My sister was diagnosed with Hepatitis C earlier this week. She is very ill and is scheduled for a liver biopsy in 2 weeks.
My sister was in a motorcycle accident in 1982. Her boyfriend was killed and she lived in the hospital for many weeks. Her body was pieced back together and during that time, she had several blood transfusions. She has lived in near constant pain for the last 24 years because of her right leg - it had been put together (her tibia and fibula were shattered) with rods and poles and held together with a Hoffman Device (also seen here, but hers was a four-sided cage with 3 rods going through the leg) - a 20-pound cage that stayed on her leg for 4 years - 2 years longer than it was supposed to because she didn't have insurance to get the damn thing taken off. She had infection after infection in her leg where the rods entered the skin and she became the world's best crutches walker since she had to haul that thing around with her everywhere and never once was able to put her foot down on the ground lest the metal grind and mash her crushed bones inside her leg. I remember once, within the first 6 months of having it on, when she mis-stepped on someone's sunken livingroom and she landed on her foot and the sound of clanking metal and her piercing scream were horrible. She passed out in my arms from the pain.
We went to a Madonna concert when she had The Cage (as we called it) on her leg (Madonna's "Like a Virgin" Tour) and people were so grossed out by it, we ended up buying a shirt just to put on the thing so people would stop screaming about it. It was my sister's first outing since the accident and it was so traumatic for her she didn't go out in public again for many months. I remember holding her as she struggled to walk through the crowds with my best friend clearing the way so she didn't fall or hit anyone with it. As people moved, they turned and made horrified faces, yelled, "gross!" and other delightful expressions and my sister, who never, ever cried, sobbed her humiliation all the way to the car.
When she got the rods removed, it was in an Emergency Room because her leg was so infected, her blood was septic. The Orthopedist used his metal cutting tool and snapped the rod and it broke the wrong way, sending my sister into blacking out oblivion from pain as he quickly pulled the offending rod out of her leg and infection poured onto the gurney's sheets, soaking them with green and red. She was on several antibiotics for over a year.
Even with the Hoffman Device on for far too long, her leg never found its way back together and one of the inside rods had to remain to pretend to be the fibula... or at least to brace two pieces of it as they stood sentry inside her leg. Walking always hurt, of course, but she never complained. I was always the whiner.
Many years later, my sister was hit in her car from behind by a drunk driver and her back was then the part of the body that far surpassed her leg on the pain scale. The driver was a 15-year old whose parents had no insurance and my sister, also having no insurance, spent 8 years struggling for disability insurance and just now able to get it about 6 months ago.
In her quest for pain relief for her terribly injured spine, she was scheduling herself for surgery with a surgeon who was willing to take her complicated case - he was even going to take a look inside at her leg during the surgery to see if he could do anything to help her! It was during her pre-op lab work-up that they discovered her Hep C status and, of course, everything is now on hold.
My sister is so devastated I am afraid she will try to kill herself. (Which she has tried before, several times.) Her addiction to pain patches and alcohol have been the only way she has been able to survive the unbearable pain all these years and now she is being told she cannot drink at all anymore and that alcohol might have actually contributed to her illness. I am so frightened for her.
My sister and I have had a volatile relationship for these 40+ years. We have gone more than a year not speaking to each other sometimes... not for any reason except for not having a thing in common to talk about. She has nothing to say that isn't about pain and destitution and begging for money for alcohol and paying her bills. My mother kills herself to take care of my sister and I would help if money were no object, but it isn't and I am angry at my sister much of the time for being so much of a victim... of what, life? She spends years as an alcoholic anorexic... drinking for her only food. She's tried to work off and on, but the pain is too much and she has to quit.
Her world is so small... the apartment and the tv... and only recently, the computer (which is very foreign to her)... what can I expect her to talk about but what she knows?
She is so mean to my nieces. If I had the space, I'd have taken them in long ago. The meds make her so, so angry - and the pain... I know how angry pain makes people. Makes me.
So, when I got this call from my sister this week, I knew something was wrong because she hasn't called me in at least 18 months. I called her right back and she told me of the diagnosis and sobbed, telling me she didn't know what to do, where to go, what it means, what about the girls.... Sitting in front of the computer, even with clients at the office in front of me that I ignored, I began looking up the information my sister needed and reading her statistics, facts, stories and url's to help calm her down. I sent her an email while she was still on the phone with a few url's so she could read things on her own, too, and we talked a lot about the girls. It was reassuring she was so concerned.
My mom called me and asked me about Hepatitis C and since I've now learned a lot about it, I was able to tell her stuff and made her take pencil and paper and write down the next steps to do with my sister since she isn't able to remember what to do for herself. My mom told me she was so thankful I knew these things and that I was such a rock in the family. I laughed and told her I always thought I was the pitiful one! She said when it came to these things, I was so strong and could always be there for everyone to lean on. I felt proud to be able to do this for my mom and my sister. I hardly feel like I've done anything in my life for my sister.
During the motorcycle accident, she had a crushed pelvis and both hips broken. After the accident, she had an ectopic pregnancy rupture and lost an ovary and fallopian tube. Years later, she got pregnant and had a helacious 18 hour labor that ended in a cesarean. When she got pregnant again about 6 years later, I was working in a birth center and really wanted her to try for a VBAC. We knew the possibility was there she would have to have a repeat cesarean, but we thought we'd at least try.
One prenatal visit when I had to draw her blood, I poked her vein and made it spurt like I had never had happen before or since! Of course, she was wearing a white shirt and pants. I was so damn embarrassed and then as I tried to save the blood draw, I bruised her arm so bad, she could hardly move her arm for three days. I felt horrible.
When she went into labor, I was on-call the next morning and chose to stay home in bed. (!!!!!) I don't know what the fuck was in my head! She was at the birth center for less than an hour and was in so much pain she thought she was going to faint, so they took her in for a repeat cesarean. Wise. My niece weighed 9 lbs. 11 oz. My sister weighed 160 lbs. I still am so ashamed I didn't go to the birth center or the hospital for her birth. I cannot, for the life of me, figure out what I was thinking. I must have hurt my sister so much in that stupid action.
I remember, growing up, my sister bouncing off the walls when she got sick. She'd be walking down the hall and then down she'd go. It was just a part of who she was. It wasn't until recently that someone thought to ask if perhaps she might have a seizure disorder or something going on in her brain. Hmmm.
I will be so sad if my sister dies. I am so angry at her for so many things. I wish I had a relationship with her like I hear of other people having with their sisters... that I will never have. I don't know how to make things nicer with her because even when I reach out, she slaps my hand and I regret reaching out again. I miss her so much. I miss what I never had. I miss what I will never have. I am so sad that what I do know of her, most of it is here... pain and sadness. I only left out the drugs, prostitution, extreme drug wealth, street poverty, physical, sexual and emotional abuse and 2 divorces.
I want to hold her and make it all better. I want to tell her I love her.
I think I will find a way to do both.