Letter/Full disclosure/My Dad

My post about having my life enriched by disability was sent to family and friends alike.

This was the response I received from a person in my life:

 Bravo Johanna! 

The ways in which you have learned to see beyond the limitations of our conventional perceptions of ‘disability’ are truly admirable. How fortunate for dear Phoenix that she will grow her life under your loving guidance.
May I respectfully suggest that you extend your understanding of the disability bias to embrace your father in a circle of support for the challenges that confront him each and every day? As you have come to realize, through the gift of your own daughter, all lives hold value. Surely this truth applies to your dad as well. And I’m inclined to believe that, in his own way, he too would prefer to be surrounded by family to the end of his days.

Fondly,

Name

My response:  I wish I knew how to do that Name.  Their response:

Well, I’m hardly one to be telling others how to live their lives. And as we both know, little in life is guaranteed. But for what they’re worth, a few thoughts come to mind:

- replacing Phoenix with your dad, care-fully re-read what you wrote for The Mighty and see what sentiments and insights also apply to him.

- open your mind and heart to accepting him as he is, just as you have with Phoenix, and try to see beyond his disabilities. 

- be prepared to go the extra mile and make sacrifices on his behalf, just as you have and will with Phoenix.

- if you believe what you wrote, that all lives hold value, surely there’s room for your father in that belief.

- where there’s a will there’s a way.

That’s about as far as I wish to go into this matter, Johanna. Whatever does or doesn’t happen is up to you guys, the Name family all together. 

This is a lot to think about. You can find some past information about my Dad here. He's been living in a long term care facility since his release from the hospital. I've been unsuccessful in being able to bring my father here to Alberta, although we don't know if he is even able to be moved to another province. He could not fly on a commercial airline. He would need a medical flight to be transported.

My feelings about my Dad are complicated and are strongly influenced by his own thoughts and feelings which were vehemently expressed before his strokes.

Some readers may remember the story of Terri Schiavo. Her court case was the spark which initiated many conversations by my father about how he wanted his end of life to look like. He was very, very clear about his wishes. He did not want to be kept alive by machines. He did not want to for his body to be kept alive once his mind was gone. He didn't want it.

That's not my judgement. It was his. And I respected his autonomy to make that determination for himself. He even went so far as to have a living will drawn up to assert his wishes. He was just so clear on the matter. My father has almost all his needs met for him. I won't go into detail about all the way other people maintain his life, I feel very confident, knowing everything I know about my father, that he would not want to live this way. He would rather be dead. Again, this is not my judgement. These are words he said himself, on many occasions, and tried to ensure through the legal means available at the time.

The fact that myself, my mother and my sister are all in agreement about this solidifies for me that this is not me projecting my beliefs and biases. These were his, which he was entitled to.

The fact remains that his body is essentially healthy. But his mind; his mind has been damaged beyond anything that is recognizable to us. He doesn't know me. He doesn't know my mom. He acknowledges our presence when we are able to visit, but not that I once was a significant person in his life, his daughter.

And so I am sad. We all are sad. He's lost so much. Before his strokes he was a vibrant and charming 70 year old you ran his own business. He cooked dinner for my mother. He followed British football and he enjoyed wine in the evening with my mother. And beyond what we have lost of him, what makes us sad is that this is his nightmare scenario. His worst fear come true.

Going back to what was written.

- open your mind and heart to accepting him as he is, just as you have with Phoenix, and try to see beyond his disabilities. 

I believe I do see him as he is. I accept him as he is. I love him with or without his disabilities.

- be prepared to go the extra mile and make sacrifices on his behalf, just as you have and will with Phoenix.

I have tried. I have tried. The effort mattered and I'm so glad I tried, but it didn't change anything in the end.

- if you believe what you wrote, that all lives hold value, surely there’s room for your father in that belief.

Yes, his life absolutely holds value. That has never been in dispute.

- where there’s a will there’s a way.

What does this mean? Does it mean that I can in fact force the provincial government to take him? Please, please show me how, I beg of you.  Does it mean I can move to Ontario? Maybe, but it's unlikely I would be able to find a comparable teaching position. I definitely cannot replace the supports I have here for Phoenix, and it would involve a lot of time and effort to transfer Mike's rehab and stroke after-care to another province. That is IF we could sell our house, IF we could afford a house in driving distance to Toronto and IF I could find a teaching position to support our family.

So many IF's. Too many to count really. Do I believe that my Dad would want to be surrounded by friends and family? Yes, OF COURSE. I just cannot make that happen. I cannot force our brother, my fathers son, to visit him even though he lives in the same city as our Dad. I cannot force you to go see him. I cannot make his friends go or other relatives to go. I have to rely on the feedback of the care staff, just as my mother does.

There is probably more that could be said, but I think that is enough for tonight.

Thank you for your letter Name.

Johanna