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

When Will This Cruel War Be Over?

When I was a teenager, I read this book about a girl growing up during the Civil War called “When Will This Cruel War Be Over?” Twenty years later, that phrase keeps going through my head about COVID. It has to end at some point, right?

We can’t catch Omicron or worse, the deadly Delta variant (my doctor said it’s still out there!). We just can’t. If we caught COVID, even if I didn’t end up in the hospital separated from Evan, my interpreter and the only person who knows how to set up my tobii (eye gaze computer), our care agencies would put us in quarantine. Then what would we do about nighttime care? Remember that someone must always be awake to listen for the ventilator alarm. What do people on ventilators do in these situations? 

No, we can’t catch COVID… Except Evan did. Needless to say, caregivers are avoiding us like we have the plague, which Evan does. Still, it just doesn’t seem right that he has to stay up all night and take care of me all day, especially when he’s sick. Also, what a freak thing to happen to Evan to catch COVID just after his booster became fully effective. We’re not out of the woods yet in terms of me catching it, but we’re both vaccinated, I got my booster shot before Evan – he gave me the appointment – and he’s been wearing a mask and gloves around me. He is quarantined except for my care, and we miss each other terribly. Who knew you could miss someone in the same house? I guess I shouldn’t complain too much, though. All these measures seem to be working to keep me safe.

Beyond practical concerns, there’s the fact that COVID is breaking my heart. It has separated me from my family, who live across the country, for two intolerably long periods of time. Once for a year when the pandemic first started its assault on humanity, and currently for seven months while we waited for first the Delta variant and now Omicron to die down.

When will this cruel war be over? 

* 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

 

As My Granddaddy Used to Say…

My Grandpa Stan, who spent the last 20 years of his life convinced he was dying, always said, “If you don’t have your health, you don’t have anything.”

However, my Grandpa Stan was wrong. Take it from me, someone who has lost nearly everything in terms of health. I am unable to move except for my face and my feet, and my feet only about an inch (I cherish that inch). I use an eye gaze computer to communicate because I can no longer speak. I survive now on a ventilator and feeding tube. All that remains are my mind and senses. Well, scratch that. My sense of smell is totally lost because air doesn’t move through my nose anymore, just the hole in my throat. My sense of taste exists, but the only thing that goes in my mouth is toothpaste, so taste is nearly irrelevant.

Despite all this, I know my grandpa was wrong. It would be easy for me to become bitter if I focused on what the monster called ALS has stolen from me, but I have something more important than health. I have love.

I realize “love conquers all” sounds trite, but it’s something I really do believe. Without love, my life would be unbearable. I am loved deeply by family and friends. My parents tell me how many people at their church – total strangers to me, but readers of my blog – ask about me and my husband Evan. The love that affects me most, though, comes from Evan.

“That’s 20,” he says after a flurry of kisses on the tip of my nose.

His affection gets me through the day. From scalp massages to shoulder rubs, he spoils me rotten. Sometimes he even hugs me, no small task considering I’m completely limp and unable to hug him back. Oh, what I would give to hug him!

So in this new year, hold your dear ones near, and may you be blessed with health, safety, and most of all, love

* 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

How ALS Taught Me to Hate the Holidays

I used to love the holidays. My favorite part was finding or making the perfect gift to give each person I love. My best year, I wrote mushy poetry for Evan; found the perfect mystery novel for my dad; learned how to make a dream catcher for my sister, who was having trouble sleeping; sewed matching aprons for my mom and grandma (they were always in the kitchen together); and gave my best friend, who wanted to be a tattoo artist, a photography book of tattoos from around the world. 

Post-ALS, I can’t make anything, though I still write poems for Evan, and we can’t afford to buy gifts since we live off my disability and the kindness of family, much to my shame. That’s not the reason I hate the holidays though. It’s not even because of the distance between me and my family so I can go to one of the nation’s top ALS clinics. The separation is especially difficult this time of year. No, it’s because of this dirty word – “coverage.”

It’s a rough time of year for people on ventilators and their families because we have to have someone awake at all times to listen for the ventilator alarm, and our regular overnight caregivers are often unavailable on Christmas Eve, Christmas, and New Year’s Eve. This means Evan has to stay up all night and take care of me during the day. Thank God Evan’s parents are willing to stay up and split the night with him.

The search for coverage starts in October, with my mom helping out by calling every Medicaid and private pay agency in the city again and again over several months until we find someone willing to take at least one of the nights. And God forbid it snows. I used to love the snow, especially as a teacher. Snow days were the best. Building snowmen that my dog would tackle, baking delicious vegan chocolate chip cookies… It was all wonderful. Now all snow means to me is Evan staying up nights on end because caregivers can’t drive on the icy roads (our city doesn’t salt the roads). We have a caregiver who rescued us during a snow storm last year with her big truck so Evan didn’t have to stay up two nights in a row, but she’s slowly leaving us. I am scared to think of what we will do without her.

I know my motto is hope over fear, but I’m afraid of so much right now. Caregivers leaving, snow, spasms, and so much more. However, my best friend made me a wonderful offer. She said, “I’ll hold the hope right now while you’re afraid.”

It’s nice to know my hope is somewhere safe waiting for me.

* 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

The Time My Husband Saved My Life

This was actually the first of three times Evan saved my life over the course of a single year. Read on to find out how my husband became my hero.

#1 My oxygen has dropped to 82, but I can’t find it in myself to care. In fact, I don’t care if I live or die. I just want to sleep. I try to think of Evan and how devastated he would be if I died, but instead I imagine him healing and finding love again.

“Hang on, sweet pea. The ambulance is coming,” he says, desperation in his voice.

I don’t remember being in the ambulance or even the emergency room. I wake up in the ICU where I learn part of my left lung has collapsed. I also learn I will be getting a tracheostomy, the surgery to put a trach in my throat and let me live on a ventilator. I thought I had more time before this life-altering surgery, but then I realize this complaint pales in comparison to the fact that I get to live, and all because Evan called 911 in time.

To hear about the other two times he saved my life, read on…

#2 One day when we are hanging out, the ventilator – the machine that breathes for me – starts making the oddest sounds. High-pitched beeping like the alert for when I am breathing too fast, musical chimes like when my lungs need suction, and the alarm for when there is a leak, but all at once.

Evan jumps up to look at my numbers and sees on the screen they are all crashing. Then the screen goes dark. Evan runs (and I mean RUNS) to our medical supply closet, grabs the travel ventilator and races back to me. He hooks it up before I even realize or feel that I am suffocating. He truly is my hero.

The third time Evan saved my life is the best, most dramatic story, so I saved it for last! Also we’re going in chronological order and this was most recent, so there’s that. But anyway, wait for it, wait for it…

#3 Each crisis almost always starts the same. My oxygen drops. This time is unique for two very important reasons, though. The first is I remain somewhat lucid, and the second goes a little something like this…

“I’m scared of going to the hospital again,” I say, a slight tremor in my voice.

“Well I’m scared because your oxygen is dropping fast,” Evan replies, rushing around the house and grabbing the things we need for a long hospital stay: fresh underwear, protein bars, and medicine the hospital pharmacy won’t be able to provide, though we know from experience that they will demand absolute control of all meds.

Evan’s admission that he is scared shakes me. I’m the one who leans on him. If he’s scared, and if he’s telling me, I am in danger. Suddenly I wish the ambulance would get here faster, but I’m unconscious before I even hear sirens.

I wake up in the emergency room feeling amazing. Upon seeing my eyes open, Evan springs up from the tiny plastic chair where he’s furiously texting (my mom, I assume based on how these crises usually go). He hurries over to my hospital bed and wastes no time getting my tobii eye gaze computer set up so I can speak.

“I feel so much better!” I tell him with a smile.

“That’s because you’re on 100% oxygen Rachel,” he says gently. “Your oxygen was in the fifties.”

Before I can really start worrying about brain damage and other long term effects, the doctor enters.

“What we have here’s a Whiteout,” he pauses like he expects us to know what this means. Seeing only confusion and worry, he goes on to explain. “Lungs are supposed to be black on an x-ray, but her left lung was completely white. It’s not functioning at all because it is totally filled with fluid. This is obviously very dangerous.”

“That’s where part of her lung collapsed last year,” Evan supplies, scared but trying to be helpful all the same.

“We saw that,” the doctor says, his patience wearing thin.

“But she’s safe now, right?” Evan asks.

The doctor hesitates, then says, “It’s a good thing you bought her in when you did.” With this cryptic, unsettling answer, he leaves.

As terrified as I am, I realize this could have been much, much worse, probably fatal. However, when minutes counted, Evan called for help, saving my 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

Comfortably Numb

“There is no pain… I have become comfortably numb.” – Pink Floyd

“It will work because it has to. It will work because it has to. It will work because it has to.”

I chant this over and over in my head until my body seizes up again. Then I pray to everyone who  might be up there.

“God, Goddess, and Jesus Christ, make it stop! “

“This is killing me!” Evan says, never stopping massaging my limbs even though his hands must be tired.

Finally the spasms abate, so I go back to chanting. “The medicine will work because it has to. It will work because it has to. It will work because it has to.”

Another round of spasms. More prayers. An hour later, the Valium and muscle relaxer slow the spasms until I become comfortably numb and pass out.

I have been dealing with severe muscle spasms for about four years. For the last two years, through surgery and finding the right combination of medicine (the game changer was actually a heart medicine, if you can believe it) the spasms have been mostly under control with the occasional flare up. However, this flare is lasting longer than usual, and the spasms are agony. Sometimes the pain is so bad it makes me nauseous. I am scared because I have almost reached the max dose of Baclofen through my pump. The surgery was to put a pump along my rib cage that is refilled every three months with Baclofen, the strongest medicine out there for spasms. The pump has a small tube that snakes around my torso under my skin and goes directly into my spinal cord where it delivers the Baclofen. I have long scars along my spine and rib cage, battle wounds from my war on spasms.

If the Baclofen is failing, what about the muscle relaxer, Valium, and boatload of preventative medications I am on? I recently had an appointment with my neurologist, and it is now my understanding that most of these medications – my army of defense against spasms – fit into a class of drug called benzodiazepenes.  Evidently, the human body eventually gets used to these drugs and the effect wears off. That’s what is happening with my muscle relaxer, and I can’t help but wonder if this will happen with all my other medications. The thought terrifies me. I just want to be comfortably numb. 

* 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

The Pandemic is a Taste of ALS

Full disclosure: my therapist came up with this idea, but it’s brilliant, so I’m stealing it. Don’t worry, I’m a thief with morals. I will give him credit along the way.

The beginning of COVID was so chaotic, it’s hard to say what came first. Was it the rush on hand sanitizer and toilet paper, the masks, or the dreaded quarantines?

I realize this is a controversial statement right now, but as someone with a compromised immune system, I am all for masks and quarantines. However, that doesn’t mean the isolation of quarantines is any easier to deal with. I know one woman who, after being forced to work from home for several months, started dressing up as though she was going to the office. We all cope with the isolation the best we can.

The isolation ALS has caused is crippling. It has taken my career and interactions with co-workers and students. How can I teach middle school being nonverbal and totally immobile? I miss the little things: chatting with other teachers about the upcoming school play while checking my mail in the lounge, grading papers together, and listening to my students’ deep breathing during my guided meditations.

Then there’s the loss of church because I sleep through services. I especially miss how people of all religions came to my church. We were all together in one place (we attend/ed a Unitarian Universalist church if you’re curious). I sleep 18 – 20 hours a day, so I also miss support group meetings. In fact, I don’t know a single other person living with ALS.

Of course, all this affects Evan because where I go, he goes. He also misses services and support group meetings because he has to stay home and watch the ventilator – the machine that breathes for me – and give me food and medicine through my feeding tube while I sleep. He had to quit a job he loved just to take care of me. And of course, no more trivia nights at the local bar with his friends. He’s a history buff, so he was a priceless member of his team. No, all we have now is each other. Thank God his parents live close by. I am scared to think of what we will one day do without them, but God willing, that will be a long, long time away.

Yes, my therapist was right. Both quarantines and the isolation of ALS are terrible. Both wreck our relationships and mental health. However, there is one key difference between the isolation of quarantines and ALS. Quarantines end, but ALS is forever.

* 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