Would I Choose a Life With My Husband and His Disease, or One Without Him In It?

Seventeen years ago, my husband and I sat in a neurologist and were told 1) Get power of attorney over him 2) He can no longer work at his job 3) He can no longer drive on the roads, and 4) This disease will shorten his life.

Adult Onset Metachromatic leukodystrophy at the age of 42. What in the world is that? The Internet was just beginning, and even at the medical library at Mayo Clinic, there was little information. What I remember the most was this: We were living on borrowed time.

If I could go back to that day, I would tell myself that your life will never be the same. It will be better.  You will meet new friends and experience things you can never imagine. There’s a whole world out there you know nothing about. People who you thought were your friends will shy away and disappear, but you will make new friends who will last a lifetime. Your children (all young adults) will no longer have the father they remember. Your actions will profoundly affect your grandchildren.

Take lots of pictures; make lots of memories. Share times with family as much as you can for as long as you can. Keep a journal of all the little things, and keep it up. As the years go by you won’t remember all the little things you wish you could remember.

Life will go on and you will be OK. You’re no saint, but you will get through it. Life will be different, but the people who matter the most will grow from this experience, and they will all be OK.

Early on, I used to tell people I’m where I belong. He could have been diagnosed as an infant or a child or a teen, and I would not have known him, and we would not have our two great children or our wonderful granddaughter. We had 21 good years before his diagnosis, so I’m grateful for what we had. He’s been gone for six years now, and life does go on, but it’s so different then I ever imagined.

Would I go through it all again? Yes, in a heartbeat. Would I change anything? Well I guess in hindsight there must be things I would do differently. But I believe everything happens for a reason, and we wouldn’t be who we are today if we’d done things another way.

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