Monday, January 17, 2022

The Gap: Few Options for Those With Severe Mental Illness

  The Americas With Disabilities Act re-crafted the previous mental health system by ensuring rights to those with mental illness. The result for those of us caring for persons with severe mental illness is that long term involuntary treatment isn’t an option. Doctors are limited to about 15 days on a court order. The severely mentally ill, who will not voluntarily enter treatment unless they end up in the criminal justice system or probate court have no options. Even then, the system has been restructured so that there are very few if any facilities left to house and treat those <1% of people with severe illness. Long gone are the state facilities that provided this care. It has been left to families or prisons to deal with.

Facts. Harsh implications for our families, but the quality of care in the facilities before ADA was also very troubling. There needs to be some way to bridge the gap.

Saturday, January 1, 2022

Thoughts On Suffering

 God gives and God takes away. 

Why did my father die at age 50, in my last semester of college and two years before I was married?
Why did my mom die ten years later at age 56 from the complications of -then untreatable- primary progressive MS?
Why did I miscarry my third child after two healthy births?
Why does my son, so beautiful and talented, have medication resistant schizoaffective disorder?
Maybe God has more compassion for our suffering and our understanding of death is very different from his. 
After having my first baby, I was mystified as to why birth is shrouded in such secrecy. We all come into the world the same way, more or less, but there were so many things I didn’t know.
Death, too, is part of our natural cycle. Yet, we have as little understanding of it as birth. We learn to fear it. Will it be painful? Will it take me in my sleep or take me too soon? How will I go on if my loved one dies? Nothing about it seems fair.
I know some things. My mom taught me to sew, gave me an appreciation of the opportunities around me. She signed me up for my first dance class and was in the audience at my last recital. She was there at my wedding and got to meet my first two children. She was in so much pain and had suffered such unasked for humiliation as her body betrayed her when her end finally came.
My dad was the kindest person I’ve met. He stopped to chat with people he knew every time we went out to the store or a restaurant. I think he knew everyone in town. It drove me crazy because every errand would take so very long and I’d tug at him to hurry so we could leave. I know how my children feel when I am the one who now can’t shut up when I see a friend. His heart gave out after a lifetime of type 1 diabetes. He no longer has to give himself injections everyday or watch his diet.
My unborn child likely had developmental complications and if born might have faced a lifetime of ordeals. Had she been born, I would never have had Julia, who even at age 17, still delights me even if I still embarrass her. This will pass.
I can’t continue without mentioning my eldest daughter. She delights me to my very core. I’m as mystified by her as I am proud. She is so much like me and yet surpasses anything I’ve ever done. She was probably far wiser than I from the time she was born and there are parts of her as an adult that I long to understand. She is strong and yet a puzzle to me. She taught me that children are a gift for us to nurture, but we have to let them go and trust that they will return in their own time.
My son is teaching me more about loving a person just as they are than any book on agape love ever could. I’m learning to let go of the boy he once was and accept that he is gone, except for a few traces here and there. I’m learning that his illness isn’t an ending, but an opportunity to embrace a different path. A bumpier one maybe, but I don’t try to counterfactualize what might have been if I’d done things differently. The past is best left in the past and I face forward now. I try anyway.
The lines from the song Wait For It from Hamilton play through my mind even now:
“Life doesn’t discriminate….Love doesn’t discriminate….Death doesn’t discriminate…. between the sinners and the saints and it takes and it takes…”
Birth to death, cradle to grave and all of the in betweens are part of life, for each and every one of us. God’s love toward us and his compassion for our suffering is just as constant.