My uncle Colin died erev Rosh Hashana 5 years ago.
He was,as I understand,the world's longest surviving MSA(multi systems atrophy) patient of the train of MSA that he hadi
An extremely physically active man got the horrific diagnosis about 17 years ago.
The journey that started that day was both tragic and amazing.I could write volumes just from my perspective.
Let me leave you with this:
Initially when Colin found out and felt what was happening to him he did not want to be put on a respirator however when the disease had progressed to the stage where he would soon need one,this previously very physically active man now almost totally physically inactive ,changed his mind and chose to live..and live
he did for more than a decade and with the help of his superstar family,especially his wife Shona
In so choosing he merited:
Going to the Kotel with the amazing wish ambulance and being at his son's barmitzvah
Being at another two of his children's weddings
Being at the Bris of a grandson etc
Colin and his family chose...not a life they would have picked but being in it Colin and Shona chose to live..on a different level but living life nevertheless
So much so that I remember during the shiva sitting with my aunt and her reaction to people saying "he is in a better place" was anger and why?
She said that it was an honor and privilege to take care of him
This coming from a woman who took care of my uncle every minute of the day..not sleeping much..not knowing when and if the alarm would go off because of issues with the respirator etc etc
He was,as I understand,the world's longest surviving MSA(multi systems atrophy) patient of the train of MSA that he hadi
An extremely physically active man got the horrific diagnosis about 17 years ago.
The journey that started that day was both tragic and amazing.I could write volumes just from my perspective.
Let me leave you with this:
Initially when Colin found out and felt what was happening to him he did not want to be put on a respirator however when the disease had progressed to the stage where he would soon need one,this previously very physically active man now almost totally physically inactive ,changed his mind and chose to live..and live
he did for more than a decade and with the help of his superstar family,especially his wife Shona
In so choosing he merited:
Going to the Kotel with the amazing wish ambulance and being at his son's barmitzvah
Being at another two of his children's weddings
Being at the Bris of a grandson etc
Colin and his family chose...not a life they would have picked but being in it Colin and Shona chose to live..on a different level but living life nevertheless
So much so that I remember during the shiva sitting with my aunt and her reaction to people saying "he is in a better place" was anger and why?
She said that it was an honor and privilege to take care of him
This coming from a woman who took care of my uncle every minute of the day..not sleeping much..not knowing when and if the alarm would go off because of issues with the respirator etc etc
Clearly our essence is not our bodies and when we get that we can find a way to live and grab on to life and still find some blessing and see the gift
My beautiful amazing family who went through hell and still found some Heaven ..continues to inspire
May Hashem grant that Colin's holy soul know constant aliyot
My beautiful amazing family who went through hell and still found some Heaven ..continues to inspire
May Hashem grant that Colin's holy soul know constant aliyot
