Well-Being//

Looking Outward

How a Mixed Up Appointment Changed The Mental Mindset of One Patient

Not all changes made by surgeons occur in the operating room. In fact, one of my most meaningful impacts as a surgeon came as a result of happenstance during one office visit.

Ten years ago, a man and his wife came to see me by accident. They were referred to see a pediatric neurologist but their insurance sent them to see me, a pediatric neurosurgeon, instead. They came to discuss working up their children for a rare neurodegenerative disorder because Dad had just been diagnosed with the disease.

This disease would slowly alter his personality, motor function, and memory. Eventually, it would lead to his death. Because this disease is an autosomal dominant (genetic) disease, it can be passed on to the children of those affected. It also means that the children can have genetic testing to determine if they will get the disease.

I did not realize the mistaken referral until about half way through the visit. Once we all realized that I couldn’t help them with their question, for some reason we decided to continue talking. His wife told me how hard their lives had become since the diagnosis. He wasn’t showing any symptoms or neurological issues yet, but had become severely depressed. He couldn’t engage with his family and was constantly sad.

He admitted to being depressed – not because he was sick and would die – but because each of his two children had a 50% chance of having this merciless disease. He wouldn’t be able to help them (or himself) and neither could the medical profession (there is no treatment for this condition). But his wife wanted her family back, for as long as it was possible, especially because her children could feel the change.

What does a neurosurgeon have to say? My dad died of ALS only a few years earlier, so there was much to discuss, but very little of it was medical. We spoke for about an hour and while I can’t remember most of the conversation, I do remember the thought that went through my mind which I verbalized to them and specifically to him.

His children will eventually find out if they have the disease and there is nothing he can do about it. But he is raising them and they are paying attention to their father. His behavior will matter to them. I asked him what legacy he wanted to leave for his sons because if they have the disease, they will remember how their father dealt with it and try to emulate him. He would want to teach them not to allow this disease to take any more of their lives (through depression) than it would be by the inevitable neurological deterioration. It would be his final gift to his kids.

If, mercifully, it turned out they didn’t have the disease, his strength and stability would enrich their lives. Future problems would never destabilize them emotionally because their father was graceful in the face of a terminal illness.

Eventually I wished them well and we said goodbye. I never heard from them again. At least not directly.

A few years later, my wife, who is a dermatologist, came home and told me a patient came to her office. This patient was the wife from many years earlier who eventually realized her dermatologist was married to me! During the visit, she told my wife about her husband’s neurodegenerative disease and how we had met that one time many years ago. She recounted how her husband changed after our conversation, by improving his attitude and by extension, their lives. He had become more engaged, present and wanted his children to see him as a noble warrior against his disease. He still had this terminal disease but he refused to stop living. He was still alive and began living with passion. She attributed it to our conversation and thanked my wife.

His change from a withdrawn patient to a noble warrior was not because of a few words uttered by a mistaken neurosurgeon. He found this strength because he focused on something greater than himself to fight for: his family. He would become something better because his children needed it. We should all look outward for the perspective that will make us the best versions of ourselves. Not surprisingly, it will also make us the happier version of ourselves. 

Share your comments below. Please read our commenting guidelines before posting. If you have a concern about a comment, report it here.

You might also like...

Community//

Social Impact Heroes: Why Dr. William Novick travels across the world to save children with congenital heart defects

by Yitzi Weiner
Community//

Social Impact Heroes: How Emily Rogath Steckler is raising awareness and funds to treat and cure Infantile Neuroaxonal Dystrophy (INAD)

by Yitzi Weiner
Photo: SImon Rae
Community//

Are you embarrassed of your special needs child?

by Linde Thomas

Sign up for the Thrive Global newsletter

Will be used in accordance with our privacy policy.

Thrive Global
People look for retreats for themselves, in the country, by the coast, or in the hills . . . There is nowhere that a person can find a more peaceful and trouble-free retreat than in his own mind. . . . So constantly give yourself this retreat, and renew yourself.

- MARCUS AURELIUS

We use cookies on our site to give you the best experience possible. By continuing to browse the site, you agree to this use. For more information on how we use cookies, see our Privacy Policy.