Editor’s Note: This post is an essay from one of the entrants in the patient/caregiver scholarship contest for our Health Care Social Media Summit in October. See this post for more details on the contest:
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Denise Mills’ essay:
I knock on the door with hope tainted by despair, some of it seeping in from my surroundings. There is some green, but there never was any grass, and the weeds and stones have taken control of the hill that leads down to this place my brother calls home. A solitary clay pot stands on concrete steps, holding a small wilted flower that gasps for water and attention.
He made that concrete stairway — it’s not a bad job. He built the wooden form and mixed the cement by hand with water he had hauled in on his bike – jug after jug, mile after mile. It’s a staircase to nowhere. Or is it? Is it a concrete symbol of longing — proof of a need to be considered useful — a plea for connection?
I knock again. “Richard, are you home?”
No answer. Instead, a refrigerator stands outside the front door – a substitute greeter. I open it with caution. There is a gallon of milk in there, and it’s cold. The expiration date has not passed, so he’s been here. He has not been taken away again. I try the door. It’s locked.
One more knock. “Richard. Please answer the door. It’s Denise.”
He opens the door slowly, squinting into the sunlight to ensure it is me before he comes out any further. I catch the scent of dirty laundry. “Hey,” he says, as he shuts the door behind him. I know what is behind that door. An old radio, a couch that sags in the middle and now resembles a hammock, and dirty clothing on a concrete floor.
Nothing has changed. Sadness still clings to the cobwebs that hang from above, making them droop in tandem with the couch. Loneliness bounces off plywood walls without insulation, or company, to stop its movement. Fear crawls along the concrete floor until it turns to soil.
“Hey, yourself,” I say, as I watch him lean against the refrigerator like an old man with a cane. He’s only 42 but looks like he’s 60.
“I’d invite you in,” he says, “but the place is a mess.” He lights a cigarette and grins.
And there it is. The grin. He had the same grin when his “Rock’Em Sock‘Em,” robot beat mine. When he let my spinning top go longer than his own. He’s my little brother. He looks like he could be my father. And he never, ever asked for this disease.
I want him to come home. I want him to have running water, and people to talk to, and lights that turn on with the flick of a switch.
But this is his home. He has built it with his own two hands and he is proud of his home. He paid for every piece of wood and every brick — it is both his prison and his refuge. He says he wants his independence, and that people leave him alone here. Who am I to deny him the dignity and freedom of his own choices? I am torn between what is right and what I want to be right — and each time I visit him I am no closer to winning the argument with myself…
This is a brief snapshot into the life experienced by those with schizophrenia and their family members. This illness has no cure and is extremely misunderstood. Social media can make a huge difference in providing a deeper understanding of what mental illnesses are like from the point of view of those who live with them. To remove the stigma, we must first remove the fear of the unknown. There has never been a better opportunity in the history of the world to accomplish this as there is now with social media. We are at the precipice of an opportunity to make a tremendous difference in awareness and acceptance. I truly want to be a part of that.
If selected, the skills I would learn from this conference would be put to use immediately by our local NAMI office (I serve on their Board of Directors) and local community mental health center. We are passionate about raising awareness/acceptance and will truly make use of this opportunity.