once ready to do their mistress' will
Rebellion started in her core
the center of her being
not the center most essential
but the seat of all control
She had lost all control
“What do you have to be mad about,
I’m not mad, you shouldn't be"
I know Mom
the chair arrived
fourteen thousand dollars worth of fucking chair
she hated it
lamplighter it was, screaming
She screamed back
dead to her
(mind over matter, she would say)
gave rise to humour
I never saw that before
Church ladies came and went
Different one each day
“The church will know me only from the ass up”
she said once while I was taking care of her business end
by the unexpected punch of humour
we laughed we giggled
I adjusted her mask
We laughed some more
“I don’t want to go to the home”
I know Mom
“I don’t want to die alone”
I know Mom
Still, she’s with me
mind over matter
Written by me, Colleen Hannah for my Mom
with and from
My Mom, Milly Hannah, discovered one day, after a journey not wished for, and a road no one should take, that her body really didn't matter.
Mind over matter she said.
This truth was found after many tears, but also came with a joyous realization. It was the turning point in her acceptance.
I wish I could have been as courageous and dignified while taking the journey with her. We had lived as comfortable strangers before she became sick. Her illness gave us an amazing opportunity to understand each other. Laughter became common place, as did the tears. I wish our new relationship had not come at so high a cost. I thought long and hard about one thing... if I could turn back time, make it so ALS had never touched our family, and therefore, go back to the old relationship we had, would I? I cannot say, I do not have that power. But I do know that I would never trade the newly formed bond we found within each other and perhaps I wouldn't trade it, even at the cost of losing her. I know that if she could tell me, she would say, she would never trade the knowledge of the greater love around her.
I encourage those taking this same journey with their loved ones to relax into their relationships, and find someway to learn to love unconditionally. Some may believe that unconditional love is a cliché. It is not. Because time is a gift, and although ALS steals time, it also gives us enough of it to learn to relax into the moments we are given. ALS also gives us precious time to tell each other those things that other people, who have lost their loved ones too quickly, wish they could have said.
I encourage those of you facing the trial of ALS not to waste the time you have, because even though I had almost five years to say goodbye, I never really thought I would lose my Mom, therefore I wasted time thinking there would always be another day to say the things left unsaid.
Mom also used to say, "Don't live today in a way that will cause regrets tomorrow." She would tell me, "If you don't spend time with me you will regret it after I am gone."
So often I would think (and I am being very honest) I would think, she is just saying that to get me to come over and see her. Yes! She was. Of course she was, because she knew when I didn't use those times to see her I would regret it later. And I have, deeply. I regret everyday I didn't go. I was scared to get too close, I knew it would hurt more when she was gone. How very selfish of me. I could have stayed with her the night she died alone in hospital, but I didn't. It wasn't out of selfishness. She said she was fine, now I know she wasn't and was only trying to make me feel OK about leaving. I just didn't think she would die, I convinced myself each new day that came Mom would still be there. I wish she had told me, "NO, don't leave me." But it was for me to know she was scared, but I was tired and thought tomorrow would be there. I took it, and I guess her, for granted. But now I would take the hurt of losing her a thousand times more if it meant I could have more time.
Below are words I wish I had said, and lived, when Mom was alive. Instead of wasting time worrying about losing her I ended up losing her long before she was gone... if only I had said...
"I love you with all my heart, I will miss you, but we have today."
There is so much to celebrate though, it was, and is, not all regrets. I learned to love her fiercely and she me in return. I believe we achieved that love by letting go of past hurts and understanding the old of yesterday was never as important as today and tomorrow.
Prayers for those who walk one of the hardest paths in life and prayers to those just starting it. But therein lies the promise... It is one of the hardest paths- in life. And as you live this new life I am praying that you will find the laughter and joyful little moments that Mom and I found in the midst of ALS.
(more editing needed, will fix up soon.)