2018 was similar to other years. Full of ups and downs, trials and triumphs, heartache and happiness. As the year comes to a close I find myself reflecting on the things that have past and also anticipating the things to come.
I wrote a book. More the Same than Different: What I Wish People Knew About Respecting and Including People with Disabilities was launched on Amazon on May 9th. (The link is here if anyone is interested.) The book signing at the Lawrence Arts Center was amazing. In the last few months, there have been numerous presentations about the book and group discussions at book clubs and all the reviews so far have been phenomenal. My hope is that many people benefit from the information in this book. My biggest goal for 2019 is to market it to masses of people.
This past year was an interesting one in terms of caregivers. I’m not sure I’ve had a year in recent history that was so challenging in terms of finding good people to work that would stick. There were times when I didn’t have anyone working for me. And although that was terrifying, it also pushed me to do some things independently that I would not have otherwise attempted. Then there were some caregivers who had unexpected family emergencies and had to quit without notice. There were some who didn’t like me much. Others who thought they were in charge. And I have had a caregiver or two this year who were just not a good match for what I needed. As always, when the new year starts I will be looking for more people to join my team. And so it goes.
This past year was also challenging in terms of my health. I pushed really hard to get the book out on time, which meant there were many 12 hour days at my computer rearranging words and paragraphs and trying to phrase something just a little better. After the book signing, I crashed hard and started to experience significant pain. A visit to my urologist (Dr. Heeb) confirmed a kidney stone the size of Montana, and it took seven separate procedures (with recovery time after each) to blast it away. I also had to have surgery this past summer to get my baclofen pump replaced. The nurses in that particular section of the hospital got to know me very well. They were great. I also appreciate that I had a doctor who took the time to listen to how I wanted to handle what we needed to do instead of what was the quickest and most efficient way for him. Dr. Heeb and I met in 1993 during his residency at KU Med. He’s been looking out for me for a very long time. In the last few weeks, he helped me through bad kidney infection at the same time I had the flu.
As I look ahead, there is a new company headquartered in Arkansas that has to handle payroll for my caregivers for the foreseeable future. From what I have heard, they handle Medicaid billing for caregivers in fourteen states. I don’t have a choice about whether to use them, and I have a concern that both me and my caregivers might get lost in the shuffle a bit. In my experience, when caregivers don’t get paid on time for various not-our-fault reasons, they walk away from me. And I can’t say I blame them.
I got a new Bible for Christmas and I have spent a lot of time in the last few days reading and thinking about the stories in it. A particular story in Genesis sticks out to me right now. Jacob was wrestling with God. During the fight, Jacob said, “I’m not letting you go until you bless me.” God broke Jacob’s hip and he limped away. God was more powerful than Jacob. He always wins.
In the past few months, I have been wrestling with God. I have been wondering why all of this has happened and asking the tough question of “Why?” It hasn’t gotten me anywhere, but I have continued to pray. It occurred to me recently that every major event in my life in the past year has happened because I have a disability. I wrote my book. I got rid of my kidney stone. And I have a few caregivers currently that are really top notch.
As I look to 2019, I will continue to advocate for the things that are needed for myself and on behalf of some people who cannot speak for themselves. I will stand up to injustice and I will keep talking about empowerment until the people in power make a habit of listening.
In the past few months, I have wrestled with God. I have cried to Him to bless me. And He has. God always wins. I am not letting Him go.
Happy 2019 everyone!