*This week’s blog was written by guest blogger, Beth Lewis, Director of Community Supports of ARC Marion.
When we tell stories of people with developmental disabilities, they usually end up being something about money. That’s really unfortunate when the subject of money also has something to do with someone’s life. Stories about funding in the human service realm seem to always trump other good tales about real people. However, I want to tell you about a great person.
It’s unique the way a developmentally disabled individual has a lifelong effect on service providers, teachers, case managers, and caregivers. They even help us develop and hone our skills. I call it part of the “paycheck.” (Now isn’t that funny how even that statement goes right back to money.) More times than not, one of these special people touches the lives of many. It can be through a smile, in the way they express themselves, or even from a creative thought. Even through a terminal illness, ”Johnny” has touched lives like this and continues to do so. (I’m not using his real name in order to protect his identity).
The first time I met Johnny, I was an on-call job coach, and he needed a ride from his job at a local steakhouse. As a coach, I was just following instructions, to go and pick him up and bring him home. When I pulled in, Johnny knew I was his ride right away. I guess I looked different than the customers coming in to eat. Over six- feet tall Johnny took my hand shaking it up and down. “I’m ‘Johnny,’” he said. From the time we left the steakhouse till the time we got to his group home, Johnny had rearranged my entire vehicle. All my CD’s were stacked neatly; even my trash was organized with a paper stack and a plastic stack. I thanked him. He thanked me, and that encounter some 10 years ago made an immediate impression on me.
Johnny has never met a stranger. Before his illness, he loved to work. Johnny was quite successful. He got his own apartment and even though he had a few different jobs, he kept steady employment. Every time I saw him, Johnny would greet me the same way and say my name, too, just in case I didn’t introduce myself to him again. If Johnny went grocery shopping he knew everyone’s name, and they knew his. And when it comes to taking pictures, nobody can smile bigger. Everywhere Johnny goes he makes a lasting impression.
I got the news shortly after he did; a large mass was in his abdomen. My heart sank. Was it treatable? How did it happen? Not Johnny! From that point things moved quickly. Johnny was immediately in for batteries of tests and moved into a nursing facility. After wading through the navigation of insurance, Medicaid and red tape, aggressive treatments began. Johnny was getting regular intensive treatments to shrink the mass, and then had to be moved to a nursing home facility closer to the cancer center. Changing the catheter made him scream in agony. His apartment, where he had gained such independence, was emptied out, leaving all his caregivers and family devastated.
Last month was Johnny’s 33rd birthday, and the doctors’ reports had not gotten any better. Johnny’s aggressive treatments were not working and even if they had worked, he would have needed a double leg amputation! According to all the “professionals,” the last possible chance for Johnny is a new form of experimental treatment. They’re assuming he has one year left to live.
A group of us traveled to see him last week for his birthday. I wasn’t sure what to expect on the ride to see him. It would be so heart breaking to see our tall,young, happy, successful, Johnny in the bed withering away. As I walked in to introduce myself to the staff, there was nothing but dread on my face, until Johnny wheeled himself around the corner. “Gonna fix the belly and the leg,” he said. Johnny was full of life and remembered us immediately. He told me about his favorite football team, and high-fived all the residents as he wheeled by. Johnnygave us a complete tour of the facility, busting open doors and interrupting meetings. I couldn’t keep up with him, and it was great.
I don’t expect every visit to see him in the coming weeks and months to be so wonderful and exciting, but anything can happen. If Johnny hasn’t taught me anything else it’s to expect the unexpected out of great people.
Unfortunately for many people who work in the health services industry, from those working with children or families to those working with the developmentally disabled, I think that money is often their bottom line so that they can put food on their own table. However, when I used to work with families in crisis, I always kept it in the back of my mind that it could be me one day, and no one is immune. The difference for some is that often to the detriment of our company’s profit, caregivers sacrifice everything to continue to provide care or service to those individuals who most need it. The big business people who profit financially in this field are those who have never wiped poop off someone’s hand or comforted a mother who just lost her infant to SIDS. Those profiteers really have no understanding that when you care for an individual who needs you, you want to continue to help them even if their money to pay you for that service runs out. If it’s up to me, I’ll take less pay, because my “paycheck” really is the learning and growth returned to me every time I reach out to help another.
I know in my heart of hearts that Johnny’s going to be fine whatever the outcome. And for those of us who really care, we all will be, too.