Patient Perspective

You Walk Away? | A Poem from an MSA Patient

By Teresa Baker

I write a great deal of poetry in order to express feelings, ideas, and opinions which come from someplace deep inside which cannot be easily explained; but I also think and express myself using abstract ideas which come through better using poetry.

I have heard many people with the various diagnoses of Parkinsonism talk about their painful feelings of abandonment when friends walk away after hearing and seeing what happens when someone has developed one of these diseases, and even worse, when some or all family members walk away, or refuse to accept the seriousness of the disease. An example would be one of my grandchildren who has decided if I can laugh then it means everything is going to be fine; yet she will have nothing to do with me.

In writing this poem, I am attempting to tell family and friends that having such a disease as MSA is painful enough, but when loved ones turn away the pain is much worse. No one likes feeling abandoned, but under these circumstances, support is so very important. So many people express this pain, but it seems to go nowhere. I am hoping someone benefits from loved ones hearing and responding to the sound of a voice crying out, “please don’t turn away, I need you.” I use a lot of humor to encourage others, but I experience the same pain as everyone else because members of my family also have turned away.

You Walk Away?

Forget your own embarrassment,
your lack of understanding;
never mind your own discomfort
and how it makes you feel;
think how little you can possibly know,
even if you’ve read the facts,
you cannot how real this beast.

Look into their frightened eyes
as they try to regain control
of a body no longer cooperative;
of a body moving without purpose
no matter how hard they try.
Have you no compassion
for a person once your friend,
someone from your family?

Must you walk away from this
as if you were the very victim
suffering what you don’t want to see
while someone needing comfort and love
is left alone without your company
at a time when growing in their need
for one who once declared them as a friend?

Will you leave them lost and on their own
rather than try to help them through
the raging crisis of a brain
raining down an agony
which is frightening to you,
who cannot fathom how deep the depths of terror
MSA puts a person through?
The shame this brings to someone
is falling not upon the other;
it’s falling now on you.