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.

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.

Dear Friends,

I don’t know how many out there consider me as a friend. I know there are various shades of ‘friendship’. You have people who you talk to daily, or see regularly. You have people you know and you occasionally trawl their Facebook, just to see how they’re doing. And then, you have those people who are so close to you, they can feel your fire and they know you better than you know yourself.

I’m not sure which one I am to you. Maybe I’m the one where you just occasionally read my Facebook and like my ridiculous ramblings.

Whichever you are, there is something I need to tell you. Not just on behalf of myself, but on behalf of every person who lives with chronic illness – whether it’s Ehlers-Danlos Syndrome, or some other crappy lifelong condition.

I’m sorry that my illness takes up a better portion of my life. I know my Facebook feed is 75% cats and Ehlers-Danlos/Chiari related shit, 10% memes, 10% Tumblr reposts and 5% what the fuck is that! I imagine those sick pictures of my scars and boo-boos are probably getting old. It probably feels like most of your feed is filled with negativity. I promise, if I could have it another way, I would in a heartbeat. Please don’t give up on me. I want to hear about your new kid, or your new job. I want to know how you are. I still want you in my life. I want to see you and I want to make you laugh. I want to wish you happy birthday, merry Christmas, or whatever else. I want to be the person who wipes your tears away after a bad day and asks who I need to beat up on your behalf.

But please understand, sometimes I won’t be able to do that – because I’m a bit tied up putting my joints back in (literally), or cleaning up vomit because I didn’t quite make it to the toilet or sink. Sometimes I will be too tired for a night out, or to have you over. I can promise you on the days I am feeling well, I will want to see you or talk to you.

I am sorry for all the times I have cancelled, or will have to. I am sorry for all the times I slept through your calls and texts. And I am sorry that my life is a mess. That is not going to change anytime soon. But if you’ll have me, I will be the best friend I can be. Chronic illness has given me this amazing super power – empathy. I will always understand when you need to cancel, or when you’re too depressed, anxious or afraid to function. I’ll be there to hold your hand, literally or at least figuratively, when you grieve the loss of someone you love, or maybe when you get sick. I will make you laugh when everything seems so shitty and impossible, because let’s face it, my jokes help me survive my own situation. I will advocate for you when it comes to your health, safety and sanity. And no matter how many miles between us, I will love you and care about you.

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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.