June 11, 2019, by Todd Neva, foreword by Kristin Neva
“A weed is a plant without a purpose.” On the nine year anniversary of Todd’s diagnosis, he talks about finding purpose in living with ALS.
If I had made the video, I would’ve added a bunch of other meaningful things he does — Helping me with my creative projects. Editing my novels. Listening and talking me down when I’m upset. Coaching me on various household projects. Laughing with me as we watch movies or shows.
And the best thing is being a great dad to our kids — watching movies with them, affirming them, encouraging them. And co-parenting. If we both think something the kids want to do is a bad idea, then I know I’m not being an overprotective mom.
Thankful for my husband! Happy Father’s Day!
Video transcript:
A couple days ago a friend of mine stopped by. She is a caregiver of mine who had volunteered for a couple years turning me at night. She stopped by. She was telling me about the first butterfly, monarch butterfly, that she saw of the season, and she’s a little concerned because the milkweed is not out yet here in the upper part of Michigan.
It reminded me of a scene in my wife’s book Across the Bridge. Marcella is in the garden and a monarch butterfly flutters by, and it lands on a milkweed. And Marcella thinks to herself that that plant she had once considered a weed is sweet sustenance for that monarch’s flight to Mexico.
A weed is really just a plant with no purpose.
People ask me how I get by with a relative positive disposition, and I will say it’s because I have purpose. There’s things that I do that I busy myself with. I intentionally seek out challenges and projects.
I’m on my church’s communication team and I help with graphics for promotions and advertising and things like that.
I preach on occasion. I write a blog, and I do these videos.
Now not everybody has got the skills I have to do those specific things, but there are things that everybody can do. There’s something that anybody can do.
Even if your purpose in life is just to endure suffering to get by, to manage this disease with a certain level of grace, and to help your caregiver or your children cope with what is hard for them too
Some nights I lie in bed and I’m in pain, and I see it as my purpose to endure that pain for just another hour, just to give my caregiver, to give my wife, just one more hour of sleep until I have to wake her up.
Sometimes I breakdown. Sometimes I just can’t stand it. I have to call out for her. I can’t make it an hour, and that’s okay. At those times you shake it off, as as much as a guy with ALS can shake it off, you shake it off. You move on and then the next day you try to get by with a purpose.
You need to pick up something that’s heavier than yourself — well with ALS it’s really easy to find those things that are heavier than you for a purpose in life.
It could be the most trivial thing. It may be to have a pleasant disposition or maybe it’s helping with the finances, using adaptive technology on your computer to balance the checkbook. Become an Internet troll, whatever, something that you can do. Just find a purpose, and do it. You’ll get through this.
Life is suffering. It’s hard, and if you haven’t suffered it’s just because you haven’t lived long enough, so we shouldn’t be surprised by it. We just have to get through it.
