If someone had told me in
March of 2010 that in five years I'd be dealing with invisible neurological
disorders, I'm really not sure what my reaction would have been. And yet here I am. A good friend of mine is now working full
time. My daughters are growing up. Under "normal" circumstances I'd
have been thinking about what I would do with myself, planning or putting plans
into action. Before I got sick I was giving
private flute lessons. I haven't figured
out yet if it's realistic for me to picture myself doing that again
someday. I do hope to play with other
musicians again, but I still need to make a lot of progress before that's a
reality for me. When I saw my GP recently
for my annual checkup, she asked me what my goals were, and I thought how
they're the same as they've been since I started therapy - keep working on
making progress.
Sometimes the fact that my
life did not go according to plan hits hard.
I feel like I am constantly making choices, only not the kind I thought
I'd be making. Like when I think about a
family Bar Mitzvah celebration coming up, and have to make the choice of what I
participate in. I'm going to attend the
service, but not the party. I hate
that. I hate that I have to miss out on
the part when family connects. It just
sucks, and there's really no way around it.
I also know that I have to admit to myself how I feel because otherwise
I'm shutting down feelings, and that's not healthy. I gave a lot of thought to going to the
party, but in the end I realize that when I have to think about something THAT
much, when there's that much to deal with, it's just not going to work. My challenges, simply put, limit me, and as
much as I want to hold onto a positive attitude, sometimes it's really
difficult.
I recently went to the
high school theatrical production of Once Upon a Mattress. Yes, I'm glad I went, but I hate that it's
still hard to do something like that.
And I was exhausted by the end of it.
I wanted to attend a Sunday School meeting the next morning, but the
thought of going anywhere (other than a walk later that day) made me realize it
wasn't in the cards for me. So I didn't
go. The hardest moment for me is not when
I decide I can't do something, though I definitely don't like that part. It's when I tell somebody, because once
someone else knows my decision I really have to own it, and it's hard. So I have to sit, and feel the sadness and
frustration. It hangs over me like a
gray cloud, making me irritable and angry.
And I have to just let myself be that way for a while, before I can move
on.
I realize I'm still alive,
and in some ways healthy. I'm not
battling cancer, there are some things in my body that work well - my heart, my
lungs, even some things about my nervous system. But there's that nagging "but"
about my health. I wrote recently about
feeling like I repeat myself in my writing, but that there is a purpose to the
repetition. I need to repeat in order to
raise awareness, so that people begin to understand. Actually, I feel like I repeat myself in my
own thought process. Telling myself to
look at the positive, telling myself not to get hung up on the negative, trying
to give my brain something to focus on so that I don't, when I am doing nothing,
go down the wrong road of thought - the negative, anxious, crappy road. It's a constant balancing act (pardon the
pun) of not denying the lousy stuff, but not getting stuck in all of that
either, and not holding onto my bad moods.
I think about my balancing
act a lot. And about when I want to try
to push a bit. Pushing, challenging
myself can be scary, but then I think about how I'll feel if I don't try. For example, I'm not going to the Bar Mitzvah
party, but I'm hoping to be up to going to a brunch (held in a house the next
day) for out of town guests, that the host graciously invited me to attend. Thirty people is still a lot for me, but I
can wrap my head around this as a possible challenge as opposed to a party
attended by 180 people. And then I
think, OK, here I go again... thinking about how to find the good vs. the suckish
aspects of my life.... I don't know if it's human nature to go back and forth
like an emotional yo-yo, but I suspect it's common for people dealing with
daily challenges. I think the yo-yo
thing makes sense for me; some days, some moments have less challenges, less
times when I'm reminded of my limitations, and some are really the opposite. So I have to repeat to myself that I can't
stay stuck in a cruddy moment. And that
I need to use the difficulties, my challenges, to motivate me, to fuel my
determination.
Sometimes someone might feel
like giving up, but I'm more often amazed and impressed with peoples'
tenacity. There are incredible stories
of people struggling, yet somehow managing to survive in horrible circumstances. Even when people are sick with something
fatal, they try to squeeze every last bit of life, of joy, out of their
existence that they can. I think
fundamentally it's human nature not to give up.
So when I hit the repeat button, trying to buoy myself up, I say to
myself "OK, but did you think even two years ago that you'd be writing a
blog that someone who knows where would read?
And like?" Of course the
answer is no. And I'm incredibly
grateful that my words are reaching people.
It doesn't take away my times of sadness and frustration but it's important
to keep in my mind. And maybe I'll
decide I want to write about something else as well, who knows? Writing works
for me, but if you can't or don't want to write, I encourage everyone to find
something else. Get suggestions from
people on (or off) line, do some brainstorming, because you can't just focus on
your messed up plans.
"because you can't just focus on your messed up plans"~ Perfectly said~!I just found your blog, and as much as i know i am not alone...i needed to know someone else felt the same way..<3 Thank you!
ReplyDeleteyou're welcome! and thank YOU so much - so glad it helped!
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