White-Knuckle Miracle

I had to work for my miracle, sweat for it, white-knuckle it, but I didn’t mind; I never expected a miracle to be easy. No one promised me a rose garden.

I woke up from a nap today needing to use the bathroom, so I hit the button that pages my sister and planned how we would transfer me to the wheelchair. As she helped me get to the edge of my bed, I felt a rush of strength. Synapses sparked, lighting up my mind with the memory of walking. The path down the hallway ahead of me was clear and bright, and I saw what I could do.

“I want to walk to the bathroom,” I announced. I’ve had ALS two and a half years. At this point, abandoning my wheelchair to go for a stroll is almost as ludicrous as trying to fly.

“OK,” my sister replied without hesitation, pulling my walker in front of me. She got behind me on the bed, pushed me until I was standing, and placed her hands on my hips to steady me. “Whenever you’re ready.”

There will never be a better way to explain my sister than describing her actions in this moment.

I shuffled forward. My stiff ankles and knees, slowly remembering their job, loosened. In my mind’s eye, stringy, dry muscles were being marinated in blood pumped from my eager heart. With each step, the muscle tissue grew more swollen with life.

Over the course of ten minutes, I walked twenty feet. That’s ten minutes of a deathgrip on my walker, of clammy hands and a trembling jaw. Ten minutes of wonder and joy. I landed safely, marveling at what I accomplished.

“I’m not even out of breath,”I said, looking up at my sister. “It’s incredible.”

“I was worried about that,” she confessed, though she seemed so calm, I hadn’t even guessed. ALS affects everyone differently, but it always mounts a vicious assault on the lungs. That’s what kills us all in the end.

“I forgot to be scared,” I replied, enchanted by the sound of my own steady breathing. For those ten minutes, even my thoughts were freed from my disease. This was my very own little miracle, a butterfly dancing briefly on my open palm before fluttering away.

I once heard luck defined as the place where hard work meets an opportunity. After today, I would define a miracle as the place where hard work meets an extraordinary opportunity.  This opportunity comes through a tear in reality to bear you forward on a  divine wind. There are conditions, though. You must be ready and willing to see the tear in the fabric; that’s called hope. Understand that the wind has the strength of a hurricane (how else could it carry you?) and may batter you even as it saves you. Miracles thrive on perseverance and strong hearts.

I accept this. I am undaunted by exhaustion, bone-grinding effort, or crippling pain. I am not afraid because I have survived it all over the course of my disease and during the drug trial which, most likely, enabled me to walk today. From now on, if you come searching for me, check the crow’s nest. I’ll be perched there, on the lookout for miracles with my father’s binoculars and my mother’s optimism. I’ll be whispering, “Come. Fly over the horizon. Take your time if you must. I still believe in you.”

A Day With ALS

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

Leaves in My River, Stars in My Sky

I hate crying – it’s an uncontrollable language of pain, and I lack enough control as it is – but I was crying tonight. I’ve heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, “It’s just sadness,” then put it back down and let the water take it away. However, I like to pick up the Sadness Leaf, crush it, and bury it in the dirt. Out of sight, out of mind.

Scrolling through my Facebook feed after dinner, I found myself thinking about all the people who stopped speaking to me after my diagnosis, and tears, undeniable evidence of sadness, came. Mostly I stay positive. My doctor and I believe I will survive long enough for a treatment or cure to be developed. That possibility and the love of my friends and family keep me fighting. Still, the deafening silence from people I grew up with, celebrated holidays and birthdays with, listened to when they were troubled… it hurts enough to make my throat clench and my eyes sting. It starts a rush of unwelcome memories of staying up late on the phone, talking a friend through a divorce. Then I recall walking down the aisle preceded by bridesmaids who have faded like ghosts from my life, existing for me now only in photographs. Friends I traveled the world with might as well have stayed on the other side of the ocean; they are that distant from me. These people I loved drifted away like debris on a beach in the first high tide after a tempest.

In the quiet after the storm of my diagnosis, my old life washed away, and I learned the truth about those I love. People who are far away or have been out of touch resurface, and I realized that for all the people nearby who are too weak to support me, there are others, scattered like stars on a winter night, who have been glowing for me this whole time.

There is the college friend I met so many years ago and now only speak with occasionally, though we once talked every day. He was the one to hear the news and call, crying. No words, just sobbing because that said it all. I cried under cover of his tears, safe because I couldn’t hear my own.

Then there is the woman I knew only for one summer back in California when together we learned to cook like adults, follow a recipe, peel a mango. She flew to me in Oregon, made her super secret special cake, and promised to stay with me until the end and hold my husband’s hand at the funeral, whenever it may come.

Seven years ago, I met a girl in a karaoke lounge in DC, and we sang Britney Spears (ironically, if that’s what you need to believe to keep reading this post). We both moved, sometimes to the same cities. We campaigned together, hit all the vegan restaurants we could find, and lounged in parks with a pile of books. She stayed up late for a month after my diagnosis to answer my desperate 2 AM phone calls. She’s coming to visit this weekend.

Last month, my in-laws moved across the country to live five minutes away. My mother-in-law feeds me pills in yogurt so I don’t choke on water and helps me clean my teeth. Then there’s my father-in-law, who brings me desserts several times a week to keep my weight up and once spent a whole day assembling my hospital bed.

And last in this post but not in my life, the aunt and uncle who surprised me by sending a box full of starfish. They live at the beach where my family went on vacations. They must remember how I couldn’t end a week at the beach without bringing a starfish home. I brought a starfish with me when my husband and I moved 3,000 miles away to remind me of my childhood, but one night Malka ate it for reasons we cannot fathom. Receiving these new starfish reminded me that I and my precious past are not forgotten.

Allowing my mind to linger on these winter stars introduces some happiness and gratitude to my swirling thoughts. They are more leaves in my river, floating alongside and softly nudging the painful ones. They make it easier to unclench the fist I made around that first sour leaf, to let it go and trail my fingers in the water to feel whatever the current holds. It drifts on, benign and unremarkable.

After all, it’s just sadness.

Don’t Talk-A-Thon: Part 2

Hello all! I’m already impressed, touched, and overwhelmed by your stories of how your hour of silence went today. I would LOVE to share your stories of silence; it would be amazingly powerful to have them all in one place. Please consider sharing your experience below. If you are not able to spend an hour in silence today, go ahead and share what you would miss or fear if you were stuck in silence. Your empathy can move mountains and inspire ALS awareness!


I didn’t speak for an hour and it wasn’t all that easy… My mom and I were sitting at the kitchen table having coffee reading the paper and being silent. Every once in a while a word would almost come out and I would catch myself. I was mindful of the fact that this Made communication so difficult especially with someone else in the room. A lot of other emotions such as frustration and anxiety. Rachel is so brave and I grieve for her and for Evan every day but at the same time I remain hopeful that one day there will be a breakthrough, the one we all are waiting for.” – Renee (my mom!)


I had planned on taking the vow of silence, but my husband’s feed tube had an issue, and I needed to speak to our hospice team. But that then brings up they thought of, what if he needed to communicate the issues to the team? How frustrating and difficult it would be. So even without taking the vow, I know the horror he would have to go through. ALS may cripple one person’s voice, but thankfully, there is usually a village to roar for them!” – Glynis, author of Life After ALS: A Caregiver’s Journey


“I participated today. I occupied myself with reading a new book next to Harley on the bed, and to be honest it was hard. For one, I drifted off for 5-10 minutes, and it was hard not to talk to Harley, as I normally would, as I petted him with one hand and held my book in the other. At first, I was frustrated by my forgetfulness, but then I reassured myself the whole point was to think about what it would be like if I couldn’t verbally express myself. I was ‘trying on’ silence and checking myself in the mirror, so to speak. I did share my mission with a friend this morning at church, and it moved her. So I don’t win any awards today for successfully keeping silent, but my intention was pure.” – Mitzi


I wasn’t able to do the hour of silence today but if I did it would be so difficult to not be able to tell my family I loved them.” -Sarah

 

 

 

 

A Seat at the Table

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.