Category: Care

Fortune’s Fool

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When I was sixteen, a fortune teller at a fair predicted I would meet and fall in love with a man who would physically take care of me. At the time, I didn’t understand what she could possibly mean. Would I rely on my husband for money? I was hungry for independence and therefore a bit insulted, but most of all, I was bewildered. I needed more time with the fortune teller in her enchanting red silk tent, but she looked pointedly at her watch, then tapped the cash tray. My empty wallet made me unwelcome.

When I asked about the man I would marry at the beginning of our session, I did not imagine the ten minutes I paid for would pass so quickly and end so mysteriously. I wondered about her words for more than a decade, right up until my ALS diagnosis twelve years later. That day, I finally got the answer I sought. Doors slammed in my face. All around, clock needles spun backward. My end crept forward in every shadow.

Now, I rely on Evan to bathe, feed, and dress me, to keep me steady when I use my walker in the bathroom, even to wipe me after I use the toilet. He holds all the crumbling pieces of my body tight in his hands, as though trying to keep them safe until the miracle pill that can put me back together again finally arrives. My marriage looks nothing like it did when we were twenty-one or twenty-five, or even last year. Playtime is over, and we struggle daily to survive.

However, I realized as Evan delivered medication into my body via my brand new feeding tube, that what really matters remains unbroken. Even after all we’ve lost, he still loves me, and I will always love him. That knowledge is the bedrock of my existence, and it has yet to crack. Together, we chase happiness through a tangle of feed lines and IVs, not ready to surrender to how we live now. Side by side, with white knuckles and bloody nails, we crawl forward.

Benvolio: Romeo, away, be gone! Stand not amaz’d, the Prince will doom thee death if thou art taken. Hence be gone, away!

Romeo: O, I am fortune’s fool!

Romeo And Juliet Act 3, scene 1, 132–136

A Day With ALS

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I’m feeling inspired by writer and ALS advocate Sarah Coglianese’s response to the question, “What do you do all day?” The breakdown of her day made me realize that how I live now is incredibly foreign to the healthy people reading my blog. I have shared what Virginia Woolf called “moments of being”, micro-stories that I hope give you a sense of how it feels to walk in my shoes. However, I have yet to hand you the structure of my days . Here is a rough schedule for my average, exhausting, rewarding day.

Morning:

  • Showering with the help of a professional bath aide
  • Getting dressed
  • Putting on foot braces to stem foot drop
  • Taking regular medicine and trial medication
  • Eating breakfast if I have an appetite

Afternoon:

  • Taking medicine
  • Eating lunch
  • Breath Stacking
  • Physical therapy (PT)
  • Appointments or correspondence regarding medication
  • Planning fundraising events

Evening:

  • Taking trial medication
  • Breath Stacking
  • Preparing dinner
  • Eating dinner with my husband and sister, in-laws, and friends

Night:

  • Taking medicine
  • Hygiene tasks
  • Changing into pajamas
  • Writing in bed while not a creature is stirring, not even a dachshund.

Every day is a roller coaster at a shoddy carnival. Every day I have to choose again and again to feel the joy of the summits rather than the stomach-clenching pain of the drops. I feel a sense of accomplishment on many fronts, so I push myself to bask in that satisfaction. I have maintained fewer old friendships than I had hoped, but I am glad to spend time with new friends. I’m fighting isolation, and I am proud.

Sometimes, though, the valleys of this poorly maintained ride are dark and lonely. The rails rattle in a disturbing way, but I am helpless to do anything about it. I may vomit trying to eat because my appetite is so poor. Depending how stiff I am, PT can be frustrating. I often get worn out well before dinner time, which causes the quality of my speech to degrade. I also need help with almost every single task, so I am never, ever alone. This lack of privacy is emotionally exhausting beyond what I, a true extrovert, thought possible.

Yet I am starting to learn how to manage the roller coaster, figuring out when to grasp the shoulder harness until my nails crack and when to let go, throw my hands in the air, and shout in joy. ALS is a wild, deadly ride, but not one that will break me – whether or not l survive – because I know to reach for the sun whenever I’m hurtled towards it.

The Waves

Welcome to the Helicarrier

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Warning: Excessive Marvel references ahead.

This is not the story I wanted to write today. I planned on sharing something emotional and joyful. It was going to be a bigger piece, and I looked forward to a long stretch of appointment-free hours to get it done. However, ALS doesn’t care about plans. Like Loki in “The Avengers,” it lives for chaos.

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When I got out of bed, it was like stumbling onto the Helicarrier when Thor and the Hulk used it as an arena. The stress had my heart racing and made my speech even messier than usual. Evan was marching around the apartment on the phone trying to get an explanation for an unexpected and rather staggering medical bill. My theory is that marching keeps his energy up during marathon conversations about insurance and durable medical equipment – not naturally thrilling topics. Laura was on the phone at the table hunting down the right type of medical mattress for the hospital bed being donated to me (!!!!). I settled in beside her and she started spooning yogurt and pills into my mouth while on hold. Things must have been going well for her since she still in Bruce Banner mode. God help whoever tried to blow her off; she’s secretly the Hulk, and she’s on my side. Between her fierceness and Evan’s Captain America-esque determination, I felt plenty loved.

I also felt useless.

We finished with the pills, and Laura took the dishes to the sink. Then, as she dialed another number, she slid a piece of paper my way with notes about what she learned so far to catch me up. She went into her room to continue her work, and Evan parked himself next to me, hanging up and diving straight into a summary of where he was in his investigation. I made some notes about emails I could be writing to help, and noticed my voice getting stronger. His phone rang, he kissed my head, and he was off.

Laura’s door flew open at that moment. She raced to the table, skidding across the floor in her rush to get more scratch paper. I laughed hard, and she struggled to remain calm and polite to whoever was on the other end. Business now; laughter later.

Good caregivers can make people with ALS feel like Helicarrier leader and superhero guide Nick Fury. We can’t always speak or even hold a pen to write a phone number. If we are having a really bad day, yeah, we might be wearing an eye patch. Our minds are still sharp, though. There are days when we need rest, but there are also days when we like commanding the Helicarrier by pitching in, being informed, sharing our opinions.

We are grateful to the caregivers who know how to let us take back some control, the ones who remember that every now and then, even the weakest among us likes to stand at the helm, if only to remember how it felt to fly.

 

nick_fury_helicarrier

A Seat at the Table

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Seeing my mom reminds me I am changing, though slowly relative to most other people with ALS. When she visits, there is always a lot for her to learn: the new way to help me dress, which silverware I can handle, what medicine I take at night. The list goes on. My sister and husband swoop in, explaining so much I didn’t even realize they thought about:

“When she says she’s thirsty, you have to grab the pillow under her feet so she can sit straight up. That way she won’t choke,” Laura says, pulling the pillow away and handing me my water.

“Hold the glass for her between sips so her wrists don’t get tired,” Evan says, taking the water from my hands while I swallow.

They must be thinking constantly about my needs. I can look at either of them and when our eyes meet, they burst into action, knowing automatically what I am silently asking. It is amazing, but it can’t be easy, and watching them train my mom, I keep wishing I didn’t need so much, didn’t change so much.

I need to be here in Portland. The care I am getting here is perfect for me, and I am so lucky I made it into the clinic. It is still hard to be away from my parents, though. It’s easier when I think of this time apart as an investment: I will live longer and ultimately have more years with them because of the care I receive here. Watching my mom learn to take care of me as though I am a very strange kind of infant will never feel OK. Neither will seeing my sister and husband throw their time and energy down the drain of my healthcare. I have to believe, though, as the three of them work together, the distance and effort will be repaid one day by my presence at their dinner table, when we all have gray hair and have grown old, just like we hoped and planned long before we ever heard of ALS.