The "W" Word

If you ask anyone who lived through 9/11, they can recount the exact moment, the exact location of where they were when they learned or saw the Towers get hit.

For me, it was early on the West Coast, I was still at home getting ready for school, eating a bowl of cereal in our still dark kitchen, with the Today show on the TV as it was every morning growing up. I heard my Dad start freaking out and yelling, “another one, another one! There’s another plane!” I watched live as the second plane hit the tower. My Dad came rushing out of his bedroom and into the kitchen, and my Mom came out of the bathroom into the kitchen as well. I remember we were all just frozen, in shock at what we were seeing. Even though both of them were in view of a TV where they had originally been, it was like they needed to see other people seeing what they were seeing to believe it was real.

I think that is something unique about the human condition. In moments of absolutely overwhelming emotion, whether they are happy or heart crushingly sad, you need to see that another human is also seeing and experiencing what you are to believe it.

 “Can you believe this?”

 You want some kind of confirmation from someone else that this magical, or tragic moment, is indeed real.

A few weeks ago, I was standing in my kitchen, hard-boiling some eggs.

I work from home, and hadn’t gotten dressed yet, even though it was nearing noon. My phone rang, it was an unknown number. Historically, I’ve ignored unknown numbers, but in recent months, I have become accustomed to receiving countless phone calls from healthcare providers about my Mom whose number I don’t have.

Even a year ago, I might not have answered, but today, in my kitchen, I picked up the phone.

“Hello?”

The voice on the other end told me it was the nurse in my Mom’s pulmonologist’s office returning my call I had made earlier that morning.

The previous week my Mom had a pulmonology appointment that I was unable to go to owning to my being on my honeymoon. She had received some test results on her forced vital capacity (effectively the measure of how well your lungs work, a rating of 0-100%), but my Dad hadn’t wanted to know them.

I like numbers.

I need tangible information to help me plan and place my expectations. I wanted to know her numbers.

I explained this all to the nurse and she proceeded to look up my Mom’s records on the computer. I asked what her FVC (forced vital capacity) was, and she said:

“It looks like it was 14.”

“Did you say 40, as in 4-0?”

“No, 14, as in 1-4.”

“Wait, she went down 14%, or she is at 14% FVC?”

I asked these questions even though I perfectly well knew what she meant. But part of that being human part of me needed another human to confirm that I was actually indeed hearing this awful and unbelievable truth. The emotional part of my brain said, “This can’t be true, I am clearly not understanding her.”

“No, she is at 14% FVC. I am so sorry.”

I paused for a second. Letting those numbers roll around in my brain, and then my heart, and then at the pit of my stomach. I swallowed hard, I needed more information and I didn’t have time to breakdown on this phone call.

I’ve been seeing a counsellor since my Mom’s diagnosis, on an almost weekly basis, for the past 3.5 years to help deal with all of this. She’s remarked on numerous occasions how surprised she is that the healthcare providers I speak with treat me as a medical colleague – not that they shouldn't respect me, but that they don't bring anything “down” as I am talking to them as a daughter. Most of this is likely owing to the fact that I speak the right “language”, I ask the right questions, with the right medical-ese words, to which I receive medical-ese responses. This requires me to stay very grounded in the analytical part of my brain. I very often play the role of the medical receptacle which must take in all of the important medical information, interpret it, and spit it back out in a way that makes sense to my family. There is very little room for “daughter” in this taking-in-of-medical-information.

As I rolled this information around in my head, I thought about this conversation with my counsellor. I swallowed hard again. I don’t actually know for how long I was silent.

“Based on these numbers, what is her realistic life expectancy at this point?”

She himmed and hawed, and I asked her to give me her best medical guess.

“A few weeks to a few months.”

At this point, my medical-receptacle status overflowed.

My head spun, I felt like I couldn't breathe.

My hard-boiled eggs boiled over.

I watched them boil over and did nothing. The flames on our gas stovetop started to go up over the sides of the pan.

I remember I looked around my kitchen, noticed my robe was agape, and the belt was on the ground.

“Where are the humans around me to confirm that this is real?” I thought.

I swallowed hard, but the tears leaked out anyways, and my voice broke.

I allowed myself to be a daughter on the phone, and not just the medical receiver.

The nurse offered me comforting words, said it is so hard to predict with ALS.

I knew she was right. I also knew my Mom had been declining, rapidly. I, however, had not anticipated the “W” word.

Weeks.

What the fuck?

We said some things, which I don't remember, and then I hung up.

My eggs continued to boil.

It felt like time was standing still, and I was immediately transported back to the moment when I was told by the first neurologist that my Mom saw that he suspected ALS. My first question to him at the time (My Mom was in the hall, she didn't want to know what was wrong at the time) was:

“How long?”

 “1-3 years.”

The sensation I had at that moment, like the world was caving in on me and that I couldn't breathe, or make sense of what was up or down, was exactly the way I felt standing there in my kitchen.

In both situations, I was, for a brief moment in time, the only person other than medical professionals, to know the truth.

Being the human that I am, I felt immediately compelled to let my siblings and Dad know; I couldn't be alone with this information.

I steadied myself on our island, with my back to the stove. Still being cognizant that my eggs were boiling over. It was like the only shred of reality I could hold onto.

When I finally felt like I could breathe and that I wouldn't crumple over if I let go of the island, I turned off the stove.

As I pulled the pan off, I distinctly remember thinking; “I will remember this moment forever.”

I got a hold of my siblings and Dad. They were all shocked.

My Mom’s FVC was 55% in December, so an incredibly rapid decline in 4 months. We all knew it would be low, maybe 30, at worst we had guessed. And none of us thought we would hear the “W” word.

I futzed around attempting to work for a few more hours, accomplishing absolutely nothing. I found myself just blankly staring at an open email, knowing I was supposed to do something, but being unable to remember what.

I closed my computer when Cris woke up, as he had worked the night before.

I told him, and I broke down as I did. I had been able to stay strong when telling my siblings and Dad, knowing exactly how hard it would be to hear the first time, but knew I didn't have to be strong for Cris; he could be strong for me.

“Is this real? Is this actually happening? Please fellow human, confirm this isn’t real.” My brain thought.

I shortly thereafter drove up to my parents. I just needed to be with my Mom. We decided not to tell her, because she hadn’t wanted to know, and we thought it would result in her, “giving up.

This has been a long, and agonizing road. 3.5 years of loss and grief and sadness.

But also 3.5 years of unbelievable joy and love and life and laughter and living.

I have been thinking in recent weeks of one of my favourite quotes:

“I am strong. But I am tired.”

We all are, my family as a whole, each person individually, and especially, my Mom.

While I’ve known for years that she was terminal, it always seemed a few years away. But since that call with the nurse two weeks ago, the heaviness of it all has weighed on me heavily, at times feeling like it will crush me.

The Saturday a few days after this call, I was at my parents all day, helping to take care of my Mom. I ran out to Target, remembering I needed a Mother’s Day card.

I was perusing the cards, trying to find a card that would somehow let my Mom know what I needed her to know. I finally found one that felt right. I turned it over, mostly by force of habit, to look at the price and I scoffed:

$7.10??!?

I realized in that moment, that this would be the last Mother’s Day card I ever bought for her.

I threw it in my basket, and broke down in the card aisle at Target.

This unfortunately wasn't my first breakdown-in-the-target-card-aisle experience. I had been here almost exactly three years before that, the first Mother’s Day after her ALS diagnosis, knowing that this yearly ritual would be a part of my life for far less time than I had ever imagined.

I sent the same text out to my net of best friends and sister, detailing what had just transpired at Target. They all have all carried me through the last 3.5 years. I am not sure honestly how functional I would be without any of them. I don't think any of them will ever know how grateful I am for them helping to sustain my weight when life has been too heavy to carry myself. They are the great loves of my life.

I sobbed all the way home from Target. There was a beautiful sunset as I was driving back to my parent’s house. It’s beauty juxtaposed to my raw and immense grief just seemed cruel.

How can such beauty exist with such pain?

I mourned the future sunsets she would miss.

I howled in the car as I got back on I-5 about the babies she will never hold, who’s tiny fingers she will never clasp, who’s sweet little cheeks she will never kiss.

The fucked up injustice of it all just seems too much.

I am strong; but I am tired.

The waves of grief and pain and realization pelted me over and over.

I was trying to gain composure, I didn't want her to see my so upset, because I knew it would upset her.

When I got off the freeway, I knew there was no hope. My face held all the tell-tale signs of someone who had been sobbing.

I walked into the house, and she immediately looked at me, cocked her head to the side, and gave me an expression as to say, “what’s wrong?” the only way she can, as her words were long ago robbed from her.

I gave her a hug, and she started to cry.

I decided I needed to be a daughter mourning in that moment, and I pulled away and I said to her:

“I know this is going to make you sad, but I need you to know these things, if you've ever worried or doubted:

I am so afraid of what I am going to do without you.

I am going to miss you so much; I am so scared.

I want you to know, that I will love you, for forever;

And I will miss you, everyday, for the rest of my life.

Always.”

She broke down in deep, heavy sobs.

We went out to the porch in hopes that the fresh air might help to calm her down.

Instead, we both sobbed, and hugged, and held each other tight. With her one arm she can still move, she wrapped it around me, and gently patted her hand on my back. A feat that I know was incredibly difficult for her to do physically.

I let my daughter bucket be filled up with love, compassion, and motherly tenderness. It was the first time in a very long time I felt like a daughter, being comforted by her Mom.

I will never forget that moment, nor the feeling of her hand on my back. It felt like she had reached into my heart and was smoothing down some of the jagged corners of all the broken pieces.

On Mother’s Day, a friend sent me this incredible birth video, of lots of different women giving birth, showing the raw and real emotions surrounding those minutes of transitioning to motherhood.

Of course, none of this is new for me, I’ve seen around 50 babies come into this world, so I am intimately acquainted with the raw moments of birth.

But nonetheless, I watched it through a new lens:

Knowing I will make that transition to motherhood, without my Mom by my side.

I let myself fall apart watching the video. It penetrated a deep level of pain I don't often allow myself to tap into.

I wept for me, for my Mom, and for the babies that will never know their Grandma.

My nephew Hudson, I can say with confidence, is the human my Mom has loved the most in all of her life. To watch her be a Grandma, the unconditional love she has for him, for the absolute joy he brings to her, has been one of the greatest privileges and truest joys of my life.

It has also been one of the most painful, knowing she will never know any of my children.

Make no mistake, I am oh so grateful that she’s had this magical experience, and that Hudson will walk through life all the days of his life with that imprint of his Grandma’s love, even if he doesn't remember her, but it doesn't lessen the pain for me.

It’s so hard.

And so sad.

I am strong; but I am tired.

For however much time is left, I will wring every bit of love and life left out of the time we have.

I am starting to make peace with the fact that it will always hurt. That I will always miss her. And I know that my grief and longing for her will change shape in time, sometimes being harder than others. Her absence will never be easy, and it will be particularly prominent in life’s most defining moments where she would have played a central role.

I will always miss her.

Always.