My Boyfriend Has a Scary Genetic Predisposition. Should I Still Marry Him?

I (34F) am encountering a tough one with my boyfriend (35M). An extremely rare paralysis runs in his family, and I just learned that it’s genetically predisposed; the heritability exists but the probability is unknown. If a male develops such a disease, it tends to start between 40-60yo; for female, who are the more common patients of the two genders, from 20-30yo. It means that it’s not impossible that he becomes paralyzed in a decade. If we have children, which I absolutely want and he cautiously swings between whether to have or not, I will worry for my children my entire life as well as how to tell them about it when they grow up.

He and I have been together for 2 years. We started our relationship by living together. He loves me to the bone. We are very close, and being next to him is my favorite thing to do. Even though there are problems like where to live in the future and language (we choose to speak his language at home rather than English), I’m pretty confident we can find a way out. But for the disease, it tears me that I would develop severe stress because of it, and it’ll take a toll on our relationship. I have moved to my previous city for a temporary job in order to have a good thought over this crucial decision. I feel like facing a dead end, especially considering I’m 34 despite being attractive and successful. It’d be very appreciated if you could shed some light on it and widen my perspective. Thank you.

-Odell

“The probability is unknown.”

Therein lies the problem.

If someone could give you an actuarial chart with real numbers, perhaps you’d feel better, but without that, all you have is your imagination and your fears of the worst-case scenario.

Since you didn’t mention what this condition is, I couldn’t do further research, so allow me to relate a personal anecdote that I’ve never shared in twelve years of blogging:

My father had a genetic predisposition for something called hypertrophic cardiomyopathy.

It’s the thickening of the left ventricle and it has the potential to trap blood and cause a heart attack.

Boston Celtics star Reggie Lewis famously died of this.

So did my father, on December 31, 1998.

He knew about his condition. He was on beta blockers. He and my mom never told me.

After he died, I learned these facts.

I learned that my paternal grandmother had the same condition and lived to 89.

My sister and I got tested (at age 23 and 26) and discovered we don’t have it.

I don’t know if my kids have it.

I honestly hadn’t even thought about it until now.

You asked about widening your perspective. Here it is, my friend.

You can spend your whole life fearing the worst.

Sometimes, it happens.

Most often, it does not.

My argument is that even when it does, it is better to have loved than to have regrets.

Quick example:

I wake up appreciative that I’ve had the opportunity to find true love, get married and start a beautiful family.

My cousin Todd was 39 when he got diagnosed with multiple sclerosis. He was a happily married retina surgeon who never wanted children. Faced with his own mortality, he and his wife decided to have a baby. Todd is now 59. His baby was the valedictorian of her high school and is now a sophomore at Tufts.

With care and luck, my cousin’s MS didn’t progress. He still drives and skis and paints and works out. He and his wife are building a home in Maine in anticipation of his retirement.

Ask Todd’s wife if she would have regretted having a baby even if his M.S. deteriorated.

Ask my wife if she would have regretted marrying me if I died of a sudden heart attack like my father.

Ask my Mom if she regrets being married for thirty years, only to become a widow at age 51.

You don’t have to. You already know the answer.

You’re treating a hypothetical like a certain death sentence, but it’s not.

What is certain is that we’re all going to die one day.

I don’t wake up every morning worrying about when I’m going to get cancer.

I wake up appreciative that I’ve had the opportunity to find true love, get married and start a beautiful family.

And if today is somehow my last day – and I’m banking that it won’t be – I can promise I will have no regrets about my decision to embrace love, marriage and children.

Neither will you, Odell.