Chasing Mr. Sandman

By Rachel Doboga

“Leave my door open just a crack (please take me away from here), cause I feel like such an insomniac. Why do I tire of counting sheep when I’m far too tired to fall asleep?” – Owl City, “Fireflies”

Sleep has been a massive problem for me almost my entire life. My sleep problems started around the age of 9, which is when I lost my faith. If you have had a chance to read my blog over the last month or so, you understand the story of my struggles with doubt.

The other main event of that era was the murder of a child named JonBenét Ramsey. She was even younger than me, and it had never occurred to me that a child could be killed. I became obsessed with her murder. When I learned that police thought someone had snuck in her window, I was convinced the same thing would happen to me. I had my parents position my bed so if I heard someone open the window, I could run to them before a killer crept through.

Eventually I realized the likelihood of this happening was zero to none, but then I started worrying. I can’t remember what the worries were about, but they kept me up at night, so my parents sent me to the school counselor. Unfortunately, she wasn’t able to help me. As a high school freshman, I was so desperate for sleep I started taking Tylenol PM on really rough nights.

When I became suicidal at age 16 – and I was still struggling with sleep –  my parents sent me to therapy. The therapist suggested I find a specific chair and gave me a tiny worry doll. She told me to spend a half hour in the chair each day, running my fingers over the worry doll. That way, I could let it out in the chair instead of in bed at night. It was a great idea in theory, but it didn’t work and it didn’t do a thing to stop my suicidal ideation. Oh, the irony. Now I fight every day to stay alive.

When Evan and I were first married, I felt perfect peace, as though God was an umbrella covering and protecting us. I always slept through the night. However, the struggle to sleep returned after about a year and a half when a jazz singer who liked to practice at 1 AM moved in above us. Now we have our own peaceful little house, but we might as well still live in the music hall of an inconsiderate neighbor for all the sleep I get.

I currently sleep only one or two hours at a time with a total of three or four hours of sleep a night, so I am constantly exhausted. My therapist is getting involved now which gives me a lot of hope because he’s brilliant. We’re exploring why I can’t sleep and strategies to help me get back to sleep when I inevitability wake up in the middle of the night again and again. 

I’m definitely feeling the exhaustion physically. I get so tired I ache and even get dizzy but I. Just. Can’t. Sleep. Lunesta, a strong sleep medicine, only kept me asleep an hour, and I tried the maximum dose. Ambien made me have the strangest thoughts and wake up confused. The jury is still out on Trazodone. I can feel myself wearing down, but unfortunately it seems like there may not be a nice quick chemical fix.

I can’t go on like this. This is the worst my sleep problems have ever been. Even right after my diagnosis when I was up grieving the fact that I will never be a mother, that one day I will leave Evan all alone, I got more sleep than this. I talked late every night with my best friend Melissa for a month, making plans to help Evan cope after my loss, but we always crashed around 2 AM. I just wish I knew why this is happening, why my insomnia has gotten so bad. That’s one of the most frustrating parts of ALS – I may never know why my body turned on me.

So I keep chasing Mr. Sandman each night, hoping and praying he will make my eyes heavy and bring me a dream.

* 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 contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

A History of Doubt Part 3/3: Letting Death Take Care of Itself

By Rachel Doboga

When discussing my fear of death with my beloved and brilliant therapist, he pointed out that I am often so focused on my fears and anxieties that I miss out on the present, on enjoying my time with Evan and my dogs because I am so worried about the future, on the joy of corresponding with loved ones because I am nervous that I am taking too long to respond to their letters, and so much more.

My anxiety hops around from topic to topic so I am always consumed by it. Now, I’m preoccupied with death and the afterlife. He advised me to focus on the now, and to “let death take care of itself.” Easier said than done, but I have to try because, as my grandma used to say, “Yesterday’s gone, tomorrow isn’t here or guaranteed, so all we have is today.” This is especially true for someone like me living under the shadow of a terminal disease.

After my most recent therapy session, Evan and I talked a lot about faith, death, and the afterlife. I told Evan, “Something you said really inspired me. You said when you are afraid, you push yourself towards belief. I never thought of belief as a choice. I always thought of it as something that happened to me. It’s empowering to think I could choose to believe in an afterlife.”

Something else that is helping me let go of my all-consuming fear of death is a little wisdom from my best friend. Melissa suggested giving that terrified part of me some love and attention. She advised saying something like this, “Thank you for your concern. I hear you and you can relax now.” That really helped me put my fear in perspective as something within my control.

Last but definitely not least is some advice from my mom. My mom always says, “Worrying is not preparing.” At first, I thought that meant “Create an action plan!” Now I understand it means “Worrying doesn’t help you, so stop!” I have to remind myself of that constantly, kind of like a mantra I guess, but it really does help me regain control of my thoughts and fears and return to what is right in front of me. Sometimes when I am especially anxious, my mom even texts this advice to me! Along the same lines, one of my aunts told me that the Bible says, “Who of you by worrying can add a single hour to his life?” I am lucky to be surrounded by so many wise people.

Now I use meditation and mindfulness to live in the present. How I practice mindfulness lately is I try not to multi-task. I ask myself what I want to remember in that moment and give that my attention. For example, I stop whatever I’m doing when my dog Malka enters the room and focus on the sight and sound of her. I love the way she plops down anywhere for a nap (usually in the way of my medical equipment or right behind someone’s feet), and when she settles in, she sighs like she’s the president of the world and has to end climate change, famine, and war. I enjoy the feeling of her coarse fur when Evan takes my hand and helps me pet her. I take her in with all my senses because I won’t have her forever, and she’s far more important than checking my email.

I’m pretty sure I am not practicing mindfulness correctly. I just know you’re supposed to find something to focus on in the present, and this is how I do it – by focusing on one thing at a time with all my senses. Mindfulness also helps me deal with the nastier parts of ALS. I focus on Evan’s deep blue eyes during frightening trach changes, and when I’m in pain, I try to give all my attention to the place where he squeezes my hand.

Meditation is my other main tool for letting go of anxiety and returning to the present. Frankly, I am not very good at meditation, but my uncle, a Zen Buddhist, swears by it, and he’s a pretty smart guy! I have noticed that the more I meditate, the better I feel, at least in the moment. Many types of meditation require deep breathing, but I can’t really control my breathing well enough for that because I am on a ventilator. The two types of meditation my uncle taught me, take place solely in my mind, so those are what I use.

The first type is what I call “The Fisher.” You pretend you’re standing in a stream full of fish. You try to calm yourself, but if you’re anxious and fearful, intrusive thoughts are bound to come up. Each intrusive thought is a fish. Notice the thought and pick up a fish, acknowledging it by saying something like, “I see and understand you, but I don’t need you.” Then put the fish down and watch it swim away. Do this until there are no more fish.

I don’t have a name for the second type of meditation. It is just counting breaths, but you have to start over each time you have an intrusive thought. It sounds frustrating, but it’s oddly soothing. My intrusive thoughts tend to be about money because Medicaid monitors our finances and restricts how much we can save; Evan’s wellbeing, especially after I die; and of course, about my own death. Being able to let go of these worries, even temporarily, gives me some relief.

I don’t want you to think my anxiety issues are fixed and gone because I practice mindfulness and I meditate. I rely heavily on therapy and medicine. I take many anti-anxiety medications, one in the morning and one at night, and I have a fast acting one for emergencies. However, while I’m still afraid of death and I’m not sure about the afterlife, my fear and uncertainty no longer consume me.

I think there are several reasons for my progress. Telling the story of my roller coaster of faith and doubt in the first part of this series was tough and sharing it was scary, but I think it was ultimately therapeutic. Hearing the vastly different beliefs of my loved ones about what, if anything, comes after death reassured me that everyone has their own faith journey. Finally, the wisdom of those closest to me and my new coping skills have helped me let go of my fear of death a bit and focus on the present. I may have ALS, but ALS doesn’t have me.

I was surprised by this third and final segment of the series. I originally planned to write only two parts, but my journey through this topic has given me a degree of peace at last.

* 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 contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

A History of Doubt Part 2 / 3: Rage Against the Dying of the Light

“Do not go gentle into that good night. Rage, rage against the dying of the light!” – Dylan Thomas

If you read my previous piece, “A History of Doubt Part 1: Secrets,” you know I have been struggling with my faith since the age of nine. I actually had a breakdown in middle school over my lack of belief in the afterlife. I started crying by my friend’s locker, and with a minute to go before the bell rang, I asked her, “What do you think happens after death?”

With a shrug, she said, “I’ve never really thought about it.”

The bell rang, and she headed off to class, leaving me in tears. While I wish she had had more compassion, I guess it is normal for 12 year-olds to be preoccupied with things like grades, friends, crushes… After talking with the rest of my friends, I realized I was the only one obsessed with death and the afterlife. I felt so alone.

23 years later, I still have doubts, I still wonder if I am alone, so I decided to continue my survey of loved ones. I told them that I am terrified of dying, and I asked what they think happens after death. The results are below…

Dad, Christian – “If there is nothing after death, it would be like going into a deep sleep, and you would not know anything, so that is nothing to fear. I don’t know or pretend to know what lies in death. However, the term, rest in peace seems very appropriate. For the most part, I envision it as a peaceful sleep.”

Husband Evan, Agnostic – “I don’t know what happens after death, but I know we’ll be together.”

Anonymous, Wiccan – “We believe in Summerland, a beautiful place where it’s every summer that ever was. Every person that has ever touched you is there with you, and there’s no judgment.”

Best friend Melissa, Atheist – “I’m not afraid of death at all, because death to me is the absence of suffering. In my job as a veterinarian I think of it this way – we offer death as a gift, a relief. I am afraid of the end of life, of pain and regret and loneliness. But as an atheist, I don’t *not* believe in something after life, I just don’t believe in the God and heaven narrative specifically. It seems plausible that all of time and matter and consciousness is like a big continuous ocean, and things just shift but never disappear. I don’t think that our consciousness disappears when we die, I think it just returns to the collective. I think we’ll all always be together, that this separation we feel in life is mostly an illusion”

Anonymous, Agnostic – “I want to believe in an afterlife, but I don’t. I am terrified of dying. I can barely stand to think of it as a reality.”

Uncle Bob, Buddhist – “What happens to you? For me the key word is you. Who are you? What are you? There is no you. There is no you as a separate existing entity. I like to think of the ocean. The waves arise and return to the ocean but are never separate. Yet each is unique, formed by particular consequences that are the results of action upon consequence upon action upon consequence ad infinitum. Each is not separate from the ocean and returns to its original nature. Now words fail. Now concepts fail. Now thought fails. Because one whole is giving rise to a “uniqueness” that is not separate from the whole that is at the same time the whole. As Bodhidharma was asked, “Who stands before me?” As Bodhidharma answered, “I do not know.” Rachel, you are therefore I am.”

* 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 contribution through Friends of Rachel.

From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

A History of Doubt Part 1/3: Secrets

“I believe that prayer makes a huge difference. If not because of a higher power, because prayer is good for the soul. It is meditation, gratitude, poetry and hope all in one.” – Anonymous

My father set an excellent example of faith. He never doubted, and he told fun stories about growing up in Catholic school. However, he couldn’t save me from the world outside our church and family. I, like my father, had perfect faith, until I was nine.

I remember the exact moment my faith first wavered. I was reading the Ann Landers advice column in the local newspaper, which was convenient because it was right next to the cartoons. Thanks to Ms. Landers, I knew all about what to do if my mother-in-law proved difficult (it ends up she’s wonderful). We all shared the newspaper in the morning. The one rule was fold it back up and put it in the pile. I was about to do so when I saw a picture of a woman with her child. The photo was huge and right on the front page. The boy looked to be about my age, and it wasn’t often we fourth-graders made the cover of The Pilot. I dove into the article.

What I read hammered a deep crack into my faith. The woman in the picture had cancer and was dying. I don’t remember why she was on the cover, but I do remember one critical detail. She didn’t believe in heaven. My mind was racing. I had never met someone who didn’t believe in heaven. I didn’t even know that was an option. And how awful to die without at least the hope of heaven!

“Special eggs time!” my dad called. It was our Saturday morning ritual to make scrambled eggs with a secret ingredient – two drops of hot sauce. My little sister got to add one drop, I the other. Then my mom or dad would make bacon, and if we were lucky, my dad made hash browns.  My mom always made a big deal of wondering what the secret ingredient was, but we never told. We would just giggle. I didn’t feel like laughing that morning, though. When my parents asked what was wrong, I lied to them for the first time in my life and said that my tummy hurt. I didn’t know how to express what I was feeling, so I hid it.

I was going through the process of preparing for First Communion, so I knew priests have to keep secrets unless you plan to hurt someone. I went to Confession and told my priest I was having doubts ever since reading that newspaper article. I wish I had had a priest who walked me through doubt rather than telling me doubt is a major sin and punishing me. However, that wasn’t the case. I will always remember kneeling on that hard little bench with the priest behind the screen. He told me that the Bible says, “It is better to be hot or cold, for if you are lukewarm, I will spit you out.” The idea of God spitting me out was horrific. I was speechless. My heart was racing as he gave me my Act of Contrition – 10 Hail Mary’s.

I wanted to say, “That’s the whole problem! I don’t believe in heaven or maybe even prayer anymore!” But how could I speak out against a priest of all people? We eventually switched churches for other reasons. I never told my parents what happened. They never found out until I wrote this post 26 years later. I was just glad to get away and into a church that was more tolerant. Still Catholic, but warmer (shout out to all the folks at Ascension!). My parents still attend Mass there to this day.

I went through with Confirmation in my late teens, but I felt like an imposter, the worst kind of liar. Then in college I fell in with a group of devout Christians and started attending a Bible study group for women. I fumbled through, completely unfamiliar with some of the books they referenced much to my embarrassment, but they helped me navigate the Good Book. I found the conviction I lost a decade before.

However, being diagnosed with a terminal disease at 28 rocked my faith yet again. I had so much living left to do. How could God let this happen? I felt my faith drain from me when I needed it most. It was like water running through my hands – impossible to keep. My faith was a roller coaster when I needed steady ground. I would beg God for help, for belief in something, anything after death. That belief never came. I still beg, but now it’s for relief from pain caused by terrible muscle spasms. It’s for my caregivers to guess what I need when I’m away from my communication device. I beg for Evan’s health and happiness. I beg for countless other things, and I try to remember to say thank you when my prayers work.

I like to think that I am not alone, that everyone has their own faith journey. Like it or not, my faith is like a river. It ebbs and flows, but I like to think that just like the river water, my faith is always there. My father remains my spiritual role model. He can’t protect me, he can’t save me, but he can inspire me. That’s all I can ask.

* 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 contribution through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

The House of Small Smiles

The small smiles started a few years ago when I was on the commode. I can’t be alone even there because I am totally immobile and limp, so even in the specialized commode chair, I flop right over. Plus, I am completely nonverbal, so I can’t call for help if necessary. Add to all that I need someone to clean me, and I clearly require a “bathroom partner.”

Evan is looking at me with a furrowed brow and I know the thought running on loop through his mind because it always, always runs through mine – how did we get here?

I know he also worries about my mental state in these situations since I can’t communicate without my tobii (eye gaze computer), which we can’t bring into the bathroom. I give him a small smile to let him know I am OK. His forehead smoothes, and he bends down to kiss the tip of my nose. When he rises, he gives me a small smile of his own as if to say, “This is OK. We’re OK.”

Slowly, the small smiles spread to when Evan massages my legs each night before bed to prevent blood clots. Evan smiles first this time because he knows I always feel guilty he has to do this when he’s exhausted from taking care of me all day. His smile says, “This is OK. We’re OK.”

Over the years, the small smiles become genuine. We are just happy to be together, even if I am on the commode or Evan is exhausted. And yes, sometimes we’re lonely, scared, and overwhelmed, but sometimes, well…

We’re OK.

* 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 contribution through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

My Top Three Complaints Against my Mother-in-law

1. First of all, my mother-in-law is way too dependable. Every single time I am hospitalized, she immediately rushes over to our house and adopts our dogs, rescuing them from where my husband locked them in his office so they wouldn’t interfere with the team of EMTs who load me into the ambulance. She brings them home with her and takes care of them for as long as I’m in the hospital because Evan can’t leave me (he is the only one who knows how to align my communication device).

2. Probably the most annoying thing about my mother-in-law is how hardworking she is. In addition to rescuing our dogs, each time I am hospitalized she does a deep clean of the bedroom. Once, I vomited 15 times in seven hours, and she changed the crusty sheets and pillowcase! Who needs that kind of love?

3. The final thing that really, really bothers me is how she’s so generous with her time. Seriously, you would think she lives to serve! She runs constant errands for me, picking up everything from medicine to adult diapers at the pharmacy at a moment’s notice. Then, when overnight caregivers can’t make it, she stays up for hours and hours in the middle of the night listening for the ventilator alarm so Evan can rest before taking care of me the next day. For such a little woman, she sure has a mighty engine!

Happy Mother’s Day, Brenda!

* 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 contribution through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

There Will Be Blood (and a Little Romance)

Two nurses and a doctor surround me where I lay in the hospital. I feel like a human sacrifice, a thought that makes me giggle. After all, there will be blood. Quite a lot of it.

Evan, who always stays in the room for these events to “make sure they’re doing it right” and to give me a focal point, sees the slight shake of my shoulders and steps forward, concern etched on his face. He knows I laugh and smile when I’m anxious. He can’t reach me, though.

It’s starting.

“Alright,” the doctor says, “I hear you’re a tricky change, so we’ll try to make this fast. Hopefully we’ll get it in the first time.”

I’m not interested in what he’s saying, though. I’ve heard it from six other doctors. What I’m concerned with is my pain medicine – two Norco – wearing off as my fear mounts. Over two years of this, and I’m still terrified every time.

Thankfully, I remember what I am supposed to do when I’m this scared. I look for Evan and find he’s already looking at me.

“OK, we’re going to disconnect the ventilator, take out the old trach, and put the new one in, hopefully in about a minute,” the doctor says.

My heart rate ticks up to about 140 by my estimate because I know exactly what this is going to feel like. I’m going to slowly suffocate without my ventilator. A minute is a long time to go without air. Then if I’m lucky there will be only two sharp shards of pain, one when they rip out my trach – the breathing tube in my throat – and one when they shove the new trach in, and that’s IF this doctor gets the new trach in the first time. They never get it right, though, because I’m between sizes.

Evan, Evan, Evan. Focus on those blue eyes. Nothing else matters.

“We’re taking off the ventilator in 1, 2…”

Evan holds my gaze with his as they take away my air and pull out the old trach.

“It’s a tight squeeze, that’s for sure,” the doctor says as he attempts to push the new trach in.

My toes curl. I’m really feeling the lack of oxygen. The pain overwhelms the Norco. Evan doesn’t look away. I stare into his eyes even as I feel the doctor rip out the new trach.

“It’s a sharp down angle. Again,” the doctor says. Time is not on his side.

I swallow blood. Clots will come out through my feeding tube later. One more powerful pop of pain, and the doctor says, “There we go! It’s in. And here’s the ventilator.” Delicious air rushes into my aching lungs. “All done. You did great,” he tells me.

I finally look away from Evan up at the doctor. He looks tired, like that minute lasted forever. I want to tell him I know how he feels, but I can’t speak without my tobii (eye gaze computer).

As if reading my mind, Evan grabs the tobii and hurries towards me. Then he pauses and says, “Is that her old trach?” I follow his wide-eyed stare and suddenly feel a weight on my chest. A bloody plastic tube with ridges lays on me. My stomach rolls. In the frenzy of the trach change procedure, the doctor must have laid it down and forgotten about it. One of the nurses snatches it up.

“Oops!  Sorry about that. So I will see you in two months for your next trach change.” I relax a little. This doctor was clueless about me at first, but he adapted. Maybe next time he’ll remember the peculiar anatomy of my cut.

“When is that, June? Actually, I’m on vacation for most of that month, so you’ll be seeing Dr. Roberts. He’s great, you’ll love him.”

Another different doctor. Suddenly, I can’t catch my breath. I start to cough up blood, and my ventilator tube turns ruby red. A nurse jogs over to suction my lungs. Evan pushes through to coach my breathing, hoisting the tobii under one arm so he can hold my hand.

“Slow down,” he says, his voice steady and calm.

The nurse says, “Don’t be afraid. This is normal.”

It’s not the blood that’s scaring me, though. It’s the vision of trach changes every two months for the rest of my very unnatural life.

* 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

A Poem for my Husband

To celebrate our 13th wedding anniversary, I have decided to be brave and *gulp* share a poem I wrote for Evan. I wish I had the words to say how I feel about him, but luckily, he loved it. He even told me that he read it again and again while watering the roses! So here we go…

“Because” by Rachel Doboga

Because the sound of your footsteps
coming towards me
changes the rhythm of my heart.

Because when you play with my fingers
I swear I feel my nerves regenerating.

Because your words have the power
to rearrange my soul,

And your praise illuminates
my besotted heart,

I love,
I love,
I love
you.

* 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

Tickets to the Famous Psychologist Phyllis Maner LIVE Event “How to Break a Heart in 3 Easy Steps” for Only $39.95!

Dear Readers,
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

Out of the Woods?

Evan just tested negative for COVID on the tenth day! We’re extra careful and don’t subscribe to the new CDC five-day rule. He took an extra test on the eleventh day just to be sure it wasn’t a false negative, and of course it wasn’t, so he’s out of the woods. So am I because I took my COVID tests too, and I also got two negatives. I made it through Evan’s entire COVID experience without a single sneeze. Science works, people! We used masks, and got our vaccines and booster shots. Evan even used gloves when he absolutely had to touch me for my care.

We’re not sure how he got exposed, but thankfully my booster protected me from his weakened case. As for his booster, it lessened his symptoms to the point where we thought he had a minor cold. He only took a COVID test out of extreme caution. We were completely shocked when it came back positive.

Regarding the nighttime caregivers who understandably didn’t want to stick around, my mom found a replacement who evidently has no fear of COVID. We are lucky to have my mom working the phone, calling all the caregiving agencies in town. This isn’t the first time she has come to the rescue, though I certainly hope she won’t need to save us again.

So I’m out of the woods, right? Wrong. Two people close to me just caught COVID. Omicron seems to be closing in on me, though as my poetic doctor uncle says, it’s more like a wave passing over me out to sea, which is somehow more comfortable imagery. Here’s hoping I don’t catch Omicron or worse, the deadly Delta, or any future COVID variants.

* 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