Friday, January 7, 2011

Holidays for people with Hep C (or any chronic illness)

I want to begin by saying I truly love Christmas. My favorite things are cooking, baking those once-a-year special cookies, having my family together and giving gifts. I think many people expect too much from the holidays; they crave that feeling we had as children to wake up on Christmas morning and find magic. Those days are over, but for me (and I suspect for you as well), the best part is giving gifts that delight a person you love. For me that's as satisfying - even more so - than trying to recover the Christmas magic we experienced in our childhood.

But Christmas is also tough and pressured. Single parents alone on Christmas day because their children are at the other parent's home; families ravaged by poverty, addictions, a loved one in prison and those who have no homes or families to go to. I think and pray for those for whom Christmas seems to bring a sense of sadness and grief; and...I try to do something nice for people I know who are struggling.

For a person with Hep C, there is an extra burden, especially for us who are parents. We dream of this idyllic Christmas in which everything goes perfectly and we (at least I) tend to forget I am ill as I plan for the holidays. After seeing the specialist on the 21st I was reeling, and I knew I had to step it up - a lot - to get the outcome I longed for. Those of you with grown children who are out on their own will understand of what I speak; kids move away, become adults and while they all love one another deeply, they may not get along as well as when they were growing up. They may not have much in common, and we parents tend to forget they may not be best friends. Don't get me wrong; my children have a deep love and connection and would do anything for each other. But it's not all chocolates and roses - they have disagreements, differing world views and have grown apart.

I think when we are ill, we put too much pressure on ourselves to make things special and fun. When our illness is terminal, time seems so precious and we want it to be a series of magic "Hallmark" moments. I am no longer able to go out sledding, go to the movies or enjoy a nice hike in the woods which makes it a challenge to find things to do as a family. This year I planned a scavenger hunt, we held a pool tournament and watched old family movies and a few new releases. I made that "wow" Christmas dinner, I put extra thought and love into gifts and woke up every morning determined to put on my best "I feel good" facade. And, I pulled it great cost to myself.

Did everything go well? NO! Our kids fought - one disagreement was especially bad and will never be forgotten I'm afraid. My relationship with one child has been permanently scarred by my illness (this child was living at home through both rounds of chemo), and displays a great deal of hostility toward me and the energy I expended wore me out. I am still not recovered, and I've cried a bit every day over what a failure the holidays were. Yes, there were a few wonderful, loving moments but overall it was horrible, and I am not exaggerating. It was probably the worst Christmas I've had since I've been a mother. I simply tried too hard to force something that wasn't natural and there's always the big elephant in the room: MOM IS DYING OF HEPATITIS C, which becomes more obvious as I've lost so much weight I hardly recognize myself and my fatigue is hard to hide when black encircles my eyes on a continual basis.

I've always been an over-achiever and have high expectations of myself, so it's hard not to feel that I've been a failure. I'm really struggling, but I know what I need to do and I'm doing my best. I happily said goodbye to 2010 (one of my most difficult years) and I'm hoping 2011 is an improvement. And, if there are any of you Heppers out there who have holiday suggestions, I'd be glad to hear them. I've put Christmas behind me and I'm moving forward.