No Time Like the Future: An Optimist Considers Mortality by Michael J. Fox
This is the third book Michael J. Fox has written since he was diagnosed with Parkinson’s Disease in 1991. He has been very active in working on PD issues since his diagnosis. In 2000 he founded the Michael J. Fox Foundation for Parkinson’s Research which has contributed substantial funding to research.
The book is interesting on several levels. It does reference his acting career which is substantial. Most of us know him for the Back to the Future movies as well as the very successful TV series, Family Ties and Spin City. We also learn a lot about Fox’s formative years in Western Canada where he was a pretty good hockey and box lacrosse player. He dropped out of high school in the 11th grade to go to Hollywood. But the book is mostly about dealing with Parkinson’s Disease day-to-day.
The book begins by recounting a fall that Fox had in the summer of 2018 in his apartment in New York City. He was alone. He was alone - an unusual circumstance - and he broke his arm in the tumble. With PD, falling goes with the turf, which is why it’s good to not be alone. Rule One for people with PD is, “Don't fall.” He fell.
Fixing the spiral fracture (a very bad one) was more complicated because of the disease, and Fox uses the accident and recovery as a metaphor for living with PD. You have to be extraordinarily careful and plan literally each step you take. He sums up the book on page one: “After 30 years of Parkinson’s, I have established a sort of detente with the disease. We’ve had a history together. I’ve long realized that control is out of the question; instead, I’ve settled for an understanding that requires adaptability and resilience. PD is like the persistent and cutting jab of a boxer, manageable if I’m willing to do a little feinting and weaving.”
Like many celebrities, Fox had alcohol issues which were not made any easier after he was diagnosed. He figured out that being a good dad to his first-born, Sam, was complicated by his drinking as was his relationship with his wife, the actress Tracy Pollan, whom he met on the set of <em>Family Ties</em> where they both worked. Things got really bad at the Fox-Pollan household, and by 1994, Fox was in a 12-step program and getting some serious therapy. He hasn’t had a drink since then.
Once he got sober, it was time to have more kids, something Tracy had resisted while Michael was drinking. They had twins, Aquinnah (the family summered on Martha’s Vineyard) and Schyuler (not sure where that name came from), and a few years later Esme was born. The kids have been very powerful and positive influences in their father’s dealing with PD.
Fox has an interesting take on children. He sees them as a time machine of sorts in that after they leave the nest, some of the things they had as kids - books, teddy bears, games - are still in the house and remind you of wonderful days gone by. An insightful take on time moving on.
Michael J. Fox loves dogs. While buying overpriced goods at the Chilmark General Store on Martha’s Vineyard he noticed a sign advertising a dog for adoption. (Jim Collins and I have frequented that store while on the Vineyard. Where else do you need to take out a loan to pay for your groceries?) It seems that the owner of this rescue dog had pooch allergies. Fox adopted the dog and named him Gus, who turned out to be as fine a companion as one could have. Just taking Gus on long walks helped Fox control his PD, not to mention the fact that dogs do give you unfailing devotion.
Mr. Fox announced his diagnosis to the world in 1998 and by 2000 he had decided to retire from acting. He was 31 years old. After that, he had lots of free time. He put together a PD-treatment team that developed a more holistic approach to treating the disease that went way beyond the standard medications. His symptoms calmed down a lot and he thought he could go back to acting. He was in several episodes of Scrubs, a comedy set in a hospital, which went well. He figured out that he could be an actor who happened to have Parkinson’s. His days of being a leading man were gone, but he could have a satisfying career as a character actor.
Fox did work on David Kelley’s Boston Legal and Denis Leary’s NYC firefighters show, Rescue Me, where he played a paraplegic and won an Emmy for his performance. He must have been pretty good.
Fox was in 26 episodes of CBS’s The Good Wife, where he played a sketchy lawyer with a neurological disease that made him shake, which is what he did with PD. Talk about method acting.
In 2009, Michael and his long-time producing partner, Nelle Fortenberry, went to Bhutan to film a network documentary on the only nation in the world that measures GNH (Gross National Happiness) as well as GNP (Gross National Product). They have a cabinet-level Secretary of Gross National Happiness, which is very cool. Television didn’t come to the kingdom until 1999, which may have something to do with why the country is so happy.
They stayed in the major city of Thimphu, the only capital city in the world without traffic lights. Police officers do traffic duty and it works.
While in Bhutan, Fox’s PD symptoms greatly abated. He’s not sure why, but he did do meditation and calming exercises like everyone else in the kingdom, which may have had something to do with his PD’s backing off.
The film crew left Thimphu to travel the country and climb the Himalaya Mountains as they went to various sites to shoot the documentary. The roads are narrow, with no guard rails, and hundreds of feet between your SUV and the ground below that you will hit if you’re careless. Fox remembers actor/author Spalding Gray’s admonition, “Never drive in a country that believes in reincarnation.”
They visit villages and temples for the documentary. At one point, Fox sits for hours cross legged with Buddhist monks, something he shouldn't have been able to do with PD. He also climbs a long way up a steep trail, something else that should be a no-no with PD.
The crew leaves Bhutan and visits India on the way home, a country that is a polar opposite of Bhutan - hot, crowded, noisy, lots of cows in the roads – but interesting.
Michael J. Fox took up golf in his 40’s, not something people with PD usually do. He loved the game but wasn’t very good at it. At one hole, it took him 15 tries to put the ball on the tee. He did improve and occasionally would have good rounds. For some time, his golf game was getting better faster than his PD was getting worse. That would change at some point. He and former Boston Bruin Cam Neely were buddies, and they took part in each other’s fundraising golf tournaments.
Living with PD means constant therapy and taking care not to lose your balance and fall. Fox lives in Manhattan and receives physical therapy in his building’s gym in the basement, a relatively easy commute. His office is around the corner from the apartment, which means that he has to walk 350 steps to get there, not always so easy. Turning is challenging as are the inevitable cracks in the sidewalk, all of which pose risks of falling.
Part of the treatment involves developing mental acuity so that you can walk as well as think about what could go wrong and how to avoid it. Your therapist also coaches you in how to think with PD. It is really hard.
Michael’s mother is 90 and still lives in Canada. In 2010 she traveled to her ancestors’ home in Belfast, Northern Ireland. The Fox family had a reunion which went well. Michael was nervous about falling on his mother or another older person which could hurt both of them.
Michael’s mother still drives and bowls at age 90. Her son’s PD makes driving problematic so at age 48, he stops when he can no longer control his right foot.
New Year’s Eve, 2017, saw the Fox-Pollans were at a party in the Turks and Caicos Islands, hanging around with Rolling Stone Keith Richards, who had ingested some substances to welcome in 2018. Michael was sucking down virgin pina coladas. As the fireworks went off and Keith’s craggy face was illuminated, Fox thought that Richards looked better than Michael J. Fox felt so he and Tracy headed back to NYC a few days early to figure out what was going wrong.
It turns out that Fox had a benign tumor growing on his spine. It’s not PD-related but, given the patient’s mobility issues, it's a big problem that needs to be taken out surgically, a very risky operation. The surgeon, Dr. Nicholas Theodore, is a world class doctor with a sense of humor who assures his patient not to worry because, “Who wants to be the doctor that paralyzes Michael J. Fox?” Later Fox is joking with the doctor before the surgery referencing his procedure by saying that, “It’s not brain surgery, to which Dr. Theodore says that ”brain surgery is much easier than what we’re talking about.”
The five-hour surgery was very difficult since the tumor was wrapped around the spinal cord which you can’t cut. It went well, and Michael spent two weeks in the surgical ward before moving to the hospital’s rehab wing. He had a lot of work ahead of him to learn how to walk again and he sometimes pushed too hard. Dr. Theodore was constantly on him not to take chances. A fall while the back is healing would be disastrous.
The recovery regimen includes physical therapy to get the motor skills back and occupational therapy to learn how to accomplish basic tasks known as soft skills. After 10 days in rehab which results in the patient’s being able to haltingly take 8 steps, it’s back to NYC for more intensive work at Mt. Sinai Hospital.
The rehab is complicated by the fact that Michael needs both PD therapy and back therapy. He becomes very close to his therapists who dominate his life for weeks and months. After two months, he can put his socks on, a major accomplishment. He’s also getting speech therapy to compensate for the damage PD does to one’s voice.
The patient needs 24/7 coverage so he has a night aide, Michael, who watches out for him, something Michael almost resents because he feels that he is in a petri dish being observed all of the time. He is.
After 6 months of work, Michael J. Fox can walk again and he goes home for his birthday. What do you give a guy who has lots of money and Parkinson’s Disease? Tracy Pollan donated to the Central Park Conservancy which allowed her to dedicate the park bench where Michael and dog Gus would sit and take a break during their daily walks. The inscription reads, “For Mike Fox and Gus. True New Yorkers.” That is a great present.
During the summer of 2018, the Fox-Pollans headed off to Aquinnah on Martha’s Vineyard as they did every year. Michael has a reading role in a movie that is being shot in NYC so he heads back to the city a few days early with one of his twin daughters, Schuyler. She heads off to a meeting, asking her father to not do anything until she gets back. Michael of course does stuff and falls and shatters his left arm. He calls his long-time assistant, Nina, and they take an ambulance to the hospital where the shattered arm is surgically repaired. As Mr. Fox wittily noted, “A broken humerus is no &*$#$*# joke. (Expletive blocked.)
It’s back to 6 to 8 weeks of rehab while the arm heals. Fox is at home with his family and friends. The arm is good as new, although the broken arm experience has thrown off his walk again and that needs a few more weeks of rehab, which he is getting sick of.
During the visit, he pulls up the initial X-Ray picture of the arm where he broke it in many places. Everyone “oohs and aahs” appropriately. Fox notes that it’s almost a relief to show people a picture of what’s wrong with his arm. The damage is obvious. Parkinson’s is so complicated and convoluted that there are no pictures that really illuminate the disease.
Michael J. Fox is 58 years old, the average age to be diagnosed with PD. He’s had it for almost 30 years. He is getting tired of all of it. “My optimism is suddenly finite.”
By fall, 2018, he’s finally in relatively good shape. He does a lot of work on his foundation, which is bringing in close to $100,000,000 a year now with the goals of “finding ways to relieve symptoms, halt progression, discover a cure, and halt PD.” He also watched a lot of TV, including game shows from the 1950s and 1960s and westerns like Cheyenne and Bonanza.
Politically, Fox is a liberal Democrat, but he developed a relationship with Ronald and Nancy Reagan. The president loved <em>Family Ties</em>, probably because Fox played a young Republican true believer, and invited the star to a White House State Dinner which went really well. Later, Nancy Reagan became an avid supporter of the Michael J. Fox Foundation. Maybe there’s a lesson here that we all can get along if we just try a bit.
Six months after his back surgery Michael and Tracy drove to Johns Hopkins University Hospital for a check-up to see if the tumor was growing back. He was nervous, but it hadn’t come back, which was very good news.
On the drive home, they stopped at a rest area on the Interstate. Michael bought a box of Cinnabon rolls, one of his guilty pleasures. A man walks up to him and asks if he’s Michael J. Fox, which the star admits to while trying to figure out how to not get involved in a long conversation. The man, Derek, thanks Fox for being an inspiration to him as he fights through PTSD as a result of his military service. Michael is blown away but is sure that Derek walked off knowing that ”I feel better than Michael J. Fox looks.”
Fox notes that 2018 was a terrible year. Tracy’s father died in January, and Michael had the back surgery and smashed his arm. The family decides to end the year on a positive note by going on a December safari to Africa with two other families, including the brood of George Stephanopoulos of ABC News, an old friend.
The trip goes well as long as they stay in the SUV while checking out leopards and elephants and other critters. They manage to get stuck in mud and it’s not good to be out in the wild after sunset. The driver calls for help and a small tour bus from a rival company frees their vehicle with a winch.
Back at the camp, they ate and chatted into the night around the large campfire. Each family has a big tent with real beds. One problem for Mike is that the walls are not solid and when he gets up in the middle of the night to go to the bathroom, walking without anything firm to grasp is dicey. He does fine.
As the book winds down, Fox talks more about the disease that has defined half of his life. Parkinson’s is a movement disorder because it limits your mobility. It also is a non-movement disease that changes your mood and sleep habits and tires you out. You will have trouble sometimes speaking and digesting food. Mike thinks that he’s having cognitive issues - difficulty remembering things - and he’s worried that it’s caused by Parkinson's. He knows that these problems might just be the result of normal aging where we all lose our fastball to some extent.
The disease can cause mental impairment - depression, paranoia, hallucinations. There are some effective medications for these problems but they are concerning.
Mike was very close to Tracy’s father, Steven Pollan, a lawyer who helped a lot of people during his career. He died of cancer in January of 2018, which was hard for Michael to take. Steven was a born optimist whose favorite expression to clients and his family was, “Just wait, kiddo, it gets better.” Michael would fall back on that hopeful thought whenever things got rough.
As 2019 dawned, Michael was a bit down about all that he had been though in 2018. He was becoming more fearful about what he was facing as well as being afraid of challenges ahead as yet unseen. But there were some good things which he chose to focus on. His neurologist said that his spine was getting much better and Michael knew that his back pain had gone away.
And the physical showed that his Parkinson’s had calmed down a bit, always good news.
He continued his therapy and headed off to Las Vegas in February for a mini-vacation with his golfing buddies, including George Stephanopoulos and Harlan Coban, a very successful author of many mystery books. Mike never thought he’d play golf again after his multiple surgeries in 2018 but he does. He is pretty bad but manages to hit some good shots and has a great time because he really enjoys golf. Playing the final hole, Mike hits a great straight ball that gets him close to the pin. He has trouble putting, but overall it was a great day.
Michael still had some acting left to do. He made a couple of guest appearances during the last season of The Good Wife, and did a couple of episodes of Kiefer Sutherland’s show about an accidental president, Designated Survivor. In 2020, Mr. Fox retired from acting for the second time, this time for good.
The Michael J. Fox foundation has contributed over a billion dollars to PD research since its founding in 2000. Every November the foundation hosts a major fundraiser in New York City with headliners like James Taylor, Brad Paisley, Chris Rock, John Stewart, and Tina Fey performing. Showing a short video of a PD patient with a special story is part of the program. Recently, the film was about Jimmy Choi, a Parkinson’s patient who ignored his disease for 7 years while being ticked off at the world and gaining 70 pounds. One day he fell while carrying his baby. No one was hurt but something clicked and he got help and treatment. Along the way, he started running and became a pretty good marathoner who ran 16 marathons to raise money for the Michael J. Fox Foundation. He credits the foundation for pushing him when he needed it as well as supporting him the rest of the time. Choi has become a poster boy for how to face PD and keep on keeping on.
Near the end of the book, Michael muses about where he is and where he’s going. He now sees things that he bristled against - wheelchairs, aides, having to do exercises to control the disease - as good since they give him a better quality and longer length of life. He especially values time with his family, which has increased because of the pandemic, a nice silver lining. The Fox-Pollans are all living at their home on Long Island, in a bubble with each other, with the kids working and going to school virtually. Everyone is doing jigsaw puzzles in real time.
He, like all of us as we get older, thinks back on his life: “When I visit the past now, it is for wisdom and experience, not for regret or shame. I don't attempt to erase it, only to accept it. Whatever my physical circumstances are today, I will deal with them and remain present. If I fall, I will rise up. As for the future, I haven’t been there yet. I only know that I have one. Until I don’t. The last thing we run out of is the future.” The last words of the book sum it up nicely. “Lemonade, anyone?”
Bob’s Take
This was a hard book to read. Living with Parkinson’s Disease is rough, even if you're a successful celebrity who can get the best treatment in the world. Michael J. Fox knows that despite having PD, he is fortunate in that he had the money and, perhaps even more important, unfailing family support.
- His wife, Tracy, comes across as the best helpmate ever as she helps him get through whatever he has to get through, and his children are always there for him. I can’t imagine living with PD without a strong personal support system.
- One point that came across is that supplementing the medication-based treatment with more holistic activities – meditation, exercising for pleasure, even golfing - greatly improves the quality of life.
- There also is an element of acceptance involved in moving to a better place with the disease. Michael and Jimmy Choi in the video at the fundraiser were much better off once they moved beyond rage and feeling sorry for themselves, both of which are certainly understandable feelings when you’ve been whacked by a pernicious malady.
- His kids have interesting names. The first one, a boy, is Sam. The twin girls are Aquinnah and Schuyler, and the youngest daughter is Esme. Those are unusual names, I’m not sure if that’s a celebrity thing or a Canadian thing or a Michael/Tracy thing, probably the latter.
The biggest takeaway is that the book puts life in perspective. People who don’t have serious illnesses are the lucky ones. The pandemic is rough and the country has been in better places, but it could be much worse. Be thankful for what you have.
On a lighter note, I’m also thankful that this book is not too long and much easier to read and write about than last week's take on the CIA. This summary is shorter than that one and much easier to get through.
