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.

I am on a ventilator, and I love it! However, I need 24 / 7 care for the rest of my life to prevent blocked lungs that could lead to a coma.

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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.

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!

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.

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?

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.

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…

As you may have gleaned from the title, I wet the bed. I felt the urge to go. Now. So I hit my alarm to let Evan know there was an emergency, but it was too late. I was peeing.

This disease leaves you nothing.

The smell and my tears let Evan know what was wrong. I felt heartbroken, ashamed… And such relief, as if I had been holding it for hours.

Evan kept saying “poor baby” and “my precious angel,” easing my fear that he would be disgusted at having to clean up my mess. I knew with a profound wave of absolute trust that he would take care of me, do everything I couldn’t ask and better.

I have a catheter now. I feel humble and ashamed every time he empties the bag.

2

It’s hard to live in the present when the past feels as close as my shadow. I can’t stop thinking about the things I have lost. I’m nearly immobile, so the things I miss most are physical. I miss my feet touching the ground. I miss the luxury of scrubbing my scalp with shampoo and my face with soap. I loved the feel of writing with a freshly sharpened pencil. Above all, I yearn to wrap my arms around my husband again.

I have also lost my voice, so I have a whole other list of longing around that. To keep it brief, I would say that I miss humor the most. Being funny happens in the moment. Banter, sarcasm, puns, inside jokes, even comments on movies all happen fast. Asking people to pause so I can type a joke means the moment has passed. Trust me, there’s nothing more awkward than people silently waiting to indulge you in your attempt to be funny.

Focusing on the past has led to incredible jealousy. Most recently, I was on my way back from a doctor appointment, I was stuck in traffic downtown, and I swear, the jealousy was like a monster consuming me. Watching people walk with ease across the street, holding children the way I will never be able to hold my godson again made me glower. One man juggling his briefcase and phone answer a call. Observing him was like watching a ballet. I couldn’t believe I had ever moved with such ease and grace. The memory was both distant and visceral.

Slowly, though, I have come to accept that living in the past means I am missing an equally precious present. I haven’t stopped mourning being a part of laughter and hugging those I love. I never will. My jealousy hasn’t disappeared either, but sometimes it is not so painful. Ironically, my loss is what taught me how to live just a bit more in the present. I realized that with ALS, there’s always more to lose. I may not be able to make people laugh, but I can still laugh, and that’s something. Maybe one day, I won’t be able to laugh, so I should appreciate it. Gratitude has helped me step out of the shadows of my past to fully appreciate and experience the present. I hope it can do the same for you.