The point of this post isn’t to stretch my writing abilities, or to expose my husband at his most vulnerable, though I think you’ll agree that he’s incredibly brave to let this post go live. In fact, he had to encourage me. Once, I had to pause for a few days. I told him, “I don’t know if I have the stomach to write this.” He advised me to at least keep it for later. In the end, his guidance on structure, “plot,” and conceit shaped this piece. Thank you, Evan. My mission has always been to show ALS with unflinching honesty. Hopefully this piece will give you an idea of what we’re going through. Now let’s get started.
[Theater lights dim, booming voice instructs audience] “Ladies and gentlemen, put your hands together for Phyllis Maner!” [A short, middle-aged lady in a pink pantsuit comes out on stage, says] “Happy Valentine’s Day, Heartbreakers! Let’s dive right into How to Break a Heart in 3 Easy Steps!
Step 1. Find a subject, ideally someone vulnerable like a caregiver. Take everything from your subject, and I mean EVERYTHING. Take their friends, hobbies, career, even their health, but most importantly, take their dreams. Ask them about their dreams, then snatch them away! This is the test. If they can devote themselves to you even after all you have done, they are hooked, but try not to feel any guilt. “Guilt is a useless emotion,” as I explain in my book, “Shoulder Devils.”
Step 2. Details, details, details! Pay attention to everything your subject says and does, especially if they are not prone to complain. Ding, ding, ding! Ladies and gentlemen, we have a subject for the experiment Step 2 requires! For the sake of the subject’s privacy, we’ll call him “Evan.” Evan is the perfect subject because he’s completely and absolutely hooked. He can’t even leave the house without paying exorbitant fees for a nurse to operate his wife’s ventilator. Let’s call the wife “Rachel.” Rachel has ALS and is totally dependent on Evan, so accomplishing Step 1 was relatively easy for her. Plus, Evan is naturally loyal. We couldn’t ask for better subjects!
Now remember, observation is crucial! Our dear Evan won’t complain to save his life. Rachel, on the other hand, is quite vocal. Let’s see what happens when Evan is faced with physical pain…
Evan has a bad back, and it’s made worse by stress. Recently, his shoulder has also started hurting. My mother always said, “You carry your stress in your shoulders,” so the tension of being Rachel’s caregiver must really be getting to him. He won’t say a word until the pain is severe, though. For example, one day, when it becomes too much to bear silently, he’ll roll his shoulders (they make the most awful sound!) and simply say, “My back and shoulder have been bothering me.”
Rachel looks up from checking her email, winces, and says, “You should take Advil, honey.” Note her compassion. Avoid compassion at all costs! It can lead to Negative Nelly feelings like sadness, and we don’t need any of that!
In my very biased opinion, emotional pain is far worse than the physical, so let’s explore Evan’s psychological suffering…
Six and a half years of being Rachel’s caregiver without having nearly anything to call his own – remember Step 1 – has turned Evan into an Anxious Andy. He’s even been sick to his stomach over his anxiety! Again, he probably won’t say anything unless it happens more than once, or unless Rachel hears him. He will even lie to loved ones about his anxiety and depression because, in his words, “Pretending everything is fine is habit.” Now let’s watch what happens when a little tension develops because of the hardship of being Rachel’s caregiver…
Rachel is talking, as she’s prone to do, and Evan drifts off. Soon, Rachel hears him snoring. Then, it’s off to the races.
“Evan, wake up. How could you fall asleep? This is an important conversation!”
Evan wakes with a start. He scoots to the edge of the chair, slumps over, and says, “I’m sorry. This life is hard on me.”
This is the first time Rachel hears something close to a complaint from Evan. She melts, her anger dissipating.
No melting, ladies and gentlemen! Melting equals compassion! There’s one more example of Evan’s emotional pain worth exploring. Get ready, ladies and gentlemen. I saved the best for last…
Rachel has the benefit of friendly interactions with caregivers for the few hours a day she’s awake. Meanwhile Evan is doing laundry and dishes, taking care of the pets, or worst of all, cooped up in his office all alone paying bills and on the phone with Medicaid, doctors, and the pharmacy managing Rachel’s healthcare.
One evening, Evan completely shocks Rachel when, out of the blue, he says, “I’m so lonely, I’m miserable. I’m OK when I’m with you or on the phone with a friend, but other than that, I am just miserable.”
Rachel sits frozen, absolutely silent, then her mind goes into overdrive thinking up ways to fix his isolation. She could try to stay awake more, or he could interact with people through volunteering, but they only have such specific times that the nurse comes so he can leave the house, and then there’s COVID to think of. All those strangers. There’s no way he would be comfortable with that.
Ladies and gentlemen, see how Rachel needlessly puts stress on herself trying to make Evan happy? That’s not her job; she’s not Santa Claus!
Well, I think Evan and Rachel have sufficiently prepared us for the final phase, Step 3. Let’s give them a round of applause. They’ve had a rough go of it! Now Step 3 will be a little shocking, but bear with me. Phyllis Maner always delivers…
Step 3. Love your subject as much as possible, more than yourself if given the opportunity. Go back through the first two Steps. Allow yourself to feel all those Negative Nelly emotions I typically tell my clients to avoid: sadness to the point of depression, anger to the point of rage, and yes, even guilt to the point of self-loathing. Let it all sink in. Marinate in your feelings for at least a week, and BAM! Your heart will be broken, too! That’s two broken hearts for the price of one, and that’s a 100% Phyllis Maner guarantee!
Now, some clients claim that hardship brings them closer together. I have even heard Rachel and Evan speak of a “unique and beautiful love,” but WE know the truth. Their hearts are broken, and so are yours!
[Phyllis Maner points at audience. Audience sits in stunned silence for a moment, then bursts to their feet, erupting in applause]
* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a tax-deductible contribution to Rachel’s care through the Rachel Doboga Campaign at https://helphopelive.org/campaign/16990/
NOTE: If donating through PayPal is more convenient for you, you can still contribute that way. Just be aware your gift won’t be tax-deductible. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com