My significant other’s close relative was recently diagnosed with a genetic disorder that has become debilitating for her. My significant other runs a high risk of having the same disorder. As a result, my young children also run a high risk of having the same disorder. We’re waiting for tests to be performed. It will be a couple of months before we know anything for sure, but the situation has caused my mind to race. Let me explain where I am at because I know many of you have been there before too…
I have put off any pursuit of a ‘spiritual life’ for years. I have been busy raising kids, working a tough job, and taking care of my relationship with my wife to be the best it can be. Life has been easy for the last decade. It has been too good to be true if I am being honest. I love life and everything about it. I didn’t have a need to pursue meaning outside of my day to day or a relationship with ‘God’ or Jesus or Buddha. I had what I needed right in front me. For most of my life, I’ve waivered back and forth on what I believe. Sometimes I felt strongly that there is a higher power, greater good, all encompassing love, whatever you want to call it. Other times, I find that whole idea ridiculous considering the terrible, evil, and seemingly meaningless tragedies you see in the world. That’s where I am at today.
I have wondered for a long time how I will react to tragedy. Can I be the man my family needs me to be or will I crumble under anxiety? Well, I guess we’re about to find out. I am struggling to understand why someone can be born with a fault that they have no control over and will negatively affect them for the rest of their lives. That someone could be my kids. They are the most innocent things I have ever seen and it is nearly unbelievable that they could have a genetic disorder that is no fault of their own. How can you find meaning in that? It seems like an irrational struggle to try to find some sort of strange meaning in that.
I am fine. I am determined to be strong for my family as we figure out diagnosis’, but this situation has really brought my spiritual life and lack there of back into the forefront of my mind. I just don’t see how these situations can exist and you still find a way to believe in something bigger than yourself without it just being shallow hope for comfort in the face of tragedy.
I am not asking for sympathy. I am asking for practical advice on how you’ve dealt with tough times successfully and/or helpful thoughts, resources, opinions, etc. on how you’ve navigated pursuing or not pursuing (and why) a spiritual life.
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> I am struggling to understand why someone can be born with a fault that they have no control over and will negatively affect them for the rest of their lives.
because evolution doesn’t care about your feelings. it’s a sloppy, cruel system that lurches around, almost always using “good enough” to do its work.
> That someone could be my kids.
not to be glib, but did you think you were special? we’re all in this meat grinder together, and eventually it hits everybody.
> How can you find meaning in that? It seems like an irrational struggle to try to find some sort of strange meaning in that.
so, the way humans find meaning is in other people (you’ve got that covered. no matter what happens moving forward, you have meaning in your wife and kids), our own actions (what you’re struggling with now. but loving your family through whatever happens will continue to bring you meaning. being what they need will. perhaps you can become an advocate for research into this disease, and that will bring you meaning. it’s all about how you answer the questions life asks you), and finally in suffering with dignity. this is of course a last resort, and avoidable suffering should be avoided, but it is a legitimate source of human meaning.
> practical advice
read and digest “man’s search for meaning,” by frankl. while he winds up on his religion (judaism) as *a possible* source of meaning, it’s also clear it’s a useful thing for people to hang on to, not some universal truth about the reality of the universe.
What’s been helpful for me in pursuing spirituality is first accepting that it’s ok for me to believe whatever I want. I don’t have to pick a pre-made spirituality or philosophy (religion) and I can define a higher power in whatever terms I choose, or not define it at all, or change how I define it at any time. There are no rules.
I’ve found it benefits me to believe in a power greater than ourselves, which I tend to loosely think of as a predisposition for loving one another. For me it doesn’t have to be an omnipotent being pulling the strings with some sort of plan for everyone. I don’t believe that. To me it’s much more akin to the tides or gravity or the wind. It’s something that is there that is beyond my or anyone else’s control and I can really appreciate that as well as take comfort in its presence.