The Pain Train

It’s been awhile since I have taken the time to write – aside from a few shitty, short poems that are irrelevant to the content of my blog and life.

I’ve been incrediblggi todayy busy this summer. Between managing my health and preparing for my final year of my degree, it’s been difficult to force myself to engage in hobbies which – yes – sometimes become a chore. We can blame the depression typically associated with unending physical pain and illness.

With my irrelevant excuses for my absence out of the way, I’d like to ramble about something that has been eating at me for months.

I’ve become this person who wears a shield of strength for those with disabilities and atypical neurologies. I have crafted this careful, firm and arguably profane voice which challenges preconceived notions and thoughtless ideas about people like me. People with Ehlers-Danlos, or whatever other rare disorder, or whatever. In doing so, I’ve been quite open and candid about my own illness. I’ve openly shared my symptoms, struggles, weaknesses and flaws. I’ve breathed stories of heartbreak and grief. I’ve opened up about my failures; failures to accept, or withstand my disorder, or as I have affectionately named it – my genetic lottery ticket. I let anyone who was willing to listen in about the days when I want to die and the days when the pain and fatigue is simply too much. Also, I’m pretty sure there is an incriminating Facebook post somewhere when I reminded everyone to remember I was a badass, after my first brain surgery. Drugs were involved.

But there is a casualty of war in doing so. I have yet to find any fellow zebra, or chronically ill person, discuss this casualty. I want to talk about it as candidly as I have done all other things.

People in my life have begun to minimize their pain and suffering. I have a wonderful cousin who is struggling to find a diagnosis for her unbearable back pain. She is probably one of the most compassionate and empathetic people I’ve met. She’s so different than I. She has far more patience, than I can bear, for people. She speaks kindly, while I laugh out obscenities. And here she is, when she talks about her pain to me, she says how it in no way compares to mine and she can’t imagine what I must go through, and how she feels she’s whining and complaining.

This is not okay.

I need to get something straight for people. Pain is pain. We all experience it, admittedly, at varying lengths and degrees. My chronic pain isn’t worse than my cousin’s. It’s different. I mean, sure, if we’re going to objectively measure (and objective measurements only really have a place in an ER or trauma ward), her pain is probably worse than that time you stubbed your toe really hard on the side of your desk that juts out awkwardly. It’s probably worse than the time I slammed my elbow into a door frame. Or dropped a hammer on my foot. My pain, on the daily, is probably worse than when your four year old skinned his knee when he fell off his bike.

But I’m not really referencing small, acute moments of our lives when something hurts. I know that time you stubbed your toe really fucking hurt, though. However, there is no badge for who has it worse. Let me be clear – I’m not saying chronically ill people are guilty of intentionally minimizing the pain of those around us. But our rare or rarely diagnosed disorders tend to sort of blot out the sun a bit, and sometimes it’s hard for that light to reach those around us who have different kinds of pain – chronic knee pain, a bad back, or that unending neck pain. My cousin was minimizing her pain. If I had to guess, it’s because I am so open about my pain, surgeries and hospital visits, so she had this clear image of what she thought ‘bad enough’ looked like and her pain effects her in a different way. Somehow, maybe, she felt her pain just didn’t match up to mine. I corrected her every time, if you were wondering. Her pain does. It sucks just as much.

Just because I have a genetic disorder you’ve never heard of, doesn’t mean your chronic back pain doesn’t hurt the same way. You deserve a space with me, with your friends, with your family to talk about that pain, how it effects your daily life. You don’t need some life-altering diagnosis (MS, GP, EDS, blah blah blah) to be a part of the pain train.

It’s not just my cousin. I’ve caught my husband minimizing his pains and aches. I’ve caught friends online doing it. I know this comes from a place of love. These people are trying to express they understand the severity of Ehlers-Danlos and what I experience. I do appreciate that sentiment. I appreciate the love and care. It’s just not healthy though – for them or me – or let’s be fucking real here – anyone. We can experience pain together and commiserate together. Don’t hide in the shadow of my illness because you feel your pain doesn’t meet the metric for shitty enough. It does. I want to be there to hold your hand. I want to be with you, in that sea of shit and pain, when it keeps you up at night, when it makes you cry, when you just don’t know if you can handle it anymore – I want to be the person you come to because I get it.

We need to do better to make space so our friends and family know that, while our illnesses consume our lives and dominate our dinner-table conversation, their pain is just as valid and there is no need to minimize it. We don’t own the patent on the fuckery that is pain. It isn’t exclusive to our weird diagnoses. It’s the shitty side of the human experience, and we all deal with it. This planet is fucking huge. I think there is enough space for everyone’s suffering.

This post is dedicated to Katelynn.

To every nurse ever.

Dear register nurses, CNAs, and triage staff:

This piece is dedicated to you. You see, while you may not be doctors, you will have the power to make or break a hospital visit for a chronically ill person. You have the power to impact someone like me forever, whether it is in a positive or a negative way – that will be up to you ultimately.

I’ve been struggling to put this into words for a few months now. You see only three weeks after my brain and neck surgery, I ended up in the ER (this was in December). This was perhaps the most terrifying day of my entire life. I thought I was going to die.

I woke up with a throbbing headache. It was pretty bad but I assumed that maybe it was because I had missed my last dose of pain medicine. So, I took my medicine and managed to get some water down, before camping out on the couch. I was pretty miserable. I turned on Netflix and drifted in and out of sleep for a few hours. When I woke up, my headache was just as bad, and I began vomiting. Okay. So, it was pretty bad. But it was probably just the percocet causing nausea? Right? Wrong. I was stupid. I knew there was something wrong. But instead of just going immediately to the emergency room, I waited. I waited and it got much worse. I went down hill as the hours passed. Soon the vomiting was becoming non-stop. I couldn’t eat or drink. The pain was inching from an eight to a nine, something I had rarely experienced in my life. Moving hurt. Opening my eyelids hurt. Everything hurt. I felt like my brain was going to leak out of my ears. Finally, we hit the the twelve hour mark. I couldn’t even keep my medicine down to manage the pain. I was throwing up every few minutes. I start choking on my own vomit and my husband saw me turning blue, somehow I manage to get it down and gasp for breath. At this point, he’s like, “hospital now”.

It still hurts unlike anything but I am scared to go to the ER. You see, I’m scared because I’ve been mistreated in hospitals before. I beg my husband just to take me to urgent care instead and call my neurosurgeon who is one state away. He concedes and takes me to an urgent care clinic only five minutes from our house. They get us in pretty immediately. But my heart rate is through the roof around 120ish, I can’t stop throwing up, and I’m curled up on the table in the fetal position. And it’s pretty clear they do not have the equipment to care for me. As soon as the doctor sees me, she says I need to go down the street to the emergency room and she won’t charge us for the visit. She kindly gives me a vomit bag and hurries us out.

The closest ER, much to my chagrin, is a Catholic hospital. Great. Catholic hospitals are notorious for providing bad care, especially for women, but we can’t really afford to make the trek 20 minutes across town to the military ER. We get to the hospital and the receptionist is pretty nice, but she seemed a bit irritated that I was loudly vomiting into a bag. We barely get a chance to sit down and they bring us back into triage.

The triage nurse asks with an irritated tone why I’m there, and if I had consumed an energy drink in the last hours, because my heart rate was still about 120 and my BP was 150/90ish.

All right dude. We just told you I had brain surgery three weeks ago and I’m experiencing the most excruciating headache I have ever had in my life, and you wanna know if I’ve been pounding down energy drinks? Did you miss the part where I said I haven’t been able to keep anything, water included, down? How about the non-stop vomiting? As a nurse, please tell me they taught you what intractable pain was?

This is when I notice the intake room is fucking filthy. My stomach sinks measurably. I already regret my decision to come to this hospital, but I’m here and I know I need help. The triage nurse takes me back and gives me a gown to change into. My husband helps me in the bathroom change. I put it on backwards, intentionally, because he said he was going to hook me up to an EKG. I’m trying to make his job as easy as possible.

This nurse has the audacity to give me shit for putting it on wrong, like I’m too stupid to put it on right and it was uncomfortable to see my breasts, and I explain I was trying to make his job easier to attach all the wires. I have never been made to feel ashamed of having breasts by a healthcare professional ever in my life. I’ve been through some pretty humiliating procedures too and no nurse, male or female, has ever made me feel as this man did for my breasts being partially exposed. I’m sorry – but you’re a nurse. You cannot seriously expect not to be exposed to the bodies of human beings, including those of the opposite sex ever, even if you do work at a Catholic hospital. I think my husband can sense I’m regretting coming to the hospital now. The triage nurse hooks up the EKG and thankfully leaves. A new nurse enters the room and starts prepping an IV so she can give me zofran and two doctors enter with her. The doctors ask what’s going on and we explain I just had a craniectomy, C1 laminectomy, C2 laminoplasty, dural graft and cerebellar tonsil resection and I’m experiencing an excruciating headache, etc etc. The doctors leave to call my neurosurgeon for recommendations.

My new nurse is this sweet young woman with red hair. She warns me the dilaudid is going to make me feel like someone is sitting on my chest and that it’s going to hurt initially. This sweet woman holds my hand as she gives me the pain meds. Then she explains they are going to keep me for a bit while they figure out what to do. Finally sweet relief. I am finally not vomiting non-stop and she turns the light off as she leaves. She returns with the doctors after a little while, explaining they are going to get a CT to make sure I didn’t spring a leak, but that it was probably rebound from my steroids. The nurse sticks around for a few minutes chatting with my husband and I, pleasantly cracking jokes with me, and asking if I need anything. She treats me completely different than the triage nurse – with empathy, kindness and dignity.

I eventually a CT, and the CT technician makes me change my gown right way, because he also is made greatly uncomfortable by having the gown tied in front. I feel pretty gross and ashamed by this point. And I am starting to get nauseated again. After my CT, my vomiting starts back up, and it’s becoming uncontrollable pretty quickly. Thankfully, my nurse comes back and sees this. She has already given me the max dose of zofran but I ask her if she can get the doctor to give me more, because the vomiting is greatly aggravating my headache and it looks like we’ll be waiting for a bit longer. She gets the doctor to prescribe another dose and manages to get my vomiting controlled again. After awhile, the doctor reappears to let me know my CT looks great and that they spoke again with my NS, he said I was experiencing rebound and they prescribed a med-pack to deal with it. Finally, we’re approaching discharge.

When we got home, I asked my husband if he thought I was overreacting to how the triage nurse and CT technician treated me. He agreed that they acted very disrespectfully by shaming me, and agreed that the other nurse who took care of me was the absolute sweetest. I wish I had remembered her name, I would have sent her a damn fruit basket. Nonetheless, we decided we’re never going to that ER ever again.

You see nurses – you can make the absolute difference in our visits. When I got to that ER, I thought I was dying. I was almost certain I probably had a CSF leak, which is incredibly dangerous. Remember the power you have. Remember you might be the difference between a person choosing to seek help again. Remember to treat your fellow humans with empathy and dignity.

And to the nurses out there who already do that, thank you for everything you do. Thank you for all the blood, shit and piss that stains your clothing, thank you for saving our lives, thank you for holding our hands when we’re in pain, thank you for laughing at our desperate attempts of humor in our darkest hours, thank you for the overwhelming emotional burden you take on and thank you for being you.

 

Recovering, but not really.

It’s been over four months since my complicated brain and neck surgery.

To those of you who have ask ‘are you better?’ or ‘are you cured?’ and to those of you who say ‘wow you look so normal!’, stop, please. Please don’t project your idea of my health for my recovery. I am not angry, or even remotely upset, mostly just frustrated by your ignorance. Let me clarify – ignorance as in you have not been exposed to this situation and therefore there is no reasonable expectation for you to know and understand. I use the term recovery lightly and so does my husband. He often even refers to me as ‘broken’ – in an endearing, unoffensive way.

You see when I signed consent for my surgery, I also agreed that I understood that the biggest issue with the surgery is it can fail – it is a treatment. Not every human will respond to the treatment similarly, and additional factors must be considered.

If you were wondering, it didn’t fail, but it also kinda did. Chiari is sinister like that. I am sure I’ve mentioned before my neurosurgeon compares the condition to wearing a shoe two sizes too small. You’re wearing the shoe for your entire life, but your foot doesn’t really fit right, it hurts and soon you start to lose feeling in your toes. So you go to the doctor and they untie your shoe for you, but two of your toes are necrotic and will need to be removed. You should really thank your lucky stars you didn’t die.

But you still lost the two toes. The damage is done.

Only, instead of your foot, it’s your brain and your head. Instead they remove small portion of your skull bone, they cauterize the portions of your cerebellum, they remove tissue to make room for your brain, but at the end the damage is done. The reduced flow in your brain has been quietly hurting you from day one.

Now, as I said, the surgery didn’t fail but it did. You see, prior to surgery, my pain baseline was a six out of ten. For those unfamiliar with the pain scale, a six isn’t considering life-threatening. It’s four exhausting points from most excruciating pain ever. But it is considered high and tends to interrupt daily life. It prevents you from socializing, it prevents you from going to school, doing chores and tends to get in the way of everything in general. Six is verging on an inhumane quality of life for someone who is expected to be in pain for the entirety of their existence. So, post-surgery, surgical pain aside, I was down to a two. That doesn’t sound so bad, right?

Right. But also, wrong. The two itself isn’t bad. It is the changes that ensued that are bad. About January-ish, I began experiencing a new headache. Instead of at the back of my skull, it now hangs out behind the eyes, and it’s especially bad behind the right eye. So bad, I am actually experiencing more vision symptoms now than I was before such as extreme light sensitivity, blurry vision, auras, etc. At first, I was a two all the time with a minor ache here and there. But now, my baseline is two and sometimes my pain creeps up towards a four or a five. Now it appears I could still be having intracranial hypertension. We’re following up with a vascular neurosurgeon now who is going to look into equipping me with a shunt or a stent, hopefully, to maintain the low baseline and prevent additional damage or escalation.

So, the surgery gave me back my hope. It gave me back my will to fight and to live. There are so many things it gave me. But it wasn’t a resounding success. Life with chronic illness isn’t a sprint. Hell, it’s not even a marathon.

Before I didn’t imagine I could keep living in pain, I didn’t think I could handle a partial or total failure. I didn’t want to feel the despair of losing another fight. It’s amazing how much I’ve adapted and even more what I’m willing to accept now, versus then. I am not cured. I am not better. I am different.

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

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.

 

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.

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.

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.