Growing up, health challenges were not a personal,
tangible part of my world. Neither of my
parents had any major health issues that impacted my life. Challenges due to medical disorders are now
obviously very real to me, both because of my own experiences, and those of
members of my family. I know there are
many people in the world whose lives are difficult, and health is often part of
the mix. Many people deal with chronic
health problems that affect their quality of life in some way. I won't say that being healthy is everything,
but if you're in good health, taking advantage of opportunities is easier, less
complicated. In my case, a paying job is not an option, and
I need to think carefully about volunteering opportunities. There are activities I can't participate in,
but I can lend my voice and ideas. I
have to figure it out with people who are understanding.
Given what I'm dealing with now, I found myself remembering
a phrase from my college days: "Life
is hard." That's the opening
sentence of a book called "The Road Less Traveled: A New Psychology of
Love, Traditional Values and Spiritual Growth," written by M. Scott Peck,
M.D., first published in 1978. Thirty some odd years ago, I took a philosophy
seminar class as a senior in college, and it was a favorite of mine. I wasn't a philosophy major, but it was
fascinating to be exposed to it. We had
a professor, but there was also a group of three students who helped lead
discussions, and we all always had a lot to say. "The Road Less Travelled" was one
of the books I read for this class, and I've always remembered that first
sentence; "Life is hard.". We
talked quite a bit about the fact that Peck put this idea out there, right in
the beginning.
I thought then, and still do, that the perspective or
presumption, that life will be hard was compelling. It's right up there with the idea of the
pursuit of happiness, rather than the guarantee of happiness. But if I were writing that sentence, I
wouldn't say life is hard, but rather that life is challenging. The word "hard" makes me imagine
stop signs and brick walls. I often think
when people use the word "hard" what they really mean is that it's too
hard, whatever the "it" is, and that kind of thinking can get you
into trouble. I also wouldn't choose the word "hard" because the
opposite of "hard" is "easy," and life isn't easy. There are moments here and there that are
easy, that just kind of flow, but I don't think in general that life is
easy.
"Challenging" to me has a very different
feeling to it than the word "hard".
I like the very first definition I found: "testing one's ability,
endurance." If you're testing your
ability, that means you may have to dig deeper, but you can do it, you can
endure. That's an empowering
message. I think of another phrase I've
heard quite a bit, that life's challenges make you stronger, and I agree but
I'd add resilient. No one likes dealing with a major challenge; going through
the experience may just feel draining, exhausting and difficult. But I know that even now sometimes I say to
myself, "OK, look how much you've been through, you can handle a
lot." It's valuable for me, even
though I have very real challenges, to remind myself that I'm not fragile.
Another reason I like the word "challenging" is
because something that's challenging is more like a really really difficult
problem that needs to be dealt with, tackled.
Pain and dizziness definitely
rank as major challenges in my book.
It's hard when you're in pain not to focus on the pain. Dizziness to me is even worse.... dizziness
makes me feel out of control, ungrounded.
Disconnected from the world around me.
Disequilibrium isn't quite as bad, but it definitely gets my
attention. So the idea of tackling
feeling any of this, working through moments of any of this feels
empowering. Not tackling my disorders
makes me feel stuck. Stuck means there's
nothing you can do, or at least you FEEL like there's nothing you can do. I HATE feeling stuck. I do feel sometimes like I'd like a break,
like I really don't want to find out what I can handle, or have more situations
that I can learn from. I want a day that
isn't filled with challenges. But I'd
still rather be tackling my challenges than doing nothing. Doing nothing makes me feel helpless, and no
one wants to feel helpless.
All of this gets me thinking about quality of life, and
how health impacts quality of life, and what to DO about that. In the end, what's in the mix with all the
hard, or challenging stuff so I/we keep going?
I don't remember if Peck answers this in his book. Figuring this out when you live with the
challenges of invisible disorders everyday isn't so simple. I don't think there's one "right"
answer, because everyone's different, and everyone's lives are different. But there are some things that stand out to
me, that help me.
Simply stated, but something not so simple to do, is cheering
myself on, giving myself credit for every effort. Being proud of myself is really important,
but it's easy to lose sight of this.
Noticing anything and everything, whether it's a big change from several
months ago, or a very small step forward over a few weeks, is worthwhile. For example, last year I didn't dare take
walks in the winter because I was terrified of falling down. This year, even though I'm still nervous, and
sometimes walk very carefully, I've tried to get out of the house every
day. I also notice any time I am able to
focus a bit more on the music I make when I play my flute. I may feel off balance after playing a few
minutes, and need to get reorganized, but I try to pay attention and feel good
about what I did. And though I'm still
working on this, giving yourself some kind of
tangible reward for your effort is never a bad idea.
Being connected to people in a variety of ways is very
important; your immediate support system (your family), your professional
support team, and all the other people in your life. Not just to be heard, understood, and to feel
less alone, but also to be a part of THEIR life. I think it's good to listen to people talk
about what's going on in THEIR lives, to share. Getting out of your own head, out of your own
life is a good thing. Thinking about
someone else reminds you of what others deal with, of the world around you. I know that there are times when each of us
just doesn't have the capacity to be open to other people's stories, but
hopefully most of the time we are, even if it's only for a few minutes. Building and maintaining connections and
relationships takes time and effort, but it's so important.
It's not just babies who thrive when they get positive attention,
validation - each of us does. I couldn't imagine dealing with the
unpredictability, the slight insanity of life all on my own. People we have ties with help soften and
cushion the hard parts, make the challenges more bearable. And being able to find some good moments,
moments of laughter to share is wonderful.
Hopefully I/we can notice the good, sweet moments that we create on our
own, but we also need to share, to get help when needed, to build connections. We are social creatures, and I think we need
to embrace that.
