There are
things that stay with us. Some are words
or smells or sounds. But there are also moments, people, bonds.
It has
been four years since my cousin died and nearly a year since my uncle died. Both
of cancer, different kinds.
It is
sometimes hard to think about the future, knowing they won’t be there.
I’ve
talked before about how I was able to bond with my cousin and his wife, when
they would visit for his treatments. We
would go out to lunch. And in the midst
of their ordeal, they took the time to see how I was doing. This was when I was at my sickest, when I didn’t
yet have a diagnosis.
And my
uncle was my link between my rheumatologist and I, and he would provide me with
invaluable advice.
There have
been so many times over the past year when I wanted to call or e-mail him, to
ask him what he thought I should do.
But I couldn’t. I can’t.
It’s hard
to lose the people who you feel understood you the most.
It’s the
bond of someone that understands the fear and confusion, who understands what
it’s like to be sick and in pain.
And over
the years, there has been some measure of survivor guilt. Why am I still here and they aren’t? For
those who have never experienced this, this is not a suicidal ideation. It isn’t a matter of me not wanting to be
here. It’s a matter of wondering why the
dice were rolled and went one way rather than another.
So yes, part
of the reason I miss them is selfish. It’s
because they aren’t here to provide advice and support. But there’s also the fact that there is so
much they won’t be able to experience; my cousin’s children’s bar and bat
mitzvahs, their high school graduations, college, marriages; my uncle won’t get
to see my cousin graduate from medical school.
In the
depths and quiet of winter, I find myself thinking about my cousin and uncle
more and more. It might feel like
renewal won’t come until spring, but renewal happens when we want it to. Maybe because it’s a new year, yes. But maybe because we simply want to get a
fresh start, and this can happen in any part of our lives, at any time.
For me,
the new year means reflecting on some parts of my past, like the important people
who have impacted my life, especially my life with illness, but who are not
here any more. But it also means trying
to forget other parts of my past that are holding me back, like failed
relationships.
I have
goals for 2013, some simpler than others.
I want to try and kick my diet pop habit, I want to stop eating French fries
at restaurants, I want to kick my addiction to pop tarts, and I want to read at
least a book a week. I want to finish my dissertation and start a life together
with my boyfriend. I want to write a
memoir. I want to take control of my GI
issues, which have really plagued me the last few years. And I want to find a treatment that works for
my lupus AND RA.
The past
few years haven’t been easy. There has
been love and there has been loss. There
have been extreme highs and extreme lows.
But more than anything, there have been people who have marked each
moment for me. These moments strung
together are the story of my life. And without
them, I wouldn’t have much of a story.
So on the
path of renewal, we must reflect on the past in order to get a (somewhat) clear
picture on the future. It is only by
acknowledging our struggles that we are able to succeed.
Hello! I just wanted to comment because I love your reflection thoughts and your statement about how "without those moments you wouldn't have much of a story." I've never really thought about things in that way but I completely agree. Without our struggles and battles, I guess we wouldn't have anything to talk about, would we? I have RA as well and can relate with your stomach issues. I have "unknown" stomach problems that may or may not have been caused by long term medication for my RA. I also have a variety of eye issues that may or may not have been caused by my RA. It’s no fun when they can't diagnose you correctly and they have to play the “try this, then wait-and-see,” game. Or the “lets run this test and that test” then wait and see one, I don’t like that game either. Good luck to you in the new year, hopefully they will find something to keep your diseases in check and give you some worry-free time. I think we can all use that! **) -Stephanie
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