My New Life

Pain bursts through my head before I've even fully woken up or formed a thought. It blossoms in the back of my head and curls around the sides to rest at my temples and pulse; a dull tattoo across my skull. I wince slightly, careful not to jar myself anymore than I have to for fear of dislocating something.The beat against my eyes feels like fists and bruised eye sockets-  I don't want to open my eyes. 

"Curse you Chiari..." I mumble while digging my fingers into my temples.

I crack open my eyes and thank God for Steven because he'd covered the windows in blankets and remembered to shut my bedroom door after waking which meant it was nearly pitch black in the room. I heave in a breath and feel my stomach bulge- incisional hernia poking out because I'd spent the last hour on my right side. Luckily my liver wasn't swollen anymore and shifting my ribs around so I could actually take a full breath.

Cracks break out across my ribs, through my back, and across my collarbone from the deepness of my breath. I curse myself for the stupidity as spasms start in my ribs. They're trying to sublux. I force my muscles to lock in position and hold my ribs in even as they're fighting against me painfully. Eventually the spasm passes and I can relax into the firm mattress underneath my back. I breath more shallow this time.

"You can do it. Just sit up." I chant it inside my head a few times trying to build up the courage to sit.

Courage to sit. I roll my eyes under their closed lids and ball my fingers into fists, but that backfires because my ring finger has slipped out of place. It grinds against itself and I clench my teeth in anger frustrated with my useless body. I remember when courage was more than overcoming terror of my own body.

"Screw you EDS."

I have to force myself not to scream. It would just hurt my torn throat anyway and decimate my head. Chronic illness has completely taken over my life and transformed me into this monster I don't know. No longer can I urge myself past every physical ailment or emotional disturbance. I can't even make a fist without dislocations or pain and I certainly can't do any of things I used to be capable of. A tear slips out of the corner of my eye and burns down my cheek like acid.

Weak. I just feel weak. I reach up to brush the moisture away and my shoulder clicks out painfully; joint slipping. I cringe and stop. I have to use my other hand to physically manevour it around the joint and back into place before I can complete the motion. I used to be able to take notes for hours and climb jungle gyms with my daughter yet lifting my arm is nearly impossible now. The thought enrages me enough that I sit up.

When I press my hands into the bed my wrist slips. My shoulder pops back out and pain bursts across my collarbone. My ring finger knocks against itself once more and my head pounds with such intensity I'm not sure if the black I'm seeing is the dark room or spots swimming across my eyes. Pain shoots down my spine and expands across my back like players on a football field fanning over the grass. I shake my head ruefully, frustrated beyond any accurate measurement,more so when parts of my neck pop and crinkle. I used to walk miles uphill with pounds of books and child but sitting is enough to wear me out today.

I sit on the edge of the bed taking stock. Everything that slipped out is back in painfully throbbing. My head is swimming in fog so thick it might as well be tangible and dripping from my body I'm so encumbered. It's hard to think. I try to force my brain to focus on anything but thoughts slip through the patches of fog and disappear. A 3.9 GPA English degree but I can't finish a sentence inside my head without repeating it 20 times and following the thread of words over and over again trying to find the place I got lost. I give up.

"You. Can. Do. It." You. Can. Do. It. Stand up. Just try standing up? I can manage to try.

I shift my weight to my thighs and the extra pressure pushes my hip out just slightly. I catch it time so I shift to the left and put less weight on it so it slides back in without fully dislocating. I take a deep but not too deep breath and push to my feet before I can overthink it. My knee catches and then hyper-extends until it buckles. I catch myself on the book shelf handily located directly beside my bed and knock my elbow out on impact. I roll my eyes and laugh angrily. Better than crying again right? Definitely better.

Once my knee is stable and my hips are locked into place with extra muscle and thought I try walking. My head is still swimming and dizzy so I keep holding the bookshelf. My ankle slips out and I stumble, "thank you Jesus for making me hold this shelf," before righting myself and continuing. It's like it disappeared for a second and took my foot along with it.

My bladder made walking a necessity or I might have hid in bed all day. That thought sends guilt and shame coursing through every vein and blood vessel in my body. It's almost painful in it's intensity. Every waking moment was Lindzy. Every sleeping moment. I went to college. I mommed. I worked. I did everything, all the time, alone. But now I would stay in bed unable to move without pain or consequences, all day; everyday. My hip slips again and now that pain mingles with the shame. They cause my throat to burn and tears to prick my eyes.

Suddenly my stomach clenches. Pain erupts and acid churns up my throat. It bubbles in the back like a jacuzzi and stings the cuts in my throat. It spills into my mouth, shooting from my esophagus. It burns my lips when I try to hold it inside; three steps from the toilet. Cramping in my stomach causes me to double over on step one and my ankle disappears on step two. I sink to my knees and feel them pop out, tendons sliding and joints slipping as I bend too far too quick trying to reach the bowl before acid runs from my mouth. I retch so hard my stomach twists in knots and blood colors the toilet in swirls of red and pink. Tears seep from my eyes and saliva drips from my lips to drop in the water below sending ripples through the galaxy of my stomach acid.

I hear my phone ring in the distance and a laugh sends me into a new nausea spiral. Anxiety coats my skin like mist at the missed call. Prior to getting sick I couldn't stand to let a call or text go unanswered for more than a second. I was lucky to respond within hours at this point in my life. Tears slip down my cheeks and I stare listlessly at the floor, unable to get up. My knees have locked into place and the puking knocked something in my chest out. Pain and numbness spread through the middle of my chest and into my collarbone. It seeps into my shoulders before finally disappearing. I hate the isolation most. My phone was only a few feet away but I physically could not manage the steps.

I force myself to straighten my legs, relaxing the muscles so they can slip back into place correctly and painfully. I ache and throb but they finally steady enough to stand as long as I hold myself on the counter. I lean against it and rinse my mouth quickly.

Mouthwash, a wet wipe, and hand sanitizer. The bare minimum. I glance at the mirror and want to weep again at the sight. My hair is tangled and matted because brushing during a migraine episode is impossible. My skin is splotchy and red. Broken blood vessels color my cheeks like lightening streaking through a Van Gogh night. My eyes are bloodshot and my right jaw is visibly swollen from the frequent dislocations.

I sigh heavily and build my courage to leave the room. I wish I could be the person I used to be but that's impossible now. I can't be that friend, mom, or wife that I desire to be anymore. The person I used to be imposes over the image in the mirror; a cruel juxtaposition of past and reality. I want to smash it to pieces if it means avoiding the guilt associated with my deteriorating health but I swallow the rage even though it scrapes and gets stuck on the way down my throat.

Now, my courage has to have a new face. The monsters inside me desperately trying to hold me back will not win. Tomorrow is a new day, I remind myself. My fingertips curl around the edge of the countertop and the first joints of 3 fingers slip out. A laugh escapes my lips and I slowly shake my head. "No one said life would be easy."

Online

I rarely complain about my life on social media. In private groups; definitely, to personal friends; abso-fucking-lutely, but never in public because, truthfully, it's just not your business - it's mine.

Unfortunately that leads to the misconception that everyone (but you) has the perfect life. They have that rose coloured, greener grass, picket fence thing going on that we're conditioned to envy.

It also means no one is compassionate - at least in person. Our life is perfect, what right do we have to look less than perfect or act like anything other than the perfected Facebook picture that we are?

So I'm going to start to by saying that I rarely wear pants, I hate myself 97% of the time regardless of my body positive posts (thus the reason they exist in such abundance) and in the last year my health has deteriorated so much that I hardly leave my house.

Now that that's out of the way, let me be more clear::

I am legally disabled. A judge and multiple doctors, therapists, and lawyers all consider my health problems to be so bad that I can not work. At least 10 days a month I can not even leave my bedroom except to use the bathroom and some of those days are me crawling on the floor or Steven holding me up so I don't pass out.

Yesterday I puked a few times, thought I was well enough to help Mathew open his bubbles, and then proceeded to puke on my phone, the bubbles, me, him, the sink, and the floor.

People-ing is really fucking hard when you can't think enough to form sentences but need to pretend like everything is perfect.

I have an autistic son. He's completely amazing and I love him with every part of me: but he is hard work. He has ABA therapy, speech, a special needs preschool, and regular early intervention appointments.

Do you understand how hard that is to keep track of? I'm so tired of having to apologize for missing appointments or forgetting things I need to bring.

Half of my diagnosis' and meds give me such a foggy brain I barely keep track of what I'm saying when I say it.

My middle daughter is currently in the process of an autism diagnosis as well. I'm a lot of ways she's more difficult than my "severely ASD" son is and seems to have the more "traditional" symptoms like aversion to crowds and noises.

Now she's also starting speech therapy, occupational therapy, and pre-school.

I also had to make the decision to start her on meds for sleep. Do you know how hard that is? To decide to medicate your child because you're tired? But she was staying up until 3 am, waking at 7, and then staying up until 4am the NEXT DAY. Regularly.

More recently she, and my oldest,  have been working on a diagnosis for Elhers Danlos; hypermobility: a connective tissue disorder causing faulty collegan. It affects the entire body and causes dislocations and pain on a frequent (daily) basis.

Unfortunately they got that from me.

To reiterate, that's a literal fuck ton of appointments to keep track of and attend.

When I come stumbling in with all 4 kids looking pristine, my hair curling in a million directions and dark bags that live under my eyes now, it's literally taking every bit of strength and willpower that I have.

When I forget what the doctor's name is, and I'm aware how frustrating and hard that can be for you because I've worked as a receptionist before, please don't judge me. Don't roll your eyes and assume I'm a waste of lazy space; please.

Understand that Joey has multiple doctors and therapists, Lindzy has a few more, so does Reyna, and I have double that so remembering every tiny detail every single time is really hard.

Please don't tease me and treat me badly because you think I'm not trying hard enough; I assure you I am. I have lists of every person we see. I set reminders on my phone. I put them on the calendar. I send messages to myself with the information. I put sticky notes on my bathroom mirror like an a Alzheimer's patient and I still manage to forget things two seconds later.

I forget sentences as I say them. I forget what words mean and I forgot normal everyday words constantly in the middle of a conversation.

I am a writer, straight through to my soul; do you know how that feels? How agonizing and hopeless it feels to lose one of the most important things in your world?

Stumbling through my words and giving you the wrong birthday gives me more pain than it does you, I promise.

Please just keep in mind that people aren't what we see online. We have lives and problems and minds that exist beyond the limited scope of appearance. We are all just trying our absolute best.

Please understand from a different perspective than your own because we do we can't truly love and accept.

He has Autism; not a discipline problem.

This is Joseph. Most of you know him from Facebook since I'm mildly (moderately) addicted and take photographs like most people take candy and some of you have had the awesome opportunity to meet him in person.

Even fewer know that he's autistic.

Joseph was a thousand percent born this way. From day one I suspected autism because genetics are a bitch and he was different than Mathew, Reyna, and Lindzy. I don't say that in a negative way; merely that they had certain traits and milestones but he never did.

I used to try desperately to calm him down; cuddling and rocking him, singing over and over but no matter what I did he just wanted to be alone. He wouldn't eat unless he was in his bed with a bottle propped up - I wasn't even allowed to hold it most times.

Breast-feeding was a hassle, obviously, since he didn't want held while eating. He'd fuss and unlatch so many times my nipples were cracked until finally I gave in and let him be alone. And, while he was alone he needed a particular set of toys in a particular order or he'd refuse to sleep.

He rarely acknowledges his name or instructions and contrary to popular belief it's not because he's a "terrible" child and it definitely isn't because I'm a terrible mom.

He just doesn't hear us. His hearing isn't the problem - he has aced that test - but we don't exist sometimes. If you think it's annoying to hear me try and correct him multiple times then put yourself here.

It's not fun for us either.

He wanders everywhere constantly, there is little to no reason behind it. Short of holding him in place while he kicks and punches and screams in my face there isn't a lot to be done. We hover because he isn't aware of danger and I won't let him hurt himself during his wandering.

I will say this again: he isn't being bad.

When you see him melting down in public: he isn't being bad, his brain is literally wired differently than yours.

Those meltdowns can last an hour or more and on a fairly regular basis last at least 30 minutes.

A meltdown is completely different than a child throwing a fit. If you're not aware of the difference then you have no business judging us. "Being tough" does nothing. Trying to hold him sends him even further into a spiraling meltdown. He doesn't even acknowledge me when I give him exactly what he wanted because it's not about things.

His brain gets overwhelmed.  Do you have any idea how hard that must be for HIM?

 It's overwhelming for him and he reacts accordingly.

It is IMPOSSIBLE to "beat" the autism out of someone because it is a neurological disorder. You can't beat someone's brain into submission.

Yes, it hurts my heart when he doesn't respond like my other kids do. It hurts when he doesn't interact with me. It hurts when he ignores other kids because they're just not on his radar.

Of course it hurts when he barely looks me in the eye and he doesn't even know I exist 50 percent of the time.

But what doesn't hurt is how fucking amazing he is.

He's probably the most intelligent child I've had the opportunity to be around. His brain see things differently so most difficult things are extremely easy for him. He will track down a laundry basket from upstairs, then bring it downstairs so he can use it to climb onto the freezer and into the kitchen to get himself whatever he needs.

Who else has that kind of determination and ingenuity at two?

He allows me to find complete joy in the most mundane of things because everything is absolute joy. He doesn't half in and half out, he one thousand percent throws himself into the feeling and has the most beautiful genuine happiness I've ever witnessed.

His hugs are bone crushing.

And, he cuddles like a second skin; smooshed into my chest, head under my chin, and my arm wrapped around his belly like a seatbelt.

I wouldn't change him for the world.