Start or Join a FUNdraiser! Join our Mailing List



Writing: A Lifeline, by Laura Bradbury

PSC Partners Seeking a Cure

As you may know, two years ago life served me up my mid-life crisis on a platter. It came in the form of a phone call from an insurance company who had just performed medical exams on Franck and I for life and disability insurance.

“Ms. Bradbury?” the woman said. “I’m calling to inform you that your application has been denied by our underwriters.”

“There must be a mistake,” I said. “I’m perfectly healthy.” In fact, the reason Franck and I applied in the first place was because we were feeling so g****mned self-satisfied with our lifestyle since moving back to Canada from France. It included a lot of running, freshly caught fish, and an abundance of kale.

“There’s a problem with your blood test results,” she said. “You’ll have to take it up with your doctor.”

Two months, many sleepless nights, countless blood tests, an ultrasound, an MRI, and a liver biopsy (let me tell you, those are a gas) later my gastroenterologist sat Franck and I down in his office and diagnosed me with PSC, also known as Primary Sclerosing Cholangitis. It was a very rare autoimmune condition, he said. It was poorly understood, he said. It was completely unpredictable, he said. There was currently no treatment or cure except a liver transplant, he said.

What did I do the day after, when I could barely get out of bed due to the weight of the diagnosis that was draped over my body like a lead blanket? I stumbled downstairs, turned on my computer, and I began writing “My Grape Escape.” After writing for a few hours, I picked up a pen and scribbled in capital letters on a post-it note, “F*CK YOU. I’M NOT DEAD YET.” Maybe it was a message to my PSC, maybe it was a message to life…to this day I’m still not entirely certain. Anyway, I stuck the post-it to my computer screen where I could see it and kept writing.

I wrote on days when fear felt as though it was devouring me from the inside. I wrote on days when I felt sure that I could not live with the uncertainty of my future for one more second. I wrote on days when I saw all my friends and family through a veil of anger, wondering, “Why me and not them?”

My writing does not stop the progression of the disease – nobody knows what can do that or if it is even possible. It does, though, give me a lifeline on the darkest days.

My writing distracts me and helps me daydream of something other than bile duct cancer and liver transplants. It makes me grateful for the incredible life I have lead so far. It reminds me of lessons life has taught me in the past and that I need to remember now. It allows me escape in my imaginary world. It gives me a way to contribute to PSC research (10% of all of my royalties are donated to PSC Partners for this purpose). It also connects me with the world through my readers and other writers.

Most of all though, it allows me to flip the metaphorical bird at my diagnosis. There is nothing as defiant or life affirming as the act of creation. The words I have written are out there now and only world oblivion can erase them.

Yesterday I met up with a new doctor for my PSC, one who finally seems to be an expert in the subject and who was the first to offer me A Plan. As much as this was a huge relief, he was blunt about the steeplechase I will have to run in order to beat my PSC.

He confirmed that my disease has progressed to the stage where I have a cirrhotic liver (without any of the fun that heavy drinking writers like Bukowski and Hemingway had getting there, which is a complete pisser). He hopes to maybe squeeze “one to three years” out of my current equipment, but a transplant is definitely in my future and sooner rather than later. That is, if I can pass the rigorous testing that ensures I could survive the operation in the first place. That is, if (hold on to your pants here folks, because this almost scares mine off every time, and my underwear too) I can dodge the bullet of bile duct, liver, or gallbladder cancers that PSCers are far more prone to than the general population. I have heard this same information from many other doctors in the past, but the harsh realities of my PSC shatter my soul every time. I walked out of the hepatology clinic dazed anew with terror and wondering how I was ever going to survive the next ten minutes living with this cruel disease, let alone the next ten years.

Yet what did I do first thing this morning when I woke up feeling as though I was trapped in a nightmare I couldn’t escape? I started composing this post in my head and set a goal for how many words of My Grape Village I wanted to edit today. Now, I am at my computer. Writing. Creating. Defying. It’s all I can do but you know what? It’s actually a lot.

3 thoughts on “Writing: A Lifeline, by Laura Bradbury”

  1. Cindy Rogers says:

    Dear brave Laura, I am reading this post because I read Rachel’s that you may be undergoing a transplant right now. My heart, my thoughts, and most importantly my prayers are with you. My husband did not make it to transplant almost 12 years ago, and even though I did not find PSC partners seeking a cure until I was looking for a place to send memorial donations, I will remain a monthly donor and supportive friend to their efforts. What a blessing that group must be to PSCers – it was very scary when you’re going it alone because as you said, it is not a well-known disease and very unpredictable. Tom was, like you, shellshocked and depressed at times after receiving the diagnosis and understanding the gravity. He was the human resources director at George Washington University Hospital and medical center and he was excellent at his job, he had worked hard to get there and loved it. He had just been promoted to that position three years prior to his diagnosis. When he had to stop working it was devastating until we picked out a new Springer spaniel puppy that he named Gabriel, I think knowing that he would have to be my guardian angel someday. Gabe is still here, at 14 1/2, but has himself been dealing with Cushing’s and a thyroid problem for over a year. I keep wondering when Tom will get him back again. But Laura I want to tell you that for most of his four and a half years of illness, after going through the stages of grief, Tom inspired me and showed me and a lot of others how to die as well as live. Tom’s rock and anchor before diagnosis was his faith in God and the sacrifice Jesus made for his sin. It makes all the difference in the world when any crisis comes. He knew he would be good here and even better not here . God never promised that nothing bad would ever happened to us, just that He will always be there and we have found His promises to be true. His love never fails. Romans 8:28-39. I moved from the D.C. area to Asheboro NC several years ago to be near my daughter’s family . Shortly after I purchased a home, I found out that my neighbor who lives two doors up has PSC, I found out when he was recovering from a hip replacement. I found out when he was recovering from a hip replacement. His disease appears to be dormant, he was diagnosed over 10 years ago. How incredible is that? God doesn’t waste anything. My knowledge of the disease how incredible is that? God doesn’t waste anything. My knowledge of the disease allowed me to let him know about PSC partners, and I know I can be helpful and a resource if things change. May your journey be an inspiration to many, may your spirit be awakened to soar with strength, hope, and joy in all circumstances, and speak LIFE loudly. God bless you today and always lovely Laura.

  2. Barbara T says:

    There is no way I can adequately follow your beautiful post or Cindy’s eloquent reply. MY heart and my prayers go out to you all — as a PSC’er I was able to laugh and be inspired by what you both said. Thank you both for being there for the rest of us — and yes – to Laura — on this day of your re-birthday may it all go well — looking forward to many future celebrations of this day.

  3. Emily says:

    God bless, Laura. And God bless Laura. My son had a living donor transplant two months ago and it was not a breeze. Yet there is hope with this transplant. There is now improvement with this transplant. The challenge of the recovery is daunting and needs more patience than ever before. Find that patience in every minute if you have to. Two months in, Dan is looking and feeling so much better. The incision that took so long to heal is almost completely healed. Patience. The exhaustion from the PSC and then the surgery is gone. Patience. The bone chilling cold for so many years is gone. Patience. And to your caregiver, who will bear the brunt of your meds’ side effects and post surgery neediness…the Dr. Jekyll and Mr. Hyde moments every day…PATIENCE. It is for now, not forever. Even if you are religious, pray to the power that is and know that those of us who understand are doing the same for you.

Leave a Reply

Your email address will not be published. Required fields are marked *