The Hep C Grinch – You’re a mean one
The first holiday season after a Hep C diagnosis can make retreating to a remote cave sound like tidings of great joy. The Grinch stole Christmas, and now Hepatitis C is threatening to steal all your boozles and begaggles and whatever else that you held dear. Like the Hep C Grinch, retreat is exactly what I did the Christmas of 2010. My diagnosis was fresh in my ears and I could hear it pounding in my brain. It certainly obliterated the chorus of all those happy, healthy, non hep c folks who surrounded me.
It’s not that I did not want anyone else to have joy, it’s just that the music of life seemed to be fading to me. I practically pushed it away in my attempt to prepare to die. I was unable to work full time, trying to pay Cobra, and dealing with a mountain of medical bills. I remember budgeting $100.00 to spend on gifts for the entire family. The nights were endless as I roamed the house while my roomie slept peacefully. She had brightened every corner with Santa and angels, nativity scenes and shiny ornaments.
I journaled deep into the night. The darkened living room was quiet except for the sights and sounds coming from the television. Burl Ives’ voice was as jovial as the snowman that he was voicing over. I was curled up, feet on the coffee table, wrapped in that soft afghan that somebody special crocheted years ago. The Christmas tree lights put off a soft glow, illuminating the glimmering balls and homemade ornaments on the tree.
You’re with me, your eyes scanning the scene slowly as though capturing it on your own mental video tape. It all looks the same, but you know something is different. A lot of somethings are very different.
For one thing, that bowl of salted popcorn and plate of cookies have been replaced by air popped corn and some funky granola something or other that you tried to make from scratch. Your mind cannot help but drift back to the easier days. You remember the days when you could eat what you want. Your brain is a little unfocused as you drift in and out of random thoughts of the past and frightened thoughts of the future. That first year of living with a hep c diagnosis can bring out a side to you that you did not know existed. As your best friend, I have a few thoughts regarding how to make your days be merry and bright.
If I could wave a magic wand and make it all go away, I would be thrilled to. But life does not work that way. As a matter of fact, it sometimes seems that life works just the opposite way. The Grinch That Stole Christmas was a story of hardship and tragedy. In the movie, Jim Carey portrayed what can happen when life’s circumstances becomes too painful to bear. However, what the Grinch learned was that love and light can only be found within us.
No matter what our past or future was like, there is no more perfect gift than the present. So let’s take a look at our present. That large unopened box under the tree may be the best gift you’ve ever received. The one that contains untold mysteries of all of life’s treasures? Maybe it has your name on it. You know you’ve always loved presents, even if you pretend not to.
What is it that you’ve always wanted? Think back to when you were a child. What did you ask Santa for? Maybe it was a bb gun, Barbie doll, or a bicycle. What did you want to be? Maybe it was to become a fireman, a singer, a truck driver, a hairdresser, or a nurse. Did you dream of one day entertaining or helping others? Did you picture yourself as the bride in a wedding scene who married her Prince Charming? You may have pictured yourself sitting in your home surrounded by loved ones who were all laughing and sharing their lives; lives that you helped to create. You may have dreamed that your parents would be proud and your family and friends would admire you because of what you had become.
What if I told you that there was a gift for you right now that had everything you ever wanted? Imagine it for just a moment. What would be inside? For me it would be to have a family that were all supportive of one another and understood each other. The kind of people who stood beside you when times were hard.
I do not know what your family is going through right now. My illness has been very hard on my daughter. I ended up moving in with her when I was on treatment. My granddaughters helped to care for me during one of the weakest periods of my life. It was not always pretty. We were all hurting. My family and friends offered what assistance they could. But you and I know that this is a battle we have to walk through alone. Yet even though we were all tested, our love stood firm. Our understanding of hardship grew, and our faith flourished. My little granddaughters, and even their friends, grew used to seeing Nana on the couch through the holidays. Homemade cookies gave way to slice and bake. Extravagant gifts went by the wayside as we simply shared the sweetness of being alive and together.
Even though this is my 3rd year with the diagnosis, I still struggle with the changes. Yes, my body responded to the triple therapy of Telaprevir, Interferon, and Ribavirin. I am living hep c free with cirrhosis which is soo much more than I could have asked for that first year. But I’m still have a childlike heart at Christmas. I want to get that toy catalog out and dream that any special present I want CAN be mine. Don’t you?
The reality is that you can have everything you want just by looking into your present. Today is the only day that you really have control over.
This very minute your mind may be racing to the future with grim… or with hopeful thoughts.
It may be digging around in your past remembering the healthier days, or maybe some regrets that you have.
You can wrap your mind around the present and let your thoughts linger there. Perhaps the gift wrap has a few question marks stamped all over it. It’s still yours. And you are the only one who can open it.
You can be given all of the greatest gifts in the world; everything your heart desires. It is useless until YOU open the gift. It belongs to you. Your doctor, lab techs, pharmaceutical companies, family and loved ones cannot open it for you. See, I know that our dreams are a secret place for the most part. We might be embarrassed to share with others what we hope for, long for.
Sometime in the distant past we may have locked up many of our dreams so tight that we have forgotten what they even were. Think about it over this holiday season. Go ahead and write it down if you want to. Make it a Christmas list. Here’s mine.
Karen’s Personal Hep C Christmas List
More Love
To spend more time with loved ones, getting to know them
To live another year and get stronger
Fibrosis reversal
Make new connections on the internet
To pay off medical bills
Beat Liver Cancer
Get a liver transplant
I know that inside of me is everything I need to receive all the items on my list.
Love is a giving thing. A choice I make when I put others above myself. While I need to be selfish enough to get the rest I need, I also need to make more time for those important people in my life who are such energetic and bright shining stars.
I will live another year and get stronger because I will eat and walk and rest and be wise in my choices. I will see fibrosis reversed because I believe it is possible with healthy protein and a liver loving diet.
I’ve already met new friends on the net who are at all stages of Hepatitis c or cirrhosis. Every story is different, but we are all the same.
Those medical bills? I’m LOL because I have another banding for varices in January and this is an ongoing saga. But I have good insurance now and believe that I will have into my future.
I do not know if I will have the nerve to post this. It’s personal. But I think you will understand what I’m saying. Ah.. friends are nice to have. Thank you. A grown up Hep C Christmas list.
Hepatitis C may try and turn us into the Hep c Grinch. But when we think about the gift of our life, the gifts we have within us, and the gift we give to the world we have no choice but to open up our present. We are really the most blessed ones, because we are forced to look at our present while others can go about with no regard for health concerns.
I’m just wondering as I think about you today. What is in your present? Will you open it? It takes courage to look within. I think you’ll find that there is potential to have your best Christmas yet. You have everything inside of YOU to make your Christmas dreams come true. I’m pretty sappy sometimes, but it works for me. I’m going to hold a mental image of all of the hep c folks holding hands and singing Rahoo Hooray. We’ll invite the Hep C Grinch too, xoxo Karen:)
18 thoughts on “The Hep C Grinch”
Hi Karen! I’m so glad that Tina Willis introduced us so I was able to find and read this heartfelt and inspiring blog of yours. I love your positivity and all the good you’re doing to help others with Hep C. Your message about living in the present is beautiful and I think we all need to be reminded of this, so thank you for that. Wishing you a very happy holiday season filled with lots of hand holding, joyous singing and warmed hearts 🙂
Katherine Kotaw recently posted…Ol’ Blue Eyes Branding and Giving Thanks My Way
Katherine –
So glad you came by and joined in song! Yes, like brings challenges, but the human heart and mind are designed to overcome. I loved reading your blog about how to keep my little blog going! I just had my 1 year anniversary and have learned a lot fast. I’m glad to be able to draw from your experience and meet so many awesome people like Tina!
Thank you so much your sweet comment. Your gracious words made my day!
xo Karen
It brought me much joy to join in song with you, Karen! Congrats on your one year anniversary and thank you again for all you’re doing to inspire, motivate and grow the heart of any Grinch –Hep C or otherwise! 🙂 I’m so grateful to have met you. xox
Katherine Kotaw recently posted…Skate Your Story to Success
Katherine,
It’s kind of stuck in my head too! The ultimate story of love and redemption which exemplifies what this season means to so many! I though the part about the dog was relevant too, given the Grinch’s little reindeer antlers on his dog.
I’m glad we met to at this season of joy – regardless of our circumstances.
Rahoo Horay!
Karen
Karen, you never cease to amaze me by writing down my thoughts so well. Last year i was diagnosed at the end of november. I am finished with treatments now and will find out if i am “cured” in feb. This year i feel that i have opened this never ending gift. Thank you Karen!
Lora,
Wow. I had my first liver biopsy in November that first year so I know how it feels to hear all the news that time of year. I’ll bet last years holiday season was rough. It comforts us to know that we are not alone with our thoughts.
But look at you now! I’m so excited for you to be finished. If you have remained UND, you know it’s all good! What a wonderful year 2014 will be for you.
You know what I’m grateful for? You and all the other best friends. Living with stage 4 cirrhosis is no picnic. But knowing that the blog can help unite us in living our best life is so uplifting to me. I am thankful for your comment today.
xoxo Karen:)
Hey Karen,
I must confess that I’ve been in a funk here lately. I know the holidays are upon us but it’s only been three months since my best friend passed away and every little holiday thing that’s cropping up that reminds me of him has been really hard.
My gift this Christmas is to just be with your family and never ever let words go unsaid. I’m not about presents, we just were never big on that as a family. I’m just blessed that I’m here and I’m healthy so although there are so many people in this world that have bad diagnoses, I hope they can just appreciate the time they’re here. I know that I’ve never been seriously ill but I’ve lived with a Dad who has been ill my entire life so I do know what that feels like.
Just appreciate the time that we have and cherish those that are with us. That’s my wish for everyone.
~Adrienne
P.S. I see you met Katherine, she’s another wonderful lady.
Adrienne recently posted…How To Grab The Attention Of Your Target Audience
Adrienne,
I remember that we met that week of your loss. There will be an empty place during your holiday gatherings this year. I am sad for you, and also happy that there are many cherished memories. One of the things I admire most about you is the greatness of your heart. When you care deeply and share you life, I can tell that you always hold a special place. Your dad and now your friend are there and as things come up, you will smile and miss them. My heart will be with you this holiday. xo
You are fortunate in that the big gift giving didn’t dominate Christmas. When we get hooked into that, anything less can feel empty. But it sounds like you have always enjoyed the day and the love shared.
I’ve had my grandkids snowed in while their parents worked the last 2 days. It has been a healing and yet emotional year. I put up a tree. We went through old ornaments and made some crafts. I had given away boxes of craft making items when I was so sick. We improvised and made coffee filter angels and snowflakes. We spent cherished hours together. So your Christmas wish has already come true.
Thank you for everything. Am I gushy tonight? I’m sincere and you know it dear friend,
xo Karen:)
Hi Karen,
Ha ha… I couldn’t ask anything from Santa 😉 Well, we don’t celebrate Christmas dear. However, asking or wishing is something I tend to keep away from. Hence I guess I’m far too happy with what I’ve got even it’s not someone just happy to be with 🙂
As I look into other lives, I feel so fortunate to have wonderful gifts which I can’t replace ever Karen 🙂 You know, I have mom with me 😀 lol… No, I mean, I feel sorry for some friends who lost their moms, yet I feel so grateful for being able to spend more time with her. There’s more in my present 🙂
I don’t like to be repetitive but I always inspired by the perspectives of yours toward the life 🙂 I can’t agree more with you when you say ~ “You can have everything you want just by looking into your present”. I guess we most just busy crying over the past and overthinking about future. Even we know about the truth, yet we love white-lies to feel ourselves better. Isn’t it? 🙂
This moment I just wanna express how fortunate I am to meet you online and I’m grateful for your friendship and inspiration dear 🙂 Wish you all the courage and happiness!
I’m wishing you and your family a Merry Christmas and a Happy New Year, friend 🙂
All the very best for you in 2014 too!
Cheers…
Mayura recently posted…Monitor Your Website for Outages with Pingdom
Mayura,
I know you – celebrating life every day and just being happy. That is awesome. I’m happy that your mom is with you. My sweet mama passed 3 years ago and she is really missed by my sisters, brother, and myself. Family is everything, isn’t it?
From that perspective, I am happy to be alive this year. It was a joyful holiday for me with my daughter and granddaughters. The gift giving part of Christmas is the most fun with children to enjoy the presents. My girls are readers and we had a lot of fun with the new Kindle this year!
I’m really happy that you enjoy the blogs. You’ve been a very good friend to meet in this journey of building a website. Some of your ability is over my head, but I love the way you break it down for those of us who are just learning. I’ve been in bed for a couple of days and really need to get over and read about monitoring my website!
Wishing you more joy than your heart can hold in the New Year dear Mayura!
Karen:)
Thank you for putting your thoughts on paper , it’s is so similar to James story, we pray for all those who suffer to get tested and treated, James was told that after having problems with his last treatment , he will have to wait till the end of next year for something without RIBA , our Christmas gift last year was seeing so many be cured on Sovaldi and now this year on Harvoni, we are praying you get your gift Karen soon .
Debbie,
I’m so happy to see your comment. It makes me cry, but in a good way. I know what James is living with and admire him so much for hanging in there. It’s you who really touch my heart with your devotion to helping others. Especially James. You’re so faithful. My love and prayers are with you both during this holiday season. The Riba free will surely come out soon! Maybe this time next year, he will have less brain fog. Unfortunately, I still zone in and out. Maybe just the cancer? Thank you for your encouragement and support – on behalf of everyone.
Much love,
xo Karen:)
Karen,
I had a similar revelation a few days ago. An unexpected financial situation came up and at this time of year it multiplied my anxieties. What a bummer I told myself. Can we ever have a stress free Christmas? Then a calm came over me. Why worry this time. We’ve been blessed every Christmas before in one way or another, why let myself be “grinched” this year. So I relaxed and laid my head on my pillow knowing that the Spirit of Christmas was looking out for me and my family. My Christmas wish is that peace will fill the air. I appreciate you sharing your personal thoughts.
Randy,
I wish for peace and hope for you and your loved ones also. You’re right, we can have a stress free Christmas by letting go of those expectations that everything has to be just right. When I read through this (ignoring typos lol) and watched the video, I marveled once again at how the lack of food and gifts didn’t stop the “Who’s” from experiencing joy. Dr. Seuess was a wise man and this story surely grows our hearts with the telling year after year.
I too lay my head on my pillow and feel that it is the shoulder of God. It’s cool to see you find comfort there also. Blessings and prosperity on your household!
And heaven and nature sing,
xoxo Karen:)
I see this is dated last year, but this is my first time reading it. As always, an awesome and inspiring message Karen! I am going to post it to FaceBook now. Thank you for all you do and for just being YOU! Hope you have a Merry Christmas 2014 and a Happy and HEALTHY New Year 2015! Praying for you!
Peace
Pam
Pam,
Thank you so much for the kind words. Yeah, it’s one I cycle back out every year and find the message is still relevant. It’s good to see how we can grow and change in a year. It really is a season of love. That is a priceless gift. It is also the best one to receive.
I love you and your sweet encouragment for myself and others. Merry CHristmas to you and your loved ones.
Health and Prosperity to you this year dear friend,
xo Much love, Karen:)
Thank you for this wonderful, uplifting .recounting of last year. You have been blessed with so many of you list requests answere. After, 33 plus years with he c, cirrhosis, and cancer, I feel likewise blessed. Each day I wake up and get out of bed I am so thankful for cures. I too have had Tate treatment for cancer that wiped it out. Banding keeps my blood loss controlled. I just learned that I am not a transplant candidate…to many risks with my Von Will brands disease and I am not a good candidate for treatments due to heart irregularitued. This does not bummed me out…after 30 plus years I am just happy to be alive. This Christmas I put all December tests on hold and said I just want as normal a Christmas as I can have. Grandchildren, surviving son and family, good memories of our first son, and my beloved husband surrounding me. My wish came true…we will spend several lovely days at Jason’s home and even attend his church (where he is the pastor). We will set a place for Rick and each share a moment he brought us happiness and love. What more could I ask for? I feel blessed..Blessings gsthrringz to you and my love is with you alway
Sheila
Hello Sheila, you are blessed to have had HCV and wake up every morning. I am very happy for you. I am so sorry you are not a good candidate for a liver transplant. I hope that you have a wonderful Christmas with all of your family. What a blessing, your son is a pastor.
I am sorry about your first son and husband however I feel certain they were there with you and the rest of your family.
Blessings to you my dear, Dee
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