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

Stop Hep C-Resource Info.

Hello all,

 Here is a link to the Chapman House Community Center located in S.C. I addition to providing services to the Elderly, disadvantaged, homeless and jobless they are also home to StopHepC, a non-profit organization providing education, prevention, support and advocacy for those with Hep C and Hep C/HIV co-infection. Please check out their resources page as there is lots of great information there. From what I can tell this is a fabulous organization and a model for more Hep C support programs nationwide! I'm really hoping to be able to get something like this going in my area; we have a lot to learn from organizations such as this to help us organize and advocate for ourselves! Keep on fighting the good fight!
 Jenny
 Stop Hep C
© 2010 Jennifer Hazard

I'm on a Mission

Today's tasks in Jenny's world of Hep C, were to reconnect with the discussion forum at Hep C Nomads. If I haven't mentioned them before they are a welcoming supportive, knowledgeable online community with members from all over the world. I highly recommend checking it out if you have questions, need support or just want to compare experiences. They also have a forum for caregivers, an often overlooked yet relevant determinant in the experience of Hep C sufferers and those on treatment or experiencing the wait and process of liver transplant.. I hadn't posted in over a week and it felt good to catch up. It also reminded me how vital emotional support and understanding is to my state of mind and coping with the Depression that accompanies this process.
I am extremely grateful to have found this group and will include the link at the bottom of this post.
Task number 2 was to investigate, online, the city of Milwaukee Health Department and determine what, if anything, they are doing to educate, prevent and advocate for Hep C. Not surprisingly I didn't find much. It was clustered in the classification of std's and other communicable diseases. Many of the statistics and "facts" were incorrect or outdated. so I decided to send an email explaining, politely, what some of the needs of the Hep C community are and which are not being met. I specifically suggested that public education and training for physicians and nurse practitioners be given priority. Too few people are getting tested, and even the medical community knows very little about the signs of Hep C and it's prevalence. We'll see what kind of response I get. One thing I learned as an advocate is if you don't receive a response in a reasonable amount of time, you find out who occupies the next rung on the ladder. I've followed that ladder all the way up to State Assembly on more than one occasion, just to help someone get Medical Benefits.
Tomorrow's task is to contact the Veterans administration, as they seem to be more on top of the topic of Hep C than most local entities I've encountered so far. Then my plan is to finally attend the support group that meets at one of the local teaching hospitals. Now that I've discovered Medicaid will pay for transportation, I'm finally able to make it out there.
So, that's where I'm at so far and I will report back with updates! As usual, I'm open to ideas and suggestions either by comment section or by email at nanakoosa@yahoo.com
Take care all, drink lots of water, get your rest and take care of YOU <3
 © 2010 Jennifer Hazard
hepcnomads.co.uk/

A Call for Unity

I tend to spend a lot of time on the Internet these days. Primarily because it's something to do and a way to connect with others that doesn't require money or energy, both of which are in short supply these days. Logically since this treatment seems to be dominating most areas of my life I've spent a fair amount of time connecting with others via forums, blogs, newsletters etc. I have also been on the quest for resources, support systems and advocacy both to help with my own personal needs and, well because as an Advocate/Social Worker it sort of comes naturally to me when faced with a problem or need to immediately start seeking out resources and solutions.

Online I have found some fabulous resources for information regarding Hep C and treatment, I have shared a few here on my page and will continue to do so. I have also found individuals and groups who are extremely supportive and and welcoming, in these cases the common bond of this disease has forged instant friendship and a network of information, empathy and experience.
Buuut, ok here comes the 'but', I have also encountered misinformation, prejudice and a certain amount of "us" and "them" mentality when it comes to how the disease was contracted. Most will agree that one reason we don't get a lot of public support, publicity, huge funding drives etc. is that Hep C is viewed as a "junkie" disease, or somehow otherwise unclean, the result of carelessness and personal irresponsibility. I have actually heard more than one person say, I got sick from a transfusion because of some slimeball/junkie and their drug problem.
To a certain extent I can understand their frustration, you live a clean, orderly 'by the book' life and bam you end up getting this disease. Well guess what? You can lead that kind of life style and have any number of misfortunes occur. People who have never smoked end up with lung cancer, people end up with all sorts of horrible diseases and conditions without having "done anything to deserve it". I'm reminded of the Televangelist (I can't remember which one) who, back in the 90's said that AIDS was 'God's retribution for sinful and unnatural behavior". Holy Cow! I wondered if he had ever ministered to anyone who was dying of AIDS, if he had watched them suffer the pain and despair of the illness and the heartbreak it caused to their partners, families and friends as they stood by desperately trying to help, to comfort to do anything to try to stop the horrible suffering of their loved one. Of course there are still people who feel this way, but the public perception of AIDS has changed significantly over the last decade or so. So how was this accomplished/ First of all you've got some pretty big celebrities who came out with the disease. Then you've got other celebrities who have come out in support of their peers and who who have the money and media presence to actually make people sit up and listen. Then you have grassroots organizations who were dedicated and persistent enough to organize, educate and demand to be heard. Part of what fueled their unity was the reaction to such harsh, judgemental statements as those made by Conservative Christians; nothing creates a bond like a common enemy. But seriously, if the Hep C community is going to successfully unify, to demand money for treatment, research and supportive services we have to put aside our pride  and defensiveness and division based on method of transmission. I mean really who cares how you got it? I rarely ask anyone how they contracted the disease, I want to hear about how it's affecting them now and what they're doing to cope. On the other hand I will be the first to admit that, yes, I made some reckless choices when I was younger, I did inject drugs and even shared works (equipment) with others. In 1979, no one had heard of AIDS or Hep C, at worst you might get Hep B but even that wasn't very common in my area. Does the fact that I had a drug problem mean that I deserve this disease? Believe me a drug problem already comes with plenty of negative consequences attached. Neither I, nor anyone I was using with at the time, would have knowingly donated tainted blood, so some innocent clean living person could get infected.
I'm putting out a call for  Unity and Understanding. If individuals have resentments about contracting this disease "without doing anything wrong" those are valid feelings and can be discussed in an adult manner. But this separation and infighting is preventing us from moving forward in our demand for funding, treatment options and public respect.

 We can't wait around for wealthy celebrities and PR people. We have to keep this ball rolling ourselves, to keep pushing to gain the momentum and the number of voices that will demand attention and response. I have noticed groups scattered about the country, some are really accomplishing great things; we need to learn from their models and apply their strategies to our own communities while also creating our own groups, organizations, community centers and public education campaigns, building upon each others strength and experience. It is only by working together with a common mission and respect for one another that we will dispel misconceptions, gain public awareness and truly begin to be viewed as a population of value, worth investing in, worth saving regardless of what circumstances brought us to this table.

I am working on organizing a group in my community and would love to hear from others who have thoughts, ideas, success stories, not-so-successful stories and anything else you would want to contribute to the discussion.

If you live in the Southeastern Wisconsin area and are interested in creating Community you may contact me by leaving a comment, or by email at  nanakoosa@yahoo.com

Peace and Blessings,

Jenny

© 2010 Jennifer Hazard