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STEPHEN HEYWOOD, 37, Dies; Master-Builder/Architect, subject of the 2006 Major Motion Picture SO MUCH SO FAST
NEWTON, Mass., November 30, 2006
From December 1998 when Stephen Heywood was diagnosed with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) to Sunday morning November 26, 2006 when he passed away with his family and friends Stephen lived a lifetime.
As his ALS progressed toward complete paralysis, Stephen, a vigorous artist builder, began a journey that compressed time. Over the past eight years he built and rebuilt three homes, including his own and a carriage house that is more art than structure. He trained apprentice craftsmen when he could no longer use his hands. He inspired others to imagine and build his designs when he could no longer use his voice. Stephen took joy in the feel of the materials and the art of the forms as they became reality.
Stephen married Wendy Stacy and together they built a family. They had a son, Alexander, in 2000 and together raised him to be a strong and caring child equipped with his first, full-sized power drill at the age of 2. Stephen was a most loving father and husband.
In 1999, Stephen and his brother Jamie founded ALS TDF, the world’s first non-profit biotechnology company, now widely recognized as the leading edge in a new breed of institutions that are changing how treatments are developed for disease. Today, ALS TDF is the world’s leading ALS research center and has defined new standards for quality and effective research.
Medically, Stephen’s ALS progression was average for his age. Five years after diagnosis he opted for full-ventilator support to counter the degenerative effects of ALS. In 2000, he was the first patient in the world to receive a stem cells injection into the spinal fluid of his ventricle and lumbar cord. Stephen was resilient and often chose to participate in clinical trials for new drugs and genetic studies. And, for the last three years of his life was on an experimental drug discovered by the research team at ALS TDF.
Stephen was the impetus for PatientsLikeMe, a new online collaborative medicine company founded in 2005 by his brother Ben and friend, Jeff Cole. PatientsLikeMe was built to allow Stephen and other patients to share their disease progression and treatment regimens. With Stephen’s inspiration, PatientsLikeMe is working to empower patients with all diseases to share their medical information and experiences to help improve treatment outcomes and quality of life.
Stephen embraced technology. His wheelchair, customized by his brother Jamie, is arguably the most advanced in the world with integrated power for his ventilator, computer, and even robotics which he could use to play with his son. Stephen was connected to his computer 24 hours a day enabling him to position any part of his body using the control system, and with the twitch of his jaw hit a variety of switches that kept him part of every conversation. The system ran Microsoft windows so every few hours or so Stephen would have to “reboot” himself.
Stephen’s belief in the redemptive power of technology lead him to be the first ALS patient to have a brain implant as part of a clinical trial by the company Cyberkinetics. He was not so much the subject of the trial as he was a member of the development team using his signature humor to prod and drive his fellow engineers to new advances. Stephen inspired those around him to imagine the impossible, and then quietly challenged them to make it reality. In his last weeks he was able to achieve for the first time multi- axis control of a virtual robot arm by just imagining motion.
“Invincible.” This is the word that has been used more than any other in the hundreds of emails received from around the world in the last day. Stephen’s instant messenger and online handle were ALSKING and he was a constant presence on the phones and computers of his friends and family. Though Stephen’s ALS was advanced, no one thought of him as a dying man. He inspired thousands of ALS patients not by fighting or living defiantly against the disease but by simply making it inconsequential — it did not matter to him. There was no moment in Stephen’s disease when he could not communicate and at no time was he not in control of every aspect of his life. Stephen lived his life and forgot his disease.
On Wednesday, Stephen took Alex to the barber where they both received haircuts, on to the pet store to buy food for Alex’s pet snake. On their way home, as Stephen did every week, he bought flowers for his wife Wendy. The holiday was with his family and friends, watching Alex play he said, through his computer, “I am very Lucky.” His last email at 10:20 PM was to his brother Ben: “We had wonderful Thanksgiving. Elliot is incredible (referring to Ben’s four-month old daughter).”
The cause of death was an accidental disconnection of his ventilator circuit at 5:00 AM, the day after thanksgiving. The human and technological systems and backup systems failed. Between his wife Wendy, his caregiver and the EMT’s, Stephen had CPR for over 40 minutes. Perhaps it is because his heart is so strong that it restarted despite the incredible odds against that happening. It was clear from the team at the hospital that his recovery was not necessarily a good thing because Stephen’s eyes were not responding at all. There was no blood flow to either hemisphere of his brain and he had no EEG signals. Stephen was gone, left in the hearts of his family and friends and in the beauty of the structures he gave the world.
About PatientsLikeMe
PatientsLikeMe (www.patientslikeme.com) is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, Multiple Sclerosis, Parkinson's, HIV, and Mood conditions (including depression, bipolar, anxiety, OCD and PTSD). While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.
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