Over 25 projects to help you gain more insight into yourself, decrease stress, and change your relationship to your illness and pain into one of transformation, possibility, and hope.
These exercises are meant to be fun, to distract you from the pain of your disease and help you creatively explore your chronic illness journey. As an artist who has lived most of my life with chronic illness due to auto-immune issues, I rely on art for my own healing. It has literally saved my life. I have also had the opportunity to lead healing art workshops for chronically ill patients for 20 years, working with individuals who suffer from Parkinson’s, Cancer, and other diseases.
I could hear my sister talking to me in my left ear, “Hang on Stacey, the angels are protecting you, you’re going to be okay.” But something had gone wrong and darkness started to envelop me. WAIT I’ve had a near-death experience and that was all light! What was this darkness? So much was going on around me and I started shaking my head, no, no. I heard a nurse above me say “I think she wants you to stop talking.” and I started shaking my head “yes”. I needed to concentrate.
I wasn’t ready to leave.…
I had been dealing with chronic illness for most of my life with 20 surgeries in the last 25 years. When I was ten, my doctors discovered I had a hyperthyroid that they couldn’t control with medication. I drank the radioactive iodine they prescribed, which destroyed most of my thyroid. This began my path with medication in hand and doctors’ appointments for life.
When I was thirteen, I started to have horrible cramps, which I was told were normal. It took me 10 years to get the correct diagnosis of endometriosis. Doctors told me my cramps were “normal” and part of life, even though the problem affected my life for 3 weeks every month, leaving me feeling exhausted. I had a near-death experience when I was 19 and it changed the way I have looked at life. I felt the love of God (whatever you call him or her) and I understood my connection to EVERYTHING. I studied many religions and philosophies until I found what works for me……which is LOVE.
For the next 15 years, I had one surgery almost every year, on or around the 4th of July and spent a lot of other days in the ER and hospital rooms.
At age 23, thinking I had back pain, I went to my chiropractor, who immediately sent me to the hospital. I was jaundiced (yellowed skin and eyes signaling serious liver issues). After stabilizing me in a hospital room, they found I had no insurance and kicked me out. My (then) husband drove me to Highland Hospital in Oakland, where I spent my first time in a hospital bed. I had emergency surgery on the 4th of July weekend (many nurses & doctors volunteered to come in) and in the middle of surgery, I was awakened and shown an x-ray of my liver. The doctor pointed to a spot and said: “See this, if it’s cancer you’ll have a year to live, if it’s not, then you have a rare disease.” And then rushed me back in and put me back under anesthesia. A day or so later, I was diagnosed with a rare autoimmune liver disease called Primary Sclerosing Cholangitis (PSC), which is related to Crohn’s.
I was diagnosed with PSC at 25 years old, about 10 years later, after 13 surgeries, I went into end-stage liver failure. I had double coverage by health insurance (Blue Shield & Cigna) and had been with them for many years. But after 2 ½ years on the list, at one appointment with my Stanford doctor, he shook his head and said “if you don’t get out of California you’re going to die waiting on the list.” I was 39, sleeping almost 20 hours a day and beginning to accept I might not make it.
I have a loving, crazy, dedicated family! In record time, they researched the best hospitals, how they rank in liver transplants and the percentage of successes. I’m sure we have Sherlock Holmes’s DNA in our blood! They found a location for my best chances of surviving: Mayo Clinic in Jacksonville, and after an application and many tests, I was accepted.
But then my insurance companies denied me.
We fought them with lawyers and a patient advocate. But the fact was that at the time, I was 39, had 5 previous surgeries and their numbers didn’t work out in my favor. To me, I had forty more years to live. To them, I was just a statistic. As I was running out of options, my Dad saw my Social Security card sitting on the table and asked if we’d looked into Medicare. We hadn’t and it was my last chance.
I applied and was denied.
But we weren’t willing to take “no” as an answer. I went down for a face to face appointment so they could see I was dying and I was accepted. My family got me to Florida and after almost 3 years of being on the transplant list, I got THE CALL on July 17th (if you are a transplant recipient, you know the feeling that comes with this life-saving phone call).
Unfortunately, my struggles didn’t end there. Because of previous surgeries and lots of scar tissue, as they were finishing the transplant, I started bleeding to death. But, because I was at one of the world’s best hospitals, they were able to save me. I ended up needing 42 units of blood that day alone, which would replace an adult female’s full blood volume 7 times. That is when I heard my sister’s voice in my ear. I sensed I was being pulled away and was trying to hang on. As I said, I wasn’t ready to leave…I have a message for others with chronic illnesses. You can use art and beauty to transform an otherwise painful experience into a transformative one. Just like I did.
So I stayed. My recovery wasn’t easy though. Many of my organs went into failure. I had a tracheotomy and was on a ventilator. I developed multiple infections and spent over 2 months in ICU. A few days before I was going to be moved to a regular hospital room, I slipped and fell, fracturing my left pelvis in two places. I was one of the only patients in physical therapy that said “Can I work more?” I wanted out of that hospital!
I have had amazing doctors and nurses that have been like family to me. I have also dealt with years of trial and error, side effects, testing, medications, diagnoses, and malpractice. One time a kyphoplasty (a vertebra fracture procedure) went wrong leaving me with a chunk of cement in my right lung and on oxygen for months. I have had doctors ignore symptoms until my scars busted open with infection. I had a respiratory nurse that was so focused on the protocol to wean me off the ventilator that she did not acknowledge or seem to want to help me through severe panic attacks as I gasped for breaths, feeling like I was drowning and dying.
I was diagnosed with depression, panic disorder, and PTSD (who wouldn’t after what I’ve been through!). I also live with chronic pain due to other autoimmune issues. Some days I do great and other days I don’t but the constant is that art has always helped me. While sick in the hospital, a dollar store coloring book and cheap crayons were all I needed as a welcome distraction. I could create a colorful world with little effort when I couldn’t do much. Finding so much relief in this process, I began creating my own projects, like a “Monster” that I could take all my anger out on or a “Path” so I could look towards my future. I even made my own hospital gowns before my transplant!
I was given a second chance at life when I received an organ transplant 10 years ago when I had just turned 40. I turned 50 the year I finished this book and I am so grateful to the family whose gift I can never repay, except to live fully. This is why I created this book- it is my legacy.
I’m still thankful for the first voice I heard when I was scared: the voice of my sister. I hope to be a voice whispering in your ear to continue on and persevere.