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What ALS has taken from one couple and how they've held on to love

JUANA SUMMERS, HOST:

Yesterday, we introduced you to Brian Wallach and Sandra Abrevaya, a couple whose lives have been changed by a fatal diagnosis.

(SOUNDBITE OF ARCHIVED RECORDING)

BRIAN WALLACH: This...

SANDRA ABREVAYA: This...

WALLACH: ...Is our closing argument...

ABREVAYA: ...Is our closing argument...

WALLACH: ...For our lives.

ABREVAYA: ...For our lives.

SUMMERS: Brian is 42 years old and was diagnosed with ALS six years ago.

(SOUNDBITE OF ARCHIVED RECORDING)

WALLACH: In the aftermath of my diagnosis, Sandra and I cried, and we held our family tight. We did so because being diagnosed with ALS today is a death sentence. There is no cure. I will not see my daughters grow up.

SUMMERS: In the six years since Brian's diagnosis, he and Sandra have accomplished a lot. They've lobbied Congress and been instrumental in getting a new law passed. They've started a foundation, I Am ALS, and built a community of patients, caregivers and advocates. But in that time, ALS has taken a tremendous amount from them.

ABREVAYA: You want to put the contacts in first? OK.

SUMMERS: It's made it difficult for Brian to be independent, to speak, to move freely.

ABREVAYA: I'm going to just wipe his eyes a little bit.

SUMMERS: And the physical changes Brian has suffered because of ALS have had a huge impact on his family - emotionally, practically and financially. The toll ALS takes on the individual and the family was a theme we heard over and over again when we met up with Brian Wallach at an event honoring those with ALS at the National Mall last month.

(SOUNDBITE OF MONTAGE)

COMPUTER-GENERATED VOICE: Caregivers play a critical role in the lives of ALS patients.

(APPLAUSE)

UNIDENTIFIED PERSON #1: To my husband, Steve - thank you for the relentless, never-ending job of giving me the safest, best life possible.

UNIDENTIFIED PERSON #2: And we, daughter and dad, became what I lovingly teased as roommates. It was nothing close to roommates. We were caregiver and patient.

UNIDENTIFIED PERSON #3: As a visually impaired woman with no medical background and living well below the poverty line, I was not the ideal person to be Dora's caregiver. But Dora said to me on many occasions, you're here.

SUMMERS: What it takes to care for someone with ALS is something Brian, his wife Sandra and I talked about when I visited them at their house in suburban Chicago.

For people who don't live with a chronic illness or care for someone who does, can you just take us through a little bit of what a day for the two of you looks like - just a normal day?

ABREVAYA: I think the caregiver's day for someone living with ALS is dramatically different based on what your support is in the home. There was a period of time when we didn't have any external caregiving support, and I did it all alone. And for several months, I didn't leave Brian's side for a moment. I literally slept by his side to make sure that he didn't have trouble breathing in the middle of the night. And I helped him take his pills. And he couldn't move his arms, and I fed him pill by pill and held the glass of water to his mouth. I prepared his food. I cut it into little pieces so that he wouldn't choke on it. And then I fed it to him, spoon by spoon, and I could not leave the home. And it was imprisonment. And it's so important for people to know that because, for people who cannot afford caregiving, their entire life is imprisonment. And while they may not be the one diagnosed, they've been given a sentence. And it is a total tragedy, but I still love you.

WALLACH: Living with ALS...

ABREVAYA: Living with ALS...

WALLACH: ...I will lose my ability...

ABREVAYA: ...Means that I will lose my ability...

WALLACH: ...To do things...

ABREVAYA: ...To do things...

WALLACH: ...Piece by piece.

ABREVAYA: ...Piece by piece.

WALLACH: I live with the knowledge...

ABREVAYA: I live with the knowledge...

WALLACH: ...That today...

ABREVAYA: ...That today...

WALLACH: ...May be the last day...

ABREVAYA: ...May be the last day...

WALLACH: ...That I can walk...

ABREVAYA: ...That I can walk...

WALLACH: ...Or that I can talk.

ABREVAYA: ...Or that I can talk.

WALLACH: So it has been hard...

ABREVAYA: So it has been hard...

WALLACH: ...To see the changes...

ABREVAYA: ...To see the changes...

WALLACH: ...And see the impact...

ABREVAYA: ...And to see the impact...

WALLACH: ...It has on Sandra...

ABREVAYA: ...That it has on Sandra...

WALLACH: ...And our family.

ABREVAYA: ...And our family.

SUMMERS: You mentioned earlier some of the challenges that come along with being a caregiver for someone with ALS, but I feel like that's something we don't frankly talk about that often. Can you talk about what that looks like? What does that caregiving role look like for you now, despite the fact that you have more assistance with that than you did when you and Brian first started on this journey?

ABREVAYA: Being as fortunate as we are currently to be able to get help from family and friends to pay for $300,000 plus in out-of-pocket caregiving costs - even in that scenario, we've got to just manage 41 pills and the ALS clinic visits. And then he has physical therapy twice a week. And pieces fall off the wheelchair, and you get it fixed.

And I think also one thing that's been hard as a young couple with this disease is it takes away from you part of what you thought your life would be like. I walk the girls to school, and I notice other couples walking and holding hands. My God, that would be really nice. Like, we've been robbed of that. Or how do you let people know in your neighborhood that you don't want people to think that you're the sad couple that's dying down the block. You want people to know that you can still have fun and laugh and be cool to hang out with.

SUMMERS: I would imagine that it must be incredibly helpful talking with other spouses of people diagnosed with ALS or somebody else who's walked this before.

ABREVAYA: Absolutely. And I think one of the reasons why spouses or caregivers feel so desperate to connect with one another is because, unfortunately, caregivers have been made to feel that they cannot say how hellish it is because they think that that is a commentary on their loved one and their desire for that loved one to survive.

And so while this may be a phrase that others authentically feel, I feel the phrase, it's an honor to care for you, or it's my greatest joy to care for you, are phrases that are thrust on me as a caregiver that feel so out of place. And so what I say to Brian is, this is hell, and I still love you. And I will still fight like hell. And I wish that caregivers didn't feel like the only other people they can share that secret with is each other.

SUMMERS: I'm curious - how do you keep your marriage strong in all of this?

(LAUGHTER)

WALLACH: That is a great question.

ABREVAYA: That's a great question.

WALLACH: Honest answer is...

ABREVAYA: The honest answer is...

WALLACH: ...It is really hard.

ABREVAYA: ...That it is really hard.

WALLACH: And there are points in time...

ABREVAYA: There are points in time...

WALLACH: ...Where you feel like...

ABREVAYA: ...Where you feel like...

WALLACH: ...You cannot go on...

ABREVAYA: ...That you cannot go on...

WALLACH: ...Together.

ABREVAYA: ...Together.

WALLACH: But I think for us...

ABREVAYA: But I think for us...

WALLACH: ...We have made it here...

ABREVAYA: ...We have made it here...

WALLACH: ...Because we have been able...

ABREVAYA: ...Because we've been able...

WALLACH: ...To...

ABREVAYA: ...To...

WALLACH: ...Turn our pain...

ABREVAYA: ...Turn our pain...

WALLACH: ...Into purpose.

ABREVAYA: ...Into purpose.

SUMMERS: One thing that was obvious as I sat there talking to Brian and Sandra was how deeply they love one another - how much joy they can still find in the course of a day - especially on Fridays, when Brian posts a picture of the two of them on his social media feeds with the words, it's Friday. I'm in love.

(SOUNDBITE OF SONG, "FRIDAY I'M IN LOVE")

THE CURE: (Singing) I don't care if Monday's blue. Tuesday's gray and Wednesday too... Transcript provided by NPR, Copyright NPR.

Courtney Dorning has been a Senior Editor for NPR's All Things Considered since November 2018. In that role, she's the lead editor for the daily show. Dorning is responsible for newsmaker interviews, lead news segments and the small, quirky features that are a hallmark of the network's flagship afternoon magazine program.
Juana Summers is a political correspondent for NPR covering race, justice and politics. She has covered politics since 2010 for publications including Politico, CNN and The Associated Press. She got her start in public radio at KBIA in Columbia, Mo., and also previously covered Congress for NPR.