A letter to my spinal cord injury

To my spinal cord injury, 

You forced me to grow up at the age of 14. You have been, and always will be the biggest reality check of my life. You forced me to realize that most friends are temporary, and some become family. You made me realize my family is my everything. As much as I hate you for what you have, and continue, to put me though I also have this weird love for you. You made me realize how important life is. You made me realize how strong and supportive my family is. You were some odd and unfamiliar glue that brought me closer to the people who truly matter. I would give you up in a heartbeat, but I would never give up the life lessons you have taught me. Because of you I am mentally strong. Because of you I am physically weak. Because of you I am me. You will always be a blessing and a curse 🥀 .

My First Heartbreak

I experienced my first heartbreak at the young age of fourteen. I know what you're thinking, fourteen is too young to know what a heartbreak really is. This heartbreak was not the typical my boyfriend broke up with me, or someone died type of heartbreak. I was fourteen and mourning the loss of life as I knew it. Fourteen should be the age of adapting to high school and obsessing over cute boys with your girlfriends, not the age of sorrow and relearning how to live your life. 

I don't remember waking up in the hospital and being told I was now a quadriplegic. It was just something I already knew. Whether or not I just don't remember someone saying those words to me could be the case (morphine is one hell of a drug). I have yet to go through anything as devastating as being told not only will I never walk again, but I will never move about 85% of my body again, or breathe without a ventilator. Oh yeah! Another zinger, I will now pee through a tube and have a set bowel routine. I can't even feed myself and now I have to worry about possibly pissing myself. Oh joy! As if things couldn't get any worse...but wait! There's more! Once I returned home, three months later, all my friends stopped coming around. So not only was I embarrassed of myself my friends were too. 

I cried, but not as much as I should have. You see, the thing with being 100% dependent on others to live means holding a lot in because you don't want to bring down their day. Most of my tears were, and still are, shed when I am finally alone and going to sleep. Yes, eleven years later I still have moments where I break down. I don't think you ever really get over losing everything you once knew. You just learn to live with it and become a new (hopefully improved) you. 

I like to think that I have adapted well, but I still feel sorry for my fourteen year old self sometimes. I am really good at being strong for everyone else, but myself. There are now more good days than bad. Eleven years later and I am no longer on a ventilator. I have more independence, but not much. This heartbreak is not easy and never will be, but I slowly add more band-aids to it. I would never wish this on anybody because very few have enough band-aids to push through it, and still shine bright. 

Unapologetically Me

I get asked a lot about how I’m so confident in my wheelchair and with my body. The truth is, I wasn’t always this way. I spent a long time hating myself and being embarrassed of the way I looked in my wheelchair. If I’m being 100% honest, I still have my days where I look in the mirror and wish I were standing so my clothes fit better. Days where I wish I had full body function, so my body looked “normal”. But what really is normal?? Nobody is the same, and whether you’re able bodied or not you will always compare yourself to others.

The day that I realized this is MY body, and the only one I get, so I better learn to love it is the day I changed for the better. Sure, I can compare myself to tons of girls but why?? I’ll never be them. I am me and they are them. My body is full of scars and weird things, but it’s still mine. I love every scar I have because they tell my story. I love my little quirks because they make me different. For every person that you wish you looked like, that person is wishing they looked like someone else.

Stop putting that energy towards wanting to be someone else and learn to love being yourself. It won’t happen overnight, maybe not even over a year, but it is possible. It took me about 5 years to be completely comfortable in my skin. I’m comfortable posting pictures in my chair. I’m comfortable going anywhere in public. If people are going to stare at me, I might as well give them something to stare at. That doesn’t always mean dressing up. That means carrying that confidence with you everywhere you go. There will always be someone prettier, but there will never be another you. For my wheelchair girls, you go out and wear that chair don’t let the chair wear you. You are not your chair! You are you! That chair is just your accessory, your throne, you make that chair look good!

Mind Over Matter

      As I get closer to the 11-year anniversary of my accident, I find myself reflecting on a lot. I start drifting back to the “what ifs”. What if I never got in that car? What if I had just worn my seatbelt? What if my parents followed the doctor’s advice and put me in a nursing home? What if I was dead on the scene like initially reported? There are so many “what ifs”, but if I spent my time dwelling on the "what ifs" I would never get the joy of experiencing the "right nows".

      Everyone has been through some messed up things in their lives, and some of us let that run our every thought. Life will continue to throw salt on your wounds, and I refuse to wake up every morning and think of everything I cannot do. Sure, there are way more things I cannot do. I cannot get up on my own. I cannot do everyday things without an assistive device of some sort. Something as simple as eating requires a special spoon. Something as simple as opening a door I need help with. Something as simple as moving 5 feet requires a lot of work. The list goes on and on.

          BUT you know what I can do? I can use my mind! The mind is a powerful thing. I can use my mind to educate others. I can use my mind to achieve my goals. I can use my mind to build relationships with people around me. I can use my mind to speak up for myself. I can use my mind to learn everything there is to know in the world. Some people aren’t as lucky to have the ability to do the things that I can. So, yes sometimes I get down about my situation, but I remind myself that not everyone is as lucky as me.

   Strangers may see me as that poor girl for being in a wheelchair, but I see myself as that mentally strong girl who can grab life by the balls and roll with it.  Life gets hard, but the good should always outweigh the bad. Never forget where you came from, but also never forget to grow from every experience. Never allow your hardships to make you a Bitter Betty. 

    

Don't Make My Disability Taboo

WARNING: This may be a matter of personal opinion, but this is my blog and my opinion.

Often times I find myself being asked by children what is wrong with me, or what happened to me. Sometimes they whisper their questions to their parents instead of asking me directly. No matter what way these children ask, they are almost always hushed by their parents. I always tell the parents it is okay, and then try to explain why I use a wheelchair to get around. My explanation varies depending on the child's age. I want children as well as adults to know that it is okay to use different ways to get around. Some people walk. Some people limp. Some people roll. 

So parents, please do not hush your child when they are just trying to understand. It is one thing to ask why I am in a wheelchair because you are being nosy, but most children are just trying to comprehend the wheelchair. I truly feel that by shushing your child, when they are asking about one's disability, that you are adding to the stigma that people with disabilities are not normal human beings. 

Some people may not be okay with talking about their disability, but that is where you as a parent step in and explain disabilities to your child. Explain to them that some people cannot walk, so they use a cool device to help them get around. Explain to them that some people look different, but they still deserve to be treated with kindness. Explain to them that it is okay to be different. Explain to them that a disability can happen to anybody, so it is important to treat everyone with the same amount of kindness and respect. 

My disability is not silent or hidden, so please do not keep it silent or hidden from your child. You never know, by me explaining my disability to your curious child they may then spread the word to their friends. That child in their school who is a little bit different may then be accepted into a new group of friends. We are all unique in our own ways, but don't make my uniqueness a taboo.

I Just Make It Look Easy

I always try to see the bright side of every situation, but today is just one of those days. Life with a spinal cord injury is not all about good parking, and always having a place to sit. This shit is HARD! Just because I make it look easy does not mean it is. Remaining positive when you literally have zero control of your own body gets tough. Forgive me for having a bad day and being a little moody on occasion. This is how I vent, so here goes!

Imagine waking up every morning and having to wait for someone to help you get out of bed. My life revolves around waiting on people to help me. Imagine not wanting to ask for help because you don't want to bug your caregiver more than you already have. Imagine having to wait until someone is ready to help you with whatever because you rely on them to do anything and everything. I am beyond thankful for my caregivers who do everything for me. They get tired too. It has to be exhausting caring for someone's every need which is why I try my best to be understanding. I just get tired of feeling like I am burdening others by needing so much help.

Imagine constantly living with bladder infections because you have to use a catheter to pee. The one thing you need to live could be the very thing to take your life. Going septic from a bladder infection is very real. We can't constantly live on antibiotics, but who wants to feel like shit all of the time? I wonder if I even remember what it feels like to be 100% healthy. Imagine being terrified of catching a simple cold because you can't cough good, and it will likely turn into pneumonia. 

Imagine having to constantly adjust positions, and make sure nothing is rubbing or poking you. Pressure sores are so deadly, and a thing we have to constantly worry about. Imagine being so uncomfortable in your wheelchair, but being denied modifications because they are not covered by insurance. I have been uncomfortable on my wheelchair cushion for months now, but insurance will not cover the test to see which cushion will be best for me. I was literally told I needed to have had major pressure sore surgery to get that test covered. So guess where I am on my way to? To my first pressure sore in 10 years. 

Imagine living with constant pain, but constantly being told how lucky you are to be sitting all of the time. Imagine having a total working brain, but still being treated as a child because of society's ignorance about disabilities. Imagine strangers touching you asking if you can feel it. Imagine being reminded everyday of the worst day of your life because you are constantly reminded you are paralyzed. So please do forgive me for my bad days, but I am entitled to them. 

The list goes on and on. I may make this life look easy, but I wouldn't wish it on my worst enemy.

I Shine Brighter Than My Rims

Ten years ago, I never thought I would be anything more than just a girl in a wheelchair. I spent my days cropping out my wheelchair and using old pictures. Hiding behind a computer screen was easier than facing reality for my fourteen year old self. I constantly wondered, "Why me?". What did I do that was so bad in my fourteen years of life to deserve this? I had tons of friends and boys wanting to date me, but I lost all of that the day I started seeing myself as a set of wheels and not a human being. Many of you are guilty of seeing the wheelchair before the person, and many of you are in a wheelchair yourself. 

I can now proudly say, I stopped seeing myself as a set of wheels. Once I started seeing myself as a regular person, other people did too. I no longer look in the mirror and think how ugly I am because of these wheels. I look in the mirror and see a badass chick who has been through hell and still wears a genuine smile. It is all about perspective!

Sure, people still see the wheelchair first but I don't. Once someone gets to know me, they often forget I am even in a wheelchair. They don't forget because they can't see my wheelchair, they forget because who I am shines brighter than my rims. Nobody wants to be around someone who wallows in self pity, so I stopped being that person. Shit happens and it sucks, but we have to pull through. If you can't laugh at the misfortune this injury causes then you will forever be stuck in a sad place. I am not saying people can't have bad days, but I will always say it is just a bad day not a bad life!

 After ten years, I no longer question "Why me?". I know this happened so I can reach out to that fourteen year old girl and say it gets better. Time may not heal our wounds, but it teaches us to cope with them. Learn to love every part of yourself because every part of you is unique. I hope that no matter what anyone is going through that they look in the mirror and see the good not the bad. You only get one life, and if you don't love yourself then nobody will. As my dad says best, "Love yourself, fuck everyone else!"