It has been quite a while since I published anything related to the original purpose of this blog: exploration of my relationship between my older brother and me – my connection with autism. I began this blog to describe the impact of having an autistic brother, who is nonverbal and low functioning. (I’ve been away from generating posts of this sort for so long, that I can’t seem to use the ‘new’ WordPress browser to add hyperlinks, etc., so if you are interested in background about Mike, my family and me, please refer to my posts from 2013-2014).
Michael is my older brother. He was born in 1949, before autism became a household word, before autism was known much at all. Mike has never spoken, and doesn’t interact much with others. To this day, I don’t know if he knows that I am his brother. He was at home for the first 10 years of my life and then he went to Willowbrook on Staten Island, NY, a very large mental institution (6000 patients). Willowbrook’s abuse of its charges was exposed in the 1970s and Mike was eventually relocated to a group home. (There is an agency in NY State that is in charge of safeguarding the ‘Willowbrook Class’ of patients; Mike is a member of this class.) Mike was given good care in the group homes where he resided; many times, the staff called emergency services for problems they could not handle.
About a year ago, Mike had a serious issue that put him in the hospital. The bottom like is, Mike has been on a ventilator for more than a year. He has a tracheotomy for the breathing tube and an implanted feeding tube. My younger brother and I have been regularly interacting with his care team, following his progress.
During our last interaction (a few weeks ago), discussing Mike’s treatment plan with the team of his care givers, the respiratory therapist revealed that Mike cannot survive removal from the ventilator.
The staff included Mike on the call so that my younger brother and I could talk to him. We did not notice any reaction to our voices. I captured a screen shot of my older brother as he lay in his bed. Pictured below is my sketch of this photo. It is very disturbing to me. I am just beginning to process my feelings.
I’m so sorry Jack. This is the most difficult space to navigate between life and death, especially when there is no way of knowing what his wishes would be. Sending my best. (K)
Thanks, Kerfe. The odd thing is I never knew any of his wishes at any time in his life (except when he wanted food). I have to think that his inwardness is an advantage to him at this point in his life.
Best to you too.
Very sorry to hear this, Jack.
I’m sorry to hear this. I am feeling for you.
Thanks very much, Claudia.
Such a sad situation. I am glad you have found sketching to help you sort out and process your emotions.
Thanks, Shoes. I hope it is a way to sort it….