When I saw the movie “The Theory of Everything,” I burst into tears at the end. The movie, about the marriage of famed physicist Stephen Hawking and his wife Jane confirmed all of my worst fears about my own disability.

The message seemed to me to be that Hawking—saint that he was—was giving his wife the freedom to be with the able bodied man she loved.

True, he had found love with someone else too, his nurse Elaine Mason. But to my mind it seemed that he was ending their marriage more for Jane than himself.

If the great Stephen Hawking had to step aside for someone able bodied, how could an ordinary disabled person like myself expect my husband to stick around? My fears and insecurities all came to a head as I watched the film.

Myth or Reality?

I decided to read Jane Hawking’s memoir, which the movie was based on, Traveling to Infinity. What I discovered was a complex story with a far different message than that of the movie.

It was a book about disability in a marriage—not sugar coating the struggles but also celebrating the love and happiness the couple shared during their 25 plus years together.

Jane was responsible, day after day, for her husband’s needs. He required extensive personal care, including toileting, bathing, dressing, and so on.

The couple did have a network of friends, students and relatives to help out, but ultimately it was on her shoulders. Stephen also suffered terrifying choking episodes that sent him into panic. Jane had to be ready to call an ambulance whenever he ate. She often had to hold him in her arms and use hypnotic language to relax him.

I related when I read about these episodes. I can’t tell you how many times my husband has had to talk me down from anxiety when I’m in a pain flare, or experiencing some other terrifying symptom.

So, what about the end of their marriage? Was it, as the movie seems to imply, an act of self sacrifice on his part? Did he set her free to marry the man who could be what he couldn’t?

Yes, there was a man in Jane’s life, Jonathan Hellyer Jones, but he was also in Stephen’s life. The three of them spent a lot of time together and Jonathan did a lot to help and support the two of them. The movie shows some of this in a positive light.

And yes, Jane did marry Jonathan a few years after their divorce. The pair loved each other and always had.

But what never comes out in the movie is that Jane was devastated when Stephen left her. She felt the way any rejected spouse might—sidelined, unloved, replaced by a newer model.

When I read that, I breathed a sigh of relief. Stephen wasn’t a saint. He left his wife, even though it broke her heart. He did it when he’d first become famous. Celebrity went to his head—or so Jane says. She also writes that the nurse played on this by flattering him.  

We’ll never know the full story of course. Jane’s memoir says she, Stephen and Jonathan had a stable and happy life as a group, and that she and Jonathan were never lovers while she was married to him. But according to Time Magazine, Stephen was jealous of the way Jonathan intruded on their marriage and took on husbandly duties.

Hawking was a real person, with human flaws. Jane loved him, and he loved her. Disability did make their marriage complicated, as did the fact that he was such a towering figure in the scientific world. Fame probably did go to his head, but considering all that he had to go through with his illness, it seems forgivable.

Jane does use some terms in the book that made me uncomfortable. She describes taking care of Stephen as “drudgery,” and characterizes their relationship as “master/slave.” I don’t think she meant that in the enjoyable, kinky sense.

She talks too about the good times, and the deep connection they shared. The movie makes it seem like the nurse is better than she is at understanding his needs. This seems unfair to Jane, who did her utmost to care for him and tune into his every signal.

In the book, Jane talks about how she used the money from his bestseller A Brief History of Time to buy a house in France. She had extensive construction work done to make it accessible for him. So, it seems she didn’t expect or want him to leave.

The Hawking Effect

The fact is, Stephen Hawking’s very existence makes life complicated for many disabled people. First, he was a genius at the level of an Einstein. This isn’t wrong or bad in itself. But it makes us ordinary disabled people seem like underachievers.

The unspoken (and sometimes spoken) question we get asked is, “why aren’t you doing something significant with your life, like he did?”

Disabled writer Zipporah Arielle talks about how when she mentions using a wheelchair, people bring up Stephen Hawking, as if that’s relevant.

She asks, “why are nondisabled people allowed mediocrity, and I am not?”

He’s also held up as an example of someone who battled his disease and won—unlike the rest of us losers who can’t seem to overcome our symptoms and in fact often die within the typical prognosis period. The implication there is we just need more “fight” in us, like he had.

It’s true that he lived an astounding 55 years after his ALS diagnosis. The typical lifespan is five to seven years.

The movie plays on this. Jane makes an impassioned speech to her future father-in-law about how she and Stephen plan to fight his disease.

The book tells a different story. She does use the word “fight” in terms of his ALS—or as they called it, motor-neuron disease—but it’s in the context of how difficult their lives were. Because he was successful, people believed he must have won the fight against his illness. Nothing could be further from the truth.

She writes:

“…motor-neuron disease had not been conquered; it was still advancing at a slow but relentless pace. To the immediate family circle, the effects were devastating and the demands punishing…we were victims of our success.”

She also talks about how little help they got from the government, even though they lived in the UK, where there’s socialized medicine. In the end, they got a grant from the MacArthur foundation for his nursing care.

For all of us who struggle to get the help and support we need, it’s affirming to learn they had these struggles too. I was also surprised to learn that Stephen had horrible experiences with doctors and didn’t want to go to them. In the end, he had to. But reading that someone as important as him felt mistreated by doctors was affirming as well.

Overall, the book made me feel better. Marriages do end, and the reasons can be complicated. Disability is hard on caregivers, and it also brings rewards. Jane recognized both sides of this coin.

Top photo: Eddie Redmayne as Stephen Hawking in “The Theory of Everything.”