My Life Story, Written In Flesh

****WARNING: THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE SURVIVOR****

I don't know a single person that doesn't have at least one scar.

Large or small, prominent or barely noticeable, every scar has a story attached; sometimes one we remember firsthand and sometimes one told to us because we were too young to remember.

This post is a celebration of all we've lived and struggled with and survived. Our scars are our story...written in flesh or carved in our minds. 

"That's from the time I was chasing my sister on my bike and she stepped in front of me. I swerved on the gravel and the road bit my face. I refer to it as one of her two attempts to kill me. ( Kidding about her intention, not about how I refer to it. )" - me

This could be an example of one my daughter might tell:

"This one is from an emergency appendectomy when I was 8. I got sick from the anesthesia, so they gave me Phenergan. Turns out I have a really bad reaction to it, my mom says I was ripping out my IVs and crawling over the bed rails until they had to give me something to make me sleep."

My friends have scar stories of their own:

"My beautiful battle scar on my upper right arm is still with me to this day! When I was 13 I was diagnosed with stage 3 Melanoma  (skin cancer). The surgeons cut away the entire cancerous section including some of my muscle. The surgery itself was 8 hours.  After months of more minor surgeries, stitches, Dr appointments, rehabilitation, and treatment I was in the clear, as in remission for 5 years." - Abby

"My favorite scar is from a c-section at 19. Frank Breach they called her. Her adoptive parents named her Alyssa. I like that name; I love her wherever she is." - Ericka

Not all scars are physical or visible, but are still carried with us and remembered vividly in a way that affects us years later:

"This one is from when I went to the ER for a severe Migraine attack. The doctor decided to give me Ketamine, also known by its street name, Special K. While rubbing his hands together and bouncing on his feet, he said to me in a giddy voice, "This will be fun!"
It was not fun. The walls moved around me and started closing in on me. The clock on the wall was making circular trips all around it. My bed felt like it was on violent waves of the sea, and I held on to the rail for dear life. My right leg disappeared. I couldn't find it. Then I felt myself fading, until my consciousness was nothing but a small speck in my chest. I thought I was going to be snuffed out for good. I screamed and screamed for help, even though I couldn't hear myself. The nurses ignored my complaints and asked if my Migraine was better. It wasn't. Shortly after, they came back with a second dose and said, "This will help."
It didn't. They left me alone for 2 hours with my hallucinations and paranoia and then sent me out the door in a wheelchair.
My Migraine was still not better." - Brianna

"These are from years of mental and emotional abuse from my father. They aren't all healed even now, 20+ years later." - me

"This one is from my father walking out on us." - anonymous

"My invisible scar is from being raped." - anonymous

Some scars are visible, but not understood...often those who carry them try to keep them hidden because of reactions based on the stigma attached, rather than compassion.

"Are you talking about physical scars or emotional/psychological scars as well? You could write a book on my psychological/emotional alone, but the physical one would be my body. I eat my feelings so it shouldn't surprise me that I look like I do. There are a few others from when I was cutting myself but they are hidden really well. Another thing is since I have always researched any diagnosis and/or test result is I also research the treatments so when I was cutting myself I knew where not to cut. I was mindful of being able to hide them." - Malinda

" These are from years of self harm--for me, it was easier to deal with the physical pain than the emotional pain. Some are hidden, some aren't; they are the days when the only thing that mattered was the physical pain to shield and distract me from emotional anguish." - me

"This one is from a suicide attempt." - anonymous

"I never hid my self harm scars. But people pretended not to notice because it was easier than admitting to themselves I needed help." - anonymous

"My scars are proof that I fought my demons and survived myself.  They are a reminder of my struggles I've conquered." - me

Sometimes scars are something that helps us relate to others or reminders that others are fighting battles we can't always see. No matter which they are, our scars are part of us and of our story and can be used as a source of triumph over the things we've come through.

May your story be a tale of triumph and compassion. 

What Does Chronic Migraine "Look Like," Anyway?

Chronic migraine is defined as 15 or more pain/migraine symptom days per month, but for quite a few of us it progresses to much more–daily or 24/7 symptoms and suffering.
It’s also called an “invisible” disorder, meaning you can’t see it, which often leads to skeptical reactions from medical professionals, employers, coworkers, and sometimes even friends and family.
It’s a bit odd to me that so many disorders and diseases are referred to as invisible when their effects wreak such obvious havoc on our bodies and in our lives. I tend to believe that they can be visible…for those who wish to look past the surface.
Here are some of the things chronic daily migraine looks like to me.

It looks like fighting to prove you’re disabled to those who can’t see it.

It looks like cancelled plans for the umpteenth time.

It looks like friends who stop inviting you out, but who can’t or don’t come visit you.

It looks like days in bed in the dark when your family is in the living room watching TV, laughing, and talking.

It looks like a messy house, unwashed dishes, and sitting on the couch in pjs wishing you could clean it up but knowing you can’t.

It looks like days missing who you used to be and what you could once do without planning exhaustively for a bad episode.

It looks like a beautiful day outside with you looking out the window from your bed.

It looks like feeling worthless and alone.

It looks like unbrushed hair and no makeup, because no one is coming to see you or you can’t tolerate visitors and you can’t stand the pain long enough to get pretty (or passable) anyway.

It looks like missing time with your grandkids.

It looks like people who think or say “you can’t be THAT sick all the time” or “aren’t there treatments for that?” or “God won’t give you more than you can handle.”

It looks like prescription bottles and a medication schedule and side effects and treatments no one would volunteer for unless their disease was much worse.

It looks like suggestions to “cure” you that range from “have you tried cutting ____ out of your diet?” to “I hear this body piercing gets rid of migraines” to “you should exercise more” to “doesn’t sex get rid of headaches?”

It looks like being asked “you still have that?” after 5 years of telling people what “chronic” means.

It looks like feeling “okay enough” to do laundry OR do dishes, but not both and definitely nothing more.

It looks like people who say “but you LOOK great!” or “but you don’t LOOK sick!”

It looks like countless medical tests with inconclusive results because there is no test to prove the existence of migraine disorder…only ones that rule out other possible causes.

It looks like explaining for the thousandth time that migraine is a genetic neurological disorder that affects the entire body and NOT a headache.

It looks like rescheduling a doctor appointment because you’re too sick to drive.

It looks like people sniggering behind you about “What [drug/other speculation] you must be on” because you can’t walk straight courtesy of aura or vertigo or both.

It looks like disbelief when you list your symptoms, diagnosis, and pain level at the ER.

It looks like uninformed and under educated medical care unless you see a specialist.

It looks like inconsistent or rationed treatment because of the expense of medication and specialist visits.

It looks like a years on end long list of ineffective treatments you’ve tried and that have failed.

It looks like someone who had a perfect 4.0 GPA feeling dumbed down because she now has trouble finding the right words, remembering things, and making once-easy connections.

It looks like your specialist telling you very gently, “There’s not much to try beyond this, and these are the odds it will help…but even if it doesn’t I’m not giving up on you.”

It looks like depression, suicidal thoughts, and anxiety about the uncertainty of each day and the future.

It looks like new symptoms cropping up and surprising you unpleasantly.

It looks like your mother telling you that the birthday gift she’d like most would be you getting to have a good day with less pain.

It looks like your boyfriend feeling helpless because he’s a “fixer” and he can’t do anything for you but be there (or if you are a grumpy sick person on really bad days like me, leave you alone).

It also looks like your boyfriend learning about your disorder and patience and limits right along with you.

It looks like learning to live with a much-limited sex life.

It looks like finding new ways to define yourself and a new idea of self worth.

It looks like smiling in front of strangers or people you don’t want to worry as if the pain and other symptoms aren’t breaking you.

It looks like finding the beauty in small things.

It looks like learning to appreciate small accomplishments you never would have thought twice about otherwise.

It looks like bad days when you envy those who can afford to go to the doctor for checkups and preventive care while you are debating if you can afford to take your last abortive dose for the month…mid month.

It looks like a repeated cycle of the stages of grief in no particular order as you grapple with the old life you lost and acceptance of the life you didn’t choose.

It looks like learning to cherish the good moments and to hang on to them for all they’re worth as a buffer against the bad and unbearable days.

It looks like nothing to those on the outside looking in and everything to those living it.

It looks like me.

And it looks like him…and her…and millions of us struggling every day with something no one else can see.

On Depression and Losing My Childhood Icons

I haven't done a new post in a while--I've been fighting monsters.

No, really.
I've been fighting my daily chronic migraine without meds for a month, and it's been really an exercise in willpower to find reasons to keep fighting while I wait (and wait and wait) to hear anything on my application for disability.

Depression has been my constant companion lately, and the death of yet another of my childhood and adult heroes has affected me deeply.

Carrie Fisher was the princess we girls needed in the late 70s and early 80s--a tough, take no shit lady with a vulnerable side. As an adult, her openness and advocacy for mental health has been amazing and a role model for my own advocacy.
Her death on top of the loss of so many other pieces of my childhood has left me reeling.

It's also made me think (scary, I know)--why do the deaths of my childhood icons affect me so profoundly?

Because they've been a part of the many lives I've lived. Imaginary lives, but still...I've been a Rebel Princess, a warrior princess, a crime fighting "angel," an amazon princess, a smart arse teenager with a stolen baby sister..I've been in a galaxy far, far away, in the Labyrinth fighting a goblin king, and my own house simultaneously. I've fought with lightsabers, blasters, a lasso of truth, my fists, and my wits. I've journeyed Middle-earth and Narnia. I've been a wizard, a mutant, an elf, a hobbit...all before second breakfast.
I've been a glittery rock star and a soulful crooner (not for an audience, thankfully). I've sworn to never dance again the way I danced with a good friend.

But mostly, I lived and dreamed and breathed through other characters when I was a kid still trying to find out who I was and who I would be.

The people who brought to life all those pieces of me...have been pieces of me. They've given me heroes and adversaries worthy of them. They gave me an escape when I needed one, sang to my soul, and gave me the courage to become me in all my many facets.

I mourn what they were to me and the loss of the people they were in their own lives.

Rest in peace, Carrie. You are one with the Force now. Thank you for all you gave me.

Tired Of Being Sick And Tired -- The Chronic Migraine Merry-go-round

Chronic illness is for life.
That's the hardest part of it, I think--knowing that there isn't a light at the end of the tunnel, and if one should appear, it's probably a freight train.

When one has a cold, flu, or infection, you know that no matter how miserable it is, there's an end. It will go away.

Chronic illness doesn't go away.
It may be treatable...but treatable doesn't equal better or even feeling relatively normal.
It's like luggage. Ugly luggage that you didn't even get to pick out and have to drag everywhere.

As much as I hate taking medications...it's even worse not having them to take on a regular basis.
My sleep schedule is a mess and I think my body thinks afternoons are mornings now--mornings were the worst pain/symptom time of my days and now it's afternoon/evening.
Botox downswing is hell...but even more hell is knowing I can't get my next treatment.  

Sick of being sick.
Sick of talking about being sick.
Sick of knowing others are sick of hearing about it.
Sick of it being my day to day and having little else to talk about.
Sick of knowing it's for life.

Sick of being in the gray area of waiting and wondering when the next time I can get relief will be.
This is hard. Harder because I've had treatment for a while and now it's gone.

I don't know how I did this before. Maybe not ever having options before was better, or at least easier to deal with because I didn't have that hope before.

All I know is it's so damn hard to exist these days and to be okay with it. So hard to act like myself. So hard to care. So hard that no one around me really understands why it's so hard and I can't just deal with it and move on.

And I can't understand how I can be expected to deal with it and move on while I have to haul this luggage 24/7, 365.

It's there in the shower. It's there hanging on me while I'm doing dishes, getting dressed, eating...it wakes me up when I sleep or keeps me awake.

No one else can see it weighing me down, but I feel it with every breath I take.

It confines me. It smothers me. It sucks my energy and my enjoyment of life.

Chronic illness is for life--but it isn't so much a life as it is a life sentence without any possibility of parole.

I know I can get through life...but I don't have to like it. I don't have to smile and put on my happy face. I don't have to pretend for anyone else's comfort while I serve my time.

I just have to keep breathing.
But sometimes that just doesn't feel like enough.

Health Care is a Luxury For Too Many

Many people would deny this, but health care is a luxury.

Ask the legions of chronically ill and disabled, who fall in between being unable to work but not considered disabled "enough" to qualify for disability.

Ask the ones who are having to depend on someone to support them and for whom that single income isn't enough to cover doctor visits, much less treatment and meditation to manage their disease/disorder.

Ask those with a life-threatening illness that can't afford care...even with insurance.

Ask the single parents who provide for their kids but don't have enough to provide for themselves.

Many people would say health care is a necessity.

Obviously, many people don't consider it one, though.
People like me are supposed to suffer in silence or have the decency to die quietly so they aren't a drain on the system.

Health care is a luxury.
Pain relief is too dangerous to trust us with.
Consistent treatment is non existent to many of us.

I'm tired of suffering in silence and I'm not going to die quietly. 

Im going to point out the uncomfortable truths about life with chronic illness until I'm six feet under.

For two years, I was on state medical assistance...in October of this year, I was informed during a renewal interview that I didn't qualify. Even *better*--the fact that I'd been receiving assistance at all was due to an agency error.

A two year agency error. Thousands of dollars in treatment and medication that I'd never been entitled to. The supervisor I spoke to was quick to reassure me that because I wasn't at fault, "at least you won't have to pay it back and you didn't defraud the government."

Honestly, those were pluses, but also were and are the least of my concerns. High on my list of concerns was, "the treatment that has been giving me marginal improvement is no longer an option for me." 

Because even marginal improvement is a big deal when you live with chronic illness. Marginal improvement meant a few days a month that I could play with grandspawn, visit family, cook dinner for my family...those few days were days I hadn't had in over a year.

I am still receiving mental health care through a different government program (MHMR), thankfully. Antidepressants are not something it is safe to stop suddenly, but more than that, they literally keep me alive. My antidepressant is currently the only medication I'm on. 

I've applied for disability and SSI (I did so the day after my devastating news that my Medicaid coverage was a two year error), but waiting to hear a verdict can be a long process--as long as 5 months, occasionally as short as 3. That isn't counting the appeal process if I'm denied disability, and chronic migraine is often very hard to qualify for. In Texas, only about 33% of applications for disability are approved. The number of disability applications approved for chronic migraine is much lower.

So I wait. 

And while I wait...I suffer. 

But not in silence. Not any more, not ever. Both for myself and the others who are weathering the same storm, I raise my voice. 

Why I Don't Hide My Illness Any More

The Pretender Mask.

The smile that hides the pain.

The “I’m fine!” on days we definitely are not fine.

The tough I’ve-got-this front when we’re falling apart inside.

Everyone I know with a chronic illness has been behind the Pretender Mask.

Sometimes, it’s because we don’t want to explain our illness yet again. It’s exhausting, especially when the illness is one that doesn’t show on the outside. Invisible illness often leaves us feeling as if we have to validate it. We look fine, so how can we be that sick?

Sometimes, it’s because we don’t want others to worry, or maybe because we just want to be “normal” for a little while. That cashier doesn’t know us — to her we can be just another person, not the sick one. We won’t be interacting with her long enough that she has to see how not OK we really feel as we smile and make small talk.

And sometimes, it’s because we can’t admit to ourselves that we won’t be able to kick this thing’s figurative ass. Oh, we can fight it, yes. But the sad truth for many of us is that’s all we can do.

And it’s hard to accept that. It’s terrifying.

I wore it for over a year, that Pretender’s Mask.

A year or so of acting tough and telling my friends I would be OK, I was going to get better, I’d find that magical treatment.

I’d kick its ass.

I was terrified. I still am. And every time a new symptom crops up or the pain derails my day and confines me, I get terrified all over again.

I haven’t given up hope for a treatment that will help. But now I know and admit to myself that’s all it will do — help. I’ll still probably be disabled and not have a “normal” life (not that I’ve ever been “normal,” anyway).

And for some people, that’s off-putting. They see it as giving up, as settling for less.

It’s lost me friends.

And that hurts.

But what it is is being real and being realistic. I try to be optimistically realistic, and I usually succeed.

And I’m not pretending any more.

Not for anyone.

I won’t shove my disorder under a blanket to fit in someone else’s comfort zone — even my own comfort zone.

That’s a luxury I don’t have anymore.

I’m a fighter. It’s what I do. And I can’t fight something that I’m hiding.

(Originally published on The Mighty. See my author page and other published articles here.)