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I have been wanting to write about a few things
for a while now, but I get caught up in "stuff"
and the stuff of my emotions, and wind up
writing stuff that doesn't really sound right to me.
I have several unfinished drafts of blogs. I very
much want to say things, but I think I am getting
caught up in either wanting not to sound bad,
or worrying about what someone who reads this
blog will think of me.
I thought I was "over" that, mostly. But I guess I am not.
I am thinking that what I write might sound petty. It might not be pretty. It might
sound like i am complaining. It might sound like a lot of things that would not
exactly be flattering.
Well. The fact is that all of these things I am thinking, I am thinking. I don't know
about you, but I think we all have our unpretty moments, we just hide them,
depending on how good we are at it, and who's looking.
So what am I thinking?
I am thinking about something I have thought about to one degree or another since
I was diagnosed and that is about how I feel in relation to others and their experience
and treatment of me, in general, and in particular to help financially.
In the few months since I was diagnosed, I saw a bus monitor receive nearly three
quarters of a million dollars because she was bullied. I saw some guy who had
raised thousands in his brother's name for an ability to go out once a week and give
a good ($500) tip to his waiter (as of this writing, nearly $63,000). I have seen a
woman and man who had their wedding reception jeopardized when the hall closed,
only to receive a very generous check to cover their reception elsewhere. I have seen
people who were shot in the Colorado movie theatre receive money, as well as
the most recent - those affected by Sandy.
I have seen a lot of generosity. I have seen people raise money for the "pink ribbon
machine." And I have seen many of those I know asking for help on the behalf of
others, and yet, when it comes to me...well...it hasn't happened. I get told how
uncomfortable it is for them to ask.
So it is not uncomfortable to ask for help for
strangers, but it is uncomfortable to ask
for help for a friend who is struggling and
dealing with a cancer diagnosis?
I realize there are many things that go into the decisions and choices people make.
I also think it is great that people are willing to be so generous. At the same time,
I can't help but wonder why I find myself in the position I am in. Even one sixth
of the Tip Guy would make a huge difference for me. I realize it is "just" me,
but...being in survival mode prevents me from doing the types of things I believe
I can to make a difference. Just look at JoLoPe.com and you can see the types of
things I can offer people. So many tell me how great their time with me and those
things I create have been.
Imagine if you were in my position:
*You work for yourself.
*You are unable to work for an undetermined length of time.
*You are not eligible for disability, but certainly feel disabled.
*You are by yourself. No partner to lean on financially.
*Your bank account which wasn't much to begin with is nearly depleted.
*Going back to work isn't as easy as going back to get a paycheck.
*You live with a friend, but will have to move soon, but don't know where you
will go, or how you will afford it, and living on your own seems likely out of
the question. At the same time, living with someone else doesn't seem feasible,
either. You have the very scary, uncertain reality of not knowing where you
will be able to call home soon.
*You pay $560 a month for health insurance, that you now need and cannot
not go without.
*You have been diagnosed with an aggressive form of cancer that you hope
will go away and never come back from the treatments you have received
that have left you minus your gender organs as well as your hair, and has
left you feeling tired, depleted, irritable, and impatient much of the time. It
also has affected your ability to think clearly.
How would you fare? How would you feel?
Would you ask for help? What if you had no choice? What if, without the
help of others, you could not pay your bills?
I have had no choice but to ask for help. But I seem to be able to only
get it in limited form. Part of me wonders if it is because I haven't made
much noise about it. Part of me wonders if it is because it is ME asking for
help, instead of someone else making a plea on my behalf. Part of me
wonders if it is because of CANCER.
I only make those letters big because it seems that it is big for others. So
big, in fact, they can't even talk to me. They can't even deal with me.
I have to wonder if those who have asked for help for others - who didn't
have cancer - if that is the part that makes them uncomfortable, not the
part about asking for money.
People in Staten Island said they felt forgotten after Sandy. I don't
know their exact situations, but I know how I feel. And I am feeling very
alone. I am feeling like I don't know what to do next. I have had my own
personal storm, and there has been no fundraising special or news events
As I write that, I wonder how many others are in a similar place as I am.
Millions were affected by Sandy, and millions are affected by cancer.
Millions have their own personal storms that create a different kind of
damage than what we have seen recently.
I can get logical with everything. I can be understanding and compassionate
and reasonable. At the same time, I am sitting here, frustrated as hell. I
want to be treated like I am fine, but at the same time, the paradox is that
if you think I am fine, you won't necessarily see the part of me that is
crying out for much needed HELP.
I am NOT fine. And yet, I am. I am also scared sh*tless.
You see that person over there that is waving in an animated way?
She's not waving HI.
She's screaming HELP.