Recently when I look into the mirror I do not often recognize the
person reflecting back at me.
Not in an actual I don’t know who I am
kinda way, but an unfamiliar way. I feel disconnected from myself in many ways,
and like I am no longer who I thought I was kinda way.
When you imagine yourself, you get a
mental image of yourself...and when I catch a glimpse of myself in a reflective
surface I am often surprised who is looking back.
The Barren and I attended a cousins
wedding on New Year’s Eve, it was lovely and romantic and the first time in a
LOOOOOOONG time that we have had plans on new year’s. The newlyweds are soo
deeply in love and it was a beautiful thing to witness. At one point I said to
myself, this is happiness, this is joy that you are feeling...it felt so
different I had to assess it in myself.
My parents and brother didn't go; my
parents because they said it was too much fuss, and my brother because it was a
kid free event and he didn't want to leave his home alone on new year’s eve. So
the Barren and I dressed up and went and every person I saw asked about my
parents and why they were not there. It was hard. I was trying to treat the
night as my vacation, my get away for 24hrs. I told that to The Barren and he
then understood that I haven’t had the chance to getaway...from anything! So as
he watched person after person ask about my parents he saw me. We took photos
of ourselves dressed up and smiling, the rain that night made for a chilly
covered outdoor wedding and the music was insanely loud, so loud I had a sore
throat from screaming all night to talk to anyone. As we left, before midnight,
we relished in the quiet of the car and the sound of rain on the windscreen.
It is a strange time we are living in, and
being here in the states makes it even more surreal by each hour. I am
heartbroken and exhausted and constantly worried about something or another. I
am trying to practice radical acts of joy and find things in the day that I can
celebrate. I feel lonely and sad a lot more of the time, and despite my activities,
I am often solo as the weeks pass. Sometimes I like the time of solitude and quiet,
often times it weighs heavy on me and I feel invisible until I am pulled from
beneath my cloak...
Example: I was followed in the market
yesterday by a man that wanted to tell me how he liked my hair, and admired
that I was "letting it go"...he had followed me through to store to
tell me this and I am sure if I had said anything other than "um,
thanks" he would have continued to engage in some other unpredictable way.
I was left looking for ways to be in a more people dense area, making sure I
wasn't alone, feeling angry that this creepy guy "approved" of the
way I was presenting myself. I texted The Barren and told him I felt super icky
from the encounter... and I was really angry. This was only a few days after a
man murdered a woman in her own car, and the nation saw. Men are unpredictable
and scary.
I am on edge, we all are.
For me, this week had beat me up pretty
impressively.
I am involved with my parents and their
medical appointments. Once again, I waited to be invited and asked to assist, permission
is an important part of trust.
Last week was a lumbar puncture and then
this week a meeting about the results with a new neurologist for my father. He
had become more confused as of late and the MRI showed fluid on his brain, so
that was drawn and the new doctor met with us on Tuesday. He was late, and apologized
about that...my father was clearly freaked out because he didn't act out about
the wait (they were late for his lumbar puncture too and he was
repeatedly slamming his walking stick on the ground in a Gandalf "you
shall not pass" kinda way. I had to talk to him like a toddler in the
common waiting area explaining how it was disrespectful and how there were
others ahead of him), but was quiet on the exam table. My mother was quiet
too but angry (about her whole world being turned inside out) next to me...fear
presents itself differently in us all.
The doctor took his time and explained the
reason for the lumbar draw, the results of the MRI and what he saw on the
spinal fluid draw...and then ordered a blood test (a new one, for Alzheimer’s
markers) we talked about gait changes in my father’s walking and
concerns about his developing confusion and the talk was a mix of science terms
and clear phrases which I followed along with but my parents were clearly
overwhelmed by, so I am glad I was there to be the "decoder ring" for
them. Afterwards my mother kept saying "you were really good" in that
I understood and asked questions as they arose with the doctor. Neither ot them
do that.
I was masking well, really well...because
what they didn’t know was that I was battling some serious abdominal pain from
what I thought was a flare..I had taken liquid antacids down the street from
their home...and I was horribly uncomfortable. I had awoken with the pains and soldiered
on to make work that morning in town before picking them up and shuttling them
to and from the appointment. After the appointment I left their home and was
ready to release the emotions of the day when I passed my sister in law on her
walk around the neighborhood, I buttoned it up and spent the next hour chatting
with her before heading back towards home an hour away.
I didn't get to cry, I was too tired.
I was greeted by The Barren, who had a bad
day and I told him, I was just gonna have a thin miso soup for dinner and
proceeded to make my dinner. After sipping the soup, I collapsed on his lap on
the couch and fell asleep.
I am exhausted and emotionally drained, I
feel like I am walking around in a cloud. Not really here or there. There has
been so much grief in my body for the last two years.
Yesterday afternoon, I told The Barren
that as much as I would like to ignore that I have an autoimmune disease, I am
getting punched in the face by it over and over demanding attention. I think I
am grieving, not just the state of the world, but my body, my family, and my
dreams for myself and my life. It is so frustrating to have ideas and desires
to do things, but have less than enough energy to do them. To see them so
close, but be unable to maintain the stamina to see them through. I am trying
to be graceful with myself, but it is becoming harder and harder and I wonder
"who is this?"
My own doctors meetings start tomorrow to
talk about my latest results.
Ideally I can have a good cry soon, like a palate cleanser
A friend mentioned this writing prompt and I found it timely
*Keep your chin up buttercup*
