Let me explain…
It was brought to my attention the other day by a very dear
loving friend that maybe I might be “misunderstood.” She said that I might want
to seem a bit more “grateful.” I asked her what she meant by that. She said
that not everyone with ALS has caregivers and that I should act more gracious.
She said that she knew our circle of friends understood my humor but that maybe
strangers don’t. Maybe I have some explaining to do. After getting over the initial shock of what she said to me, I thought maybe there was a teeny tiny itty bitty chance that she might be right.
Let me start by saying that I wish I didn’t have caregivers.
I don’t want them. I wish I could wake up in the morning, place my feet on the
ground, stand up and walk to the kitchen and make my own coffee. Something as
simple as that would bring me the greatest joy. Trust me, I don’t think it’s
great that I have someone wait on me. This is not living in luxury. It is hell
on earth. I would love to do everything for myself. I hate “having caregivers.”
I hate needing to have caregivers.
She also told me that most people with ALS have their family caring for them. I
would love that. I would love to have my mother, father and sister help out. I
would love to have my sister here making me laugh. I would love to have my
mother here making my favorite cucumber sandwich just the way I like it. I
would love to have my mother here decorating and rearranging all of my picture
frames. I would love to have my father here to enjoy a glass of wine with. I
would love to have my brother here, rest his soul, carrying me in his big
strong arms. But they are not here. My true family consists of my husband and
my 18-year-old daughter. My husband has to work in order to pay for our lives,
obviously. My daughter goes to college. It is not feasible that they take care
of me. Therefore, I have to have caregivers.
I love and hate my caregivers. Unless you are in a position
where you have been completely dependent physically on another person I’m not
sure you can understand what I’m talking about. For example, I have spent the
last 44 years doing things my way. We all have. You create your own habits,
your own patterns, your own way of doing things. I had to give all of that up.
Geez, just now by writing that, I just teared up. I guess I’ve never really
said it out loud. I had to give everything up. I had to give up all of my
control. Someone else brushes my teeth their way. Someone else washes my hair
their way. Someone else does my makeup their way. Someone else even wipes me
their way. Front to back! Front to back! That is somehow lost in translation.
Maybe people do not understand that I cannot do anything for myself anymore.
You start to resent the people that help you, however, I understand it’s not
their fault.
So yes, I am “grateful” that I have a caregiver but it is
not by choice. I always laugh when I think about what I would do if I had my
health back. Do you know what I would do? The first thing I would do would be
fire all the caregivers, get in a car by myself and drive and drive and drive
and listen to the loudest music and sing at the top of my lungs ALONE. I just want to be alone. Imagine
if you can never again be alone. I can’t be left alone for even five minutes.
My breathing machine could fail, I might choke, my legs might become numb, I
might stop breathing, etc. etc. etc. I am scared all day long that this might
be my last day. My caregivers are here to prevent that but I feel like a
helpless stupid blob and I choose to take it out on them. Just kidding.
Grateful? Yes. Ungrateful? Yes. Yes to both. I hope everyone
understands."Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.”
A.A. Milne, Winnie-the-Pooh
