“You should
always treat people with kindness”
-My dad on
how to treat others
Life is a
lot of things. Fair is not usually one
of its defining characteristics. My
father has been ill for a long time. He
struggles with an intense muscle degenerating disease that is very unknown in
both society and the medical world called Inclusion Body Mitosis (IBM). Yesterday he informed me that he has put a
hospital bed in his room and it hit me. Not
the realization he is dying, we are all dying, he has been sick for over 15
years I have had time to come to terms with the reality of the end of his
life. But, that everything is different
now. What I mean is for the first time
in my life my mother and father will be sleeping in separate beds. Then I realized that once he has passed my
mother will sell the house, I can’t imagine that she will keep a spacious five
bedroom place for her and her mother (my grandmother lives with my
parents). I am experiencing that strange
phenomena of losing home. It is a very
difficult thing to process. Home is
always your safe haven isn’t it? It is
the place you retire to when you can’t handle the turbulence of life, it is
where you go for holidays, it is your home.
But, one day you wake up and this changes. The following are three emotions that I am
feeling lately, maybe you can relate:
“That is
just the way the world is.”
-My dad on
the futility of questioning why things happen
1) Unknown. It is the strangest feeling not knowing how
to feel. Feeling happy about some
aspects of life and then plagued again with stress and worry for your loved
ones. It is a wild roller coaster when
you feel yourself laughing at a joke only to shortly feel guilty for feeling
happy. You feel highs that feel hallow
and lows that feel surreal and all the while you realize that you are helpless
to your emotions. They are processing
the information you have given them the best way they know how. This is my rollercoaster.
“I am lucky. Your mother takes good care of me.”
-My dad on the topic of my mom
2) Guilt.
I have guilt that on some days I think
my dad is in so much pain that death would be a relief to him. To my mother who cries all the time. To my sister who stays in SmallTownNowhere to
help. To my elderly grandmother who
tries to help in any way she can. To
myself for having my heart stop every time I hear a new level of disintegration
in his disease. To my friends who can
only watch and struggle with what support to offer. To my hometown as the residence watch and
wonder what will come next. To everyone
who is affected by strange, unknown, cruel diseases I feel your guilt. I feel guilt for not being able to offer
support in a way that will cure all that ails my family. I feel guilty for being young, vibrant and
healthy and wanting to see my dad as he once was. I feel angry and I feel guilty and I feel
sad, these are my emotions.
“You have got your university education. No matter what happens in life, no one can
take that from you.”
-My dad when I graduated
3) Retreat. There is a strong desire to fix what is
broken isn’t there? There is an
overwhelming sense that if one returns home that it will remain frozen in time
in that perfect Christmas morning memory.
There is a hope that your mere presence and wishful thinking will stop
time and cure disease. I feel an
incredibly difficult sensation that living away from my family is the right thing. It is a hard realization that living your
life where you need to be is away from those who need you. It is a devastating actuality to recognize
that if you go back and live in the same house and town as your family it does
nothing. It does not stop time. In fact it is a particularly hard thing to
swallow that everyone is better and happier if you keep living your life,
building you career, trying for each day instead of retreating back home. This is my struggle.
“Oh lord it’s hard to be humble. When your prefect in every way.”
-My dad singing what I am pretty sure
is his life motto.
The truth is people tell me all the
time I am so lucky to have more time with my dad and this is true. Unfortunately this time is filled with pain,
struggle, and heart ache, this is also true.
There is a numbness that washes over me most of the time, a warm
comforting sensation where I can hide from the reality of feelings. It is so nice to hide isn’t it? Feelings give way to talking, talking gives
way to hugging, hugging gives way to crying, and crying leads to breaking. But hiding does not help heal pain. Disease is part of life and I will not
remember my father this way, I can’t. I
will always remember him sun kissed with long strawberry blond hair strong and
brilliant fixing the lawn mower in the back yard. I will remember his kindness, I will remember
his will to fight, while this disease may take his body, it will never take my mind. Thanks for listening this week
to my restless demons. XO
“Twas midnight on the ocean,
Not a street car was in sight.
The moon was shining brightly,
Because there was no sun that night.
The two dead boys got up to fight.
Back to back they faced each other,
Drew their swords and shot one
another.
A deaf police man heard that noise,
He ran and shot those two dead boys.”
-My dad’s riddle.
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