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 only know me from the ass up,”
she said once, while I was taking care of her business end
by the unexpected thrust 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 while on a journey not wished for, and on a road no one should take, that her body had become irrelevant. Her body was not, and was never, what made her who she was.
It was her mind, her thoughts that made her Milly Hannah, not her legs or arms or any of the body’s wonderful parts. Yes, she missed using them terribly, but they were useless to her now. Her body was just a lump of flesh, nothing but a lump of matter.
Mind over matter, she said.
It took many years for her to come to this truth, but it also came with joyous realization. It was the turning point in her acceptance.
I wish I could have been as courageous and dignified as her while she, we, struggled. We had lived as comfortable strangers before she became sick. While she lived with her illness we were given 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 with each other, and perhaps, I wouldn’t trade it, even at the cost of losing her. I do know, however, 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 I, sadly, 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, although now I know she was not fine, far from it. She was doing what she always did, trying to make everyone else feel OK and telling us it was OK to get some sleep. I never thought for a moment she would die that night, I convinced myself each new day that came Mom would still be there. I wish she had told me, “NO, don’t leave me.” She told us she was scared to go into the home, scared to be alone when she died. I often wonder if she made sure she didn’t go to that home, I wonder because she died the night before she was to go.
Like Mom said, I have so many regrets. I wish I had put her above everything in my life at that time.
It was not up to me whether she went into the care facility, it was up to Mom and Dad. And Dad had come to the end of his ability, and the end of his energy to care for her at home. He had done everything he could, he had cared for her with everything he had, but ALS is a cruel disease, and eventually even the most caring partners have to say, “I’m sorry but I just cannot care for you as well as you need.” By the time Mom had lost all use of core and extremity muscles Dad had slings put up in the bedroom and living room. These were put in place to get Mom out of bed, into her wheelchair, and out of her wheelchair, and into the living room chair. He did this so he could care for Mom and keep her with him. But love sometimes just isn’t enough, and finally they had to give in. Knowing it had to happen didn’t make it easier for Mom or Dad. I cannot imagine the resignation and sadness Dad felt at having to make that decision and I cannot imagine the fear and sadness ravaging Mom as the disease took away so much. To lose so much of her ability to be independent and then to have, in essence, her home and her husband taken away from her, well I cannot imagine the depths of that pain. I pray I never will. For my part I did spend time with her, but not enough. I went twice a week, and on weekends, but I wonder now, with a heavy heart, what would have been, if I had been more help. Dad did everything he could, but ALS does not care.
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 by learning to understand the old of yesterday was never is important as today and tomorrow.
My Mom and our family’s ALS journey is over now, but I have a deepened love for her that I am privileged to carry for the rest of my life. But for those of you who now walk along ALS’ path my prayers are with you so completely. For those families who have just had ALS turn your lives upside down… Yes, it is one of the hardest uphill paths you’ll ever climb in life, but please remember-therein lies a promise… It is one of the hardest paths- in life. ALS is about living, not dying. And as you live within this new life know I am praying that you will find the laughter and joyful little moments that Mom and I found, not on the outside of ALS, but right smack dab in its midst.
And now, a little gift of words for you to tuck away for the hard days.
After my Mom died, my daughter Ashley, quite young at the time, made me a gift box with a quote on the top. The quote is by Helen Keller, a woman who knew rough waters and rocky paths. She wrote,
“I am not afraid of storms, for I am learning to sail my ship.”
Thank you my daughter, you are learning life’s lessons much quicker than I. Nanny would be proud.