Not Spoonie Enough

Am I spoonie enough?

It’s something that every chronically ill person at least once says to themselves:

Am I spoonie enough?

Ever since Christine Miserandino first coined the word by comparing restaurant spoons to her daily energy levels and how to relegate them, the spoonie phenomenon has been a boon for everyone dealing with any type of chronic illness. It’s something that the abled or otherwise non-ill do not seem privy to, a kind of wink-wink-nudge-nudge to unite any and all permenantly sick individuals. But with all labels, there’s the catch-22, the idea that manifests in one’s head from time to time of being “worthy” of said label.

Not long ago, I was one of these people. I took up the spoonie mantle, started interacting with other spoonies on social media, and then there came the doubt. As a child, I was diagnosed with global muscle delay, a disorder affecting my muscuoloskeletal functioning and development. I was on a strict OT/PT regimen, as I was affected in both fine (hand movement and dexterity) and gross (walking, running, gait) movement. When you’re a child, you don’t really understand what’s going on. Just, once a week, in school, you’re taken out of class to a weird room and made to solve puzzles. Since I also had sensory integration issues, I also was treated with techniques like those often prescribed to children with autism. I loved my swing, and I loved my brush, and I never questioned their uses. By around sixth grade, I had “graduated.” It had taken the first seven years of my life to be able to tie my shoes, and eight before I could walk up a flight of stairs without assistance. I still to this day have some troubles, but they’re minor and could easily be chalked up to just being an ungrateful millennial (as in “you wanted to go to the fair, now you say your feet hurt? Ugh”).

Sometimes it takes my mom reminding me of some of my other issues. Being adopted, they were in for one surprise after another when they brought me home. My mom laughs that as an infant, she thought I had “two buttholes”; it ended up being that I had an unfused tailbone, causing a gap at the base of my spine, which I still have, though much smaller. When I was little, I also had a low blood cell count. Doctors monitored my heart because it had a murmur in it. I have a crystal clear memory of being four and having “Mr. Snake,” aka a plastic tube, shoved in my nose with intent to get to my stomach, but I hadn’t been able to handle it. I often tried using inhalers for asthma, but couldn’t stand the taste of them. My grandparents were constantly taking me to doctor’s appointments, but all I remember was spending time with them afterwards, going to Arby’s at the mall. When you’re a child and go through such experiences, you don’t understand what’s going on. It’s only later, as an adult, that it hits you that your life positively revolved around medical treatments, procedures, and doctor’s offices.

Throughout my adolescence, my journey continued. At around age sixteen, I was taken to an orthopedic specialist and diagnosed with chondromalacia patella; essentially, my growth spurts around nine years old had been too fast for the cartillege in my right leg to keep up. After an MRI, it also was revealed that the same knee had a benign fibrous tumor, but due to my age, nothing was done. Also in high school, my reproductive health took a plunge. I was in horrendous pain and had debilitating pain each and every month, so I went on birth control. As if my physical issues weren’t enough, I began to show troubling symptoms in regards to mental health. I would have panic attacks, I would self-injure, and I had visual and auditory hallucinations. It was the opinion of the psychiatrist who was overseeing my medication that I apply for SSI, but at the time, we didn’t listen.

During undergrad, I was diagnosed with two more physical health problems. I had been having a persistent cough, especially at night, that my pediatrician could not find the source of. One trip to an ear, nose, and throat specialist and we nailed it down as acid reflux. I was then on a regimen of antacid pills. Not long afterward, I began gaining wait rapidly and my fatigue worsened. I also noticed that I always felt cold. The culprit was hypothyroidism, which meant more pills. On top of all of this, my mental health wasn’t getting any better. Once I graduated in 2012, things went from okay to abysmal. My grandmother died in July (as a matter of fact, the exact same day as the shooting in Aurora, Colorado), and with her loss, it was as if I imploded. Between 2012 and as I write this, I have been hospitalized for panic attacks five times. During these episodes, my heart races, I shake uncontrollably, and I can think about nothing other than killing myself. Twice did I cut myself with broken glass, and the last instance, this past December, I tried to poison myself. I began therapy in January of this year, and have been told to not attempt going back to work unless I become stable. So far, so good, fingers crossed.

Now the average person may read all of the above and remark along the lines of “HOLY SHIT” or “I could not have survived that.” But to me, it’s just been life. I was once diagnosed with a heart murmur, asthma, low T-cells, global muscle delay, and sensory processing disorder. I outgrew some, only to be diagnosed with more illnesses, both mental and physical. My most recent diagnosis was Post Traumatic Stress Disorder by my current therapist. Well, if you don’t count what I’m about to describe below.

I spent almost fifteen years dealing with extremely painful periods. Roughly two weeks before the culmination of my menstrual cycle, I would begin to feel physical aches, exhaustion, and constipation. Then, once it arrived, I would first experience cramping enough to lay me in the fetal position, followed by an entire day of relentless flow. Even wearing a night pad, it would get on both my shorts and my bedclothes. With these periods, I would have to cancel plans. I would be bedbound. I would essentially be suffering three weeks out of every month. By this year, I had had enough. I approched by OB/GYN and told her that I needed a hysterectomy as soon as possible.

There’s something else I forgot to mention, something none of us saw coming. When I was born, I was assigned female at birth. When I saw my former OB/GYN, getting the diagnosis of dysmenorrhea, she never had anything to say about my genitals. When I switched providers due to a change of insurance, the gynecological nurse took one look between my legs and looked up at me like she had stared up at the creature at the end of Annihilation. When the doctor looked at me, she said “so it appears you have an excess of hymen. I want to schedule a procedure to remove it all.”

In July 2015, I had my procedure, and when I woke up, my mom tried to explain what she had found, but I couldn’t make any sense of it. What did she mean, I didn’t have a vagina? Of course I did, I had a period every month. Then the doctor came and sat down, and with her was a crude drawing of what I looked like. “Your urethra runs the entire lateral side of your pubic area. Back here is the vagina, but it’s opening is very small. We were only able to widen it, so you should be able to wear tampons now.”

And that’s how I found out that I had been born with an extremely rare birth defect, a congenital absence of vagina.

Bear with me now because I’m almost done with the details.

The day after Memorial Day, I was taken to the hospital for my hysterectomy, which would be done via abdominal incision, of course. It would be my first surgery, and my parents (both cancer survivors and veterans of being opened up) were calm and yet emotional. I remember my mom being almost in tears as I was wheeled into the operating room. My last memory was being stapped down by my arms and, as if at her office, my OB/GYN putting my feet into stirrups. As these things go, I then lost the next hour and a half to the gods. Then, the next thing I know, I’m in a hospital bed and my stomach is stapled up. Both my parents are there. The doctor comes in. In her comforting and yet blunt bedside manner, she explains the findings: “I get why you were in a lot of pain now. Your entire right side was filled with endometriosis. We unfortunately had to remove one of your ovaries because it had so much of it on it. The issue now is, some of it’s also on your bowel. Once you recover, you’ll be scheduled for a routine colonoscopy. If we find nothing wrong, then nothing further will have to be done. But it almost seems as if you have an obstruction, and in that case, we would need to operate again and fit you with a temporary colostomy bag. For now, you just rest.”

Yes, ma’am.

I was in the hospital from May 29 to June 1. My release was interrupted by the fact that I was (oh, joy) found to have a low T-cell count. I was then brought home with staples in my stomach and spent the next several days trying to empty my bowel. By the time of this writing, my staples are now out, I’m decently regular, but I still don’t sleep well at night and often find myself eating chocolate pudding at one AM.

And this is where I resume my original topic.

After all of this ordeal, do you think I’m spoonie enough? I used to doubt myself a lot. I used to think that others had it worse. Now I’ve been through major surgery and could be down for another.

This is what internalized ableism does to us. We are all soldiers, each and every one of us, fighting our own bodies and minds rather than in a war. From the day we’re born, some of us are drafted. Sure, we might have a day or two every once and a while where we feel some semblance of normal functioning. But as Miserandino explained to her friend the first time she ever conceived of the spoon theory, having enough spoons doesn’t mean that someone is “normal.” It means that someone just doesn’t have an illness. But that could change at any time. Moreover, as her friend began to realize over the course of the experiment, that most non-spoonies take their lives and the energy they expend to get through them for granted. You don’t “just” wake up, you need to pull your feet out of the sheets, find clothes, eat something, make sure you have everything organized to start your day, and then and only then are you ready to go. Can you drive to and from work safely? Can you perform to society’s base level of production? Can you do it all while wearing a false smile so people don’t know that you’re in pain?

My first day of full-time graduate classes, I had my period. I had made fast friends with a woman who was almost fifty, and with one expression I hadn’t even realized I had on, she knew. “You look like you’re in pain,” she said. It takes a lot for most people to realize this, but middle-aged to older adults just know. I think that’s why I’ve had so many good friends outside my age bracket, but then again, this cohort also had a student who used a wheelchair and had limited usage of his arms, so I think she had the extra insight of there being disabled people around. I appreciated that for once, my pain was getting noticed. I told her about my situation, and she was very sympathetic. I should mention, we were a part of a master’s level social work program. From the get-go, social workers are simple more attentive and sensitive people. But it still felt earth-shattering to not only have someone recognize my suffering, but want me to open up about it. These moments are as rare as the Philosopher’s stone.

Simply put, we spoonies live in a world that’s not designed for us. It’s kind of like how I once read a great book on how introverts are forced to navigate an extroverted world. No matter what someone says, being introverted isn’t something that one can “overcome.” It’s not social anxiety, it’s not the “jitterbugs,” it’s a fundamental personality difference that some believe is genetic. Along that line of thinking, having a chronic illness, mental illness, disability, or autism isn’t something that can be “risen above.” Despite so many movie tropes — there’s a trailer for a film right now called Upgrade if you think that ridiculousness is over — you can’t just push a button and have it turned off. Human beings are not computers that come with apps that you can uninstall.

So if you’re out there reading this and have any feelings like I did — self-doubt, self-deprecation, the idea that you’re not struggling enough — do what I did and crumple them up. You really should be careful what you wish for. After all, there are too many abled people, non-sick people, neurotypicals, what have you, who walk around this world thinking that if they were ever disabled, they would just give up. Look no further than the anti-vaxxing debate that, after a recess, has again reared its ugly mug. Please don’t think that you’re not sick enough to be in the spoonie club. We’re nice people, we don’t judge. I’d say we have cookies, but with the Celiacs, we had to toss them out. Just come for the hugs.