Bigger Fish to Fry: Things to Do When Your Days may be Numbered

In a couple of months, I’ll turn 56. That’s about the average age when C9orf72 symptoms usually emerge in genetic carriers. I don’t plan to get ALS or FTD, and I still hold out hope that a cure will be available for me and my family before disease onset. God forbid, if I do develop symptoms, I hope I still get a chance to do lots of things. 

I think about my mortality a lot. Being a caregiver to my husband and watching my own mom die of ALS has forced me to do that. And it doesn’t really scare me. I’m incredibly healthy now. I’m on a neuroprotective diet. I work out five times a week. I don’t smoke or participate in contact sports that could put my brain at risk. 

Like many people in their fifties, I have some unfinished business. I want to have a successful tour with my new book, Last Nerve: A Memoir of Illness and the Endurance of Family. I want to travel to Japan and Greece. I want to go back into the studio and record another album with my old band, 40th Day. I have an idea for another book, and I want to go to more writer’s residencies to work on it. Sometimes I fantasize about owning a condo on the beach. I think about going back to school and getting another advanced degree, maybe in creative writing. I want to meet my grandchildren someday. 

Some of these “bucket list items” can be achieved within a year or two, but the chance that my kids will have kids within the next five years is a stretch. They’re only 18 and 21. Nothing is guaranteed, especially when someone’s bucket list contains someone else having kids.

 Mostly, I think about how I want to live. A friend of mine said, “It’s not how long you live; it’s what you do with the time you have,” and I totally agree. Having this gene has made me a better activist than I was before. It’s made me a better listener and a better friend. I’ve become more open-minded.  It’s also made me want to live my life larger, love the world harder, and celebrate louder. Nothing is taken for granted in my world. I can’t assume any of my gene-carrying friends will live to a ripe old age, so I try to have meaningful relationships with them. I try to be as present with my family as I can. I make the effort to be with my loved ones because there are no guarantees. And when there’s an opportunity to make merry or commemorate something special, I do. I say “yes” to a lot of fun things. 

I also have made the decision that, while there are still things I do even though I don’t like them, I try my level best to not hang out with people I don’t like. While I used to just tolerate folks who annoyed me, I have very little desire to do it now. I have less patience with mean people, and I seek out friends with whom I have chemistry; not just something in common. 

I also find that when there’s an opportunity for me to participate in ALS/FTD research, I always say “yes” and make good on my promise to help find a cure. If the NIH, the FDA, the NINDS, a conference, or a hospital wants me to give the keynote speech, I do it. If there’s a chance to speak with representatives in DC about genetic nondiscrimination, I’m all over it. It’s my way of paying scientific research forward, and it keeps me focused on what’s important: keeping my kids, my cousins, and myself from getting sick.

Advocacy is in my veins. I think that if I were to start showing symptoms of ALS or FTD, I would redouble my efforts and just get louder about a cure. Maybe that’s the most important bucket list item: the cure. More than anything, that’s what I want.

I want to not have to think about genetic ALS. I want my husband and my kids to not have to think about it. I don’t want it to be at the front of people’s minds when they mention my name. But until there’s a cure, I’ll continue to be an activist for patients’ rights and for the rights of my genetic community. And that’s me living the life I want to live.

Maybe if I get a few minutes to click around, I’ll start making good on the bucket list. Last year, at a writers’ conference, I stopped by some tables advertising low residency programs for MFA’s. The low-residency program is a great option for me because I can do the reading and coursework remotely and I only have to travel to in-person classes once in a while. I love school, and I enjoy the daily structure and challenges associated with masters-level learning. 

My husband, Kirk, and I both work from home. Even though we see each other every day, we only take short getaways twice a year. I miss traveling alone with him. And there’s no time like the present. With both kids out of the house, Kirk and I can leave town more easily. If we can get coverage for our dog, Dusty, we may be able to sneak away to Japan for a couple of weeks this fall. Writing this blog makes me remember to take advantage of life while I still have it. 

I could sit around and mope about being a genetic carrier for a fatal neurodegenerative disease, but I also have a great bucket list. I’ve got bigger fish to fry: live my life larger, love the world harder, and celebrate louder!