I have had Hepatitis C for nearly 40 years, with no hope of surviving it once it was clearly diagnosed as what it REALLY was in 1991 (before then, it had been a series of "well, that's weird" and "are you a heavy drinker?" "NO," and "you can't have this insurance because of your drinking problem" (WTF?) and then it was labled "non A/non B hepatitis", etc. PS--I didn't drink, except for occasional high school experimenting and my first two semesters at college, and even then, it was no fun, so not a big attractive thing to do, so I quit doing it entirely. Since I was properly diagnosed, I've had two glasses of champagne at each of my weddings and nothing else, because...I LIKE LIVING)...
So, since I'm delving into topics that never really made the light of day in the "old days" when I was working for the Church, I'm going to take on one that I should have done something about YEARS ago.
Gossip.
There were women where I worked did not like me and treated me like garbage. There's no two ways around it, and anyone who knew anything at the time knew how hard one of them was working to get rid of me. I'm sure she's really proud of herself ever since I left, but I find it super ironic that in the end, she had nothing to do with me leaving. I left because of all the other stuff I blogged about yesterday.
She (and a few core of people who also disliked me for reasons that I will NEVER really understand) liked to gossip about me occasionally. I know this because I would hear about it from my boss, among others. One of the things she liked to tell people is that I was lying when I occasionally referenced there being something wrong with me that was most likely going to kill me (usually on dark days when I was feeling pretty sick, things would slip out in the quiet private of the office environment)---you know, like the Hepatitis C I have had since a blood transfusion saved my life when I was eleven years old.
I guess since I hid it so well, I should forgive her and the others involved for those wrong assumptions, but should they be automatically forgiven for the spread of poison and hatred? Nope. You can't be forgiven until you ASK to be, so step right up, I'm really ready to move on. What? No? Well, then, okay, I guess I'll let it go, stop praying for all of you, and get on with my life without your permission or blessing.
Once upon a time, I used to console myself with the thought "you better hope I'm more than you think of me, because some day, MY prayers may be the only thing standing between you and damnation." That was super defensive, but at the time, it helped me manage my own rage at being sabotaged, talked about, and sabotaged more.
But, back to the Hepatitis C.
After nearly forty years of battling the consequences of Hep C silently, quietly, behind the scenes, fighting through the fear that my children would be left with no memory of their mother, other than end-stage Cirrhosis and Liver Cancer, and being told by doctors REPEATEDLY that I would die if I didn't do this, that, or the other thing RIGHT THIS INSTANT.... and instead deciding not to because it would mean wrecking my ability to parent (and I had no back up plan, no extended family, no husband at the time, no one to really help me so the onus was MINE and mine alone), having to choke back all of that so that I could parent my kids while they were little because that's when it REALLY matters... (think about it...if all you have left in ancient age, dementia, or Alzheimer's are your childhood memories, those are probably more important than the other ones, right?), they finally developed a cure.
That's right. A Cure.
So, for five months now, I've worked through all the hellish fun of the toxic soup of meds that has an 88% chance of killing the virus forever. Before, due to the specific genotype of Hep C that I have (1a), there was a mere 5% chance of killing the virus, but a 100% chance of destroying me (which is why no doctor after the first one ever really suggested the triple combo again once I decided 5% wasn't worth a year lost for my youngest children's memories), there had been nothing I could do but wait and pray. The first doctor told me angrily that I'd be dead in five years because I was a fool and that my decision was going to result in my imminent death. However, the transplant doc agreed with me, so I chose to wait and white knuckle it. The real statistics, as they started to scientifically emerge, were pretty grim...30-50 years after initial infection, even if nothing major had happened to you yet, there was an increasing likelihood of an imminent prolonged, horrifying death. At 41, I hit the thirty year mark. By 49, at the beginning of this past year, I was nearing the 40 year mark. Sobering thoughts indeed.
So...Gossiping bitchlets of doom...here is your shame---wear it wisely and remember to be a little more humble should our paths ever cross again, because I promise you I will NOT bend again and hide in shame that *I* did something to deserve your scorn---I was, in fact, sick, and probably well on my way to dying. It changed the criteria upon which I made decisions. If I seemed a little intense to you, or whatever you justified your particular dislike of me with, maybe, just maybe, it was because I knew my time was limited and I needed to DO something useful with it while I had it.
I understand now that there will always be gossip and sabotage in any work environment, I've figured that out finally, after a naive lifetime of watching it wreak havoc in people's lives. I was just super surprised to find it in an environment I felt like ought to be immune from that sort of viciousness, seeing as we weren't really dogs fighting for scraps in a junkyard after all. We were the servants of the servants of God. Oh well...as one nun friend once told me "working for the church is just like working anywhere else". Yeppers.
By the way...did you know this cure costs $178,000? Just FYI, since I've got the bad genotype and it's six months of the meds, not the three-month course which is a bargain at $84,000. Apparently the pills cost about 30 cents each to manufacture, and the cost is for "development" and probably the fact that it's a CURE, not a treatment and wiping out Hep C isn't good enough for investors, but, I digress. Google it and be horrified.
So, as I near the final countdown of days to see if I'm in the 88% that are cured and not the 12% who have to try again, I start to ruminate about what the next thirty years of my life might look like. I start to hope again. Mostly, I reject all the inappropriate shame that I wore like a mantle for all those years. An eleven year old child who nearly died and was given a prophylactic blood transfusion on the day she left the hospital did nothing immoral or illicit to incur a long, slow death sentence. Whatever else I do wrong with my life, whatever other sins I commit along the way, that was NOT ONE OF THEM.
The decisions I made while under that pall were completely reasonable. The actions I took make sense in retrospect, if you give it a bit of compassionate consideration. For my intensity, I apologize. For whatever you think I did to you...I do not apologize, because I know my heart and I know I did the very best I could do at all times. I worked HARD, and I learned constantly, and whatever ill will you chose to spew about and at me is your shame.
Now, I'm going to go and rearrange the furniture in my house (it's also a metaphor for me working through the past 40 years of pretending in public), try not to barf, try not to have massive medicine-induced panic attacks, try not to pass out from anemia, and hope I get to sleep some extra tonight. Then, for the next 29 days, I'm going to hang like a lemur from a cliff face, praying and hoping I get to live long enough to try again to make friends, make a difference, and give something back to the world I LOVE LIVING IN. Life wasn't something I was expecting to have, so this new opportunity is fascinating, overwhelming, exciting, joyful, and hopeful (emotions I have never allowed myself, btw, because I needed to stay focused on making life better for my children).
Prayers appreciated. Good thoughts appreciated. When I finally decide what to do with the rest of my life, networking and opportunity for work (volunteer and paid) help would be appreciated. What do you get in return? I will let you in on a secret: you get to feel good about the universe because you brought peace and joy and happiness back into a life wrecked by a shame that should never have been mine to bear in the first place.
Toodles
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