Working Full Days

Since graduating from the University of Notre Dame with a degree in neuroscience in May 2017, I have had little part-time gigs, here and there, but I have largely been unemployed. I don’t blame my peers who are slaving through 80-hour work weeks and are envious of my apparent luxury—but my situation, like almost all situations, is more complex and arduous to navigate than it may seem at first glance. The grass is always greener, for, in reality, I have been playing a full-time, round-the-clock, works-most-weekends, all-consuming role: professional patient. It’s not a job I ever aspired to fill, and it’s certainly not a position for which I applied. In fact, I have tried every strategy in the books to trick the universe into laying me off. I have begged Higher Powers to let me quit. However, the more I learn about my current career, the more obvious it becomes that it was inevitable—not in the divine destiny or fulfilled fate sense, but instead, it was literally written in my genes.

IMG_3470
After *finally* receiving a proper diagnosis my family drove up to NYC to attend an EDS rally.

The revelations of my collagen and alpha-tryptasemia mutations were just that: revelatory. However, when these genetic changes were made known this past year, they also opened up the door to a whole new world of unknowns.

Those unknowns have been the primary focus of my life ever since. How could they not be when my life, and the life of all those with these same diagnoses, depends on it?

This summer alone, without driving myself crazy trying to reconstruct a timeline, I can safely say I have had at least 67 health-related appointments. A large number of these being out-of-state, “new patient” appointments, which, when you have the complicated medical history and voluminous records I do, are inherently time-consuming and taxing. I saw a range of specialists from gastroenterologists to gynecologists and facilitated cross-departmental collaboration between immunology and endocrinology. I worked most closely with my one-in-a-million, out-of-this-world brilliant, neurologist. Attending these appointments and accomplishing all that was necessary as a result of those doctors’ prescriptions was solely possible because of the abundant support of my friend and medical assistant, Drew, and my new friend and gracious helper, Lesley. Further, it is essential to mention with humility, immensity, and sincerity, how thankful I am for my dad to have accompanied me to so many of these meetings.

If you take a second to imagine the blood, sweat, and tears that went into making the preparations for, showing-up fully equipped, and following up on the relevant recommendations of these appointments, then it probably won’t be hard to understand why anything but forward progress in my health would be disappointing. Yet, about a month and a half ago I woke up to a migraine that has haunted me nearly every day since. It’s the kind of headache that debilitates you for inestimable portions of your day, waxing and waning on its own whim and without regard for any measures taken to dissuade it from ruining your plans. The adjective intractable would be precise in defining its defiance. The verb crushing would be accurate in explaining its impact on my spirits.

These two descriptors would also be applicable to my weeklong hospital stay that stole a festive family and friend-filled Labor Day Weekend trip to the first ND football game of the season and my first reunion with college classmates since nearly a year ago.

Despite this great physical and psychological pain, I didn’t spend my Labor Day sulking in a puddle of tears because of the thoughtful visitors, warm well-wishers, fearless physicians, and phenomenally compassionate nurses. And I didn’t cap off my summer by sinking into a pool of sadness because Mark selflessly sacrificed his own fun in South Bend to valiantly stay by my side day and night in the hospital. More than just his physical presence in emergencies or constant support through moments of weakness, Mark has helped build me up by hammering home the most important messages I could learn to carry me through, not only this particularly trying time, but also the rest of my life.

IMG_6290

IMG_6242
Sunny brought light and laughter to my hospital stay. She was a fierce advocate on my behalf. I’m grateful to have had someone on my side with no fear of telling the doctors what to do.
IMG_6846
Paddy was thrilled when Maggie’s boyfriend, PJ, gave me this shirt that says “99% sure my soulmate is a dog.” Mark wasn’t so sure.
IMG_5427
My mom loves her shirt, too. Meanwhile, my dad is proud to rep EDS gear!
IMG_9257
I was a very lucky duck to have my Grammy and Grandaddy brave the dreaded drive into Philadelphia to keep me company.
IMG_0142.JPG
Mommom brings with her, everywhere she goes, invaluable nuggets of wisdom. Amongst her favorite sayings that I cling to is, “This too shall pass.”
IMG_0475
I tell Mommom this phrase sometimes feels a tad more accurate and comprehensive, ha ha ha.

Amongst the most powerful of these lessons is one he reiterates again and again from an extraordinary speech by the late Jim Valvano, which if you haven’t seen I very strongly encourage you to take ten minutes to watch. In his moving testimony, which epitomizes the power of facing death and suffering humbly, wholeheartedly, and heroically, Valvano shares three prerequisites for a full day.” He says every day you should 1. laugh, 2. think, and 3. be moved to tears. “If you do that seven days a week, you’re going to have yourself something special!” I can personally attest, if you take this advice seriously, you will have something so special you won’t know what to do with it.

 

jimmyv
“We should do three things every day of our life. Number one is laugh. You should laugh every day. Number two is to think, we should spend some time in thought. And, number three is you should have your emotions move you to tears.”

It is through this definition of a full day that I’ve come to make peace with my current circumstances. I still pine to put in a full day of work and to move out of my childhood home, but in appreciating the value of a full day in its simplest and purest form I am freed from crippled disappointment, disabling frustration and guilt, and unproductive resentment and bitterness. Instead of counting my losses or diminishing my self-worth through unfair comparisons and self-criticism, I can instead be empowered to honor my abilities and efforts.

This mentality opens the space and makes way for our responsibility to listen to our bodies and satisfy their needs in order to thrive. Further, it challenges us to discern how to take care of ourselves without mindlessly subscribing to societally defined #selfcare.

It is only in taking care of myself that I can stomach symptoms shifting despite such a deep desire for stability. It is in learning to pace myself based on feedback from a fragile nervous and immune system that I can still have full days when storms hit. Weathering constant change and navigating necessary adjustments to “new normals” is the exhausting work of a skilled practitioner of my trade. I’m an apprentice in training and my body is a work in progress, but I’m studying the craft, honing my tools, and continuing to show up for another day on the job.

One thought on “Working Full Days

  1. A friend has severe migraines & she goes regularly to Cleveland Clinic for numerous treatments. She has had a craniotomy-concusion from horse fall. Next possible treatment is Aimovig. She was asking if anyone had been on it? If you have was it helpful? If not ask your Dr’s about this drug. Your blog is so well written maybe you should start on a novel. Love you, AuntNancy

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s