Sustainability

Over the weekend I enjoyed a day out with my friend Jodi, who is an incredibly creative, out-of-the-box thinker who is always fun to dream and brainstorm with. We did fun things like a farmers market, a tea room, a car show, a lake pier, and a bike trail at a state park. And we of course talked about disability life and accessibility in a very candid way that was challenging and exhilarating. 

I've been depending on my friends to voluntarily help me with my caregiving for a year now. Last summer was an experiment to see if it was possible,  and we saw that it was. But it was the long-term outlook for this kind of lifestyle that made me anxious; while it was miraculous that 30 women would offer to take care of me for 10 weeks, it was easier when we all knew (or thought we knew) there was an end point. Kind of like a "roughing it" camping trip or mission trip, anyone can handle inconvenience and discomfort for a limited time, right? But when I bought my house, the short-term mission trip shifted into a real commitment with an indefinite end, and I really wasn't sure how many of these ladies would be able to maintain it.

We've all learned a lot this year.  I've been learning to handle my relationships with care and grace, realizing that one way I can be a caregiver (aka, a good friend) is to allow people to take a break, whether it is for surgery and rehab, or a family crisis, or to focus on school, or to invest more in their marriage. The individuals and numbers have fluctuated with the seasons and life situations people are dealing with, and it's been really cool to see some friends step into more active roles when others have to step back. 

Thing is, I can't take a break from depending on caregivers. Every day, I need help to use the restroom and prepare meals and get in and out of bed. These needs continue and will continue for the rest of my life. So as my friends step back to rest or heal or take care of other people and things, I have to figure out how to fill the gaps with new friends, new helpers. I'm not saying that to complain, it's just the reality of my life. And friends like Jodi see this reality, and want to help me figure out how to manage it better. So our conversation this weekend was about sustainability, and how to ensure that I continue to get the healthy level of care I need for what we hope will be the long road ahead - the many years I have yet to live. It is a daunting thing to try to figure out! 

We talked about government dependence and medicaid-based care, and I reiterated that I really don't believe that is the answer for me. I could probably find a way to work the system, "fudge" the facts, manipulate my circumstances to fit certain qualifications, but I feel sick when I think about all the energy I would be expending to be dishonest, and all to "maybe" receive a limited amount of some version of the kind of care I need. It would be nice if I could find some kind of grant/stipend that I could use to privately hire caregivers, but I am not aware of any option like that. I could speak at churches and small groups and invite people to join my team, and there's the potential to work with nursing or PT/OT interns, too, but not sure yet what those responses will be.

As difficult as it is sometimes, I really think the best course of action is to keep trusting the Lord to be my Caregiver and to provide what I need. I mean, I will keep seeking out new friends, trying new experiences, and seizing new opportunities. But I have found that the harder I try to make things happen, especially out of fear or desperation, the more I hit walls and spin my wheels... the more frustrated my life becomes. The joy of the Lord is my strength, and whenever I choose anything but joy, I become truly disabled. It's better to keep my eyes open, my chin up, my heart hopeful, and my faith in Jesus. I've learned a lot this year, but the most important thing is that God is trustworthy and is the Source of unlimited resources; he hasn't failed me yet, and I think he still has so much he wants to do through this crazy faith experiment. 

I do ask that you PLEASE pray for me. This is not an easy thing. Pray for my faith and hope to stay strong; pray for me to keep meeting more friends who are available and eager to be caregivers; pray for me to have the courage to keep asking for help; pray for protection and blessings on the ladies who have been caring for me this year; and pray that all of it somehow brings honor and glory to God.