Alan’s Story

Alan and his family had no idea on the morning of July 22, 1982 that life could change in an instant. Alan woke feeling great after winning his first ever blue ribbon at a swim meet - an individual backstroke event. He was 15.

He spent his day like every other summer day. He went to the pool for swim practice in the morning. Went home, had lunch and returned to the pool on his moped. He hung out with friends and around 4:30pm he left the pool to hang out with his sister. Her husband was working out of town and she didn’t like to be alone all the time, so Alan would come over and keep her company. But as he was rounding the corner by his swim club, he and a car collided. It was an accident. However, after flying over the roof of the car, Alan couldn’t move at all. He lay in the middle of the street. He was not wearing his helmet. His brother was lifeguarding at the pool and ran out and stayed with him. Alan was conscious and talking. The ambulance came. Alan’s brother called their mom and told her that Alan had been in an accident and was going to the hospital. At that point in time, no one had any idea how life had just changed for all of them.

Alan’s sister had heard all the sirens and her mom called her to tell her to meet them all at John Muir Hospital in Walnut Creek. One by one everyone went in to visit him in the Emergency Room. We were not prepared to see him. His face was scraped up badly and his lip was split wide open. His right temple above his eye was split open and bleeding; shoulders bleeding, legs bleeding. But nothing was broken, at least nothing visible. Much of these first few hours are very surreal. Alan was stitched up and we took turns keeping him company in ER. Only one person at a time was allowed in the room with him. The doctor told us after a few hours that it appeared his spinal cord was involved. He suffered a C2/C3 injury. Again, we truly did not comprehend the true meaning. They put Alan in a hyperbaric chamber for a few hours that evening hoping to regenerate some nerve growth. Alan did not know what was happening and he did not ask. We were advised not to say anything unless he asked.

After Alan was transferred to the ICU in the early morning, we went back to the house to try and get some sleep. His family sat up all night trying to figure out what all this meant. What was going to happen now?

At first, Alan was not in isolation in the ICU, so the nurses could watch him. He was put on a ventilator his first night in ICU. He had a wonderful nurse who worked with him and they came up with a way to communicate even though he couldn’t talk. He would “click” with his tongue. However, even with the ventilator, his lungs collapsed.

In October 1982, Alan asked to speak to the doctor. He was told that he would never be able to use his arms or legs again. That he would spend the rest of his life in a wheelchair. Alan went to an inner place where he was able to comprehend what that meant. There were many discussions with family and friends, many tears shed.

Alan was surrounded by family and friends 99% of the time. And when he wasn’t surrounded by family and friends, he was well taken care of by the nurses and hospital staff. They were awesome and bent the rules a bit . . . allowing us to have more than one visitor at a time, allowing us to spend time in the “family” room together and even celebrate his 16th birthday in ICU with his family and friends. And the nurses/staff became part of Alan’s extended family.

He spent a total of 3 ½ months in ICU. Right before Thanksgiving 1982, he was transferred to Santa Clara Rehabilitation Center. He was allowed to come home for a few hours on Christmas 1982. It was good practice for the family to care for him. We had to learn how to transfer him from car to chair and vice versa. We had to learn how to catheterize him so his bladder could be emptied. We had to learn how to position him so he was comfortable. It was often a challenge for all of us; much frustration and many tears.

After many months of rehabilitation, which consisted of learning how to use an electric wheelchair, how to sign his name with his mouth and getting use to the idea of being a quadriplegic, Alan came home in June 1983. Weighing approximately 90 pounds, Alan settled into his new life as a “quad”.

Alan’s room was relocated from upstairs at his home, to the office downstairs. A “disabled” bathroom was added on to the room which consisted of a sink area and a shower area. Medical supply companies were contacted and monthly orders of supplies were scheduled. Many different medications were administered daily.

Alan’s parents’ lives also changed. While they enjoyed an active business, social and travel lifestyle, that all changed.

The main caregivers were Alan’s mom and dad. Additional caregivers were interviewed and hired. The hired caregivers would arrive in the morning to get him up, showered, feed him breakfast, provide physical therapy which consisted of a range of motion exercises, and anything else which was needed. This was a learning process for all of us. His mom or dad would feed him dinner every night and then they would put him to bed every single night.

We all settled in to a routine of sorts. Alan’s brother and sisters would often sit with him so their parents could go out to dinner or a show or go out with friends. A few times we would even take over the care giving for an entire weekend to give our parents a well-deserved break.

Alan continued with high school through a tutor and returning to Monte Vista campus his senior year. He graduated! Not only did he graduate high school, but then he went on to college at Cal Berkeley. He spent about 2 years going to classes with a caregiver and living in the dorms. To Alan’s family, his living in the dorms was frightening. He was on the 2nd floor, the elevator did not always work, his caregiver did not live with him, but students on the floor were aware of him and kept an eye out at night. His caregiver would come in the morning, go to classes with him, support him in getting his homework done, feed him, put him to bed in the evening and then leave. But Alan was brave and thrived in this atmosphere.

In 1988 Alan was able to purchase a home where he could entertain his family and friends. It was redesigned and remodeled to his specifications. He had roommates and caregivers. While his roommates would help him out periodically, Alan tried to be careful to not intertwine the different relationships. However, Alan’s caregivers always became friends and part of his extended family. He had several caregivers who were part of our family for many years.

Alan moving into his own home gave some space to his parents. However, Alan’s mom was a daily visitor at his home. He and his mother had a special bond. She was his rock, his biggest cheerleader, his biggest fan.

Fast forward through the years, Alan hosted a “summer solstice” party every summer for his family and friends. It was his favorite time of year and he was able to wheel around outside comfortably. Alan loved being surrounded by people he loved and who loved him.

Alan was able to travel; he went to Hawaii with friends/caregivers; he took a “road trip” with friends to the Grand Canyon, to New Orleans, and many other places. He was “best man” at his best friend’s wedding. He went to all kinds of concerts, his favorite was the Grateful Dead; he went to all kinds of parties, including even the exotic erotic ball. Alan was never afraid to try new adventures, meet new people, and experience life to the fullest. Alan gained nieces and nephews which he loved to spend time with. They would ride on his chair with him, either on his feet and when they were bigger, they would stand on the battery on the back of his chair and he’d ride them around. He was close to all them and they adored him.

While Alan faced all challenges head on, the health setbacks were often difficult. There were some years where he would spend 3-6 months in the hospital. Because his lungs were never the same after the accident, he was prone to pneumonia and lung collapses. But he was a fighter and would fight to get back home. And during those times, he was surrounded by his wonderful caregivers, his family, and friends.

Alan also experienced major spasms and “ghost” pain which to him was very real. He had a pump inserted into his abdomen which was then filled every three months with pain and anti-spasm medication. He also suffered a broken leg which happened during a bed to chair transfer; he suffered a broken arm, again during a bed to chair transfer. His spine was also becoming deformed so a rod was inserted next to his spine to give him more stability. He had bed sores, one of which took more than 10 years to get rid of. He would be hospitalized when it became severely infected, but eventually, with extreme care, it healed.

In October, 2000, one of his caregivers, named Jon, passed away unexpectedly. He was 34 years old (the same age as Alan). He had been caring for Alan that evening and went home and had a heart attack and died. This was a devastating event. Jon was the evening caregiver and they were very close. Jon would be the one to take him to concerts, out to dinner, and other evening outings.

A couple years later, another caregiver passed away. Al – Al had been with Alan the longest and knew him like no other. However, Alan was in the hospital at the time Al passed away and was not able to go to his funeral. It was another devastating blow. They were like brothers.

The deaths of his caregivers took some of the wind out of Alan’s sail. Life just wasn’t quite as bright as it had been. Alan’s health became more fragile after these deaths.

In the hospitalization during which his caregiver Al died, Alan’s dad was also hospitalized. He had pneumonia and was septic. The hospital moved Alan’s dad to the room across from where he was in NSICU. It made life for Alan’s mom much easier as she could just walk across the floor of the NSICU to go from one room to the other. During that hospitalization, Alan’s dad has his leg amputated below the knee. This was another adjustment the entire family would have to make.

In 2004, Alan’s mother was diagnosed with a rare form of skin cancer. She had surgery, radiation and chemotherapy. However, in 2007, the cancer returned. She passed away in November 2007. This death was devastating to Alan and his family. Alan’s health continued to decline.

In August, 2009, Alan’s dad health had declined and he passed away in September, 2009. Shortly thereafter, Alan was hospitalized with pneumonia. He was released after several weeks. However, in February, 2010, Alan returned to the hospital. He was told at that time, that he would need to spend more time on a ventilator (which until then had only been used at night). Alan chose not to and once he was stabilized, he checked himself out of the hospital AMA and a DNR order was placed with the hospital.

On January 6, 2011, Alan once again returned to the hospital. He again had pneumonia, but also had the MRSA bacteria in his lungs. He agreed to minimal treatment while he discussed his options with his family and friends. Once he came to his decision, he asked to speak with his doctor and a palliative care consult was requested. Alan and his team decided on an “end of life” plan which was withdrawal of the medication and eventually the ventilator. He asked to stay in NSICU where his familiar nurses were. The nurse who had been with him from day one and throughout his many other hospital stays, was the nurse on duty at the time of the “end of life” plan. Alan and she discussed how this was appropriate since she has been with him during his stays for the last 29 years. She always told him that he could not leave until after she retired. Well, it didn’t quite work out that way. She often says “well, he lived longer than Superman.”

So, on Wednesday, January 12, 2011, Alan’s friends and family, some traveling from other states, came to celebrate with Alan as they all said good-bye to him. Many stories, many laughs, Alan’s favorite foods and even beer (generally a no-no in ICU) were shared. Alan had become a very familiar face over the 29 years at John Muir and everyone wanted Alan to enjoy his final moments.

Alan’s sister and caregivers had been spending the nights in his room. That last night, his medicine was altered and all prayed for peace for Alan. His sister and caregivers promised him that he would not suffer. However, Alan awoke in the morning. This was extremely difficult on everyone, including his nurse. The team was called and brought in to discuss what should happen next. The medicine was again altered and this time, after Alan was comfortable, the ventilator was able to be withdrawn and Alan was immediately at peace. January 13, 2011.

The following Saturday, January 22, 2011, according to Alan’s wishes, a huge party was held in his honor.

Alan’s family and friends wanted to be able to honor Alan by creating a foundation that would provide some assistance to victims of spinal cord injuries. Alan was blessed to have resources available to him to get the majority of things he needed, i.e., medicine, medical supplies, a proper wheelchair, a proper bed, a ventilator, a disabled-equipped van, a computer, voice-activated software, a remodeled home where he could live independently, etc. We know that there are others who are in need and we want to honor Alan by helping other individuals who have suffered a spinal cord injury. It may be something as simple as helping them with some medical supplies that are no longer covered by insurance, or something as big as equipping a van with wheelchair accessibility. We hope over the years, we can reach out and touch the lives of many spinal cord patients.

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