Isn't life Ironic?

Hello Everyone!

Last post I addressed the sense of Victimization that some of experience when faced with challenges. For some of us, yes me, the Victim role is like an old comfy piece of clothing. It's comfortable, but out of style and threadbare; it's no longer flattering or particularly useful. And yet, you can't bring yourself to throw it away.

When I got the news yesterday that my end of treatment date is Feb 11th naturally I was relieved. Finally an end to this crazy sick fever dream I've been living in for most of the past year. And yet I found myself feeling, well, a little afraid. I realized that when treatment ends that means I have to venture into my proverbial closet and find a new outfit and it can't be the comfy cloak of Victimhood that I have, quite honestly, donned too often throughout the past year.

After freaking out about that for a while I realized for the 100,00th time that panic has never made any situation more manageable. I don't have to have all the answers yet. I still need time to recover, to (hopefully) get my thought processes a little more clear and if I keep following my heart I will know what's right for me.

I also realized that I've been feeling a little pressured by others, some well meaning, others critical and judgmental, that there is this expectation that I will return to work and life will be normal. Frankly I don't see myself working full time, but I may have some opportunities for flexible work. Disability allows recipients a certain number of hour’s employment, and if I could supplement my fixed income a bit, feel useful and still have time for my writing and self care. I think I'd be living a pretty sweet life. It's an empty page, not empty but filled with notes, scribbles and ideas. I like to think of myself as an explorer, an adventurer seeking to discover my own passage, my own path to the next chapter. When I look at it that way, as opposed to the confused, frightened Victim I realize I can take that little girl by the hand and say "hey kid, it's gonna be ok, I'm gonna show you the world and you'll never have to be afraid again.

© 2010 Jennifer Hazard
Image Courtesy of The Graphics Fairy

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

When Your Mind Has a Mind of it's Own

Looking back at my last post stirs the kettle of emotion for me right now. Part of me feels almost embarrassed at the dark self indulgence and misery. And  yet, I know that is part of the process. I know myself well enough to know that Hep C or no Hep C, if I find an emotion is becoming an annoying presence, like a pimple forming, that I need to indulge that feeling, to give it it's due attention.
There have been  so may times in life that I have held back my feelings, pushed them aside and pulled myself up by the bootstraps to carry on as the Brave Little Soldier. Some of us learn to do that at a very young age. There were things going on in my family, growing up that as the oldest I felt it was my duty to "pull it together" and carry on in order to protect my siblings. And besides, focusing on them was easier than experiencing my own fear and confusion. That response may serve it's purpose in the short term, but it comes with a high price tag in the long run. Fortunately I've learned a few things along the way and one of them is that those buried feelings have to come out and be acknowledged somehow.  Ironically, being on treatment, sitting at home most days, I am immersed in the "opportunity" to experience my emotions, whether I like it or not.
To quote my fellow Hep C blogger Eva, 


"Yet the mostly painful and disturbing thoughts or distorted fixations continued regardless of whether I wished to turn attention to more healing or cheerful possibilities" http://evaday.blogspot.com/


This is so accurate, our minds have a mind of their own, so to speak. There are thoughts and emotions we really have little, if any, control over. It frightens me to remember that some people become delusional and /or suicidal on this treatment. It's one more reason that we really need each other, and our friends and families, our medical providers, anyone close to us to try to understand that we need support, we need understanding and feedback.

I am so incredibly grateful for the people I've met along this crazy timeless path through the mist.  I'm grateful for the others who write and blog and share their stories with courage and honesty. We've got a pretty good community going here. I guess we could say "it takes a village to raise a Hep survivor" I hope that new readers will find welcome and comfort in our little "village".

Peace,

Jenny

© 2011 Jennifer Hazard
Image courtesy of the Graphics Fairy

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

Hepatitis C Research and News: Beacon NewsFlashes – January 3, 2011 (The AIDS Beacon)

Hepatitis C Research and News: Beacon NewsFlashes – January 3, 2011 (The AIDS Beacon) © 2010 Nanakoosa’s Place, authored by Jennifer Hazard

New Year, No Pressure

 Happy New Year!!

I've been "writing" my New Years blogs in my mind (yeah that's how I roll) all week. This time of year I like to take stock of the past year, do a little self inventory as they say in recovery, and then think about what I'd like to see happen in the upcoming year. You might notice I don't use words like, “goals", "life plan" or "resolutions". I never really learned about the concept of "goals" until later in life and for some reason (unfamiliarity? Corporate overuse?) the word still makes me bristle a bit.

In keeping with the recurring theme of irony that is my life, it was about the time that I began to internalize the concept and actually create some goals that life yanked the tablecloth out from under my neatly arranged plans like a second rate magician trying unsuccessfully to pull the tablecloth from under the china. My finely laid table was a shambles of chipped china, scattered silver and spilled glasses. Like most survivors I know how to pick up the pieces that are still useful, repair what I can and discard the rest.

Resetting my table is pretty much the forte, and maybe that's why I have always avoided planning ahead. I'm certain that there are many people out there who will insist that recurring chaos is the result of poor planning rather than an excuse for it and they are probably right, and yet so am I.  If I've learned one thing in this life it is that seemingly paradoxical truths can exist and be valid at the same time. On a good day life is a theater of the absurd in my eyes, on a bad day well; let's just say I lose my sense of humor at times.

As far as resolutions or goals, I'm functioning on a pretty primal level right now. Goal 1) Eat more than once a day. Goal 2) Get out of bed every day. Yeah, ambition is not high on the list right now. On the other hand I have accomplished several things I probably would not have if I'd been working full time. I have two regular blogs that I do a fair job of keeping up with. I have been designing my own website which is actually finally presentable (see link at bottom of page). I've done a lot of crafting and artwork I've always wanted to do. I've gotten to know many people online in various communities who share many of the same interests and concerns that I am passionate about. And I've spent a lot of quality time with my family both human and four legged.

The Big question mark hovers over the statement "after treatment..." It's difficult to even visualize that place, the place that exists beyond treatment like some kind of magical isle that disappears into the mist. As synchronicity would have it I recently stumbled across a post by one of my fellow Hep C bloggers that pretty well sums up the mists that obfuscate the future and allow us to cherish each day as it is. I hope you will enjoy reading it as much as I did http://ianquill.blogspot.com/

© 2010 Jennifer Hazard

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Thank You and have a blessed and healthy 2011!!!