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…

In Which I Wet the Bed

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.