Rested

July 12, 2020

I am normal person sick for the first time in a long time. I’ve got a wisdom tooth infection.

I forgot how annoying being sick was. When I’ve got my chronic illnesses and pain, I’ve got coping skills for those, so I’m generally pretty functional or know what I can do during those times. But for things like this, I am at a loss. My mouth hurts, my whole face hurts, my head hurts, my throat hurts, and since I have a fever I’ve got all of the things that go along with that. Super fun.

Because I have a fever and it’s in a time of COVID I leave work early on Thursday. I go home and sleep. I don’t even wake up for any of the three phone calls from my employees that come through that afternoon, even though my phone was on my bed with me.

The next day is more of the same. I get antibiotics from my dentist after he determines I’ve got a wisdom tooth infection and start taking those. I try to work, but all I accomplish are two menial things off of my to-do list and I’m back in bed. Then my boss calls and tells me to stop working and to rest.

Day three of this comes and goes before I start to feel like I can do anything other than lie in bed and watch reruns of Charmed and Alias. On Saturday night my brother offers to run out and bring me back whatever I want for dinner since I’m not feeling well. We derail into talking about the upcoming director’s cut of the Justice League movie and sideline into talking about Wonder Woman and I remember some random fact about one of the suffragettes that inspired the creator of Wonder Woman, I think she had one of the same illnesses as me. Dixon leaves to go pick up a pizza and cinnamon rolls for dessert and I try googling “Suffragette with pernicious anemia.”

I find her.

Inez Milholland. Inez Milholland was a suffragette who fought for women’s rights to vote in the early nineteen hundreds and died of exhaustion and pernicious anemia. She died of exhaustion and pernicious anemia at age 30.

I was first diagnosed with pernicious anemia when I was nineteen. For a couple of months, I was progressively sleeping more and more and the word exhaustion didn’t even begin to cover it. It was the end of my senior year, a marathon year where I was head section leader of the marching band for the 6A State Champion football team and the 4A state champion Marching Band, which meant a summer of band camps, practices after school three times a week, pep rallies every Friday, games (pre-show, during the game, and halftime shows) every Friday (even away games), and band competitions on Saturdays. I was also principal piccolo player in the Wind Symphony, the most competitive symphonic band at the school and in the state. I was earning my Girl Scout Gold Award, a service project more demanding than the Eagle Scout award, and was actively involved with my Girl Scout troop that met once a week. I also was a captain of the speech and debate team that traveled for tournaments twice a month and had practice once a week. I was also the founder and president of the suicide prevention organization and was traveling to give presentations at this point, while also in the maximum number of AP classes, working as a babysitter, and a small group leader at my dad’s church. Add in all of the other senior year obligations and it’s no wonder that by May I was sleeping 12-14 hours a day and missing events and meetings.

When the doctor figured out I was B12 deficient, I started taking B12 shots every two weeks right away. We did this for three months and my levels were up to normal, so we thought I was fine. Two years later I’m once again running my schedule ragged. I’m working full-time as an education coordinator at a nonprofit while commuting 400 miles each week to and from school, after getting permission to take more than the recommended number of credit hours for a full-time student to catch up from my surgeries, while also traveling almost every weekend to and from speech and debate tournaments and coaching every week all to maintain my scholarship. As I’m driving home from a long day of classes my legs stop working. After I used the steering wheel controls to cut off the cruise and used the emergency handbrake to stop, the paramedics were able to get me off the road. Once at the hospital, we learn that once again my B12 levels are life-threateningly low.

It’s at this time that we realize I wasn’t just B12 deficient, I’m B12 anemic. I’m missing an enzyme in the lining of my stomach that breaks down B12 from food and supplements. B12 is vital for energy, for brain functioning, for the nurosystem and mobility, as I’m now all too familiar with. The doctor tells me I’ll have to be on B12 shots for the rest of my life since I can’t take a B12 vitamin orally.

Since that day, I’ve gotten B12 shots monthly. I can always tell when I get low on B12 and honestly, so can everyone else in my life. I’ll be mixing up words in a sentence or not be able to think through the brain fog and Haley will say, “How close are you to getting your B12 shot?” or I’ll be flat out exhausted and hitting snooze five times each morning and my dad will say, “About time for that B12 shot, huh?”

Even though I’m very aware of the fact that I can’t renew my own energy, I still overcommit my energy, overwork myself, and run each B12 shot I get to the ground much earlier than it will last. I’ve always kind of looked at my Pernicious Anemia as the like, “oh yeah, that diagnosis.” I’ve not taken it seriously or changed my habits as a result, except I make sure I get that B12 shot each month, or at least every six weeks if I’m too busy to get over to the doctor every four weeks.

But lately, the shots haven’t been as effective as they used to be. Lately, I’ve been so, so exhausted and a shot doesn’t seem to put a dent in it. I moved across the country and started a new job, and then was hit with a global pandemic and a national social justice conversation that both directly impact the work that I do. I’ve managed to get a nonprofit’s financial foundation completely implemented in less than two months, written all of the 30 policies required for compliance in less than two months. While dealing with a pandemic.

And so as I’m reading about how Inez died at 30 years old from exhaustion and pernicious anemia while on a speaking tour advocating for the rights of women, I can’t help but feel a kind of kinship with her. We’re a hundred years apart, but eerily similar. Both women using their educational privilege to advocate for those who cannot speak for themselves. Both young in years. Both of us sacrificing our time, resources, and comfort to bring rights and justice to those who are unjustly deprived of it, to those who are oppressed. Both of us having pernicious anemia. Both of us giving more and more of ourselves to fight for the lives of others. But I want the comparison to stop there. Inez is known as the Suffragette Martyr. She was on a cross-country speaking tour, using her voice to advocate for women’s rights to vote, when exhaustion and the depletion of her B12 killed her, at 30 years old. She didn’t have B12 shots. She didn’t have the understanding of what this illness does and how it operates and what she needed to do to work with it. She simply gave until she had nothing left to give.

I’m sad. I feel a kinship with her, and my heart beats with the sorrow of a life given so nobly cut so short. She could have, should have had at least thirty more years of doing good work, of bringing justice and fairness to a system that needed it. Yes, her work was important and did result in women having the right to vote, but women have so far to go and I know she wouldn’t have stopped there. She’d say there was more work to do and she’d do it. I’m sad she didn’t know what could have saved her life and saved her voice for many more years, for the rights of many more women. It wasn’t the opposition that robbed her of that life, it was her own body.

I’m sad because I do know what this illness is and does and I do know what I need, and I’m not learning or changing. I’ve treated my pernicious anemia as the little annoying kid brother of my Chiari Malformation and Adrenal Tumor, but really, the B12 anemia is a far more intimidating entity. Pernicious means deadly. I literally have “deadly anemia.”

Sure, I have B12 shots, but that’s a treatment, not a cure. I haven’t allowed myself to make changes and develop habits that increase the effectiveness of that treatment. I haven’t been respecting it, I’ve been undermining it.

I think I have in my mind an expectation of how much rest I should need based on some standard or expectation that I think exists. I think I have some sort of standard of what it means to expend energy, that energy only is expended when it’s doing something physical. But I build entire nonprofits. I’m an architect of organizations and systems. The systems I create are intricate and nuanced and comprehensive and that takes a lot of energy to bring to life. I look around at a world of nothing and of disorder and chaos and with energy, with time, with effort, transform it into something structured, ordered, peaceful. It’s magical. And it’s exhausting.

Inez was an advocate. She wasn’t a powerlifter or marathoner or physical-labor heavy worker. She wrote and she spoke and she traveled and told a story that lasts even one hundred years later. And she died of exhaustion and pernicious anemia. As I read her story I can’t ignore the mirror it holds up to my own. But our endings don’t have to be the same.

I’m grateful for the work Inez did. For the work she did for me, a woman living one hundred years later who has the right to vote and exercises that right. I’m also grateful for the sacrifice that she gave, that she didn’t allow her pernicious anemia to keep her from working so hard to bring these rights for me and for all women. But I’m sad for her sacrifice. I’m also wiser because of it. I have B12 shots, I don’t have to die so early because I have a finite amount of B12 to manage and work with. But I can and will work with my body to manage the B12 well, to recharge in other ways. If I’m exhausted mentally then I’ll have to expend even more energy to maintain the levels of productivity and output that my job requires. But if I rest well, then I don’t have to cycle through B12 as much or as quickly. Maybe I require a higher ratio of rest to activity than most people. That’s okay. It doesn’t mean I’m not as good as other people or less valuable of an employee or friend or person than other people. It’s just an aspect of me, and it’s okay.

I do need to figure out how to rest. I think there’s a distinction between sleep and rest. Sleep is important, but it’s not the only kind of rest. I can be smarter about the way I rest. I can rest emotionally through reading the Bible, journaling, and writing. I can rest physically by sitting on my window seat and or taking a nap. I can rest mentally by watching a movie, reading a book, or hand-lettering. I don’t prepare to rest, though, and that both gives me stress and eats into my resting time. For example, when I decide to watch a movie and don’t have anything picked out, I spend so long trying to find something across too many platforms. So maybe the answer is to take some time and build up my watch lists with things I want to watch specifically on my rest times and then just pick from there. Maybe it’s stocking up on hand letting projects so that I’m not aimlessly trying to figure out what to do and getting frustrated and spending more time on my phone than my project. Maybe I’ll take up embroidery for when hand-letting isn’t enough to keep my focus and pull me to rest.

In order to stay alive, I need more rest than some unknown standard of rest for all people, and that’s okay. The way that I expend energy is just as valid as the way my dad expends energy when remodeling a house. That’s okay too.

I may have a wisdom tooth infection, but after the last three days of doing nothing, I’ve never felt so rested.

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