Sometimes I hate my invisible disorders. That's when I feel like there's a volcano of
emotion erupting inside of me. An
explosion. I hate how hard some things
are, I hate that Ron and Leena and Cara have to live with it, these disorders
that are now part of me. I hate what I
miss out on. I hate that even if I'm
doing something, it's not how it used to be.
I have to think about certain things on a conscious level now, and it's gets
exhausting.
Parties just aren't supposed to be so much work. I've learned that 17 people, nearly twice
what Thanksgiving was for me, is too many people for me to be able to
participate in conversations. Too many
conversations going on at once, too much to process. I just can't do it right now. I was touched when a cousin told me she'd
read my blog, but realized she didn't quite get it when she showed me something
her daughter had written. I handed it
back to her, and I'm not sure she heard my words as I gave it back. I can't read a full page of words. I'm certainly not going to try reading
anything on a page at a party when my system is working on so many levels.
Bodies can be so goddamn weird. I know my team of professionals wouldn't say
it's weird, but it FEELS weird and confusing and complicated. Menorahs are beautiful, and if I remember to
"look soft" I can look at it, but not for too long. The candles dance, which is cool, but makes
them hard to look at. That's how it is
for me. I'm glad I could settle down to
get to sleep the night of the party. The
fatigue I feel is immense, not so much physical as mental. It's like my brain just shuts down, refuses
to process any more information, even just one little bit. I'm glad that I know I can recover, and I
know I need to let myself feel the frustration, but I hate it. I hate that I can't tell my nervous system to
just do what I want it to. Well, I can
but it won't work.
I wonder how much therapy I'll have to do. I wonder how long, how much work it will take
for my current reality to slowly morph into something that feels acceptable to
me... I know that no one knows the answer.....
"It's a beautiful world and I can't see
it" - that's how I feel at times - as
if it's a wonderful world, but it's out of my reach, and I can't live it the
way I want to now....experiencing some parts of it is beyond me.... so what did
I do while feeling all this anger, frustration and sadness? What did I do with myself while I was in this
hole, to heal myself, pull myself out.
I wrote in my journal....I can let the words
spilI out any which way because no one else will read them. I played my flute, letting the music burst,
fly out of me. Then I played from
memory, "Where is my light?" a song from our congregation -
"Where is my light, my light is in me,
where is my hope, my hope is in me,
where is my strength, my strength is in me,
and in you, and in you...".
This song is a favorite of my rabbi, and some
people may tire of it, but it's a lovely melody, and the words, when I really
think about them, move me. My light, my
hope and my strength - I really need to draw on all of that when I'm
struggling. But I like that the last
part is about being connected, that I/we need others to help us.
Then I let my music tumble out
again....then I went on Facebook. I
messaged a couple friends. I had a
lovely surprise when a friend who was in the neighborhood dropped by
unexpectedly, so I took my afternoon walk with Cosmo with her. Doing this on a day when I'm not fully rested
was a stretch, but it was worth it.
Then I watched some videos that were posted which really fit my mood of
needing to try to find a better perspective, remind myself of what I can
do...focusing on the positive is extraordinarily hard to DO sometimes.... but I
have to keep moving, because staying stuck is a really bad option.
So I wipe away the tears, take many deep breaths, and
life goes on.....I thought about whether or not to post this, and obviously I
decided to share it. I remind myself when
I'm feeling jealous of those who LOOK fine, that they may have their own
invisible struggles. I think about
people who really don't have major problems at the moment, and hopefully one or
two of them will read this and be reminded to be grateful for what they have,
and compassionate to those less fortunate.
I recently read a beautifully written, very honest blog by a young woman
battling with Depression. As I listened,
I thought about how people don't understand invisible disorders unless those of
us living with them share the moments when we struggle, and then manage to pull
ourselves forward.
