Operation S.O.S

Feels like I’m giving up.

Having to stop and regroup and change my game plan feels an awful lot like I’m giving in.

People try to give me words of encouragement and all I can say is “what? You don’t have a clue how this feels. Who are YOU to try and make me feel better? You’re on the outside looking in”

You know NOTHING.

I’m 23 years old and I feel like my privileges and rights have been stripped away.

I lost my right to privacy.

Lost my right to be considered healthy

Lost my ability to drive.

Lost my ability to live my life to the fullest.

For a long time I’d gained it all back. I was mortally immortal. I could take my niece out places. I could travel alone. I could drive. Go anywhere I pleased without having to worry about if I’d be okay.

That’s over now.

My life was knocked back down to reality on May 28^th, again on June 22^nd and June 27^th

How terribly melodramatic of me.

But I want to smash windows and walls. I want to scream. I want to know why God needed me to be sick. I ask for understanding of a lot of things, but none more than this. I thought it all night and couldn’t bring myself to say it until today.

I don’t want to die. Not really. But I can’t stand the thought of living this way for the rest of my life.

Depression + Seizures = stronger Depression

Don’t let something happen to disrupt my sleep = more seizures = Stronger Depression

Want to do some extra hard working? Nope. Have a seat or you’ll have another seizure.

Is it truly possible for me to live my dreams when I can’t push myself? The moment I do, I come crashing down.

I feel like I’ve gotten so weak by this that now my soul can’t handle it. I just want to be normal again. I want to live without fear of losing control of my own body.

But that’s never going to happen.

I won’t be normal again. 

there are those days…

when i wish that somehow… magically

i’ll be all better. and i’ll wake up and the cough will 

be gone… and my lungs will be healthy and strong.

and there will be no more use for all the different medicines

and the oxygen. 

and everything will be back to normal.

but…

reality sets in.

and i know it’ll never be like that anymore. 

and that, sometimes, makes me want to give up… 

*sIgh*

1st Impression Jitters

Meeting new people is always difficult. You’re always left with that feeling of “I wonder if they like me?” or “I wonder if I made a good enough impression?”. Imagine that feeling being multiplied by, oh let’s say, a MILLION! That’s exactly how I feel when I meet new people. Especially now.

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A Call For Love

When I was first diagnosed with my lung disease I was single. About two years prior I got out of a relationship I should have never been in anyway! There. was so much pain and anguish in my previous relationship. I hurt a lot of people and people hurt me. It was a time in my life that I feel like I had to go through in order to grow as a woman. 

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“A sister is one who reaches for your hand and touches your heart.”

Few years ago, I met someone who not only would become a great friend, but a sister as well.  Jewel is one of the most amazing, beautiful, and kindest people I know.  She holds my secrets, shares my tears and my laughter. She is the most deserving of unexplainable happiness and a life filled with joy.

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7 years of confessions of Jerome’s little sister.

For seven years I watched a man defy all odds…

They wrote him off as dead,stupid,a liability to society,and worthless…Just another black man taking up space

So he became a mentor,a college student,a man of Christ,a college graduate and my own personal super hero.

For 7 years I watched God heal and change

God changed him…..Not saved,but changed

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The Hardest Part…

Sorry for the late post. I haven’t been in the best of spirits or feeling very well lately. I find it difficult some days to push myself to sit in front of the computer and be vulnerable. 

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Shattering the ableist lens

I’ve realized that the source of most of my social woes stem from my subconscious effort to live life through an ableist lens. In plain english, I’ve held myself up to the standards of able-bodied people and society. Trying to make myself as least of a burden as possible. To be a version of myself that isn’t so “actively” disabled so that those around me are more comfortable. I’ve questioned the tangibleness of a lasting relationship for someone like myself. Is this realistic? What do I have to offer? I’ve pitted myself against other disabled people and hated myself for being somewhere down the middle of the spectrum. Everyday I constantly wonder how those around me perceive me. Can they see enough of me and still respect my need for assistance? It is often said that people with disabilities are and can do things “just like everyone else” Yes, we can do anything we set our minds to, but we must often adapt it to our needs. We do not do things “like everyone else” and that’s ok. Instead of sugar coating our needs to fit into that ableist box of inspiration, We must stand up and embrace our differences. Highlight their beauty, and handle them with grace. Seek not to live up to an ideal, but create our own. I’m never gonna sit perfectly straight, I will always be able to feed myself but need help with my jacket, and my sex life is never going to look like something out of the L word. And, I’m finally okay with that. Yes, you can slip on a bathroom floor and still be sexy to someone. If they wanted a perfect looking able-bodied person, they wouldn’t be dating you in all of your beautifully imperfect glory. Oh, the things a little introspection can teach us. I am woman, I have a disability, and I am PROUD!

For this reason alone…

I am going to post a more in depth post in a moment… but, I just wanted to share a few words.

I have already seen a payoff to what this blog can do for people. I have seen the love and support a blog like this can bring. Not only to me, but to others all around the globe who struggle with life changing illnesses. 

Together we can spread awareness about our disabilities. Together we can hold each other up. 

Hug someone today. Tell someone they matter. And especially love someone. 

And mean it!