I’m tired of talking about ableism

I’m tired of talking about ableism.

I’m tired of waking up and seeing stories in the news about people treating people with disabilities like people. I’m tired of seeing it treated like the exception and not the norm, and people deserve a motherfucking cookie for being a GOOD PERSON who is SO KIND to the disabled person when we’re just living our lives. McDonalds. Meyer’s. Everywhere you turn and it’s even worse this time of year, which seems to be “take pity on your resident crip.”

I’m tired of talking about ableism.

I’m tired of people telling me I don’t look sick. I’m tired of being told I’m too young to have these problems. I’m tired of juggling my life around a PCA, homemaker, various social workers and case managers, doctors appointments, home nurse visits, and more. I’m tired of waking up in pain and going to bed in pain. I’m tired of doctors not taking me seriously.

I’m tired of talking about ableism.

I’m tired of seeing bullshit like Kylie Jenner. I’m tired of people thinking of me as an inspiration just because I’m a gimp. I’m tired of taking medications day in and day out that I need to function. I’m tired of not being capable of using a stove on my own. I’m tired of being terrified that before age 30, I will be in assisted living.

I’m tired of talking about ableism.

I’m tired of the looks. The stares. The comments, both to my faec and behind my back. I’m tired of being doubted. I’m tired of being treated as a child. I’m tired of being forced to be neurotypical – maintain eye contact when I say. Don’t do your stim. Don’t think about that thing. Don’t do that thing, don’t do these thing, we don’t like it. You’re weird. You’re not good enough. You’re too good to be disabled. You pass as normal too well. You’re so embarrassing to be seen around.

I’m tired of talking about ableism.

I’m tired of being held up on a pedestal, as some poster child for my disabilities. Of being told I’m brave for merely living my life. Of people telling me they’d kill themselves if they had my disorders. Of people telling me I should kill myself, because my life isn’t worth living. Of being judged for doing what I do. Of never being a good enough crip.

I’m tired of talking about ableism.

I’m just tired in general. I sleep too much. I don’t sleep enough. I graze all day instead of eating regularly. I don’t eat at all. I don’t eat enough. I drink too much and get bloated. I don’t drink enough and wind up in the ER. I am juggled from specialist and specialist just trying to figure out what the fresh fuck is wrong with me.

But yet…

I can’t stop talking about ableism.

Not while we wake up to some so-called inspirational story about a person with disabilities. Not while we live in a world where people think it is okay to say things to a disabled friend that they would never utter to an able bodied friend. Not while stories catch on like wildfire around social media, not even thinking about the feelings of the DISABLED person. Oh no, we are focused on how KIND and GREAT the OTHER person was.

I can’t stop talking about ableism.

Not when we live in a world where people out people without their consent about their disabilities, and then expect back pats for being so kind to the disabled person. Not when we live in a world where it’s considered AMAZING to be nice to a disabled person, when it just should be human dignity. Not when it’s considered “cute” to have OCD quirks, autistic quirks, all these little quirks when they’re NOT quirks, dammit, they’re who I am and I can’t control it and to brush them off as quirks demeans me.

I can’t stop talking about ableism.

Not when people talk around me or about me, but not to me. Not when even disability conferences and college disability services cannot get their shit straight. Not when it’s considered amazing and inspirational I got so close to graduation but had to withdraw for medical reasons. Yes, I’ve made the most of shitty situations but we ALL do.

I am so fucking tired of talking about ableism, but unless I want things to get better and to finally get a rest from talking about it, I can’t stop talking about ableism.

We all sing with the same voice, and we live in harmony

This is what sick looks lik. This is what sick IS. I don’t look it? You don’t realize that my body is fighting itself. You don’t realize that I’m allergic to four antibiotics,  an asthma medication that would make my life a lot easier, and a food allergy. You don’t realize that I have an autoimmune disorder, a neurological disorder, rods in my back, an eating disorder, PTSD, anxiety, and a non verbal learning disorder. You don’t realize that I have a balance disorder, that I have a crapload of medications surging though my body. I don’t look it, but you know what? This is what disabled is. 
 You see people like me every day, everywhere. You see people with disabilities everywhere you turn. We are people, just like you, and we have feelings, too. I understand it can be awkward at times when you come across someone with disabilities, but never fear! I’m hear to help you out and avoid awkwardness. NOTE: These are tips from MY personal experience. Other people with disabilities may have different feelings and a different take on life.

1. Never, ever ask me “What happened?” or any variant there of. If you want to know more about my disabilities, there are better ways to phrase it. It’s awkward for both of us when I explain it’s lifelong, and it’s chronic. Trust me, you’re not going to get an epic skiing accident story.

Nothing like that, I promise. You may think it’s making friendly conversation, but you’re really not and just making everyone uncomfortable. Also, don’t ask it while I’m clearly struggling to walk or with a door. I’m really not in any shape to answer you then, and you’re more likely to get a slightly rude come back. It’s rude to ask a stranger these type of question. Get to know me for me. And then ask your questions. I’m more than happy to talk about my disorders with you, as long as you are respectful.
2. For the love of peaches, NEVER ask me “can I ask you a personal question?” This is a good analogy:
It’s never okay to ask a random woman if she’s pregnant. Same way, it’s never okay to ask me if I’m able to have sex, if people want to date ‘someone like me’, if my husband/spouse/siblings are also disabled. YOU DON’T KNOW ME. YOU JUST MET ME ON THE BUS. It is NOT the time or place to ask me a “personal question” because generally? They are rude and disrespectful, and I am a human being, just like you. You wouldn’t ask someone without a obvious physical impairment these questions, so why the hell is it okay to ask me?
3. Don’t give me your home remedies. Don’t tell me such and such person.  Don’t tell me how if I do x, y, z I’ll do better.
Don’t tell me if I do crossfit, if I go paleo, my health will get better. I’ve already given up gluten for health reasons. I don’t need your ‘quick fixes’. My doctors and I have gone through many of these things. It isn’t helpful for you to throw this at me, despite your good intentions.
4. Oh my god, don’t play the Jesus card. You will seriously incur my wrath if you do.
If you say or act like that, I will get angry and upset. I have prayed so many times. I’ve wept to God to heal me, and he hasn’t, for whatever reason. God has a reason for leaving me disabled, and I’ve come to terms with it. Please don’t tell me to just pray. Please don’t tell me if I just trust God, he will heal me. He hasn’t chosen to heal me, for whatever reason. I don’t know what that reason is. I don’t know why I was chosen for this path, and why I’m destined to live a life of physical pain. But you know what? It’s just the way things are.

Now, I do sometimes want to have this reaction to people who are stupid about disabilities:

Really, I just wanted an excuse to use this picture

But you know what? We are people too. We are just like you. We laugh, we play, we cry, we sing. We weep, we rejoice, we bleed, we heal. We do things differently. But we all sing with the same voice, and we live in harmony.

As my memories rests, but never forgets what I lost

Like my father’s come to pass, seven years has gone so fast
Wake me up when September ends
Here comes the rain again, falling from the stars
Drenched in my pain again, becoming who we all

September marks seven years since everything flipped upside down, since everything turned topsy-turvy, since my life went totally off-kilter. It’s kind of funny because even though my father isn’t actually dead as in he kicked the bucket, emotionally he’s dead to me as I don’t speak to him, haven’t seen him in seven years.

Funnily enough, this time seven years ago this song was all over the radio. I heard it on the bus going to school every single morning (along with the DHT cover of “Listen To Your Heart”). Kind of funny that seven years later, it sums up my feelings about the month of September.

September isn’t as loaded as October 31st is for me, but September is still a month of loss, a time of grief. September 2005 is when my health started spiraling out of control. September 2005 was when I started to realize who my true friends were. So much happened seven years ago. So much happened.

As my memory rests, but never forgets what I lost
Wake me up when September ends


I fully believe that one day my memory will be at ease, but I don’t know when that day will be. I believe there will be one day that’s not taunted by flashbacks and nightmares and painful memories. I fully believe that will be a day where it will all just be another faded scar, another jaded memory. Kind of like the lyrics from the opening theme of my favourite anime (taken from the Japanese translation to English and not the English version): “Even when yesterday’s wounds remain, take yesterday’s tears and turn them into tomorrow’s strength.”

I don’t have to let the past control me. I don’t have to let myself be consumed by the memories. But just because I finally process the pain after all these years, just because I finally come to terms with the past, doesn’t mean that I forget it. It doesn’t mean that I have to forget it at all, but it also doesn’t have to be at the forefront of my memory.

A lot has changed in seven years. I’ve gone from an 18 year old high school senior to a 25 year old college student. I never dreamed on my first day of high school that these seven years would turn out the way that they did: The whole ordeal with my father, losing my health, losing some of my mobility, moving to Minnesota, taking time of school, still being in College, this, that, and the other. It’s kind of baffling, really, what all has happened over the course of seven years. And how in some ways I’m so different, but in some ways some things never change.

All this doesn’t mean that sometimes I just want to skip the month of September, and October as well for good measure. Maybe one September, I won’t just want it to end before it begins .Maybe one September, I won’t want it to just go away.

will i lose my dignity? will someone care?
will i wake tomorrow from this nightmare?
there’s only us, there’s only this,
forget regret, or life is yours to miss.
no other road, no other way, no day but today.

It’s not September yet. It will be in just over an hour. It may be a difficult time – but maybe this year at long last, I can start healing and fully living it the now, instead of being trapped in the past.

Because reason says I should have died three years ago

I am told that it is nothing short of a miracle I am alive, be it by the circumstances of life or be it by my own hand. I am told that many other people in my shoes would be homeless, would be drug addicts, would be drunkards. That I shouldn’t be alive due to medicine mixups, ailments, and various things I have.

At the same time, I’ve been told that if I just had more faith I would be healed. If I just believed I could overcome, things would be better. The truth is, I’ve accepted things to be the way they are. It doesn’t mean I don’t channel my energy in recovery. What it does mean is like in the serenity prayer, I accept the things I cannot change and must have the courage to change the things I can.

Oh look, I can climb the twisty thing!

Just because I’ve accepted my disabilities, I feel, doesn’t mean that I’ve let them pull me down. I’ve really beaten incredible odds. I’ve overcome so much. I still have much to overcome. I know that due to genetics my general health will continue to demolish itself. I know that if I try to push myself, believing if I just do a little better I can overcome, I will wind up making things a bazillion times worse. To focus on what I cannot do would be foolish. I can play on playgrounds, I can wade in the water. I can take walks. I can so much! Why pull myself down by  bashing myself?

I can play in the water!

I can’t control what my father did in the past and I can’t deny the impact it has with me today. I can control how I choose to act on the result. I can’t control the fact that I’m disabled for likely life, but I can choose to accept it and make the best of my life, no matter how long or short it is. The important thing is that I keep on keeping on, and instead, continue to defy odds. Continue to shoot down the ones who say I can’t make it. You know what? I may not make it in the traditional sense. But it doesn’t mean I have to give up hope, that I have to quit at life. Instead, it fuels me to go forward, propels me to keep swimming (even though, well, I can’t swim) and gives me a reason to survive.

And if you care to find me, look towards the western sky
As someone told me lately, everyone deserves a chance to fly
And if I’m flying solo, at least I’m flying free
To those who ground me take a message back from me!
Tell them how I’m defying gravity, I’m flying high, defying gravity…
Wicked – “Defying Gravity.”

Chronic Pain Chronicles

Rate your pain on a scale of 1-10 with these really cheesy, not very helpful faces.

 For as long as I can remember, I’ve lived with chronic pain. I don’t know what it’s like to live a day without pain. It’s so far out of my grasp that I cannot even envision it, I don’t remotely know what it would look like. I was officially diagnosed with fibromyalgia last fall, but I’ve had the signs pointing to it for years. Interestingly enough, emotional trauma can cause fibro and I can’t help but wonder if my childhood played a role in my development of the disorder.

It’s hard. Some days, just a simple chore like doing the dishes takes everything out of me, and then the trash still leans against the door to be taken out, the clutter spreads over the floor, and I flop in bed with a n64 controller or a TV remote. It’s hard. Some days just crawling out of bed to do a chore as simple as get a glass of water takes every ounce of effort I have.

It gets downright soul-crushing at times to know that all your friends are out having fun and living their lives, yet you are curled up in pain. Your life is on your computer, because being in the real world and interacting with people is far too painful. You ache and you hurt and it’s to the point where you just plead with the doctors for a relief from the pain.
What sucks? The relief for my pain is out there. But my insurance refuses to cover it. Living in pain and knowing there are drugs out there to help but you cannot afford them is a real kick in the spirit. I try to keep upbeat and positive about the struggle, hoping maybe this treatment will help, maybe this drug will help. But I’m not Molly Clock from Scrubs, I can’t keep rolling with the punches and keep upbeat and happy. 
It takes such a toll on my spirit. And it makes me hurt inside as well as out. I am sick and tired of being 24, and living in chronic pain. I’m sick of it. And I just want relief from it. I don’t care if it’s a drug, a treatment, a surgery. I don’t care what it is anymore – I just want to live pain free for once. Some days I think just one, just one pain free day, completely pain free, would be enough. Just so I know what it’s like. Just so I get a taste of what it could possibly feel like to not live like this.
I’d be happy to get the pain down to a tolerable level. I even told my doctor I’ve given up hope of ever being completely pain free.
But oh, how I wish it were possible. 

“I cannot find my voice.”

I have this habit of locking down inside myself. Oh, there is so much happening. Images dancing in my head, sights, smells, sounds, twisting together, tangling, intertwined. It’s safer to stay silent. It’s safer not to speak. I’m afraid to speak out. Speaking out senior year and being shushed solidified that fear. I was only eighteen. I was a senior in high school. And I was heartbroken. I wouldn’t wish the choices I made that cold October morning to my worst enemy. But yet, the choices let me to where I am today.

I’ve grown so much since my senior year. I should hope so, considering I’ll have graduated six years ago come June. Six years is a long time, and even as I got my diploma that warm June evening, I had no idea the changes that would come over the next few years. I had no idea I would legally be declared disabled before 21. I had no idea I would sever ties with my mother as well. I had no idea that I would be called into the ministry. I had no idea I wouldn’t finish college in Canada and that in 2012 I’d still be working on my undergraduate degree. I had no idea I’d live in frick-fracking MINNESOTA where it’s frick-fracking cold. I had no idea I’d still be battling PTSD, cutting, eating disorder… I suppose I thought it’d magically stop, but NEWSFLASH: IT WON’T.

I had no idea that both my grandparents would die before I completed my undergraduate degree. I had no idea that I would make beautiful friendships, meet my future best friends, and go through heart-wrenching grief. I had no idea of any of that.

I had no idea at age 24 people would STILL think I’m 14. Heh. Funnily enough, side story. I was on my way to a doctor’s appointment and I mentioned how I still had a specialist at the Children’s Hospital. “Oh, you could easily pass for 14.” Me: “Mmhmm.” “You’ll like  more as you get closer to your 30’s!” *silence* “I’m 24.” “WHAT?!” “Yeah, I’ll be 25 in June.” “….” “You’re not 18?” 18 is the oldest I’ve been mistaken for in awhile, so I suppose that should make my happy. Anyway. Done with the side story.

Tori Amos said in her song “sometimes I hear my voice and it’s been here, silent all these years.” Problem is, I don’t hear my voice. Sure, I blog and I write and I talk. But I bottle so much up. I keep so much inside me. And I don’t know how to pull it out. There are things about my past that repulse me, that I haven’t told anyone. And it scares me that it’s there. And I don’t want to talk about it because I’m afraid people, even those who want to help me so badly, won’t like me anymore. Will think horrible things. Won’t understand. And so, I carry the burden.

When will I realize how stupid that is?
When will I realize how dumb that is?
When will I find the way to pull out my voice and be strong?

Nine months down

Medication and hydration! 

Nine months ago I have my back fused. It’s kind of hard to believe it’s only been nine months, and in other ways it feels like the time has flown by. Nine months ago I had rods put in my back. Nine months ago I had major issues with rehab and wound up in the ER.

It’s been nine months, and how have things changed? Do I regret the surgery? Part of my recovery problems have been my fault. I still carry around a heavy backpack. I had a bed collapse on me because I was digging around under it. I sometimes forgot to call to schedule follow ups.

I guess I’m partially still bitter because of my NF1, I still have issues with my back – hairline fractures, scalloped vertebrae  and dural ectasia. I will never  have a full recovery from pain, and it’s a hallowing thought.

But I don’t regret the fusion. I’m taller now, and the pain is somewhat better, although there are still days where I’m curled up in my bed with a N64 controller and a cup of tea because anything else hurts too much. I totally rocked the hospital gown too, as evident in this gorgeous picture taken 5 days after surgery (and before a shower and real clothes, ick!)

I look like death on a stick.

I had my share of adventures in the hospital, such as the IV falling out and the weird feeling of a catheter. Learning how to walk again was difficult and painful, although I caught on quickly. It was awhile before I could use my crutches the way I was used to again, and I know had I not had limited mobility to begin with, walking again would have been a snap.

My scar is healing nicely, and so that’s good. I have almost all my mobility back. I do sometimes (I’m hyperflexible) sit or lie in weird positions. My back is like “OH HAI ANGELIQUE YOU HAVE RODS IN ME REMEMBER LOL” and I’m like “oops” when I realize I can’t always move exactly how I used to. Thankfully, bodies are adaptive and I just learn new ways to move around! It’s still terrifying, though, because my surgery was so major and I still live in fear of the doctors discovering something that went wrong after surgery and having to go back in and fix something. I wonder if if all the pain I’m still in is normal. I wonder if my bones won’t fuse properly. I wonder if the rest of my spine will shift (not unheard of with NF, but not common either) and I’ll have to have more of my spine fused. And sometimes I still feel like just a scared child who wants someone to hold her and tell her that it’ll be alright, which I don’t think is a bad thing, per se, but at the time time it’s heartbreaking because does anyone really know if it will be alright?

Perhaps it’s hard because the recovery was brutal due to rehab messing things up and my NF. Perhaps it’s difficult because I still live in pain due to both the NF and the fibromaliga. But is there a way things could have turned out different? Had I not had the surgery, my spine would have continued to curve and that would be, well, bad. I would have had to have more fused and quite frankly, that would suck. My scar is impressive enough as is. But yet, nine months out, I’m still living with pain and I’m still struggling. And I can’t help but wonder – three months later, will it still be like this?

But at the same time, I find myself grateful that I’ve been given the chance to heal and the chance to move on with my life. I’m stronger than I was before surgery, both emotionally and physically. Even if my back doesn’t fully heal properly it doesn’t mean that the surgery was a failure, but rather that there’s a different plan in store for me. The ride may be difficult and bumpy, but it doesn’t mean that I’m not in it for the long haul. But no matter what, nine months with rods in my back have passed and I’m recovering, in some way, shape, or form.

Making Choices That Matter

Considering that I am running on two hours of sleep and keep shouting “WHAT!?” at my math homework (and it’s not even due until Wednesday!) writing the blog entry about the big step I took today seemed like a good idea.

I’ve had a knee brace since my senior year of high school, so fall of 2005. I don’t wear it nearly as often as I should because I’m horribly self conscious about it. Here’s a picture of when I wore it in 2009:

It’s rather obvious it’s there. And even though I wore it under jeans, the bulge is obvious and yes, I got asked about it. I kept having to fix it after classes. Yes, awesome = sitting on a table in the math building fixing your knee brace as the other students are leaving. Yep. That’s the awesome person you’re talking to! ^_^

Thing is, it helps somewhat. And another thing is, I may need a new, more intrusive brace so I figure I might as well get re-used to the knee brace. It is hard, though.

I don’t like drawing attention to myself. I sometimes feel that people see the crutches and not me, or that people see me as a cripple or a gimp (I hate those words T_T), and not a person. And I feel that adding a knee brace to that compounds it greatly. But it helps. My knee cracked far less today (my ankle made up for it) and the pain has lessened, although still intense.

I guess you’re likely wondering what I have a knee brace to begin with. I played volleyball (I sucked. The one time I served the ball over the net the other team, who had played us before, was so shocked they didn’t even move for the ball when it soared over the net. And I, being the ninth grade genius I was, didn’t even realize it went over and I’d scored a point. Nevermind the insane cheering from our team.. I just thought they took pity on me and gave me another shot!) my ninth and tenth grade years. In ninth grade, I did a dive for the ball during a practice. Only upon my knee impacting the ground did I realize a critical detail: I’d forgotten to pull up my knee pads after the last bathroom break. Oops. Better yet, I played the rest of that season and the entire next season, plus two seasons of cheerleading on that knee. Even better I didn’t see the doctor for it until my senior year. Not really my finest moment when I told him when I’d injured it. Ahem.

Nice Doctor Dude sent me to Other Doctor Guy as he was a sports medicine guy, fresh out of his fellowship (mmm, fresh blood! Seriously, I love doctors fresh out of their fellowships. They’re on the up and up, and don’t yet have the callous, cynical attitude some of the older doctors get. And plus, it’s fun to be a medical mystery with them and baffle their young brains.). Ahem. I became a frequent customer between ODG and the clinic, because, well, to put it nicely, I’m a klutz. He wanted to get me a bubble suit and put me in a white, padded room (when I left in 2008 he told he to keep him updated on stuff. I forgot to. How weird would it be, almost 4 years later, to write him one?) and whatnot. I still remember the time when I was on underarm crutches, hyperextended in front of the clinic doors, and completely wiped out. Doctors, nurses, and patients: *panic panic panic* ODG; “Oh, it’s only Angelique. Somehow I figured it would be you.” GEE THANKS ODG.

Now that was a tangent if I ever saw one! Ahem. I was dx’ed with Patellofemoral pain syndrome . See how it says “malalignment of kneecap”? Means my kneecap snaps in and out of socket. And it hurts like hell. There’s not a lot that can be done for my case, as the doctor’s aren’t big on doing surgery but they may look at it in the future if this keeps up. In fact, when I saw a doctor for a surgical consult in 2009, that’s how I wound up finding out I needed back surgery because they realized “Oh hey, chica hasn’t had back xrays in awhile. OH SNAP HER BACK LOOKS BAD THIS ISN’T GOOD.” Yeah, that’s pretty normal in my life.

I always hated the brace because it’s big and clunky. And it’s not fun to wear.. But I sucked it up and ponied up and wore it, like a big girl. I should do this about more things that are good for me. 🙂