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Michael J. Fox’s No Time Like the Future: A Book-Review Essay by Peter G. Beidler

Tuesday February 22, 2022

FOR THREE DECADES, the actor Michael J. Fox has been one of the most visible public faces of Parkinson’s disease. Other famous men and women have had the disease — Muhammad Ali, Deng Xiaoping, Janet Reno, Pope Paul II, Davis Phinney, Alan Alda, Robin Williams — but Fox’s long string of successful television shows and movies, his well-funded research foundation, his regular production of cheerfully autobiographical books, and his handsome, youthful, smiling face have made him the poster child for a disease that had before been associated mostly with palsied bent-over old men in wheelchairs.

The future of Parkinson’s

I purchased Fox’s new book with particular anticipation because its title — No Time Like the Future — seemed to promise cheerful speculation about what the future for people with Parkinson’s will be like. I was also intrigued by his subtitle — An Optimist Considers Mortality — which seemed to promise a positive way to think about the kind of death that people with Parkinson’s can anticipate.

I was disappointed. The book has little to say about either the future of Parkinson’s disease or about an optimistic way of thinking about dying with Parkinson’s. Fox has some positive things to say about his dog Gus, his love of the sport of golf, his golfing buddies, his appreciation for his wife Tracy, his pride in their four adult children, their family vacations, and their travels. But in his new book Fox seems to be more interested in chronicling the series of setbacks he suffered in the year 2018.

Fox does write about his health, but most of what he says about it is only tangentially related to Parkinson’s. On a filming trip to a Buddhist monastery in Nepal, for example, he falls and cuts his left-hand ring finger. It gets infected and swells so badly that he almost loses the finger. A doctor in New Delhi saves the finger by cutting off his wedding ring.

The main medical issue discussed in No Time Like the Future is Fox’s surgery to remove a benign tumor high on his spine. The surgery is delicate, complex, and

dangerous. The operation is successful, but it is followed by an agonizingly slow and painful sequence of physical therapy as he learns to walk again.

The other medical issue that he talks about in this book is a bad fall that he takes when he returns from Martha’s Vineyard ahead of the rest of the family so that he can accept a cameo role in a movie. Alone in his kitchen in their Manhattan apartment, he stumbles and falls to the floor, smashing his left arm in several places. His recovery from that fall is again agonizingly slow. He again has to engage in a long and painful sequence of physical therapy as he tries to regain his mobility.

No Time Like the Future is darker than his earlier books, Lucky Man (2002) and Always Looking Up (2014). In Lucky Man he showed how getting diagnosed with Parkinson’s disease helped to rescue him from the self-destructive downward alcoholic spiral that he was on. In Always Looking Up he describes the speech he heard by a prominent neurologist stating that with proper funding, scientists could in five or ten years find a cure for Parkinson’s. That speech inspired Fox to establish the Michael J. Fox Foundation to raise funds to pay for research that would lead to that cure. This new book, No Time Like the Future, reads in places like a repudiation — or at least a re-contextualization — of the smiley-faced positive and hopeful messages of his earlier books:

Have I oversold optimism as a panacea, commodified hope? Have I been an honest broker with the Parkinson’s community? The understanding I’ve reached with Parkinson’s is sincere, but the expression of it risks being glib. I have made peace with the disease, and I might have presumed that others had, too. In telling other patients, “Chin up! It will be okay!” did I look to them to validate my optimism? Is it because I needed to believe it myself? Things don’t always turn out. Sometimes things turn shitty. I have to tell people the whole deal. (p. 160)

The year 2018 turned out pretty shitty for Michael J. Fox, and he doesn’t try to deny that.

A dog’s life — and death

Fox finds a way to talk with cautious optimism about his own mortality by talking about the mortality of his dog Gus. Although Gus is by human standards an old dog who is, like Fox himself, approaching his death, Fox thinks that he can “forestall” Gus’s death and “negotiate” a longer life for his pet:

Gus is twelve. Shouldn’t be old for a dog, but it is.

[…] Given Gus’s size and his genetic mélange of breeds, he’s not expected to live much past fourteen. The way I see it, though, that’s negotiable. Whatever the threat, I can attempt to forestall. There are effective meds for everything that ails a canine. If Gus needs an operation, he has a great vet. If a time comes when he can’t use his hind legs, I’ll have rear wheels made for him; a cart he can propel with his front paws. (p. 221)

For Fox, Gus’s meds, operation, and wheeled cart provide meaningful parallels to his own meds, his own operations, and his own wheelchair: “Gus puts aging, and ultimately mortality, into perspective for me. I’ve availed myself of each of these options in my medical history: the standard cocktail of PD meds, surgery on my back and my arm, and the use of a wheelchair. All to extend life and hopefully make the remainder of the ride as comfortable as possible” (p. 222).

Fox’s goal is no longer to find a cure for Parkinson’s, no longer to encourage his fellow Parkinson’s patients to see how lucky they are to have this disease. Now his goal is merely to “extend life” for himself and to make the shitty parts of his life not even “comfortable” but merely “as comfortable as possible.”

For many of us folks with Parkinson’s, the shift

from a cane to a walker is an easy one, but the shift from a walker to a wheelchair is frightening indeed. With a cane and a walker we can still feel independent, still keep ourselves vertical, still stand upright, still get ourselves to the parking lot or the curbside, still get ourselves into the back seat of a friend’s car and GO! We can still dress ourselves, still feed ourselves, still monitor our own meds still use public toilets, still climb stairs. But when Parkinson’s has robbed us of the ability to walk safely, the only safe alternative is the wheelchair. “At some point,” Fox says with grim conviction, “using a wheelchair is a likelihood: it’s only a question of when” (p. 120).

At first Fox hates having to use a wheelchair, even in airports, because it puts him down on a level with other people’s asses, elbows, and luggage: “No one listens to luggage” (p. 121). To consent to a wheelchair is to step down from standing at eye-level with human companions to sitting at butt-level with their suitcases, pets, and farts.

Fox eventually grows more appreciative of wheelchairs. One night he accompanies Tracy and his three daughters to a sold-out Vampire Weekend concert at Madison Square Garden. He engages an usher to push him to his seat in a wheelchair: “I find that I’m actually okay with using a wheelchair now. I see it not as a tyrant but as a tool” (p. 224). He has a lovely time that evening at Madison Square Garden, listening to the music, loving his family, feeling like he is part of

something magnificent. It suddenly occurs to him that the expression made famous by Hillary Rodham Clinton’s book, It Takes a Village, applies to him:

I’ve come to accept that I take a village. I’m part of the village, too; I contribute in every way I can, and try to be a solid citizen. I feel fortunate to be here, in this place, with these people that I love. The effort is 100 percent worth it — the music, the girls [that is, his daughters], the hint of pot smoke, and, of course, Tracy.[…] She is sublimely in sync with the pulse of the concert, and seems more like my girlfriend of three weeks than like my wife of thirty-one years. (p. 125)

Fox finds himself on his feet and dancing while holding on tight to the hand rail. Then he finds himself singing along with the chorus the signature lyrics to “Harmony Hall.” Fox makes one of the lines from that song his personal mantra: “I don’t wanna live like this … but I don’t wanna die.” Fox interprets the line in relation to his own situation:

The truth is, I don’t want to live like this, but I have found a way to accept the fact that I do. For every perilous trip across a room, when my meds are off and my steps are halting and erratic, there are also times when it all slips away. In those moments,

like this night out with my family, I feel joy and contentment. In those moments I have everything I need. (p. 226)

“Everything I need.” We might have hoped that Fox had broadened the scope of his concerns to include not just his own needs but the needs of his family, especially his wife. He speaks always with appreciation for his wonderful Tracy. There is no question that he loves her and values her, but it is a bit troubling that he does not acknowledge more directly his awareness that his Parkinson’s sharply curtails not only his freedom, but also hers. I wonder if he has read Barbara Sheklin Davis’s Advice from a Parkinson’s Wife. [Nisha: can you include here a link to my review of Davis’ book?]

The year 2018 was especially rough for Michael J. Fox. We get that. But it must also have been especially rough for his wife. We don’t get that from reading his narrative. There is little evidence that he thought much about the implications for her of his decision to have the tumor surgically removed from his spine or his decision to have his smashed left arm repaired.

None us want to give up walking and biking and driving and bussing, but when we must, someone else will have to take us to the places we need — or think we need — to get to. None of us want to give up feeding and dressing and toileting and showering and medicating ourselves, but when we must, someone else

will have to do all that for us or with us, or arrange for — and pay for — another person to do them for us or with us. None of us want to give up our self-reliance, but as our disease robs us of one ability after another, we must rely more and more on someone else. For those of us who are married, that someone else is most often our spouse.

For the most part, Parkinson’s grinds slow. Each day is pretty much like the last one and the next one. But occasionally something unusual happens: a new kind of stumble, a new problem diagnosed, a chance to try a new medicine, an opportunity for a dangerous surgery, or a need to switch to a wheelchair.

Those are all natural transition spots that signal an opportunity to think about what comes next. Most of us, most of the time, will say “yes, let’s do whatever we can to extend our lives.” But one of these times perhaps we should say “no” or at least pause before we yield again to the automatic “yes.” Among the many questions to think about during the pause is this one: Honestly now, if I were to base my answer solely on what would be best for my spouse, would my automatic “yes” sound more like, “Well, actually, hasn’t she suffered enough taking care of me? Hasn’t she earned the right to a life free of the need to be my constant caregiver?”

I would have welcomed some acknowledgment of the fact that if Michael J. Fox rises up after a fall, his

rising comes at the expense of others who have then to devote even more of their lives to keeping him propped up. I would have welcomed some awareness that others also have a right to a future, but that their future is inextricably tied up in — that is, constrained by, limited by — his future. Fox knows that his own future is grim: “Parkinson’s will render me frozen, immobile, stone-faced, and mute — entirely at the mercy of my environment” (p. 65). Is it unreasonable to wish that he had registered more compassion for his “environment” — the members of his family who will feel obliged to take care of him when he can no longer move his limbs, when he is permanently bedridden, when he can no longer register any facial expression or emotion with a smile or a frown or even a grimace, and when he can no longer speak — when, that is, he becomes: “frozen, immobile, stone-faced, and mute — entirely at the mercy of my environment.”

When we folks with Parkinson’s get like that, who will be looking out for the Tracys and the Annes and the Barbaras of the word? Did we ask, before we said, “Yes, of course,” to that next life-extending medication or surgery or tool, whether it was the right choice for her? Did we ask ourselves only whether we want to live like this? Did it occur to us to wonder whether she wants to live like that?

Michael J. Fox gives us an occasional glimpse into his awareness of his own mortality: “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” (p. 224). To run out of future, of course, is to be dead.

We all owe a debt of gratitude to Michael J. Fox for all that he has done to sponsor research on Parkinson’s disease. From the beginning, the four goals of his Fox Foundation were “to relieve symptoms, halt progression, discover a cure, and solve PD” (p. 168). Those are noble and lofty goals, but Fox himself is as disappointed as the rest of us that, twenty years later, they remain unfulfilled goals. The symptoms are by and large still with us, the progression of the disease is still relentless, no cure has been found, and no one has yet “solved” Parkinson’s. Fox is proud that in two decades his foundation has spent $1 billion on research: “One billion dollars is a lot of money, and twenty years seems like a long time, but in research terms, we’re high-velocity. In the quest to cure Parkinson’s, we’re absolutely certain we are the tip of the spear” (p. 219).

In his absolute certainty about the coming cure, it seems not to have occurred to Fox to think about adding a fifth, more immediate goal: to help people come to terms with the fact that for us the problem is not that Parkinson’s will kill us before they find a cure, but that it may not kill us. It may, rather, keep us alive well past

the dreaded wheelchair phase and into the phase that almost no one mentions, the bed-bound phase.

To lie there in the company of our feeding tubes and air hoses and bedsores day after day, unable to move, to speak, or smile — that is, “frozen, immobile, stone-faced, and mute” — is a death-in-life that no one wants. Fox mentions only one way to avoid such a dying: to find a cure. He does not mention that there are other options, such as end-of-life planning, appointing and educating a tough-minded power-of-attorney for health-care decisions, exploring death-with-dignity laws, and voluntarily stopping eating and drinking (VSED).

In a recent (January 2022, p. 38) AARP Magazine, Fox tells interviewer Andrew Corsello, “I’m really blunt with people about cures. When they ask me if I will be relieved of Parkinson’s in my lifetime, I say. ‘I’m 60 years old, and science is hard. So, no.’ . . . I don’t have a morbid thought in my head. I don’t fear death. At all” (p. 38). In his next book, perhaps Michael J. Fox will tell us more about how he manages to banish that morbidity.

 

 

 

About the author: After teaching English for forty years at Lehigh University in Bethlehem, Pennsylvania, Peter

G. Beidler moved to Seattle in 2006. Not long after he retired, he was diagnosed with Parkinson’s disease. He has volunteered frequently over the years since then at NWPF. He and his wife Anne have generously contributed most of the books that constitute the NWPF’s lending library. Pete has published two important books about the disease: Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books about Parkinson’s Disease (2018) and Parkinson Pete on Living and Dying with Parkinson’s Disease (2020). Copies of both books are inexpensively available from Amazon.

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Making Spousal Relationships Work
Parkinson’s and Luck
Strength. Courage.
Resolve to be a Better Caregiver!
Update from the Parkinson's Action Network
Strategies to Achieve our New Year’s Resolutions and Goals
Movement is Medicine
2014 2013 2012
Most popular posts of 2012
What are you grateful for this holiday season?
How can I tell whether medications are wearing off or Parkinson’s disease is progressing?
Can a person with Parkinson’s give blood?
When is the right time to start Levodopa?
Can acupuncture help PD symptoms?
Support the Caregiver in your Life
Power of the mind to move treatment further
Top 10 Foods for Parkinson’s (and counting!)
How can I prevent dizziness?
What can you tell me about laser light therapy and Parkinson’s
What is music therapy?
Should I take Coenzyme Q10 for my Parkinson’s?
How do I treat my cough at night?
Parkinson’s fitness programs need to be tailored to the individual to get results
Carrying the Olympic Torch for Parkinson’s today
Coffee reduces risk of Parkinson’s. What about other foods?
Facts about depression
How can I find a good doctor who is knowledgeable about PD and is caring as well? My doctor does not always listen.
Help for constipation
Sex, Intimacy and Parkinson’s
Does DBS affect speech?
Walking and balance can significantly impact quality of life- but is treatable.
Depression is common with Parkinson’s
Ode to Parkinson’s- Poem from Member
Music Enhances Brain Activity
How does posture change with Parkinson’s?
What is important to you?
Are hallucinations caused by Parkinson’s?
Hot Off the Press – Neupro approved by FDA
How do I find a Parkinson’s physical therapist to keep me exercising?
Does Azilect slow disease progression?
Manage nausea from medicines
Is delaying medication harmful?
Advice for newly diagnosed
Is Parkinson’s Hereditary?
Medication Timing
Is gambling a side effect of medicine?
Medication Assistance
Does stress cause Parkinson’s?
When to see a physical therapist
FDA approves DATScan
Coconut Oil
Protein’s effect on medicine
Restless Leg Syndrome