S1:E6 - Languishing

Selfie, while writing this blog - April 29, 2021

I recently read an article in the NYTimes about the word languishing and its meaning. How I understand the word and its relationship to me is this: It’s that feeling where you feel drained or unmotivated and just not able to function at full capacity. It’s the space in your mind where you’re teetering between depression and thriving. You know you’ve reached that place when your predominant selection of daytime wear is choosing between different shades of grey sweatpants and being happy with the comfort. Often times you become numb to the chaos surrounding you or are indifferent to the indifference. Throw in a terminal illness and a whopping pandemic and you have the perfect recipe for an award-winning shit soufflé. I just won first prize! 

I am Anton’s wife and primary caregiver, Mari. Anton asked me to write today’s blog. I think he just wanted to give his fingers the week off. Like Anton, I am not a writer nor do I feel like I have anything profound to say. And, unlike Anton, I don’t always have good days or great days. Some days I’m just treading water as life for me is a gigantic physical and emotional juggling act worthy of its own reality show. The one thing we do have in common is our gratitude for the journey we have been on together, although it is now bittersweet. 

My Spotify music selection today is set to Kate Bush’s Greatest Hits. My favorite song in this shuffle is Running Up That Hill (A Deal With God). It’s a story about asking God to swap the places between two people so they can better understand each other. Both would be quite surprised by what they find. I used to listen to this song in the 80s on repeat. As I listen to it now, I wish I had paid more attention to the meaning. 

Beastie Boys - Licensed To Ill Tour, Tokyo, Japan - 1987

When I was in my early twenties, my mom developed a terminal illness. It was different then. I was young and bothered and selfish and pissed. I had to move back home after living the good life working in Japan and traipsing around Europe. Just a few months before becoming my mom’s full-time caregiver, I was dancing in a cage at a Beastie Boys concert in Tokyo. Who wants to give that life up?! My life transformed from high-fashion to helping my mom in and out of bed and carrying around her oxygen tank until the end. No one wants to lose their mother – even if you don’t have the greatest relationship. She died at the age of 60. I didn’t know anyone else my age that had lost a parent yet so I didn’t know what to expect or if I was going to survive, but I did. I learned a lot from that experience and little did I know how much I would rely on that lesson today.

In a cruel twist of fate, once again I’m in that same situation. This time young, bothered, selfish and pissed is replaced by gratitude and grief.

As Anton’s disease progresses, so do his needs. I am tremendously grateful that we now have caregiving help during the day. I never realized I was doing the job of about seven people. Yet, some days still run together and I don’t sleep consecutive nights, but when it comes to that fourth or fifth night, I’m in a coma. It’s hard to shut off Mom-mode, even though the recipient is now my husband who sometimes is sound asleep. I sleep with one eye open, listening to every respiratory sound or signal that the urinal is needed. I’m always ready to jump up and spring into action at a moment’s notice. Though, I’ve learned it’s hard to flourish as pretend Wonder Woman when I have sleep deprivation. 

Happier times, Athens, Greece - 2015

Grief is almost always present. I admit, I often have crappy days. And, it’s not always because I’m exhausted. I’m going to lose my husband one day. It’s agony wondering when that day is going to come. I often wonder where I fit in the seven stages of grief. I think I check all the boxes at any given moment during any given day. At my core, I’m truly positive and optimistic about life. For those who don’t know me, you wouldn’t get that based on this blog entry 😊. I get excited when I talk about Portugal or reminisce about the past. I light up when I think about my boys or dive into one of my many creative outlets. I’m always willing to try new things and love spontaneity more than I love a good cheeseburger.

The questions I hear most from people are, “How are you?” “What can I do to help?" and “What are you doing for YOU?”. For a long time, I answered these questions in a passive, benign way. I wanted to give answers that made people feel good or give an answer in hopes one day I would actually believe it. “I’m OK.” “Nothing really, I’m managing.” and “I’m staying positive and [insert a fake positive answer].”

I AM the ultimate caregiver.

I’ve read countless self-help books and tried to live by all the motivational sayings I see people post on Instagram. I’ve tried meditating and reshifting my focus from wondering if I have enough almond milk for coffee in the morning. All to no avail. All roads lead to Morrissey lyrics and there I find my happy place.

I wish I only had good days or great days. I try. However, I’ve realized part of the issue for me is that it’s a whole lotta work to try to achieve a certain way of being or doing. It’s too stressful. I get too worked up and disappointed in myself if I’m not reaching the goal. I find that by allowing myself to feel downright miserable at times and really feel the pain and heartache, I actually begin to feel better and lighter. Go figure. I know I will survive this, too, and I will come out stronger than ever.

Our first trip together, Niagara Falls, NY - 2010

The other day, Anton had me listen to an audio recording of him speaking at a large AA meeting from 2007. He was celebrating his sixth year of sobriety and sharing his story with the audience. It was a straight up gut punch. I knew the story well, having listened to him talk about his ups and downs and crazy shenanigans through the years. It was hearing his voice that is no longer as present. You could hear the strength and his vulnerability even though he was nervously speaking to such a large crowd. He was captivating.

I’m sad to say that my memory is fading of that Anton when he didn’t have ALS. The gift I received from listening to that recording will now stay with me forever. Through my tears and some laughter, it made me recall the time, back in 2010, when he took me on a second date and he paralleled parked his silver 4Runner in a tight spot on a small street in Venice - just with the palm of his right hand on the steering wheel, all in one take. The little sideways look of confidence and smile on his face when he put the car in park told me volumes. God, I miss him.   

ALS has taken away a lot from us. Anton is still Anton even though his body is not functioning the way it used to. His mind and wit are still intact. It’s evident in the words he types. Soon he will be using his eyes to communicate. But, it’s just wrong. Instead of the two of us planning our retirement, I’m learning to live in a world of right here, right now AND plan for the future alone. Anton always says, “If you have one foot in the past and one foot in the future, you’re just pissing on today.”, or something like that. Yeah, I get it. I do my damnedest to enjoy the time we have left, but as a perpetual planner and organizer, I can’t help but constantly think about what is going to become of my life and life for my boys. I’m heartbroken that Anton and I won’t be able to live out our life together sitting on a porch overlooking the Portuguese countryside. Yet, I’m tremendously grateful for my shift in strength and fortitude. As a ferociously private person, I’m grateful for the countless shoulders I’ve allowed myself to cry on. I’ve learned to ask for help and more importantly allowed myself to receive it. I never knew that “No” was a complete sentence and how good it could feel to say it. All of this will help carry me through.    

ALS is a cruel joke that no one finds funny. As much as I try to find some level of humor in it, I’m left feeling more helpless. I feel helpless about the lack of national caregiving support. I feel helpless in having an effective ALS treatment. I feel helpless in a cure being around the corner. But, what helps is advocacy. This is where Anton and I can gain some sense of control in a disease that is rare yet so out-of-control. I know our efforts may not benefit us but just knowing we are doing something for future ALS families, just like us, is a victory and it feels good. 

I think it’s important to acknowledge the emotional pain that ALS causes – and not just my pain. It’s painful for my kids, it’s painful for friends and family. It’s wonderful to have good days or great days. But giving myself the permission to languish at times is pretty darn freeing.

Through this process of navigating the emotional world of Mari and ALS, I’ve learned a few valuable lessons: Feeling my feelings, setting some boundaries and celebrating all the small wins is crucial. Having a great therapist helps, too.

xx Mari