My MALS Journey

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Is Tomorrow the Day?

Is Tomorrow the Day?

For many, many years now, ever since I’ve been sick, I would end the day by crawling into bed and saying to my wife, “Is tomorrow the day?”

Meaning, of course, “Is tomorrow the day when I start to feel better? Is tomorrow the day when this nightmare is over?”

When my fatigue and pain first hit really hard in 2012, I remember thinking, “Well, maybe this is just a stomach bug or an iron deficiency. I’ll be fine in a week or two.”

As time passed, I would mark each birthday, Thanksgiving or Christmas with, “Well, by this time next year, I’m sure I’ll be feeling better.”

Years dragged on. And for so many of those roughly 4,000 nights, I’d go to bed saying, “Is tomorrow the day?”

And now, after nearly 11 years of pain, confusion, frustration and desperation — TOMORROW IS FINALLY THE DAY.

Today is filled with so many thoughts…

Life Is Loss

I remember how calloused it sounded when I heard Jan Marshall, one of my coworkers at Portland Rescue Mission say, “Life is loss.” It felt almost irreverent and dismissive of people’s pain.

But as the director of Shepherd’s Door (the women and children’s residential recovery center), Jan had my respect. So her words sunk deep and I held on to them.

It can be uncomfortable to mull a statement like, “Life is loss.” It’s just too painful to hold, because we know that it’s so true. Life is fragile and fleeting.

Loss and suffering are facts we can’t run from. Jan knew that.

She’d spent so many years counseling people who tried to run from trauma, grief and suffering. Usually, that meant drug and alcohol addictions, money problems, sexual issues, eating disorders, chronic anger, isolation, co-dependent relationships, powerlessness, etc. Rather than relieve suffering, those coping mechanisms only compounded and prolonged the heartache.

Life is loss.

Until we face that truth, we stagnate in our growth. That was another fundamental truth Jan Marshall engraved into my soul, “There is no way around, under or over. You can’t stay stuck. There is only through.” (Which inspired this poem.)

Jan didn’t mean the phrase to sound like, “Life is loss - so quit your crying and get over it already.”

She was saying, “Life is full of loss - so expect it. Face it. Deal with it as it comes. It’s all part of the journey. Don’t run from it or try to numb it. Feel the loss and go through the grieving process. Let the brevity and fragility of life bring you gratitude and joy for what we have in the time that we have.”

And so, as I reflect on my own suffering, whether emotional or physical, I sit with these thoughts lately:

  • The loss of food, something so basic to life, has made me appreciate even the smallest taste.

  • The loss of exercise has made me appreciate what it felt like to be strong and able to go anywhere and do anything I wanted or needed to.

  • The loss of energy has made me appreciate memories of summer bike rides in the mottled shadows sunlit trees, or hikes in the Oregon woods to see waterfalls in the Columbia gorge.

  • The loss of leisure time has made me appreciate what moments I have for restorative activities like music, art, writing or poetry.

  • The loss of physical health has made me appreciate just how much suffering other people endure with chronic health issues.

  • The loss of mental health and feeling in a good mood has made me appreciate the times of mental clarity and ability to be fully present with loved ones.

  • The loss of time with my family has made me appreciate even the shortest interactions, storing them up in my heart.

Don’t make me out to be a saint, though. My heart still grieves. Life still feels unfair sometimes, not just because of MALS, but because of the many other difficulties that have come our way. I still get short-sighted.

But today, I focus on gratitude for all that I have.

I work for a balanced perspective. Not leaning too far into these:

  • Not allowing toxic positivity to bring me to denial (flight response).

  • Not allowing toxic negativity to bring me to a demanding anger (fight response).

  • Not allowing toxic acceptance to bring me to despair or powerlessness inaction (freeze response).

Instead, I try to hold all three with healthy perspective.

  • Positivity with work boots on that pushes through difficulties, far beyond what I feel like I can bear, to put real effort toward making my hopes a reality.

  • Negativity with realistic glasses on that is willing to see difficult things and harsh facts so they can be dealt with.

  • Acceptance with an open hand that doesn’t clench in anger, demand, or desperation—but knows when to rest when all that can be done has been done.

I hold the truth (often attributed to the Dalai Lama): “Pain is inevitable. Suffering is optional.”

I hold to the path that the way to relieve suffering is not by numbing it, denying it, or shoving it down. But holding it with an open hand of acceptance that says, “This is what it is. What will I do with it?”

The Taste of Strawberries

A few people have asked me, “So what’s the first food you’re going to eat after your surgery?”

Die-hard “Lord of the Rings” fans will remember one of the final scenes near the end of the books / movies. Frodo, the unlikely hobbit hero, lies parched and exhausted on the slopes of the volcano, Mt. Doom.

Frodo can’t find the strength to take his final steps to throw the “One Ring To Rule Them All” into the lava which would destroy the evil Sauron, releasing his hold over all of Middle Earth.

Sam, Frodo’s loyal companion, cradles Frodo in this exchange:

Samwise Gamgee:
Do you remember the Shire, Mr. Frodo? It'll be spring soon, and the orchards will be in blossom. And the birds will be nesting in the hazel thicket. And they'll be sowing the summer barley in the lower fields. And they'll be eating the first of the strawberries with cream. Do you remember the taste of strawberries?

Frodo Baggins:
No, Sam. I can't recall the taste of food, nor the sound of water, nor the touch of grass. Instead, I'm... naked in the dark. There's nothing. No veil between me and the wheel of fire! I can see him... with my waking eyes!

Samwise Gamgee:
Then let us be rid of it! Once and for all! Come on, Mr. Frodo. I can't carry it for you... but I can carry you! Come on! [Carries Frodo.]

Like Frodo, I’ve long ago lost the memory of strawberries — both literally and figuratively.

So I’m sure one of my first foods will be strawberries. I don’t care if they’re not in season, hard and flavorless. I just want the symbolic experience of throwing the ring into the fire to be rid of it. I want back to the sunshine of the Shire.

And then I want tacos and chocolate. =)

For Post-Surgery Updates…

The first post-surgery updates will be handled by my wife, who will post to my Facebook page.

Because there are many people who will be eager for news (and thank you all for caring!), we ask that you not text or call me or Lisa to ask how things are going on the day of the surgery. That would quickly become too overwhelming. Please wait for daily updates via Facebook, then comment there if you have follow-up questions so that everyone can follow the same discussion.

I will have wifi in the hospital. Other recent MALS patients have been awake and able enough to share brief updates every day, so I’m hoping to be able to do that as well. Maybe not the day of the surgery, but hopefully each day after that.

As a reminder…

  • I will probably be in the hospital for 3-5 days.

  • After being released, we plan to stay in the Seattle area through the end of next week so that I have additional time to heal before making the journey back home. Plus, I’ll probably have a 2-day follow-up with Dr. Starnes after my release that I need to be available for.

  • I will be off work for the entire month of February as I recover. Then I’ll need to have a post-surgery follow-up with Dr. Starnes that might be in-person or telehealth.

  • As much as I appreciate the gesture, please don’t send any flowers to the hospital or our home. I have allergies, as do other people in our family.

  • One thing I definitely welcome is anything lighthearted or humorous you want to send my way, like memes or links to your favorite funny podcasts.

Thanks, everyone!