as sick as his secrets. He could not see his way to a normal life.
The celebration of his life that we had here in Pennsylvania on December 7th, 2013 had 300 people witness and share in our sweet Daniel. We laughed more than we cried. He had an incredible zest for life despite his challenges. He had so much fun in life. He had an infectious sense of humor. He was a beautiful human being who touched so many lives and still does. We had another celebration of his life in LA in January 2014 where we heard more of my beautiful son. Again, it was filled with laughter and I heard beautiful and sweet and bizarro stories.
I share Daniel's story in the spirit of hope. When his life became unmanageable, Caron gave him the gift and tools of recovery and led him back to a path of a life of purpose. When I would say to him, “I’m so sorry that you have had to go through all of this” his reply was always the same…..”it’s made me who I am, Mom(my)”. And he was remarkable. There are times when much time passes and no one mentions him. That is hard for a parent who has lost a child. I am part of a wonderful grief support group and I hear that often. Sometimes I think Daniel is being forgotten. And then, someone will send me a text or a post or mention his name and I know he is forever here. I get messages of how he impacted people. He encouraged and gave hope to others in such positive ways. His heart was not structurally a healthy one, but it was a beautiful and caring and compassionate one.
And who was Daniel William Schast? He was a perfectly imperfect beautiful human being. His spirit lives on as he continues to touch so many lives. I miss him more than words can explain. He is forever my little boy. And I am forever his Mommy. Would I like a do over? You bet. There are many things I would do differently in looking back. But I don’t get that in the here and now. So I live life and find joy in my days despite the hole in my heart. With Daniel’s prodding, I laugh and love and find my way through this journey of life without him. Trust me, none of the days are easy, but they are becoming different as time passes. He is with me, always......sometimes kicking my ass and saying “Mom....I’m ok....you need to take care of you.” So, I do.
I began my day today, his birthday, watching the sun rise over the Atlantic Ocean. His spirit was with me.....wrapping his arms around me.....telling me all is well.....In Heaven Everything is Fine. He loved the beach. Part of him is now one with the sand and ocean.
Daniel William Schast
Memorial
Daniel William Schast
Memorial