An Open Letter to the Family

2336.10.19

Dear Mom, Dad, and the rest of the family,

By the time you get this missive, the deed will be done. I think it is best this way—an old-fashioned letter and a fait accompli (that’s “an accomplished fact” for you, Raymond 🙂 ). I know it may come as a shock to some of you. I know, Mom, you’re going to be worried. Maybe even a little disappointed. But, please know this is the right thing for me. This is my choice.

Before I get into what the procedure entails, I’m going to tell you all how I got here. I know I haven’t talked to a lot of you about this, about my condition, about how it feels, and about how I feel. Nothing has changed. My legs still don’t work. Everything still hurts. It’s not a fun or informative conversation to have. I know it. You know it.

You all were so proud of me being assigned to the Melroy-Tereshkova Station. I worked hard to get here. My education, my thesis, my experiments, and my Ph.D. in zeroG food production have made me one of the leading experts in my field. But all of that was because of my Garrod-Chariot Syndrome. It was inspired by it, forced by it, and dreamed because of it. As my GCS got worse, I knew… everyone knew… the only real place for me was a zeroG station.

Sometimes, you message me and ask when I’m going to come home to visit. For years, I’ve put you off because of my class schedule, my exams, my dissertation defense, my job. The truth is that I don’t want to come home. To your home. I was born on Artemis II, but the Melroy-Tereshkova Station is my real home. It’s the one place where I can be myself.

It’s not that I don’t want to see you. I do. It just hurts too much. The Garrod-Chariot Syndrome has progressed so far that the physical act of sitting in a chair or even laying down on a bed, while on a 1G-gravity planet, would be too much after a short time. I’d have to resort to painkillers that would knock me out. A visit to see you wouldn’t be much fun with me sleeping, in pain, or drugged to the gills all the time. That’s not me. That’s not the daughter, sister, niece, or cousin you knew in years past.

For as long as I can remember I have hurt. I remember the first time I realized that not everyone lived with pain every single day. It was a relief. I didn’t suck as bad as I thought I did at hiding the pain. It was also a slap to the face. Why was I the only one in the family to suffer from this disease?

GCS focused my life. With limited career options, my fierce determination, and the medical grants it made me eligible for, GCS paid for my education, my gravity care, and for the life it messed up. When I realized I had to make a future for myself or live in misery and pain, I turned my mind to find a cure. When that failed, I found a workaround: the stars and zeroG.

Even here on the station, where I feel not even one-tenth of the pain I feel on a 1G-gravity planet, GCS is my ever-present companion and warden. But I still have a good life. I’m happy. I’m respected. I’m competent. I’m whole in the way that only I can be.

Except…

You all knew there was an “except.” At least, Mom and Dad, you knew. And anyone you’ve told about our conversations.

[As an aside, the physical act of writing a static letter is as strange as it is liberating. There’s no back and forth. I’m finally just saying what I’ve always wanted to say, knowing no one can thread the email to object, or argue with me in DM, or send flailing “good vibes” or “hopes and prayers” at me. So, forgive me if I meander.

I digress…]

Except…the GCS has advanced to the point that my unused limbs—my legs—have become so delicate and so brittle that they are in danger of literally breaking off. Over the last few months, my doctors have become so concerned that they’ve ordered me to wear protective leg braces. Imagine that. Me floating around the station with hunks of plastisteel framing my legs to keep them “safe.” Instead of floating in a natural form with my legs partly curled, they stick out straight and get in the way of everything.

Mary—you remember when you broke your knee and had to be in the wheelchair for weeks with your leg out straight? Everyone kept trying to “help” you into the lifts while leaving your foot stuck outside the lift doors. Yeah, it’s like that. Only it’s part of me and it’s never going to go away. Ever. And I’m the unobservant “helpful” one leaving my feet sticking out of the lift doors.

The braces itch and rub. For limbs that haven’t worked in years, they are annoyingly sensitive. It’s almost like Aunt Zoe’s phantom ovary pain. After the endometriosis surgery, the ovary was gone, but she could still feel it because of the confused nerve endings. My whole body seems to be one giant confused nerve ending.

So, that leads me to the whole point of this letter. As of 2336.09.21, both my legs will be amputated from the knees down. For me, this will be a new sense of freedom. The cutting off of a part of me that:

1. hasn’t worked in decades.

2. has become a physical and medical detriment to my health and safety.

The procedure is a simple one. The flesh and bone from my knees down will be surgically removed. My femurs will be uncut at this time. Surgical end caps will be added to the end of my thighs and I’ll have hardened end caps to wear for at least a few months after surgery. Later, my doctors and I will evaluate if we need to remove part of the femur as well. We (the doctors and me) hope not, but we’re not exactly sure how my GCS will react. There are small risks of infection and end cap rejection, but these are risks I’m willing to take.

It’s not like any of you will really notice in the grand scheme of things. You now know I won’t return to Artemis II for the reasons stated above. You only see me from the waist up on video calls and recorded messages. I will still be me. I just thought it was important for all of you to know what I am doing and why. I don’t want a video interview to shock you. Or a surprise visit to the station to be more dramatic than it already would be.

Yes, I did talk with Mom and Dad about this first. As you might imagine, they were not happy with the thought. In their minds, and in the minds of many others, amputation means that I won’t be “whole.” On the other hand, leaving things as they are for aesthetic reasons could kill me—never mind the quality of life thing. Not to put too fine of a point on it, legs that haven’t been used in a very long time have no muscle mass. Between the boniness and muscle atrophy, my legs are not a pretty sight. Trust me on this. The lack of pain will also help my mood. A happy scientist is a productive one.

As for the idea that I won’t find the perfect partner without legs? Well, if my “perfect partner” can’t accept me as I am, then they aren’t perfect for me. This is my body and my choice. I’m happy that I have the right to choose this surgery; that the amputation procedure exists, that there are no laws against it, and that I have the money to pay for it.

Please be happy for me. If not happy, please understand and accept that what I have done is in my best interest. If you can’t do either, I guess we’ll burn that bridge when we get to it.

Truth be told, this was a terrifying letter to write. But I needed to put it down in words and in a way that couldn’t be changed. I feel so much lighter now.

This letter should arrive sometime in late 2336.10. I’ll send a follow-up email by 2336.10.30 to tell you (maybe even show you) how well I’m doing after 4-5 standard weeks of healing.

I love you all and I do want to hear from you.

As always,

Hayley

Jennifer Brozek

Jennifer Brozek is an award winning author, editor, and tie-in author. Never Let Me Sleep and The Last Days of Salton Academy were both nominated for the Bram Stoker Award. She was awarded the Scribe Award for best tie-in Young Adult novel, The Nellus Academy Incident, and won an Australian Shadows Award for best edited publication. Visit Jennifer’s worlds at jenniferbrozek.com.

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