The last scenes in the film were filmed in July 2004. After that, Stephen finished a beautiful renovation of the carriage house seen in the film. He took part in an experimental program using sensors implanted in his brain to control a computer cursor with his thoughts. He made significant contributions to the development of this remarkable technology, called BrainGate, which may someday provide patients with degenerative diseases unprecedented ability to interact with the world.
In 2006, Ben and Sherie had a daughter, Elliot Isabel. Both Alex (Stephen and Wendy's son) and Zoe (Jamie and Melinda's daughter) turned six.
In November of 2006, the tube of Stephen's respirator detached accidentally during the night, causing cardiac arrest. He died on Sunday, November 26 at the age of 37. His last act was to donate his kidneys for transplant. Until the last, he lived a full life every day with Wendy and Alex.
The Heywoods are strengthened by the support they've received from far and wide.
The foundation is now the ALS Therapy Development Institute. They have partnered with the MDA in a major new research initiative to examine the causes of ALS at the most fundamental level. More information can be found at www.ALS.net.
Friday morning at 5:30 I received the call from Wendy that I have gone to bed each night hoping would never happen. I could tell from the sound of her voice that this one was different. When I arrived, their small street was lit up with the flashing lights of two fire trucks, an ambulance, and the police. Going inside past Wendy holding Alex in her arms and into his bedroom I found Stephen. His vent had disconnected, his lips were blue and despite aggressive CPR he looked peaceful perhaps with even a slight trace of a smile. I rode to Newton Wellesley with the ambulance driver who also grew up in Newton and remembered Stephen from other visits.
Between his caregiver Nicole and the EMT’s, Stephen had CPR for over 40 min. I don’t know if it is because he forgot that he was sick or because his heart is larger and stronger than any I have ever known but it restarted. You could actually see the disbelief on the ER team’s faces. You also knew that they were not sure this was a good thing because Stephen’s eyes were not responding at all. They wanted to make sure we understood how bad it was but they missed Stephen’s point as people often do.
Stephen would tell a joke about wanting to die a heroic death. It went something like this. There would be a fire and he would save someone but it would have be a slow fire with ramps because he would be in a wheelchair. I think he found a way to do that.
There is no blood flow to either hemisphere of his brain and he has no EEG signals. Stephen is gone, left in our hearts and in the relationships and structures he has built. Stephen was in command of his world and his body at all times and never lived life on anything other than his own terms. Thursday night before bed he sent an email to Ben saying how wonderful our Thanksgiving was. It was a wonderful Thanksgiving.
Stephen has kept his body alive so that his family and friends could gather and say goodbye. As Stephen indicated he wanted to he will donate his organs to others to give them a chance at the amazing years of life that he gave us. Sometime over the next few days if it is possible some very lucky person will get his heart.
So he found his slow fire and it has ramps.
© 2010 West City FIlms, Inc