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Life Inside The Margins
Can we teach ourselves to sacrifice the good in order to experience the great?
As a child, I struck an unusual balance between grasping a lot of concepts for my age and completely overlooking the obvious.
When we started using ruled, three-hole-punched sheets of paper, I would turn in work that would get high marks — along with comments that I needed to stay within the margins. I had no idea what the teachers were talking about. How I made it that far without understanding the role of those vertical lines down each side of the page, I’ll never know.
It actually took several such notes from teachers before I understood. Too quiet and reserved to ask, I just kept writing and turning in pages with text from edge to edge. When a teacher finally showed me personally what I was doing wrong, I felt the liberty that only proper guidelines can bring.
For the past 30 years, as I’ve written for newspapers, magazines and my company’s clients, I’ve grown to appreciate those margins more and more. Staying within the margins as I take notes gives me more space on the sides to fill up with more notes and thoughts and follow-up questions and drawings and …
And that’s the pattern of my life.
Space is there for me to fill it up. Now that’s a great way to live, until life hands you something too large to fit in the margins. When you’ve filled up the page and have notes and drawings all up and down the sides, top and bottom, what do you do when, for instance, you are diagnosed with a rare and incurable disease? That’s a question I could not find a satisfactory answer to when it came my way.
In fact, the only answer was to grab a clean sheet of paper and start over.
I pushed the old sheet to the side and, with the new sheet in front of me, began to sketch out what life would look like moving forward. My first inclination was “everything. I can just write smaller and move everything over.” When my condition grew worse1 and the complications became more complicated, I had to face the reality that such an approach would simply not work.
I’m far from finished with the task of moving things over, but the first thing I had to do was learn a new respect for those margins. If you fill them up right off the bat, there’s no space for surprises.
And surprises will come.
So for me, I’ve started by moving those margins further in, creating more space around the edges.
Since being diagnosed with myasthenia gravis, the disease has taught me much about margins. MG will demand more of me at times, and I will adjust or pay the price. Those are difficult words for me to write. I want to walk to the edge and have a look for myself. I want to take opportunities to learn more, grow more, do more, see more, be more. I want to see how many plates I can keep spinning while I go find sticks to add more.
But that is no longer a reasonable plan for my life. If I fill it up, margins and all, I’ll end up missing out later on. I must learn to sacrifice the good in order to experience the great. (See John 15:1–2)
Life can be rich without being stuffed. I’m still learning how to pull my margins back.
Have you ever found yourself at capacity with nowhere else to write? What did you do?
Will there come a day when disease and suffering can be programmed out of the human species? We’re a long a way from that, but we’ve made enormous strides in recent years — thanks in part to the work of Jennifer Doudna. In this podcast, you’ll hear James Altucher interview Walter Isaacson about his new biography The Code Breaker: Jennifer Doudna, Gene Editing, and the Future of the Human Race. While parts of this interview are shocking (bigger muscles, anyone?), I came away encouraged by the prospects of a better future for the generations that follow.
The Rare Mind
My copy of The Code Breaker: Jennifer Doudna, Gene Editing, and the Future of the Human Race by Walter Isaacson is in the mail. I’m looking forward to diving into the sweeping story of how Doudna’s childhood fascination with how life works led to her unlocking some of it’s deepest mysteries. She shared the 2020 Nobel Prize in Chemistry, but the true impact of her contributions to humanity will continue to be realized for decades to come.
The Rare Body
This week marked the one-year anniversary of the World Health Organization’s pandemic declaration. In the 12 months since, our nation has lost more than a half-million people to Covid-19 — a staggering number we dared not imagine a year ago.
Patrick Skerrett, editor of First Opinion for StatNews, shared the following perspective:
… I asked a range of people, from clinicians on the frontlines to virus watchers, vaccine makers, and public health specialists, to share their answers to this question: What was the moment last year when you realized we were in real trouble?
You’ll find his thought-provoking article here.
The Rare Spirit
Living with a rare disease can bring days of discouragement. Some mornings you wake up dreading what might lie ahead. Some nights you hit the pillow exhausted by the day’s struggles. I am blessed in that I have more good days than bad. Myasthenia gravis is incurable (at least for now), but not terminal. Brian Wallach was diagnosed four years ago with ALS, and he is investing his life in fighting this terminal illness — for his family and for the ALS community. You can learn more about his work at https://iamals.org.
Brian’s Twitter feed is his gift to the greater rare disease community. It is encouraging and uplifting. It is raw with honestly and replete with hope. Here are some recent favorites:
Do your spirit a favor and follow Brian on Twitter.
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I was diagnosed with myasthenia gravis in the fall of 2014. After a thymectomy in December of that year, I went into a myasthenic crisis in February of 2015 that put me in the hospital for 7 weeks — most of which was spent in ICU. I’ll be writing much about those experiences and the lessons learned in upcoming newsletters.
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