Living as Though We Have a Future

Kristin Neva avatar

by Kristin Neva |

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Our daughter, Sara, is working on several pieces for an upcoming choir festival. One selection is the song “My New Philosophy” from the musical “You’re a Good Man, Charlie Brown.” The other evening, as our family gathered for dinner, Sara sang the lyrics in which the character Sally tries out different catchphrases, such as, “We should live every day as if it were the last day of our life.”

“That’s a terrible philosophy,” my husband, Todd, said. He has lived under the cloud of a terminal disease for more than a decade, ever since he was diagnosed with ALS.

“What do you mean?” I asked. It’s such a common phrase in our culture that I hadn’t given it a second thought. “I’m surprised you feel so strongly about it.”

“I wouldn’t have been able to live this long with ALS if I thought every day was my last day. You have to live like you have a future.” He paused. “But you should love like it’s your last day.”

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I’ve been having a hard time finding my equilibrium since Todd’s close call with his breathing a couple weeks ago. I’m frequently weepy, thinking the end is imminent. We have gotten a few more things in order for the future, and we are saying “I love you” more.

I was up and down with Todd several times last Saturday morning after our night caregiver left at 5 a.m. I adjusted Todd’s arms, rolled him to his side, and suctioned his nose. At 7:30, he asked me to put him on his back and put on the noninvasive ventilator. I went back to sleep.

When I woke up naturally, I looked at the clock in disbelief. It was 10:30 a.m.! I hadn’t slept this late in years, and I hadn’t heard Todd call for me. I was worried. I went to check on him and was relieved to see the ventilator rhythmically filling his lungs with air.

I am trying to reconfigure my mind to absorb this new level of uncertainty. Life felt precarious with the ALS diagnosis, and even more so whenever Todd has had a cold the last few years. Now we are living with a new level of fragility.

But we still don’t know when the end will come. I know people whose ALS has progressed further than Todd’s, and they have gotten by for years using a noninvasive ventilator.

Todd is still living as though he has a future. He is planning to help our son build a computer in the coming months. They are figuring out what parts they need to order. I felt a sense of relief when they had a project in the works.

I looked at my calendar for next month when the kids have spring break and decided to be optimistic that life will be OK then. I asked Todd’s sister if she could come help take care of Todd so I could take the kids to a water park for a couple days. Plans for that future are tentative. If things don’t look stable then, we’ll cancel.

If I knew it was Todd’s last day, I wouldn’t do much. I’d sit by him and hold his hand, look at photo albums, and watch shows with him. But we can’t live like that for weeks, or months, or possibly years.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Marty Marino avatar

Marty Marino

Kristin, thank you for sharing your thoughts and concerns. I know I'm not the only one who appreciates your honesty and forthrightness. I'll continue to lift you, Todd and your family up and prayer. Marty

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Kristin Neva avatar

Kristin Neva

Thanks for taking the time to comment, Marty.

Lisa tubbs avatar

Lisa tubbs

Your post makes us feel like we are not alone. So thank you.

Reply
Kristin Neva avatar

Kristin Neva

Thanks for your comment, Lisa.

Peter Tam avatar

Peter Tam

Hi Kristin,
Thanks for sharing your story. My daughter was recently diganosed with ALS and although I'm frightened and saddened, I've decided to live our lives like the future is positive. I agree with your husband, we have to LIVE and not only prepare for the worst. I wish you, Todd and your family nothing but the best!

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Peter. I hope you and your daughter are able to live, making many more beautiful memories. Thank you for your well-wishes.

Jessy James Ybarra avatar

Jessy James Ybarra

Kristin, I'm a pALS and that is my motto! Keep creating a future to live INTO! Plan something for every week, month and even year. I resonate with you and Todd wholeheartedly. God Bless you and have fun with the kids.

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Kristin Neva avatar

Kristin Neva

Thanks for commenting, Jessy. Good idea to be so intentional in planning things to look forward to.

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