Positivity Porn II

It’s been a couple of days since my most recent piece Litany of Positivity Porn. A friend of my shared it and it’s made a few rounds in some circles of chronic illness groups. That’s great, but I need to add to it. I feel as if I didn’t completely expound upon the idea of positivity porn and selling happiness in the place of legitimate change.

The friend who shared my article informed me of an awesome movement known as The Icarus Project. This movement focuses on the intersectionality  of mental illness in the world, while exchanging social support, ideas and pushing for a cultural shift towards acceptance. This is primarily why I wish to further discuss positivity and inspiration porn.

The foundation of selling happiness in the place of tangible assistance is damaging to anyone who experiences poverty, implicit and explicit racism, homophobia, transphobia, sexism, or ableism. That is what is so powerful about this language in my recent blog post. It can be applied to the experience of being told to buck up when you do not have control over serious, debilitating problems that are systemic or institutionalized. It is for anyone who faces the invalidation, marginalization and dismissal from their peers, families, friends, doctors and co-workers.

I wanted to further recognize the intersectionality of disability, chronic illness (physical/mental) and chronic pain. Humans are complicated individuals and everyone has a different story. Their experience is valid, it is real, tangible and it has affected that person in many ways.

I never want any of my readers to feel isolated because their voice is a little different from my own, or because they experienced something slightly different than I do. This isn’t to suggest that anyone even indicated that I left them out, but rather I felt I had left people out. I felt like it wasn’t enough just to discuss the core issue of positivity porn with regards to chronic illness. It is not authentic to suggest that positivity porn only effects a single group of people – no it is so much more than that. We cannot co-opt this experience as some singular instance.

This post is dedicated to a special friend, fellow spoonie and zebra – Gowen. Thank you for encouraging me to continue to use the power of my language, my voice and my writing to support my fellow humans.

Litany of Positivity Porn

All that negative stuff isn’t healthy. You just need to move on. You just need to think positively. You need to stop perceiving that darkness. Maybe you should pray to god. I don’t know why it’s like that, but there are people worse off. You’re not the only person like this, you know. I don’t know why you’re being so dramatic. I’m sorry I can’t handle all your sadness anymore. At least it isn’t cancer. You can still walk though. Why do you always talk about this? Why can’t you just talk about happier stuff? You should get out more. You should exercise more. Buck up, it’s not that bad. You just need to pull yourself up by your boostraps. You’re fine. Stop worrying. Maybe you need a vacation. When are you going to just let it go?

Stop.

But they mean well, you should just appreciate their positive thoughts. You just need to thank them for their prayers and good vibes. They were being nice. You’re just making a big deal out of nothing. You’re so ungrateful.

Your intention is irrelevant, if not selfish. You’ve exploited the sick with your brand of “empathy”. It’s fake. You may tuck yourself in carefully to get a good night’s sleep, but this culture is a gimmick. It’s a cop-out.

Seriously, your silence would be better appreciated. Didn’t your mother ever say if you don’t have something nice to say, you shouldn’t speak at all? Your positivity porn is tired, it’s old, and I’m over it. You’re trying to minimize, marginalize, dismiss, invalidate – move on because that will not be accepted.

My dearest chronically ill friends – that is what you need to say if anyone should ever utter a word of their positivity or inspiration porn. Don’t get me wrong, a healthy dose of positivity is important for experiencing the spectrum of human emotions. Happiness cannot exist without sadness. Grief does not overwhelm without ecstasy. Calm doesn’t breathe without anger swelling on the other side. We are a culmination of these experiences. Each emotion, each experience, each feeling and attitude has a place and should be weighed when we consider the human condition.

And please don’t mistake this as me saying that pain equals strength because that is not the case. There people who have moments of strength and weakness, with and without pain and illness.

But this culture of positivity needs to stop.

It is preventing legitimate strides toward a more equal foundation for the chronically ill and in pain and disabled. People are prescribing happiness in the place of medicine. Medicine that is supported empirically and scientifically. It’s intended as a placebo. A dose of sugar on our shitty lives. But we can stop it. We are sick and we are in pain, but we have a voice. Our voice matters. We are relevant. We are human beings and our health isn’t inconsequential. We are not collateral damage to a misguided drug war, or political mismanagement. We are in pain and we are exhausted. But we have the right not to be, as much as able.

Talk about it. Do not accept positivity and inspiration porn. Positivity isn’t a cure for genetic disorders. It can’t fix a congenital brain condition. Call your friends, family and doctors out on it. Correct them. Set those boundaries. And never accept less. This is critical. Do not sacrifice your mental, emotional and intellectual safety for that. Intention is irrelevant in this context. Your well-being is not.

 

Hello again.

It’s been a really long time; I know. I’m sorry. I’ve been very busy this semester with school and my health. I was officially diagnosed with Chiari malformation in August by an awesome neurosurgeon who looked at my MRIs in December of 2014. I went back in November for conference and a tilt table test. They diagnosed me with POTS (postural orthostatic tachycardia syndrome). After, I underwent a complicated brain and neck surgery November 11th to attempt to treat the Chiari and cervical stenosis that was found. And then, November 30th, I finally met with a geneticist and genetics counselor. They diagnosed me with HEDS – Ehlers-Danlos Syndrome hypermobility type. So, it’s been a busy few months.

Anyways, I find myself writing today because I faced significant emotional challenges.

I’ve really struggled for the last few years with feelings of guilt and inadequacy. We live in a world that puts a heavy emphasis on health equaling worth or value. You’re not healthy, you’re not valuable to society and you’re to be ignored or whispered about. At least, this is true especially in the US. The stories of disabled people only make the news when it involves some abled person perceived as doing something kind for a disabled person, or some disabled person “overcoming” their disability in some way (according to abled people). People don’t like talking about disability much. Many people assume disabled people are lazy, depressed or faking. Illness makes people incredibly uncomfortable, especially if it isn’t physically obvious and you somehow break the stereotype of disabled.

I’ve internalized a lot of this. I’m really harsh on myself, even though logically, I’ve done really well considering my circumstances.

It’s graduation season again, so, this has dredged up a lot of feelings again. There has been nothing I’ve wanted so much than getting my degree and getting into my desired career. I see a lot of friends moving on to graduate school, or getting into their career-fields. And I feel so fucking behind (even though I’m actually only a semester or so behind). The rational part of my brain keeps reassuring me it’s okay. It’s okay that I’m not done yet. I mean, after all, my freshmen year I underwent chemotherapy while working full-time and attending school full-time. It’s okay because I have moved twice during my time attending a university. I moved from Texas to Alaska and then Alaska to Virginia. It’s okay because I’ve switched between three universities. It’s okay because I’ve been fighting chronic illness for about 9 years now. It’s okay because I’ve managed a solid 3.7 GPA during my time at a university. It’s okay because this semester I underwent a complicated brain and neck surgery and still pulled a 4.0 GPA for the term. It’s okay, because I was doing schoolwork two days after my brain surgery. It’s okay and I shouldn’t compare myself. It’s okay because grades don’t matter that much. Still, here I am weighing them as if they should count for something in my existential crisis. And yet, the emotional side of my brain constantly fights these feelings of worthlessness that have been instilled in me from an early age, from my father and from society as a whole who, in general, doesn’t like to talk about disabled people as successful, intelligent and complicated individuals.

And I just… want so badly to be able to do something with myself. My husband told me if my health prevented me from using my degree, it would be okay, I’d get my debt forgiven and we’d find a way to make it all work. But I don’t want that. I want to contribute to society in a meaningful way. If money were no object, I would go into research after getting my doctorate. But it is an object and it is a barrier for me.

It’s so stupid. I can comfort a friend and reassure them to the ends of the earth. But for the life of me, I cannot treat myself with that same empathy and reassurance. I just have this crushing anxiety that I will never be anything or anyone. It’s all I want in this life. I don’t care much about money or things. I just want to do something valuable with my time. Whether it’s research in neuroscience, or therapy for sick people like me, or advocacy for chronically ill and chronic pain patients… I just need something. I need fulfillment — a reason to wake up for myself and not for the people I love. I hope that makes sense. I just need to get my shit together. Fuck.

Beep beep boop.

Beep beep boop

That’s what WordPress says when you click to make a new post.

I apologize for a bit of silence in my journal. I don’t know about you, but sometimes my mind doesn’t have a clever phrase or thought to deal with the ramifications of humanity’s fragility. I mean, let’s be honest – most of us have an originally brilliant phrase or analysis of some situation only once in awhile. Hardly ever, even. We tend to feed on those brief droplets of inspiration, squeezing the creative lifeblood out until it withers and dries up into nothingness.

I have not had one of those little nibbles of inspiration in awhile. I admit, I have been depressed. This isn’t really outside the realm of normal for me. The thing about living with chronic pain and illness is… you will at some point end up depressed.

I’ve felt like there was something I have wanted to say or flesh out into some form of art for almost three weeks. But each time I sat down to write, draw or work in photoshop, I just kind of blankly stared. It has been similar to an itch you can’t scratch. I had two of those for four days. I think it has something to do with coming off of an anticonvulsant and nerve medicine. This shit seriously fucked me up for the three weeks I was taking it. It made my entire face hurt. I never knew the edges of your teeth could hurt until I took this medication. It made everything significantly worse. I finally stopped taking it because I couldn’t handle it anymore. Unfortunately, coming off Lyrica can be as bad as starting it. I can’t say for certain my itches were caused by coming off this medicine. But I wouldn’t be surprised. There was a small patch, probably one inch by one inch, that itched so deeply on my ankle. If I scratched it, it would hurt, but if I didn’t touch it it would just itch like fucking crazy. There was no rash, bite or anything. No dryness. Nothing. Then two days later, same thing but in my left nostril. The itching has mostly subsided, but both spots hurt now. These were the most insane itches I had ever experienced in my life.

Riveting story, right?

I guess that’s all for now folks. I hope to have some more stuff for the non-fiction book I’ve been working on soon. I have also been considering a fictional blog because to be honest I fucking miss fiction writing.

Toodles.

I would rather… cancer.

This may have some triggers for anyone who knows someone with or has lost someone to cancer. Please understand, I recognize every struggle a person may face is their own – it is the worst in the world for that person. I do not wish to accidentally invalidate anyone dealing with cancer, or having to had dealt with it at some point. This is merely my perspective on my own experiences and what I wish I could change, regarding my frustrations with lack of understanding, empathy and compassion towards chronic pain and chronic medical conditions.

I’ve had family who suffered from some form or another of cancer. I’ve had friends. And friends of friends. I’ve seen the Think Pink advertisements in grocery stores, department stores, etc. I’ve even walked to “fight” cancer in spirit. I’ve donated money to cancer research causes. I’ve shared stories of strangers on my Facebook or used social media as a platform to raise awareness about cancer.

Why, then – if I am acutely aware of the horrors of cancer, would I rather cancer?

For the exact reasons above.

Everyone knows about cancer already. It was one of the most talked about illnesses, aside from perhaps heart disease, in the United States. There are always fundraisers for cancer, research grants being donated and made in the name of cancer and there are always marketing ploys to spread awareness. In the recent debates against the DEA for legalization of marijuana and narcotics, proponents for legalization have said things like:

Even cancer patients are being denied their medicines, now!

Because, you know, those who will suffer lifelong illness and debilitating pain forever, until they die, for the rest of their time on planet Earth, every day, 24 hours a day, 365 days a fucking year isn’t bad enough for legislators and DEA to pay attention. Shit gets serious though, once we bring in those cancer patients!

Cancer patients, children especially, are already being martyred to death. Now, they are a champion for legalization, but they are not necessarily the largest group of sufferers that America is/has been systematically ignoring, marginalizing and denigrating to an existence of pain.

This is why, I would rather cancer. Because then my story would matter to the majority of media and society. This is the most infuriating and frustrating part – for me, living with chronic, incurable conditions that are progressive. Even worse, there is literally nothing physically visible that marks me as a patient with incurable conditions – which will progressively destroy my body from the inside out. My conditions are so sinister, so silent, that many doctors can’t even recognize the symptoms or warning signs early, so they cause permanent damage to my autonomic nervous system and pain receptors, which only makes things a thousand times worse. This is especially true because I was adopted and Ehlers-Danlos is often diagnosed when multiple family members present – because it’s genetic. And because I was adopted and in poor state mandated care, no one seemed to think it pertinent to evaluate physiological causes for my inability to walk at developmental milestones (often a major and primary marker for Chiari malformation). Moreover, there is so little funding and research/awareness nationally and internationally, doctors often are left playing GoogleMD (no, I am not fucking joking, I’ve had multiple physicians google these conditions). Finally, the worst part is, both conditions are likely far more common than society is aware. Chiari and Ehlers-Danlos specialists and researchers suspect there is a link between conditions and that both are incredibly common, just so often misdiagnosed or ignored, we cannot get accurate statistics.

Both Ehlers-Danlos and Chiari have been found in other mammals, even.
Here is a great story with a happy ending about a puppy with Ehlers-Danlos, who was taken in by a family with Ehlers-Danlos.

Here is an awesome story about a lion receiving surgery to alleviate symptoms and slow the progression of Chiari malformation.

So, I know cancer is shitty. It tears families apart and people die from it every year. You can see this on an MRI or CT scan. You get treatments and hope for an end (remission). You have people fighting so you can get access to palliative care. Doctors take you seriously. They can identify what is wrong and they can send you to a specialist, relatively easily. There are so few doctors nationwide who deal with EDS and Chiari it is not even funny. I have to travel out of state and go to a giant university hospital, just to be clinically evaluated, with wait times over a year. I probably won’t receive the right kind of care I need, until after that.  Hell, I’ve had to fight just to get necessary imaging tests. The only neurosurgery clinic within an hour that I can go to doesn’t have a neurosurgeon familiar with decompression brain surgeries. I will have to go to New York City or somewhere else.

I am not saying my struggle is worse, but that if I could have picked a different fight than this incredibly lonely and challenging fight.. I would have. This fight crushes every bit of spirit I have, every single damn day, and I keep fighting because I want to live and I want to graduate, I want to maybe have a kid, I want to do things normal 22 year old women do. And I hope, one day, there will be awareness walks and fundraisers for people like me. I hope one day, people who are bound to an existence of chronic, unrelenting pain and fatigue will receive the same level of compassion from our families, friends and doctors that cancer patients, generally speaking, get. I know there are struggles many cancer patients face. I know they experience denigration, lack of empathy and understanding, I know they have frustrations within their set of problems and I do not deny that. No one’s battle is easier. It’s just… different.

I would rather cancer. But this will have to do and I will make the best of this.

Thunderclap Awareness

This post is copied with the permission of the original author, a friend on Facebook.

I know EDS Awareness Month is officially over, but I’d really appreciate you all clicking to support this EDS Thunderclap campaign. If you don’t know how Thunderclap works, it’s really simple and amazing. You click to support via Facebook (or Twitter), and on June 15th at 12:00PM, everyone who has signed up will have a Thunderclap message about Ehlers-Danlos Syndrome posted to their timelines all at once. Can you imagine the awareness potential here? We could possibly reach 10,000 people or more, all with the click of a button and literally no effort on your part. It’s one of the best uses of social media I’ve ever heard of, and I’d love for you guys to participate. EDS affects 1 in 5000 people. We’ve had several people in our support group pass away from EDS complications recently, because many doctors aren’t aware of the risks associated with it and have never knowingly treated an EDS patient. There’s no cure for our genetic mutation, but if we can continue to raise awareness, the outcome in catastrophic events could improve. Please help!

https://www.thunderclap.it/projects/27295-we-are-stronger2gether?locale=en

I think Thunderclap is a pretty neat feature, I only just learned about it. So, if you could take the time to press the button that would help so much!

Last Day (Not)

It is officially the last day of May and coincidentally, the last day of Ehlers-Danlos Syndrome awareness month. It has been a good month and I have been able to connect with many people, illustrating the stark reality that is chronic illness. But we are not done, this is a lifelong fight for awareness – not just one month out of the year. However, in the spirit of awareness, I hereby dedicate this final post to the final day.

Wouldn’t it be so nice if we could go, “Today is the last day of our illness. Tomorrow is the first day of health, happiness and life.”?

I noticed some people in my life do not like discussing depressing prospects. They say things like, “Wow, S. that’s really sad…” and they seem uncomfortable, like maybe I should just stop writing and talking about it. Yes, well living with chronic illness is very sad. It can also be very happy. I need to talk about it, for myself. If you are uncomfortable with the realities of life, which is pain, suffering and death, then perhaps you should reevaluate your position in life and yourself. There is nothing, in my eyes, healthy about turning your back on someone, or some situation because you are uncomfortable with depressing stuff. Life is a mixture of sadness, pain, failure, anger, resentment, but also happiness, success, empathy, love, laughter and greatness.

In any case, I will not stop talking about my life, my illness – the depressing stuff or the successes, happiness, love and laughter.


Quick side bar, I would like to link a really awesome post by a fellow zebra. Her struggle is very different from mine, however, she also suffers from hypermobility type of Ehlers-Danlos Syndrome. I am linking her post to illustrate the vast differences between patients, even patients with the same type of EDS. You can read it here. She is a young woman, a bit younger than I, who has severe gastrointestinal manifestations in her Ehlers-Danlos, nearly killing her, resulting in feeding tubes and a very limited life. She is UK based and has been writing to share her story and raise awareness about how sinister this genetic disorder can be, especially if left unchecked.


So, as a part of my integrative care for Chiari and Ehlers-Danlos, I started seeing a psychologist. I have already undergone some intensive therapy, spanning over two years, including a couple facilitated support groups. But, in the interest of showing my primary doctor how serious I am about integrative care, I sought out a clinical psychologist to manage the social and psychological implications of living chronically ill. She is an okay psychologist. It isn’t so much that I feel I need to see a therapist at this moment. I am in the best place I have ever been in my life, emotionally, socially and psychologically. But the truth is, living incurably comes with random, unforeseen complications. That is the very nature of both of my conditions.

Anyways, in the second or third appointment, she asked me, “What is it like? Living with these conditions?”. She stared at me, taking a drink from her coffee while waiting patiently for an explanation. I just sort of laughed and stared back at her for a moment. In the previous appointments, I had to tell her my history, including medical. In 2011, I underwent 6 months of self-administered chemotherapy for liver disease (no, not cancer).

So, after thinking for a moment, because I genuinely wanted her to understand, I said “it’s like chemotherapy, that doesn’t end”. She seemed shocked, like as if my previous descriptions of EDS and Chiari had been said in an alien language, or maybe that she thought it wasn’t as bad as it sounded.

“You know, you deal with splitting headaches daily, joint pain daily and random, unprecedented bouts of nausea and even vomiting. Standing up hurts. Sitting down hurts. And you’re just so fucking tired, like you haven’t slept.”

I think she finally got it, when I related it to my experience with chemotherapy.

The description stands true today. But I must admit, my symptoms have actually improved as of late, headache aside.I had an incredibly bad flare in the end of 2013 through the beginning of 2014. I used a cane and I almost never left the house. My husband had to help me shower many days and the pain made me cripplingly depressed. Things began letting up in the summer of 2014 and although it still sucks, it all still hurts, I am not that bad (for now). The reprieve has been nice and finding answers has definitely helped tremendously. Things are still improving, but only because I am finally getting the medical attention I need. My primary prescribed me beta-blockers for the associated autonomic dysfunction and just in the a week of being on this new medication, I am already improving immensely. I am finally sleeping better, my blood pressure and heart rate aren’t doing gymnastics anymore, and I don’t feel like I am going to pass out every time I take a shower. And that is just one facet of my illness being treated. I can’t imagine what will happen when I am under the care of a clinical geneticist. This is great. I can only hope for such improvement when I go to John Hopkins.

Don’t get me wrong, I still have my struggles and I will continue to struggle in the future. You will never be able to ask me, “So are you better now?” and get the answer yes. That will not happen. There is no cure. This is progressive, but my victories are moments like these – moments where it is manageable, moments where I can do things and be happy. I know this summer I will begin to have even more victories, because I will have my brain surgery(ies) needed to alleviate my headache and to slow the progression of the Chiari malformation. Moreover, I will continue to make connections with wonderful, supportive people who do not shy from the gritty-shitty aspects of life.

I have been fortunate since moving to Virginia, especially so. I have made some amazing new friends, some through support groups and some who work with my husband. A special shout out to my best friend from Alaska, you know who you are boob, for always enduring my 2am antics and just wholly loving me, supporting me and of course for always being there, when I needed you the most! Another quick shout out, to Fred, a new connection who can relate in so many ways to the struggle that is Ehlers-Danlos. A new friend who I know will continue to be there and who will endure through the same battle, who displays such astounding empathy and who checks on me regularly!

Finally, my husband who has shown me true strength, compassion, empathy and death-do-us-part love in our marriage. I know I would not have survived, thrived and lived to become the woman I am today without my husband. He stole my heart over six years ago. He gave it back, in better condition than I could have imagined and he has truly endured through the struggles many relationships may never face. He has shown weakness, strength, compassion and he has lifted me up with his love. I am so very lucky to have him in my life.

Today is the last day of Ehlers-Danlos awareness month. But it is not the last day of my illness. It is not the last day of voicing the pain and the victories I have and will face.

A Shameless Plug!

Okay, so I have been secretly working on a project. Until recently, I did not realize how attainable this dream was going to be. Now I have fully actualized it and I am ready to divulge a small portion of this dream. I have secretly been working on a non-fiction account, illustrating the existence that is chronic pain and illness. My blog has been a great way for me to feel and chronicle my life in a cathartic manner. But the reality is when it comes to pain, those who live it 24/7/365 rarely have a voice in the discussion about chronic pain, how to treat it, how to cope with it, etc. So, now I hope to give the millions of us out there, who silently suffer, a voice in the discourse!

A snippet from my project:

It is not my goal to alienate allies and supporters of chronic pain patients, but to illustrate to the masses, including our allies, the little things they may say or do that crush our spirits. I live in a state of empathy and the majority of the time, I recognize people mean well when they say things to me. Unfortunately, most of the time, they ignorantly presume telling me “Wow, you’re such an inspiration!” is somehow helpful, consoling, or will make me feel better about myself. Pro-tip: it isn’t, it doesn’t and just stop. This is a bitter pill and I am sorry, it will hurt, but try not to take it so personally. You have been conditioned by social media to martyr cancer patients, children with leukemia and other scary medical conditions. Try, if you are able, not to internalize this. But I have the right to define my existence – you have the right to define your own. This state of being is entirely frustrating, overwhelming and exhausting.

Enjoy! More to come, I promise!

– S.

Pain and Ehlers-Danlos Syndrome (EDS): A Guide

This is one of the most excellent and thorough explanations of the realities of living with Ehlers-Danlos and chronic pain.

Joint Issues

Why Write About Pain?

Well, the answer is obvious to fellow Ehlers-Danlos Syndrome (EDS), Joint Hypermobility Syndrome (JHS), and others who have a heritable connective tissue disorder or chronic pain syndrome. Pain is debilitating. Pain can permeate many aspects of our lives. Pain can change the course our life takes and cause long-term psychological effects. We all deal with chronic pain in a way that we tailor to our individual circumstances.

My hope is that this article helps you to find your own path for dealing with your individual pain and to encourage you to make informed decisions and ask questions when something isn’t working for you. As patients, sometimes we need to be our own advocates. We need to speak up for ourselves.

In order to be heard, sometimes it is necessary to understand how the doctor views a patient who comes in with chronic pain. What questions should…

View original post 4,897 more words

In this moment

Well, it’s been an exhausting week and it’s only Tuesday. That’s fucking rough, I think. I had an appointment with my new neurologist yesterday. It was a good appointment, as far as things could have been. I mean, he did have to Google my condition – but at least he did that, instead of just pretending my condition doesn’t cause actual physiological issues. He ordered the appropriate tests, new brain and neck MRIs as well as a CINE MRI, so I can follow-up with neurosurgery in the coming months.

And as good as it was, I am still scared as fuck for the future. I applied and was accepted to my new university (hopefully the last, before I graduate). I just really want my degree, I really want a future where I can work with people who struggle in the same way I do. But I’m so afraid I’m never going to make it, that I won’t survive the ride or that I will become disabled completely before that day comes. It will be such a big deal for me to graduate. For one, I will be the first in my immediate family to obtain a complete higher education. It’s not that my family hasn’t made something for themselves. My mom managed to get a high position in a civilian job for the federal government, without a degree, which is such an amazing feat. She got there with raw talent, dedication, determination and skill. That is amazing. However, that doesn’t change what I want – which is a specialized education with an opportunity to work in clinical research. I can’t get there without a degree. I love the brain and I am excited about uncovering knowledge. I want to be a person who shapes a field, or a perspective on the brain. I don’t need to make some flashy discovery or break ground in science. I want to help bring some aspect of knowledge to life, for someone, anyone.

I am so afraid once I have this brain surgery, I won’t be the same. I won’t be as able, mentally or physically. I am already struggling to keep up with my age group because of my medical conditions. And I envy everyone around me, who has already graduated and is working on their graduate work. All the people from high school who have already done so much more. I know I have done a lot, given my circumstances. Many people tell me I am an inspiration, but I don’t feel that way at all. Maybe people just have very low standards for what inspirational means, or they think they have some concrete understanding of who I am, what I’ve done and where I’ve been.

Getting my degree isn’t just about being able to work in my dream career. It’s actually so much more than that. You see, my husband has selflessly sacrificed years of his life working in a career he isn’t exactly fond of – for me. So, I could the medical insurance I need. I mean, obviously, that wasn’t entirely his motivation for joining the military. But it definitely played a large part in it. And now, he is finally starting to hone in on what he wants to do for a career and life. I so desperately want to return the favor, I want to be able to support him so he can pursue his desires. He wants to get a degree in mechanical and electrical engineering. I want him to have a career he loves, not one he resents sometimes. And what if I can’t? What if I cannot measure up and give him the gift he has given me?

It has taken me so incredibly long, years, to actualize that I am this capable and intelligent woman who has so much to offer the world. I have a unique platform in life, with an ability to empathize and feel so deeply for those who struggle. And facing my genetic condition and my brain condition, I feel like I will never get the chance to give everything I have to offer the world. I feel like I will never reach the point where I can do what I was always meant to do. It is crushing my soul and I feel like I cannot breathe. In this moment, it feels like I will not make it. I know deep down that isn’t true and tomorrow I am sure I will feel like I can do it all again. I won’t feel weak and momentarily be frozen in fear. I know tomorrow, I will continue to give the world what I can, until I can’t anymore. But for now, in this moment, I’m scared.