Ilene is in her last days of living with her body. Knowing that she has chosen not to have any kind of medical assistance to maintain her life (e.g., feeding tubes), I was curious as to the current state of her mind, body and spirit.

What is the state of your body now?

My body is losing muscle function daily.  I have no control over feet, legs, hips, and lower torso.  I have much reduced upper body, arm and hand strength.  I can no longer lift arms enough to style my hair or turn on and off a light switch.  I can barely lift a glass in a restaurant and need a straw.  We use very light-weight plastic at home.  My typing and writing are compromised.  Because my tongue is losing strength, (did you know your tongue is a muscle?)  chewing, swallowing and speech are all difficult.  For the 1st time in my adult life I am asking others to make phone calls for me.

I still feel my body. To not be able to move it when I have feeling is very frustrating.  It is beginning to feel like my mind is trapped in a body that doesn’t respond.  My husband and cousin, my 24/7 caregivers make me feel loved and precious.  They pick up where my body leaves off.  I don’t know where I’d be without them

What is the state of your mind and spirit now? 

My mind is sharp and alert as ever.  It is strange to watch how I get treated differently because of my slow, labored speech.  I understand this and my quicksilver mind watches it sometimes with interest, sometimes with frustration.  I find myself writing more as a way to express myself and keep my intellect stimulated and my identity strong.  I think a lot about what is important and what needs my attention for me to be as complete as possible.

My spirit is strong and soaring.  I am clear. I am focused. And at the same time, I am more soft and accepting.  I am more present than before and find it easier to let go of the past and the future.  I believe in a part of me that transcends this body. I try to connect with it and look through her eyes.

What is the relationship between mind, body and spirit now? 

My body is a container that no longer dominates or directs.  I work in my mind to love and be accepting of it.  My mind is strong and active and struggles to understand the soul and the conscious psyche and to balance these two.  I walk a line where I try to look through my soul’s eyes but find I am limited by still being in a body and physical form.  I do daily meditative activities to bring peace between my mind, body and spirit. My spirit soars, is compassionate and patient knowing that it must cooperate with my mind and body.  I wrote a poem that expresses the dance between mind and spirit called “Dying to Know.”