Lifting Up My Eyes
This morning I woke up to a memory of S.'s face when he was 5 years old. These things happen from time to time. I saw his swollen forehead, nose, eyes separated from the swelling. This is what happened to him when he had H.S. Purpura. He was not recognizable.
Sometimes this haunts me, today it was more of a nudge. Maybe it's God, maybe not. But I'm sensing the spark to pursue answers again.
Just a few weeks ago as we were eating lunch at one of his favorite Mexican restaurants, S. let me in on an intriguing aspect to how he sees his world. A cup was sitting on the table filled with soda and ice. He began describing something to me and mentioned how the cup with soda changed from dark to light and then back again. I stared at the cup and asked him, "so you see this changing colors?", he replied, "yea, don't you?".
"No, I don't son".
"Really?"
"Do other things change colors for you"? I asked further...
"Well, it's really more like shades. They change shades. Everything does."
"So how long has this been happening?"
He replied, "all my life".
The more he stabilizes, the more these things are slowly coming out. If I had to guess, I believe he has been seeing the world alot differently than most of us since he was a child. I don't know if it was before the H.S. Purpura or not. But yesterday as I sat in another staffing with the group home manager and his case manager talking about "behavioral" health (emphasis on behavior) I wanted to cry. The system is not set up to look into or test for underlying issues. The system is based on a "recovery" model and there's not much wiggle room if you can't "recover" fast enough.
Even though we haven't found a cure for schizophrenia, bipolar or schizoaffective disorder, somehow we've managed to come up with a system that filters and pushes out the weakest patients. All in the name of "recovery" and making sure these persistently disabled folks are living in "community". That's right. The goal is community. Not healing. Not discovery. At least if you are seriously ill and it takes a little longer.
Oh I don't blame the people who work with my son, his group home supervisor is phenomenal. He truly cares about the men in my son's home...even telling me yesterday that he will not give up on S. I know he means it.
No, the problem is systemic. Our state's insurance provider is pressing, wanting to know why S. is not progressing faster. And the solution? Move him to a lower level of supervised care.
You can get away with this if you call it "behavorial" and use nice terms like "recovery". And you can get away with it because most don't really understand, and sad to say, or care about this segment of society. So today, I struggled...
Not because I haven't fought this fight before, I'll write more about the past two years soon, but because I struggle with becoming cynical, angry. So I remember...
"I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
who made heaven and earth." ~ Psalm 121:1
Over and over I remember this...lift up my eyes...to you Lord...
I took my son to get an EKG later in the day. Yes, the state ordered an EKG. They are doing this for all of the patients who are chronically disabled to get a baseline of their hearth rhythm in case of complications down the road from long term medication. The staff at the clinic were very nice, even allowing S. to get in the room early because they could see he was struggling with some anxiety. I thanked God for the mercy in the mess as we waited in the waiting room, S.'s head on my shoulder...they called his name and a kind lady quickly brought us back to a room. The nurse was so gentle with him, explaining the whole process as she placed little tabs of tape on him. Her demeanor calmed him down immediately. She communicated everything I could possibly want to know about why they were doing this, what the results showed, in such a sweet manner that I made sure to thank her for how kind she was.
But I couldn't help but wonder, what if we treated the brain like the heart for these specific illnesses...and you cannot convince me they are not illnesses...what if we had sweet, compassionate care as we tested the brain and made scans for "baselines"? What if a medical model, that truly looked at these illnesses medically...not simply "integrating" medical care (ie., EKG's, flu shots)...but actually tested with the goal towards discovery and healing. What if?
...I lift up my eyes...over and over...to You Lord!
Sometimes this haunts me, today it was more of a nudge. Maybe it's God, maybe not. But I'm sensing the spark to pursue answers again.
Just a few weeks ago as we were eating lunch at one of his favorite Mexican restaurants, S. let me in on an intriguing aspect to how he sees his world. A cup was sitting on the table filled with soda and ice. He began describing something to me and mentioned how the cup with soda changed from dark to light and then back again. I stared at the cup and asked him, "so you see this changing colors?", he replied, "yea, don't you?".
"No, I don't son".
"Really?"
"Do other things change colors for you"? I asked further...
"Well, it's really more like shades. They change shades. Everything does."
"So how long has this been happening?"
He replied, "all my life".
The more he stabilizes, the more these things are slowly coming out. If I had to guess, I believe he has been seeing the world alot differently than most of us since he was a child. I don't know if it was before the H.S. Purpura or not. But yesterday as I sat in another staffing with the group home manager and his case manager talking about "behavioral" health (emphasis on behavior) I wanted to cry. The system is not set up to look into or test for underlying issues. The system is based on a "recovery" model and there's not much wiggle room if you can't "recover" fast enough.
Even though we haven't found a cure for schizophrenia, bipolar or schizoaffective disorder, somehow we've managed to come up with a system that filters and pushes out the weakest patients. All in the name of "recovery" and making sure these persistently disabled folks are living in "community". That's right. The goal is community. Not healing. Not discovery. At least if you are seriously ill and it takes a little longer.
Oh I don't blame the people who work with my son, his group home supervisor is phenomenal. He truly cares about the men in my son's home...even telling me yesterday that he will not give up on S. I know he means it.
No, the problem is systemic. Our state's insurance provider is pressing, wanting to know why S. is not progressing faster. And the solution? Move him to a lower level of supervised care.
You can get away with this if you call it "behavorial" and use nice terms like "recovery". And you can get away with it because most don't really understand, and sad to say, or care about this segment of society. So today, I struggled...
Not because I haven't fought this fight before, I'll write more about the past two years soon, but because I struggle with becoming cynical, angry. So I remember...
"I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
who made heaven and earth." ~ Psalm 121:1
Over and over I remember this...lift up my eyes...to you Lord...
I took my son to get an EKG later in the day. Yes, the state ordered an EKG. They are doing this for all of the patients who are chronically disabled to get a baseline of their hearth rhythm in case of complications down the road from long term medication. The staff at the clinic were very nice, even allowing S. to get in the room early because they could see he was struggling with some anxiety. I thanked God for the mercy in the mess as we waited in the waiting room, S.'s head on my shoulder...they called his name and a kind lady quickly brought us back to a room. The nurse was so gentle with him, explaining the whole process as she placed little tabs of tape on him. Her demeanor calmed him down immediately. She communicated everything I could possibly want to know about why they were doing this, what the results showed, in such a sweet manner that I made sure to thank her for how kind she was.
But I couldn't help but wonder, what if we treated the brain like the heart for these specific illnesses...and you cannot convince me they are not illnesses...what if we had sweet, compassionate care as we tested the brain and made scans for "baselines"? What if a medical model, that truly looked at these illnesses medically...not simply "integrating" medical care (ie., EKG's, flu shots)...but actually tested with the goal towards discovery and healing. What if?
...I lift up my eyes...over and over...to You Lord!
Comments
I didn't know you were still blogging on here. I had to go back and read. I'm way behind.
Love you.