In the late night hours of October 3rd, 1968, my mom went into labor. With me. It caught everyone off guard because I wasn’t due for another ten weeks or so. But, I guess even then, my stubborn streak showed itself as I made my way into the world early the next morning. Things were touch and go for awhile. I was baptized pretty quickly in case I didn’t make it. My next six weeks were spent in an incubator, where I fought ferociously for life.
As a kid, many surgeries and countless hours of physical and occupational therapy consumed my days. I was taught how to dress myself and navigate buttons and snaps with my limited finger dexterity. I also learned to develop things like my eye-hand coordination which would help me accomplish everyday tasks. In addition, I was taught how to get up on my feet, first with a walker, and then with canes. When I was young, my parents were told to routinely take me outside and drop me on a mattress in our yard, so that I would instinctively learn how to tuck my head and put my hands in front of my face when I fell. Given my lack of balance, my doctors said, I was going to fall often. Speech therapy was added to the mix in grade school because I had trouble pronouncing my “L’s” and my “S’s.”
In junior high, I had to switch schools and attend one about a half hour away from my house, because the school in my neighborhood was not accessible.
I fought against all of it with everything I had. I just wanted to be a typical kid. But I also understood, from the time I was small, that this was my life, the one I had fought for ferociously.
Sports became the outlet in high school that consumed me almost constantly. That was because sports were the first thing I found that I could do because of my disability, and not of in spite of it. I wanted to excel because sports taught me to work with my disability instead of against it.
As I got older and had more life experience I began to understand that people often see those of us with disabilities as “broken” or “less than.” That had been my experience sometimes. And as a result, I learned advocacy skills to fight injustice and to try to improve the lives of myself and others like me. Sometimes that works, and sometimes, even now, I wonder if the people who have so much power over my livelihood will ever truly understand what I experience.
This is my life. The one I fought for ferociously.
In the early morning hours of October 1st, 2017, five people were shot in the middle of downtown Lawrence where I live. Three of those people died. It hit close to home.
On the evening of October 2nd, in Las Vegas, Nevada, Stephen Paddock broke the window in room 135 on the 32nd floor of the Mandalay Bay Resort and Casino and started shooting into the crowd of thousands who had gathered to enjoy a country music concert. The last time I checked, 58 people had died, and 515 were wounded. It is hard for me to wrap my mind around so many lives being snuffed out so senselessly.
As I have said many times in recent posts, situations with new Medicaid policies have made my life difficult lately. For a few months now, I have had only a fraction of the care I have needed. There were times I have been angry. There were times when I have been overwhelmed. There were times when I have been terrified.
What got me through was the compassion and the love that I experienced in the situation. A friend of more than 20 years drove an hour each day for about two weeks to make sure my basic needs were covered. A former caregiver who currently lives out of town worked a shift because she knew I needed the help. A woman from my church came for an afternoon. She did some dishes, cut up some veggies and got me some groceries. And one of the nurses from Lawrence Memorial Hospital who I met a couple of decades ago came over last weekend, in between her two jobs, to help me in and out of bed. She even brought me homemade soup.
It’s a whole lot to think about on the eve of my 49th birthday.
My life is not easy most of the time, but it is fragile and precious. And no matter how frustrating my life gets, this is the life I fought for. Ferociously.
Love and compassion make it okay.