Health Update Part 3 / 3 : Depression and Sweet Release

Day 8. Today is full of visitors, which I need right now.
I wake up to a beautiful tattooed arm of black etchings of roses I would know anywhere. It’s Lorraina, the dear caregiver who was there at the very beginning of this wretched journey, reaching out to squeeze my hand.. “Oh Rach, I just want to take care of you!”
Next come my in-laws, who I feel like I haven’t seen in ages. They always make me smile. Lorraina leaves because it is getting crowed.
Then the star of the day arrives: Dr. Goslin. My neurologist and I have a special bond. “I have been thinking of you all week. How are you doing?”
I use my language of blinking to answer. “I’m great!” I back the reply up with what Evan calls my “million dollar smile.” Dr. G takes a picture of said smile and tells me she loves me.
She shows me a picture of her new Icelandic horse,, and then she has to say goodbye. A short while later, everyone follows until it’s only my friend Ellen, who manages to light up the room on her own.
“I wore this gown just for you. Do you like it?”
“It could be worse. It could have tiny flowers on it” she reasons. Note: Next time I see her, she’s wearing a mask with tiny flowers on it.
Then she has to leave, too, so now it’s just my mom and Evan. The room that was so full of life just moments ago is now just as sterile and barren as before. That insidious thing that has been growing all week finds a black home in my brain and cracks me open I feel myself sliding into depression. I try to reason with myself and focus on the immense love that remains, burning bright within my mother and husband. It’s not enough though. No

Day 9. Dark Evan emerges. He takes pictures of the screen saver on the nurse’s computer, pointing out the absolute nonsense of it – all of which I can see from my hospital bed. Then Dark Evan takes pictures of the super hero figurines hanging by their necks across the courtyard outside the window. He says, “How sick! Who’s this even for?”
Mom is going crazy looking at my stats on the board next to me. The display includes lung volume and pressure, which mean little to me but everything to her. Tomorrow’s the day we go home, tomorrow, tomorrow. I chant in my head. Dark Evan “packs” by throwing everything in a bag. Tomorrow, tomorrow…

Day 10. From the minute I wake up, it feels like Christmas. Today, I am getting my freedom.
Then we’re told the Trilogy isn’t coming today. That there are none in the hospital, or even the state. It could take weeks or months to get a Trilogy.
Evan gets worked up. “Her scheduled surgery was last Friday. We were supposed to go home this week. What was your plan?” he demands of the equipment center representative.
Mom puts down her bag that we packed last night with such certainty. If there’s one thing you should know about my mom, it’s that she’s a fierce warrior. She joins the fight.
But I don’t get the chance to see her in her glory. I have my own mission to accomplish. I lower the volume of my tobii, and whisper Evan’s name.
He hurries away to hear what I need to say.
“I’m not doing well,” I say, which is our code for “my depression is back.”
“We’ve got to get you out of here,” he says, his knuckles tightening to white on the bed rail between us. This whole situation is wrong. There should be nothing between us. I break down further. He leaves my side and heads to the window sill, then grabs the Astral ventilator and settles on his cot. He takes out his phone and alternates between typing away on the phone and Astral, waging his own quiet war. I am overwhelmed at last by the love these two people have for me. I’m back in the game and ready to fight, which in this situation means letting things be done to me.
After my mom gets rid of the representative, we get down to the plan. Evan is programming the Astral to match the Trilogy. Then he will call Home Medical Equipment. HME will send a respiratory therapist to check out the machine and either say it worked.- at which point, we would have to leave the hospital Against Medical Advice – or they could give us the Trilogy we suspect they have been withholding.
So we wait while Evan works. Mom leaves to get him some brain food – pizza – and I stare at him while he works until I fall asleep. I wake up to a strange man entering the room. Evidently Evan made the phone call to HME while I was asleep, and this is their representative. The moment of truth arrives. Time to let things be done to me.
The representative approves of the programming Evan did. I am proud of my brilliant man. Now it’s time to see if the circuit works. The representative lays the Astral circuit on my chest, and is about to plug it in to my trach when Evan sees The circuit isn’t blowing air. He climbs over the representative, too determined to be polite. He’s in “save my wife” mode.
“There’s no air coming out,” he points out, and the representative seems entirely shocked by this. “Do you mind if I do that,” Evan says. It’s more of a statement than a question.
“Sure,” the representative readily agrees.
A hospital higher up comes to watch. My mom kicks in with, “If you let her leave with that machine and something happens to her, I will rain holy hell down on this hospital.”
Evan tries and tries to get the circuit to blow air, but the Astral circuit just won’t work. I am glad to be in Evan’s hands again, regardless of the outcome of the experiment.
The representative excuses himself to make a phone call. Within five minutes, he returns and says, “You have a Trilogy.” We didn’t know why HME would withhold the machine at the time. However, now that ventilators are on the news as the virus sweeps the globe, the difficulty around getting a working ventilator has become clear.
We don’t believe our ears, but within two hours, our very own Trilogy arrives! The hospital wants to watch me overnight to make sure the machine works, which I feel is fair considering the shoddy work of the HME representative. But tomorrow, tomorrow!

Day 11. “Don’t pay attention to what they’re doing to you,” Heather, the respiratory therapist, says from up near my head. I am strapped to yet another gurney, and it feels like the squad of EMTs is breaking my fingers one at a time as they strap me in.
“You’re going home to sleep in your own bed in your own pajamas,” she continues. Then I am whisked away through the halls, never to see her again. I hope she knows what a difference she made in those final moments in the hospital. Then I am outside for the first time in nearly two weeks. It’s cold, halfway between lion and lamb, and the trees lay their dappled shadows across me. Spring happened while I was in the hospital.
I am loaded up, and Evan hops into the ambulance beside me. The wheels are churning up the mucus still in my lungs from awful Day 1. I want to cough, but my lungs have been too weak to cough independently for over a year now. I catch Evan’s gaze, then look at the machine called a cough assist. He springs into action. He pulls off part of my trach and for a few seconds, my lungs are a vacuum. Then he hooks up the cough assist, and I am hacking. Relief. I look at him with gratitude, and he says, “Clear lungs, full heart.” I smile and nod in agreement.
We almost pass our little blue home, but the ambulance maneuvers into our driveway. Then I am out in spring again. The EMTs pause to discuss entrance strategies. I notice every detail. The tulips bloomed without me. They humble me because, despite me almost losing my mind, the rest of the world continued on.
Then we are moving again through the front door, past the living room and into our bedroom. Before I know it, I’m being transferred to my own cozy bed. The EMTs are gone so fast, they could have been a figment of my imagination.
Evan kneels beside me, and a tear slips out. “Are you overwhelmed?” he asks.
I nod “Do you need some privacy?” I nod again. He kisses me on the forehead and leaves.
Finally, finally, I cry.

thing is enough. That’s the way depression works and hurts.

Health Update Part 2 /3 : More Unfortunate Events and Some Romance

Day 4. Air, beautiful air! Over the five years I have had ALS, I forgot how it feels to take a full breath. I wish I had done this months ago. (Dr. Libby, take that and rejoice!)
My mom arrives, and the first words out of her mouth are, “You look so good!”
Evan tells crazy stories about our pets. We get a room in 2R, the respiratory unit, where there’s an actual cot for Evan. It is all around a joyful day.

Day 5. We are settling in nicely for what we hope won’t be a long stay. Evan organizes the machines that will keep my lungs clear and pumping. I nap, and mom collects some food from the cafeteria. Today ends with a far more solemn Evan reading the manuals for the machines. He also dives into learning the functions I will need to survive. I am a patient guinea pig, even when it hurts, even when it feels like I am suffocating. Mom watches with fear in her eyes. Even at age 32, I will always be her baby.
The nurses start giving me nightly injections of blood thinner in my stomach to prevent blood clots, and an inky black substance that no one else can see appears beneath my fingernails. I know exactly what it is, though. Something wicked this way comes.

Day 6. The hospital stay has been long enough to wear on everyone. The black thing runs up the veins of my wrists.
Evan develops what he calls “hospital hair,” a product of not showering and running his hand through his hair in anxiety. He says he worries whenever he is away from me. I worry, too. I’m an expert at that. When mom is gone for the night, I ask Evan a question that has been weighing on me. “Will you ever get tired of the sound of my machines?”
He puts the manual down.” No,” he says without hesitation. “That’s the sound of our forever.”

Day 7. Friday rolls around, the day of the scheduled surgery.
The pulmonologist comes in and says, “You’re stable and ready to go home once you get your ventilator from the equipment center.”
My heart soars! The excitement in that horrible beige room is tangible.
“We brought our ventilator with us,” Evan says, pointing to the machine we received from our clinic.
“That’s an Astral, and you need a Trilogy. No one in the hospital even knows how to work one of those.” The insidious black has climbed up my arms and is webbing across my neck.
“I bet we get Trilogy this afternoon and are home tomorrow,” Evan says.
“Hopefully,” the doctor says. “The equipment center is only open business hours, so either you get a Trilogy today, or you’re here for the weekend.”
My heart plummets through my stomach and goes splat on the floor like a rotten tomato.
This Trilogy doesn’t come today.

Health Update Part 1 / 3: A Series of Unfortunate Events

Day 1. I wake up in the worst possible way. I’m feverish, my oxygen has plummeted to 83, and part of my left lung has collapsed and is filling with fluid. Someone calls 911, but everything is a blur, and I just want to sleep. I don’t care if I live or die. I actually think this is a very peaceful way to go. I try thinking of Evan to bolster me, to give me some of my old fight. That doesn’t work. I’m on a gurney, and on the way out the front door. My dear, purple-haired caregiver Lorraina, calls, “I love you!”
In the ambulance, someone shoves a mask on my face. A man says, “I know these things are unbearable. Just hang in there. We are only ten minutes away.”
I don’t know what the man is talking about because to me, the mask is heaven. It smells like maple syrup, and it’s pushing air into my lungs. Suddenly, I care very much about living. I look up at Evan, who attempts a small smile and squeezes my hand.
The ambulance stops with a jolt, and I am whisked through hallways to a glass room in the ER. Evan arrives breathless seconds later with my tobii, wasting no time setting it up so I can communicate.
“Am I going to die?” I ask him.
“No,” he promises, as if his love and will are enough to keep me, but when the doctor comes in, the first thing he says is: “She’s out of danger now, right?”
The doctor nods, saying, “It’s a good thing you came in when you did.”
I don’t remember anything of the next 24 hours.

Day 2. I wake up to searing pain on my lower back. I am being transferred to another gurney, another ambulance, another hospital. My hospital. Apparently, I couldn’t make it that far yesterday. Evan says I was on oxygen and a machine that breathed for me all day and night.
This ICU room is smaller than the last, and the IV in the wrist hurts worse. This little pain temporarily distracts me from the burning of my back. However, once we are settled in, the clawing pain returns tenfold, so I tell the nurse, and he rolls me onto my side. We discover a foot long wound across my back. He cleans up the blood while Evan holds me. Once the wound is bandaged, I am rolled over onto my back. This pain feels more bearable now.
“Transfers can be violent depending on the material you use,” the nurse informs us.
We’re alone only seconds when the surgeon walks in and introduces himself so quickly that I don’t catch his name.
He says, “You have two options. Surgery is tomorrow, but for now, I can have a tube put down into your lungs with a camera at the end to give me a better look at what’s going on. The other option is to let the monitors do their job and send signals if you are in distress.”
I feel so ashamed when I tell him that I don’t want the camera. I have been scared terribly before, but that has made me cautious. I have never actually shied away from something out of fear that I can remember.
Once we’re alone, Evan says he is proud of me.
“For being a coward?” I ask.
“For being brave enough to make these tough choices,” he says.
I don’t – or can’t – believe him, so I switch the subject. “Where will you sleep?” I ask.
After surveying the room, Evan pulls a chair across from me so if the tobii dies, he can read my face. We settle in for the night.

Day 3. I remember shockingly little of the day of the surgery. I sleep up to and after the main event. All that stands out is Evan asking, “Does it feel weird?”
“No,” I say, not entirely sure what he means. Then lights out.

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Winding Down

I told you that a long absence means a decline in my health. Read on for the most important health update I have ever posted over the years.

When I heard the news that my pulmonologist wants me to go on a ventilator, I thought, “I’m not ready. I need more time free of a machine.” Another few years wouldn’t have changed that feeling, though. I can’t believe my time is almost up. If not for the technology of a ventilator, my lungs would just stop. I just really felt that my will was strong enough to make a difference. I was stubborn and arrogant, as if no one before me ever had this much fight in them. I am no different than any of thousands of other people living with this merciless disease.

I have no delusions about how difficult my future will be. My greatest fear is that we won’t be able to organize the 24 / 7 care that is necessary for people on ventilators, and I will end up in a group home. Being on a ventilator will be a hard way of life, but I will be alive. As long as Evan lives, I am not done. I will do absolutely anything to stay here on earth with him.

I’m afraid, but there is a great deal of work to do now, so I’m trying to be brave and throw myself into it. We are making a list of questions for the medicaid representative regarding skilled care coverage and availability (even if care is covered financially, finding caregivers who meet Medicaid’s rigid qualifications can be a real struggle).

My neurologist said I’m ready for this in a lot of ways because I already use the hoyer lift for transferring, the tobii for communicating, and the feeding tube for eating. I guess people whose lungs fail first have a really hard time adjusting to losing speaking and eating all at once because the trach (the procedure to go on a ventilator) takes away all that. I have had the luxury of easing into ALS in a way I can tolerate. For that I’m immensely grateful.

So here we go on yet another ALS adventure. I am dealing with negative side effects of living with lungs that are only functioning at 25%, mostly extreme exhaustion. I wake up tired. I have to take a long nap after getting my hair brushed and face cleaned. I’m looking forward to being more energetic. I miss spending time with Evan, family and friends, writing and reading. I miss my life. The ventilator should give it back.

My Gratitude List

  1. Evan, Evan, Evan!
  2. 2. The family, friends, and dogs who support me as I face the monster inside of me
  3. 3. Every day without spasms
  4. 4. Every hour without pain
  5. 5. My caregivers – they are remarkable women
  6. 6. The fact that ALS will never take my mind
  7. 7. Writing
  8. 8. Books
  9. 9. I will never lose sensation
  10. 10. You, dear reader!

Kissing Teeth

it’s Saturday night. I have been asleep for hours. My husband Evan is hard at work, though. He is sorting 25 medications into a multi-tiered organizer. He handles each of the 270 pills, placing them gently in the correct box, all to keep the failing machine that is my body going. He makes food move through my body and protects me from spasms, pain, anxiety, and depression. In the doctor’s office, he answers questions about my medication and knows the brand and generic name of every single drug. I have no idea what he and Dr. Goslin are discussing. To many, this might not seem like an empowered position, but my point of view is that I have to suffer ALS, and Evan has taken this off my shoulders. From rubbing frankincense into my spasming muscles to learning how to use a feeding tube, he has been there for me every step of my final way. He even quit his job to take care of me 16 hours a day. He is my hero.

He was my hero long before ALS, though. He saved me when my rapist became my stalker. It was a waking nightmare made worse by the fact that no one believed me – no one except my new friend Evan. He made sure I never went anywhere alone and would not be intimidated, even when the man showed up in his classroom and made a scene. He stood by me, and we fell in love. Even though we were only 19 and 20, we knew after a week of dating that we wanted to get married. However, we decided to wait until we graduated college.

My husband is a better person than I am, but I don’t mind. He is my sun, and my heart blooms under his light. It’s been 13 years, and my stomach still flips when he enters the room. He makes me laugh even now, and the best part of my day is the time when we are alone together. I love him unconditionally. I smile so wide when I see he’s about to kiss me, he always ends up kissing my teeth, but he hasn’t complained yet. When he says he loves me, I repeat it back to myself. HE loves ME, and I search his face for sincerity. Every time, I find love light in his true blue eyes, and I think about what a miracle this is.

Evan gives me the strength to fight. I’ve always known I would die for him. Now I know I would live for him. He is my everything.

Things I almost say

I only just catch myself before I say something wrong. It’s such a close call sometimes, my heart races and my stomach flip flops for minutes afterwards. Here are two examples:

First, during a visit with my mom, we were listening to music when this beautiful song came on. It was so feminine, so pretty, that I could feel the the silk ribbons of my Pointe shoes lacing criss-cross round my ankle, the unforgiving cardboard and leather toe box slipping over the end of my foot. The choreography unrolled before me. Just at that moment, I almost said, “I would have loved dancing to that when I was alive.” Did you catch that? “When I was alive.”

Second, “I should have tried one of those in real life.” That’s what I almost said to Evan as he ate a vegetarian reuben sandwich. The words were on the tip of my now dead tongue. If I still spoke, the words would’ve reached him, and we would have had to talk about it.

Am I in Purgatory? Then what’s Evan doing here? Is Elon Musk right? Is this a simulation? All of this assumes I am so intuitive that I figured out my creator’s machinations. Or maybe I am in denial/ losing it.

Thoughts?

Part 2: Remembering

I cry as if someone is dying because someone is, in fact, dying. It’s me. I am dying. Evan holds my hand, reminding me to breathe, which is good advice because now I can’t get enough air. I would clench my hands into fists of desperation, except all but the middle finger on my right hand lie dead in the water, totally immobile. I haven’t been able to move my fingers in months, never mind my arms and legs. It’s all part of dying of ALS.

And I’ve just remembered that – I have ALS, and there’s no treatment, no cure. It’s worse than cancer because there is no hope, worse than AIDS because there is no why, and I have it.

I’m crying because I am afraid of death, and I am so young – only 32. But mostly, I am crying for Evan. He has told me multiple times that he will never remarry, and he doesn’t think he could ever fall in love again. Brick by brick, as sure as I am dying, he’s building a wall around his heart with only us inside. On the one hand, I love the wall. It keeps us safe, makes me the love of his life. And yet, as scared as I am of being replaced … 50 years is a long time to be alone.

That’s why I am going on a ventilator when my lungs fail. For those who are new to this sick game, that means life support. What this means in day to day terms is I will have a 15 lb machine the size of a dictionary or phone book attached to my body by a tube that leads to a hole in my throat. I can have it beside my bed or attached to my wheelchair, so I’m very mobile.

But… There is a but coming… I will need round the clock care. Someone has to be awake to suction my lungs if the alarm goes off. It may go off every hour. It may go off every eight hours. That’s a gamble we are willing to take. What we know for sure is that we can kiss privacy goodbye. Most of the caregivers we have now are very careful not to intrude. However, some will sit down in the middle of a family gathering and try to join the conversation.

So when I remember that I have ALS, I am inconsolable, I am grieving for what I have lost, and what this will eventually do to Evan. You see, ALS keeps going even after I go on a ventilator, forever and ever until I’m dead.

Part 1: Forgetting

Lately I’ve been waking up in the morning with the feeling something is seriously wrong. No, that’s inaccurate. I KNOW in my gut something awful has happened and I. Am. Terrified. I can’t tell if it’s a horrifying nightmare, or that something is wrong with the bipap (breathing machine) or the tobii eye gaze computer, but something IS wrong.

As my body calms from flight mode, I understand that nothing is wrong with the machines that power my day. The dream – if there was one – fades, and the caregiver who has been standing by, utterly baffled, proceeds to wash and lotion my face and comb my hair. Time goes by. Night falls and I can’t sleep until 3 am, a routine I hate. In those early hours, fears and loneliness creep in. Then I fall asleep, wake in terror, rinse, repeat.

It took a month for me to figure it out. It isn’t nightmares or malfunctioning equipment.

I am forgetting I have ALS.

It sinks in slowly throughout the day, which I spend in a hospital bed and wheelchair, watching people pump food and medicine – 270 pills a week – through my feeding tube, that I recognize something is seriously wrong with me, worse than tobii failure or any nightmare my wild imagination could concoct. But, some days, it never occurs to me that I am terminal. This is after all, my new normal. That’s not just a motto, it’s my real day to day.

For example, we have dinner together. Evan eats, I don’t. I just have a feeding tube. I don’t constantly think things like, “I have ALS, and that’s why I don’t get a sandwich.” I remember eating. I want to eat. I just… don’t.

For me, forgetting I have ALS is relatively easy. Remembering, now that is a whole different story…