I thought about all the different people I learned about growing up and the differently able community was the only group left out. Growing up black, I know what it's like to be different. I know what it's like for people to look at you weird on public transportation or for people to talk to you like they’ve never been around “your type” before. That happens when a person really isn’t educated about a certain community. As a kid I was never really taught about blindness and how it affects a person.
Minus the outbreaks mentioned above a lot of us internalize our feelings. We pretend we are fine when in reality it feels like our insides are falling apart. We try to push through the pain, the nausea, the dizziness or whatever other symptom we’re experiencing. We try to be brave and put on a good face for the rest of humanity, but on the inside the struggle is so very real. So we need you to come alongside us and ask us how we’re really doing. Don’t just accept okay or good because odds are we probably aren’t okay.
Living with a chronic disease and fighting for my survival has made me grasp how precious life is and that time is better spent making memories than collecting things. I love each and every memory I’ve made with my family and good friends. And plenty of memories are made around the holidays as the holidays have a tendency to bring people together. I have also seen how fleeting a life can be and how quickly someone can die; through a car wreck, disease or other type of accident. So cherish each and every moment you have with those you love because you never know when your last moment may be.
I try to control or at least anticipate the environments I'm in because it keeps me feeling safe. I’m like the world’s most annoying tourist: I want to know where we are going, with whom, for how long, and what it will be like when we get there. People will ask what kind of restaurant we should go to and instead of naming types of food, I’ll specify the atmosphere. Even my taste in museums has evolved as my SPD has gotten more pronounced. As much as I talk about filling museums with vigor, I’m guaranteed to visit on a slow day and avoid blockbuster exhibitions.
As time started to go by as I circled the garage I began to feel helpless. I thought back to my grandmother who died as my family drove from the airport to the hospital she was staying at, missing her death by approximately fifteen minutes. It was in the cocoon of my rental car that I began to confront the deep grief inside myself as tears of self pity, tears of anger, sadness, and frustration began to pour out.
I believe that functioning in this world includes the ability to get up every morning. In the life of an untreated, mentally ill person (or a person who has just begun treatment and hasn’t found the proper medication yet), this can be impossible. Some days can be easier than others, but I believe that every day should find a person able to get out of bed, whether they want to or not.
My hope is placed in Jesus, not in the doctors. Therefore I am not disappointed when a doctor has no answer for me, because if my hope is in Jesus then I can’t be disappointed. Instead I trust that He knows exactly what’s happening so I have no need to worry.
The thoughts and fears that are easily ignored in the brightness of sunshine are waiting for you under the cover of darkness, lurking in shadowy corners, poised to strike. There’s nowhere for you to hide, and so you must suffer in silence, on your back, in your bed, staring at the ceiling with wide, itchy eyes.
Born with a chronic gastrointestinal (stomach) disease I was constantly fighting a daily battle to keep my spirits up and not succumb to the thoughts and emotions that always threatened to overwhelm me. Texting was like a lifeline for me. It made me realize I wasn’t alone and there were people out there who loved and cared for me.
As I've progressed through this disease I've come to learn many different things, things that no one told me to expect. Things that have shocked me and shaken me to my core, but through all these things I've grown stronger as a person and that is the reason I am who I am now. So I thought I'd take a minute and share some of things with you, in case you too are struggling with a chronic disease, so that you can use the information to better your life.
