Marriage & Illness

This post is dedicated to the most amazing, wonderful and caring person I know. He is my closest friend and my soulmate – my husband. <3

Chronic illness is hard. Marriage is hard.

You know what is even more challenging?

Both.

That is not to suggest abled couples don’t face their challenges, because every relationship has difficulties. However, there are additional factors in a marriage where one or both spouses are disabled.

I met my spouse in high school. He became my best friend before he was ever anything else to me. We got married six months after I graduated high school. Let me preface this by explaining – a week after I graduated high school I began chemotherapy for liver disease. But like four days before I started my treatment, my then boyfriend proposed to me (we had been together for 2.5 years by now), after graduating from BMT for the Air Force.  Of course, I said yes! But then we had to go our separate ways for awhile. He went off to tech school and I continued working, started college and continued my chemotherapy.

We married on December 19, 2011, the same day we officially began “dating”, our three year anniversary. Coincidentally, it was also four days before my chemotherapy ended! We have now been married for over four years and together seven.

Despite this being arguably one of the most stressful years, it has been the absolute best and most fulfilling years of our marriage. It took a lot to get here. The first three years of our marriage were incredibly difficult. For a blink of an eye, I was worried we weren’t going to make it. Not because of my husband, or myself specifically; but rather because our entire marriage has been built on the foundation of tragedy and neither of us were poised enough to deal with it in healthy ways. We both came from abusive homes. We both have struggled with depression.  I’ve struggled with health issues for the entirety of our relationship.

People said we were too young – I was 18, he was 19. People asked me if I was pregnant, as if that is the only sane reason to marry someone. People rolled their eyes at me. People are ridiculous.

I’ve loved my husband for a long time… even in the really rough years. He has been there for me in my weakest hours. He has fed me, bathed me, held my hair as I worshiped the porcelain goddess, held me when the pain was too much, stayed with me in the hospital after my brain surgery – he has done it all for me. I will be forever grateful for every day I have with him. He never ceases to amaze me with his compassion, kindness, affection and he never stops challenging me to be a better human. I love him more today than I did the day we got married.

Here is the best advice I have for chronically ill and their partners!

  • Communicate. This is seriously the most fundamental part of any relationship, not just marriage. If you’re feeling overwhelmed, tell your partner and make a plan to reduce stress/responsibilities so you can compose yourself. If you’re feeling insecure, angry, sad, upset, depressed, attacked, happy, whatever tell your partner. There is nothing too small to tell them.
  • Take care of your spouse. I know this one isn’t easy. As a person with chronic illness, you’re probably relying on your partner a lot – they may even be your caregiver to an extent. This is definitely the second most important rule to marriage if you’re chronically ill. Caretaker burnout is a real and it is crucial to prevent this, for the safety and health of your partner. Make sure your partner is eating, sleeping and getting down time from you, your illness and caretaking. This might involve asking family and friends for help, or hiring some hands, so your partner can have time out. I’d strongly recommend talking to your partner about attending therapy or a support group, so they have additional resources at their disposal (also, you should consider therapy/support groups too, you both need third party people who you can rely on).
  • Establish your boundaries clearly. Boundaries are there to protect you from other people, but also to protect you from yourself – so you don’t ever have to compromise your mental and physical well-being for another person. This can be as small as you not wishing to discuss something if the other is yelling, or as big as choosing to get something like a DNR. And remember, boundaries are a two-way street. There may be things your partner is uncomfortable doing for you and that is okay. This goes back to the first tip – communicate! You need to talk about these boundaries, or they don’t work.
  • Check-in with your partner every single day. This one is so simple! There are lots of ways to check in – “how are you?”, “did you have a good day?”, “is there anything I can do for you?”. This goes both ways. Ask your partner how they are doing mentally, emotionally and physically.
  • Use words and actions of affirmation/appreciation. You love this person. Make sure they know this and thank them for their efforts in the relationship, and they should return the favor. When I had my brain surgery, every day, I thanked my husband for making sure I took my medications, ate and stayed clean. Now that I am more able, I thank him for being so patient with my recovery, or for supporting my passions. He responds really well to words of appreciation. Your partner might be a bit different, so you’ll need to tailor this to your marriage individually.

These are the broad strokes of marriage and are fundamental for all relationships – but the chronically ill face unique challenges. Remember, it’s a journey and some days things won’t be easy. It is okay to need help, to reach out and to struggle. It is okay to be vulnerable with your partner.

Incurably Atheist

Where did we come from? How did we get here? Who are we? What are we meant to do?

These questions have troubled humans for an unparalleled time-span. Living with chronic illness is especially challenging at times, because we often crumble under the weight of our experience and beg to know why – why us, why me, why am I suffering like this?

It should not be entirely surprising to know that people, family members included, have told me I am suffering because I am an atheist. Apparently, I just need to find Jesus. As if, I am doing this to myself, as if I deserve this dehumanizing existence, as if I am not doing everything within my power and reach to have a healthier and happier life. It is almost laughable for someone to patronize me in such a way with religion. Of course, in their mind, they are saving me from myself – which is why it’s so patronizing and condescending.  It is to suggest I do not have a life worth living. Even more, it is insulting to every newborn in every NICU, dying or experiencing debilitating illness – because it is to imply they also deserve, or rather there is a reason, for this existence.

And in those moments of hearing those sentences, those utterly destructive and dismissive phrases, I am weak. I am exhausted. I am frustrated and angry.

But don’t get me wrong, I have asked myself that question, I have pondered if maybe I prayed or believed, it might have been different. But that is illogical and it does not hold up. Religious people get sick. Rude people get sick. Nice people get sick. Children get sick. Everyone is susceptible to chronic illness, chronic pain and disability. Pain does not give two shits which god you pray to, which book you read to silence your fears and insecurities – no because pain just is.

And then I remember why I am not religious.

The funny thing is, my atheism is a source of great joy in my life and it is a part of my mental, emotional and intellectual wellness. People wrongly assume atheism means I do not have a purpose because when I die, I will be nothing (or they tell me I’m going to hell without realizing the irony). But I was nothing before I was born. I will be nothing when I die. I do not live for my death, I live for my life. Every day before I die is a day I have lived. It is a day I have discovered, a day I have loved and a day I have been in pain. The wonder of the universe, of our humanity and our evolution amazes me every single day. This Earth is a beautiful pale dot, in a massive cosmos, with so much for me to try to understand and explore. I am in awe of the complexity of nature and the wonderful and charming way of humans, even when my fellow humans take a metaphorical shit on me.

We just are. People just are sick. There is no reason. There is no god pulling at the puppet strings and forcing illness, pain and suffering on unsuspecting victims to teach them strength, or some other proverbial lesson. Please don’t mistake this as me suggesting your belief in whatever god is wrong, or bad. Believe whatever the fuck you want. That is irrelevant to me. But your assumption, as a religious person, that sick people are sick for some reason is wrong and harmful. It dismisses those who are actually experiencing chronic illness, chronic pain and disability. Instead of suggesting our lack of belief, or different belief is the cause of our illness, listen to us. Hear us in our existential crises and support us, because we need you – we need our friends and families to see us and to hear us, to actually hear what we are saying.

We are, you and I, at least one of the ways the universe knows itself. – Bill Nye

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.

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.

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.

Chiari Strong

It’s been a long time. Boo.

But, if you’ve at all followed my blog, you may recall me writing several posts regarding my journey, navigating the medical world. The journey is far from over, however, this last December I finally got concrete answers. I mean, I kind of already knew, but I needed an expert to tell me for certain (and so I had a piece of paper to hand doctors each time they claimed it was all in my head). It is actually, quite literally, in my head. As it turns out, I have Chiari 1 malformation.

Chiari is the result (at least in my case) of posterior fossa hypoplasia. The posterior fossa is the fancy bit which forms the back of the skull. Hypoplasia means incomplete or underdeveloped. So, basically, the back of my skull did not form correctly, causing crowding and eventually compression of my cerebellum (one of the important parts of my brain). Now, my cerebellum is falling out of my skull, sinking down into the little space where the spinal cord comes through. This causes decreased cerebrospinal fluid flow, as well as compression of the upper portion of my spinal cord and the compression of my cerebellum.

Tl;dr

My brain is falling out of my head and is squished. It’s progressive and will probably kill me. It’s really, really bad.

It’s been an interesting couple of months since a neurosurgeon specializing in Chiari examined my images and confirmed what I already suspected. In the time I’ve known with absolute certainty, several different people in my various support groups have died due to complications caused by Chiari malformation. Just last week or so, a 28 year old girl died in her sleep, after a decompression surgery. It’s really scary realizing how serious this malformation is and how little the medical community actually bothers to know about it. I say this from experience.

You see, over a year ago I was referred to a neurologist because I’ve had a headache and neck pain (24/7) for the last three years. Additionally, I’ve had worsening tremors and other odd symptoms. The neurologist suspected I might have MS and ordered an MRI. Her radiologist actually discovered this Chiari malformation. But it was completely dismissed because it didn’t look bad enough. The medical community is so outdated on what Chiari actually is, there isn’t much hope or point in seeing a neurologist for this condition. My cerebellum was only herniated 7mm on the right and 3mm on the left, so it wasn’t serious enough. She basically told me “there is nothing I can do for you”. So, I figured I’d get a second opinion. I asked my primary doctor to refer to me a surgeon since I figured they would know more. My primary read the radiologist report and said, “You know, I really feel this isn’t an avenue worth pursuing, I read the report and you’re fine.”

It took me an entire year of fighting and eventually spending my own money (despite having practically the best insurance available) to get a proper specialist to look at the images and confirm just how fucking serious this was.

I sent my images to an accomplished surgeon who has treated (there is no cure for this malformation) many patients with great success. He sent me back a report with what he saw just shortly after Christmas. This was actually my Christmas present to myself, as I had to pay cash to get him to look at the images, since he is in North Carolina and I was in Alaska at the time. In his findings, he remarked at the severity of the compression and how damaged my neck was. He suggested I follow up as soon as I moved to the lower 48, due to my progressive symptoms.

Getting a diagnosis was such a relief. It’s been a fucking exhausting 8+ years, trying to find out what is wrong with me. As it turns out, Chiari 1 correlates and occurs frequently in patients with Ehlers-Danlos Syndrome — a genetic connective tissue disorder. Chiari led me to the other diagnosis I need (yet to be confirmed by an expert). I probably have EDS too, based on all of the health problems I’ve had and then there is this:

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See how my arms do that freaky thing and go the wrong direction? Yeah, most of my joints are hypermobile like that and my skin is as soft as a baby’s ass. These are classic trademarks of Ehlers-Danlos. Take these trademarks, add in a congential brain malformation, chronic joint pain, random partial dislocations, weird flu-like symptoms and unexplained persistent health problems — you get Ehlers-Danlos. EDS is often underdiagnosed, or goes unnoticed for years and years, resulting in the physical, mental and emotional deterioration of a patient. Many EDS/Chiari patients give up on the medical community, feel alienated, dismissed or worse die mysteriously or commit suicide. Ask any EDS/Chiari patient, they will tell you they’ve probably been told once (or ten times) “It’s in your head. You need mental help.”

The words alienated, dismissed, trivialized, mistreated and discriminated against pretty much sum up the last 8 years of doctors visits. I’ve been told it’s psychological. I’ve been told it’s because you’re a womanI’ve been told there is nothing we can do. I’ve been told I’m too young (whatever the fuck that means, go to any children’s hospital cancer ward you fuckwit). I’ve been told there is no reason I should be this way. I’ve been denied adequate pain management. I’ve had to fight for literally every imaging test, every blood test and every referral.  I’ve lost my will and my sanity on the way. I’ve died and come back in this fight.

The fight isn’t over. I still need to be seen by a geneticist to confirm my Ehlers-Danlos diagnose and to rule out some other co-morbid conditions such as POTS, dysautonomia and tethered cord. I still need to survive and learn to manage this life. I still need to love people more, do more things and find pleasure in my desires.

After I get the necessary evaluation, then I can start thinking about brain surgery to slow the progression of Chiari malformation. Without surgery, I roll the dice on my life and there is no chance of any sort of pain relief. This probably will kill me, it’s just a matter of when. I hope to live my life as much as I can before that happens. I realized upon driving home from the post office today, I am an incredibly strong person. I’ve endured so much. I finally realized it was time to share this part of my life with you, or whoever the fuck stumbles upon this small corner of the internet. I’ve finally embraced myself and everything that has brought me here today.

– S.