A Sense of Purpose, Casting off the Cloak of Victimization

In my previous post, "When Your Mind has a Mind of it's Own", I was swimming in some rather dark emotional waters. Much like my physical state, this status can change frequently and without warning. At times these moods appear out of nowhere like a dark cloud looming over a previously sunny day, but if I sit with those clouds long enough I discover that there is usually a weather front somewhere that formed the clouds in the first place. After spending a week moping around and doing my usual reading and research I've come to realize that this whole "after treatment" mystery is probably a little more pressure I had realized; and not just for the reasons you'd think. I mean there are the obvious concerns: "what if go through all this and don't clear the virus?" and "what if I never really get back to the way I was before treatment?". Then there are the vocational issues as addressed so candidly by my peer blogger Ian Quill in his recent blog post (see link below). Many of us Hep C survivors (and survivors in general) are exploring and creating our own solutions to the question of vocation. Many of us have been able to appreciate the gift of time and self reflection this disease has provided, enabling us to redefine our values and goals and that is a wonderful gift.
I've never been this kind of person in the first place, I chose a career that is extremely underpaid and undervalued because it is what I love to do and because I believe that service to others is one of the greatest gifts we have to offer. No matter what our work history the way we make a living, the fact that we dedicate ourselves to work, to being accountable and receiving a paycheck is a significant part of our sense of self. As with so many other areas of our lives, the bits and pieces that make us "who we are" are often disrupted by this disease. It is one more area where the rug is pulled from underneath our established footing  leaving us wondering how and if we will walk again.
For myself, I am able carry on in a similar role as in the past, only perhaps with less direct service. Writing and organizing is a way for me to continue my role as an Advocate and I can hope that someday, in some way it, will help bring in some money. I have no desire to be rich and famous, or even upper middle class. I prefer a simple life...but I'd like to be able to get through the month without running out of money halfway through. I'd like to know that if my dog eats a garbage bag I can take him to the vet and get it extracted.  Although loss of income may be an inconvenient side effect, it is the need for a sense of purpose is far more essential to one's well being.
I encourage anyone whose vocation has been limited or lost entirely due to this disease to take the opportunity to find something to dedicate your energy to; a cause, a hobby or maybe a spiritual focus. Think of all the things you wanted to do if you had more time and pick one or two that you are able to work on. We all need to feel productive and useful. One way to accomplish this is by using our experience with Hepatitis to add to the efforts to tame this dragon. It has been my observation that many individuals who are disabled or limited by an illness, injury or other condition find great satisfaction in mentoring others, educating the general public or taking political action. We often feel that our disease has taken control of our lives, robbing us of our power, we feel victimized. However, if we can make the choice to be active in education, support and prevention efforts we find ourselves stepping out from under the cloak of "Victimization" and into  the light of purpose and empowerment.
Not sure where to start?  Here's a link for suggestions!
http://www.hepatitisactivist.org/
© 2010 Jennifer Hazard
Ian's blog-http://ianquill.blogspot.com/2010/12/get-job-get-life-hepatitis-c-liver.html#links

the fog just got a little thicker

In my last post I talked about the difficulty in seeing the light at he end of the tunnel, the longed for EOT (end of treatment) date. I thought that date, for me, was in early February. Throughout my treatment I have avoided keeping close track of the timing. I know myself well enough to know that would lead me into familiar old patterns of obsession, frustration and the lovely bind of self indulgence;  picking at the wounds and wallowing in self pity for the scar that was created. So knowing this about myself, my penchant for teenage like angst, I decided to take the high road and simply get through this without minding the calendar.
Until recently that is... I'm really ready to be done with this. The physical and emotional toll is like being under a pile of rocks which each day has one more rock added to the pile. So at my last visit for my procrit shot I asked the my nurse for the actual EOT date. We had both thought it was sometime in February, but the news that it's actually one full month later was, well like having a couple of wheelbarrows of rocks heaped on the pile all at once.
To get through this, I bargain with myself, and I've been telling myself, Self, it's only a little over a month, we can do this. That day in the nurses office that part of myself I coddle and and bribe and cajole along pretty much collapsed into a pile of tears like a little kid. You know how they do it, as if their bones suddenly dissolved and their tear ducts have an automatic "drama alarm" which sets off an instant prolific flow. Meanwhile, Grown Up me ignores the kid having a fit in the corner, puts on her Mommy "everything is going to be ok face" and drags the snot faced boneless Little Jenny home.
Fast forward a couple of days and as is the course of nature the inevitable push and pull between Little Jenny and Mom Jenny gives rise to Angsty Adolescent Jenny! Ta Da!
My Therapist once described me as The Eternal Teenager. I was not offended at all, and not because of our youth oriented, plastic surgery obsessed culture. I admire teenagers, I've spent most of my life working with them. I love them for their defiance, their mistakes, their question authority attitude and their fierce quest to find themselves. Individuation, they call it, and it drives parents crazy.
One of the things that gets teenagers into trouble is they have a limited capacity to see the future, they live in the  moment, be it good or crappy. Sound familiar? Remember that fog that has been obscuring the "after treatment" possibilities? Well on that day in the nurses office the fog just rolled in a little thicker as Angsty Teenage Jenny took  over.
That's where I've been the past couple of days. Pissed off at the world. I watch the news and not only am I pissed at what I see, but I'm pissed at the way it's reported. I try to watch some videos of some of my favorite music and I realize two thirds of the musicians are dead...overdoses, car accidents you know the life.
I think I need to let go of the angst and just let that little kid cry and cry, but I'm afraid it won't stop.
I know this will pass, it always does, but for today I'm going to indulge my misery for a bit...I haven't decided how, but I don't have it in me to watch pretty little Marc Bolan and remember how his life was cut short by a car smashing into a tree. He didn't even drive.
xo
Jenny
© 2010 Jennifer Hazard

For What it's Worth

Week 40 (roughly) and I do mean roughly. I no longer recognize myself when I look in the mirror. I have lost
 35 lbs, I already have a thin face which now seems skeletal at certain angles. I've cut my hair the shortest it's been since the Punk era. I don't bother to put on make up anymore so the circles under my eyes are making their own fashion statement. You don't even want to know what's going on under my clothes, let's just say I've aged quite a bit this past year.
When I run into people that I haven't seen for a while, I can see the skepticism in their eyes when they ask "are you sure it's worth it? for a coin toss?"
 Is it worth it?
Who really knows? If I achieve SVR of course it will be worth it. If I slow down the progression of the disease, yeah probably worth it. If I don't clear the virus? Who knows? Who knows what progression the virus would've taken if I hadn't treated? This is a quirky disease, it doesn't play by the rules, you never know when it's going to sneak up on you...or not.
But isn't that the way life is, really? Are there any certainties? Decisions have to be made on a daily basis, some bigger than others.When you are faced with a chronic medical condition, some choices have more at stake.
After lots of research, conversations with  others who've been through this, meeting with my doctors and completing all the testing (I'll never forget 15 vials of blood at the lab) I ultimately went with my intuition when deciding to treat. I've learned to trust my gut, most of this education was bestowed upon me as a result of the consequences of not trusting my gut! Once I have made a decision, I typically don't look back. I may end up changing my course somewhere down the road but once my mind is set the wheels are in motion and there's nowhere to go but forward. Granted I've made some, shall we say, unwise decisions in my days, but I've made some damn good ones too. Everything that has manifested is, I believe, part of the lesson I'm here on this earth to learn.
So is it worth it?

Of course

© 2010 Jennifer Hazard

I'm Still Here

I’m still here

I know that when you look for me it seems I’ve disappeared

I know the ghost of me, I see her in the mirror.

I wish I could open a window to let you see inside

My soul

I wish I could call out to you and tell you please

Don’t let go

I’m still in here I promise and I’ll be back

It’s just right now I’m hiding from a brutal attack

See my body is a battlefield

And right now it’s under siege

I’m hiding in the trenches waiting for the troops to leave

And when this war is over, it’ll be safe to come out and play

Just please don’t forget about me because I’m fighting every day.


*ok so I did not inherit my Fathers talent for poetry, but this needed to come out exactly as it is*
© 2010 Jennifer Hazard