People with spinal cord injuries and other disabilities are often treated like minor league baseball players when it comes to quality of life issues. For example, if you come home from rehab for an acquired disability, where positive quality of life and a good quality of life is the touted outcome, it can feel like winning the World Series first, then being sent to the minor leagues, where you have to rustle up your own uniform as you face the need for equipment over the years.
When my mobility became impaired due to my shoulder injury I watched my quality of life go downhill rapidly. I knew I needed a power chair to get around. I've been in the minors for years and knew I had to hustle. So I went to Ebay. Then long nights up late to earn money for one. I prayed. A Catholic medical dealer went to great lengths to help me afford exactly what I needed - and wanted.
And now there is the transportation issue, because not having transportation affects quality of life too. As there was the ramp, the accessible bathroom, kitchen and other things.
You hustle, bustle, rustle up things when you're in the minors. Don't dwell on the problem, work on the solution.
I also remember that, on God's spiritual team, I'm never a minor leaguer but equal to everyone else. I don't have to wear torn clothes or watch the team bus pass me by refusing to lower the lift. I'm never hungry in my spiritual body because I can't reach far enough to get at food, because I'm a member of God's family and my brothers and sisters aren't going to stand by and allow one of their own to suffer, to be treated that way.
Yet here on earth it happens every day to people with disabilities like me.
Those are the moments when I know that having quadriplegia and the physical dependence that comes with it present me with a spiritual crossroad: do I trust in God? Do I allow my faith to to be shot through with holes or do I remain firm in my convictions whether or not God provides? I choose to trust God.
Some would argue that mine is a ludicrous trust, but they may judge it on whether I actually get what I need in an earthly sense. And I've found that isn't always what determines my quality of life. My spiritual state is what matters. If I don't get what I need, I often get what I need spiritually in order to make it possible for me to do God's will. And if I keep the focus on doing God's will, I do okay in terms of having a good quality of life.
God always finds a way to remind me that I'm not a minor leaguer, no matter how the world may see me or treat me as a person with a disability. There are no minor leaguers on God's team.
6 comments:
This really helped me deal with perspective on some problems I'm having. I forget that if I dont get what I ask for when I pray it doesn't mean that God has forgotten me or doesn't care. Lately we're having money issues and losing our house. We worked so hard. I wanted to use the money for college for the kids but now nothing and am so scared. My kids are great. All of them worked harder in school and will try to get scholarships but it's just hard to lose the house and watch them struggle with part time jobs and saving when I want to give to them.
I have to remember that we're not minor leaguers either even if we feel kind of beat up right now.
Anon- Going through financial issues is very painful and many are faced with this, but that doesn't make it any easier on the people it affects. Your kids have apparently been raised well- and are resilient enough to weather this. A tribute to your parenting and I hope you see that!
One suggestion I have is to try to find others in the same boat if you can and help each other out as you can. I really believe in that as a way of life.
You are going to feel pain of course. Getting attached to a family home is understandable and the changes involved may include losing pets, etc. I'll keep you in my prayers that people come into your life to help you heal and who can listen to you and be there for you.
And let me know what position you want to play on God's team - I think I'll be the quadriplegic pitcher :)
My son received all the equipment he needed at first when home from the hospital. Years later denials from insurance companies and we have become creative like you talk about to get necessities. It's difficult to understand why items are not covered so that he can live and I don't know how he would manage if his father and I weren't there to help out or should I say when we can't do it any more.
Mary
Mary- I hear what you're saying. There's a need to address the issues facing people with disabilities, their access to equipment and services, employment, and many other areas. Each of us is in a different situation but there needs to be a humane way to help folks attain a quality of life so parents don't need to lay awake worrying.
"Those are the moments when I know that having quadriplegia and the physical dependence that comes with it present me with a spiritual crossroad: do I trust in God? Do I allow my faith to to be shot through with holes or do I remain firm in my convictions whether or not God provides? I choose to trust God."
Ruth, that is the best testimony of faith in God that I have ever heard; it sounds as though it came directly our of the Gospels.
Tausign - thank you but God knows I never write alone :)
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