For much of my life I've been one of those people referred to as "people pleasers" or co-dependent" whatever the term of the day happens to be. In my, and all caretakers, defense most of us are oldest children who came from homes where we needed to take on responsibility or at least learn some really clever coping skills at an early age. I've had more therapy than most people and even went on to earn my Masters degree in Counseling so I've made a little progress in "setting boundaries" and standing up for myself (that learned behavior runs pretty deep, my friends). Having this disease and being on treatment is really challenging my growth in that area.
First of all I think it's really difficult for people who haven't been through this to understand the toll it takes physically, emotionally and cognitively. I have been accused of exaggerating, I've been told that if get out and exercise more I'll feel better (this is true but within limits) and, probably worst of all I've seen the disappointment in my granddaughters faces when they want me to do something like go to the park and it's 90 degrees with 90% humidity and I know I just can't do it. The other day in just such a scenario I had a bittersweet epiphany.
When I was growing up my Maternal Grandmother had cancer. In those days treatment was much less successful and usually involved a lot surgery. I remember seeing my grandmothers belly, criss crossed with scars where she had been sliced open again and again as the doctors fervently chased the cancer throughout her body. It seemed to be always one step ahead of them. There were times that I just wanted to cuddle on her lap and smell her perfume and feel the softness of her cheek against my face, but wasn't able to because of a recent surgical scar. Or times I just wanted her to come outside and play or walk with me and she couldn't. Fortunately it wasn't always that way, I have many fond memories of going with her to the small town one room library where she worked on occasion. Or going to service in the simple white clapboard Congregational Church. I even remember times we'd all drive down to East Beach and spend the day at the ocean, Granma sitting under her big canvas and bamboo sun umbrella.
Anyway, back to the epiphany; my granddaughters had come up with a plan during a short walk to stop at home, pack up a picnic basket and walk down to the nearest park for an outdoor lunch and a hike along the river. I wanted to go, I really did, but I just knew I couldn't. I was already overheated, nauseous and aching all over. I felt so sad at the loss of the opportunity to do this with them my eyes began to tear up and at that moment it was as if I could feel Granma, sitting alone in her dark living room after I'd gone out to play alone because she couldn't come with and I know that at that moment she was feeling the same sense of loss, remorse, guilt and sorrow.
I have never resented her for not being able to do something with me. Part of it was my own mothers gentle explanations of what Granma was going through, and part of it was Granma herself making the best of the good days and even the not so good days. I never for one moment felt that she didn't WANT to do the things I asked of her, and I never for one moment doubted her love for me. Now I pray that I can have the strength and faith to do the same for my Granddaughters.
© 2010 Jennifer Hazard
Hello Jenny. Saw your blog after someone posted the link on FaceBook. I too have 11 grandchildren. I have had Hep C for I don't know how long. I am 55. I have had 2 liver transplants and I have had several rounds of the treatments going back where they started in 1996 with just the intron A doing shots 3 days a week. I did the combo with peg intron, and riba. and also did the peyasys with the rib. I am geneotype 1A. I had 2 transplants within 9 months, and am now almost 2 years from my second transplant. I will tell you this, the weekend before my first transplant, (by the way I worked up until they called me for my first transplant)I went with my daughter and her husband with their 4 kids to go ride the Polar Express. We walked around the Amish country stores, stayed the night at the hotel and the Saturday night we went on the polar express. I would not trade the experience even though I was so swollen a woman asked me when my baby was due..LOL I laughed and thanked her for thinking I was young enough to even get pregnant (I was 52) I came home on Sunday and had my youngest(at the time) 1st birthday celebration. Everyone had gone home when I got the phone call at 8:30 to be at the hospital at 11:00 pm. I had my first transplant on Dec 10, 2007. Came home and celebrated Christmas with all of my grandchildren even though I could only sit on the couch and just smile as they opened their presents (I had done my shopping early just in case I got a call for my transplant). After the first one failed, I still did not let the disease get me. I had a bile bag on my side, but that August I went to the zoo with the kids, went to the State Fair, and even drove 5 hours to go to my family reunion over Labor Day Weekend. On Sept 16th I was admitted to the hospital is final stages of liver failure. On Sept 24th they called the family in, my heart rate had dropped to 27 (yet I was sitting up talking to them) and they transferred me to intensive care. My family was told I only had days left if a liver did not come through. On the 25th evening the nurse came in and told me that my dr. was working on a liver..they may have found one. The next morning I was in surgery, the next hurdle was to have the strength to make it thru the surgery. I had kept up my core strength exercises, and nutrition played a big part in my overall strength and health. I survived the surgery, but then 3 days later I had to go under again due to another blood clot in the portal vein. I had a rough time, but I refuse to let this disease run my life. I run my life with the disease, but it will not run mine. Stay strong and yes I do have my limits. Recently I went to a Reds baseball game when it was over 95 degrees outside and I had trouble but I made it. I go to my grandson's football games and recently I took my kids to a festival that had a concert and Blue Oyster Cult played. Felt like I was 17 again. Please if you want to contact me I am on FaceBook.
ReplyDeleteEmma,
ReplyDeleteWow this disease has really taken you down some rough roads; you are clearly a very courageous and strong woman. So it's been 3 years since your transplant I guess that's a good sign that it was a good match. I don't know all that much about transplants although I do have a friend who had one about 15 years ago.
I'm always encouraged to hear other peoples stories of courage and survival and I think its important for our stories to be told both to support one another and, very importantly, to help raise awareness in the general public.
I couldn't find you on facebook, several people have the same name, but if you send me a friend invite then I can add you.
Hope to talk to you soon,
Nanakoosa/Jenny