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Wish You Were Here

*Author’s note: I apologize for the lack of posting there’s been a lot going on; some of which I can’t yet blog about.*

My mom passed away from her battle with stage IV cancer in January of 2013, I was just seventeen and in my senior year of high school. Since I was relatively young when my mom passed away there are a lot of important events in my life that unfortunately, my mom had to miss out on; such as my high school graduation, moving away for the first time, and my first job among other things. I’m experiencing a greater sense of loss once again as I prepare for the next step in my journey into a more independent life; I soon will be moving from my group home where I’ve lived for about a year and a half to a supported apartment setting. Although being an additional twenty miles away from my family and hometown is a bit daunting I’m excited about the change. I just wish my mom could physically be a part of the experience too.  This move makes good on two promises, one to myself and one to my late mother that I would not be stuck in our house in our rural town forever; that I would go out and live my life to its fullest extent. I’ve made massive changes in a short time so I think I’m definitely keeping that promise well. I’m excited to see what the next leg of this journey has in store and Thursday kicks it off when my dad and I go visit the potential apartment.

 

Senior prom, age 17

Dear 18 Year Old Me

Dear Sam,

Right now you think this is the worst time in your life. Well for that I have good news and bad news because I know Patience isn’t your virtue,  I’ll start with the good news.   The good news is it gets better; the bad things now won’t be bad forever.  The bad news is things will be rough until you turn 20.

So I know it’s hard but just hold on until 20.  And in that year things will finally get better.  But they too will seem like the worst days. And your 20th year you will move away from home. In the days after your move, you will hate everyone you love spending your waking hours howling with dispair and hurling bombs of emotional blackmail at dad: “If Mommy were alive she would bring me home!” But trust me, somewhere along the way when you’re busy making these new walls into a home, the crying stops.

Six months after your move and 5 days before your twentyfirst birthday, you`ll meet a man who will singlehandedly change everything. He will bring a previously unfelt joy into your life. He will come unexpectedly as he isn’t your current eighteen year old gold standard, but he will bring everything you didn’t know you were missing.

On kind of a whim you will decide to go back to college in the summer of 2017 after a few less than stellar attempts at higher education. But so far things are going well a new sense of purpose driving you to prove the naysayers wrong.

My point in writing all of this is that things have gotten so much better. As I’m a month away from my 22nd birthday I truly understand how far I`ve come not only from 18 but also from 20. My adulthood has been good to me thus far.

-Sam, 21

Why I Will No Longer Apologize For Making You Uncomfortable About Addiction

*Author’s Note* This is a post in response to the social media backlash I received after posting my now deleted post “The Magician The Addict: An Open Letter To Those Enabling Addicts Everywhere” 

To those I previously offended, outraged or embarrassed with my previous post, I’m not really all that sorry.  Instead while I take the time to write this post more are dying from opiates and even more are in denial about either their use or the fact a love one is using.

Last time I checked this is 2017 long gone is the era of sweeping bad things that happen to us under the rug and ignoring them much like an unattended pot until it boils over. By sweeping so called “family business” under the rug to never be spoken about until it’s far too late these people are being even more enabling to the addicts they love. Shovel more dirt on the grave.

I was berated and criticized for my opinions and voicing them publicly as if  the facts weren’t talked about they’d go away. Opening up a discussion about topics such as these is crucial and I’m not sorry if you’re uncomfortable, that’s your prerogative don’t shove your insecurities down my throat. I was told to “remember all the times those who I love with addiction helped me” and I do remember those times so it is with nothing but love for those I love that I try to help. But there were also the not so good times and those have a more lasting impact. Ignoring the problem and shutting those down who try to bring them to light is no better than pushing the plunger down on the needle, giving them a straw, a spoon whatever it may be.

We can not ignore problems that make us uncomfortable. Instead of enabling we must help. But often times we are ready to help sooner than they are ready to receive, so we can only offer rides to meetings, prayer, a friendly ear until then. But denial helps no one one.

Dear Society: Stop Romanticizing Being Wheelchair Bound

Dear Society,

When you put us in your tv shows and movies do you realize how disgustingly inaccurate you’re being?  We as a minority are all too often subjected to being either a sidekick, a background character or the best yet a vehicle for drama. Even when a character is wheelchair bound it is often downplayed severely.

I want a character that has a one on one aid, I want a character that has to rely on a staff person. Why is there no one like me in the media? Why didn’t it take the character in “Forrest Gump”  Lt Dan YEARS to get his new legs? What insurance plan does he have, because I want it? Since in the real world it takes at least a year, maybe two to get any sort of medical equipment; and that’s AFTER the 5 year waiting period before the process for a new wheelchair can even start.

I’d love to see a single father take care of his teenaged disabled daughter, like mine had to do for years. Show him dreading the bra shopping, the visits from “Aunt Flo” and the mood swings.

Why do these media portrayed wheelchair users have it so easy? Why does no one mention constipation, pressure sores or the fact everything HURTS if it rains. They don’t talk about it because it’s too real. They’d rather us sing “Proud Mary” in wheelchairs, have Stephen Hawking like intelligence, make light of situations or not exist at all.

People with disabilities are the world’s largest minority and the most under and inaccurately represented group in the media. Something’s gotta give.

Sincerely,

A real wheelchair user

 

Being 21 with baby fever and a crippling fear of having kids 

My biological clock has never ticked rather it has rung loudly with flashing lights and sirens. I’ve had baby fever since the first drop of blood at 12 I’ve longed for children my womb may never hold. Then there is the creeping thought that lives in the back of my head that if I bare children will they come out disabled like me. And the burden of a disability is one I wouldn’t wish upon my worst enemy. 
Medically my diagnosis of Cerebral Palsy isn’t hereditary as the condition is often caused by complications at birth. Yet I still fear somehow I’ll birth a child that  along with a plecenta it will be born into a wheelchair. 

When my niece and nephew (pictured above now 3 and a half) were born I was scared that one of the twins would somehow have some kind of disability. I recall asking my older brother what he would do if one of his babies turned out different. His response was to love them as he loved me. Thankfully my worries were for naught as both twins are beautiful funny people. 

Although I’m fine playing the role of “cool auntie ” my baby fever gets worse as more and more of my classmates and peers have children.  Seeing their social medias full of cherubic little faces makes me kinda sad. The “equipment ” so to speak but it’s the process itself that causes issue. So much love in a body unwilling to share.