Michael J. Fox has given Parkinson's disease (PD) new visibility it, in my opinion, would never have had had he not taken up the fight on behalf of PD research. But he has done much more than speak of its importance. Through his foundation, he has raised an enormous amount of money to fund Parkinson's research, and this research has directly benefited the lives of PD patients and their families. Where does Fox get his optimism and his energy to do such good work? Fox cites Lance Armstrong, Christopher Reeve, and Muhammad Ali.
In this, the follow-up to his bestseller Lucky Man
(Hyperion, 2002), Fox has written a memoir of the last 10 years of his life. Fox was diagnosed with Parkinson's disease
at a very young age, 29, and has had the disease for more than a decade. Judging from the account in his book, he keeps up a fairly hectic schedule. His advocacy work has him traveling the world, doing non-stop interviews, meeting with politicians of every stripe and variety, conducting non-stop fundraisers, asking for money from the rich and powerful and doing all this while raising a family of 4 kids. Some of the loveliest passages in the book contain his reflections on being a father and a husband.
The tone throughout the book is one of modesty, gratitude and good-humor. The man can write! He has a great sense of humor. When asked by David Letterman what it's like to raise a two year old, Fox answers that it boils down to being on a constant suicide watch…the toddler is busy trying to destroy himself by pissing in electric sockets, downing anything and everything that comes near the mouth and attempting to fling himself down stairwells and out windows. Anyone who has had kids will nod their heads in agreement with this assessment.
Fox also displays a healthy sense of humor about his PD symptoms, describing scene after scene of his symptoms intruding into meetings with the rich and famous. Fox’s PD must be taken as somewhat unusual given its early onset and the frequency with which he has dyskinesic symptoms
. To some extent, he says he chooses those over the akinetic
symptoms, and who can blame him? As Fox knows and writes, “Parkinson's disease takes many forms — for some reason, everyone gets their own version.”
Fox never struggled with depression, but most people with PD have to at one point or another. Fox apparently had successful brain surgery, but that surgery does not work well for everyone who goes through it.
He has been in some ways lucky, as he himself would be the first to point out. There is a whole section in the book devoted to the role of faith in his life. He clearly is a man searching for a form of faith that is his. His wife Tracy is Jewish, and they have raised their kids in the Jewish faith. Fox has drawn support from the Reformed congregation he attends with his wife. But he has also continued his search for faith in the tradition in which he was raised - a broadly Anglican tradition. He had childhood friends who were evangelicals, and he made it a point to interview a Reverend Cooper - an evangelical preacher who preached against the idea that God would send people to hell and was ‘excommunicated’ for these ideas - for his book. Years ago, he struggled with driking problems, and one gets the impression that the spirituality of AA meetings informs his won spirituality as well.
Throughout the book we get Fox’s views on the stem cell controversy, a history of his political efforts to elect politicians in favor of embryonic stem cells research, his disappointment when President Bush restricted research on stem cells and his elation when President Obama lifted that ban. Here we come to one minor failing of the book, from my point of view. While Fox emphasizes the fact that he believes that many opponents of embryonic stem cell research are motivated by noble concerns, he never really lays out the thorny ethical issues involved. We never get to hear the major question that motivates the concerns of ethicists, namely: Where do you draw the line when you use others for research purposes? As Fox points out, the ‘others’ concerned here are a mere clump of cells that would be destroyed anyway if not used for research. But as the ethicists would say, it’s the principle of the thing (that cells are a part of human life) that matters.
I agree with Fox that, in this case, the cells would be destroyed anyway so why not use them to benefit others? In any case, advances in stem cell research may make the whole debate less pressing as scientists learn more about other sources of stem cells such as those derived from skin. Who can say if Fox’s advocacy of stem cell research led to Obama’s reversal of the Bush ban. My own feeling is that it was crucial. Fox made the issue a front page political issue, thus drumming up political attention. Fox would likely claim a more modest role in the whole drama.
Everyone with PD and everyone who has a loved one with PD should thank Fox, not only for his advocacy of PD research but also for putting a human face on PD -- for de-stigmatizing the disorder and for giving us another beautiful read in this new book.