April 8 is the birthday of Dr. Harvey Cushing, the doctor who put a name to what would eventually be called Cushing’s. Here is a tiny bit about Dr. Cushing that we have shared in the past.
Leading up to today, we ran a small contest with membership and Facebook friends to submit original art in any media that touched on one of several categories related to the Cushing’s journey. Below are the entries. We are connected by the disease / syndrome and related symptoms, but the way it touches each of our lives is as different as our fingerprint.
We are grateful to these patients for sharing personal glimpses into their lives and how they struggled, adapted, and pushed through a true “worst of times”. And we’re happy to announce they all win a prize!
Wendy Van Camp, Orange County, CA
“They say when you place a frog in cold water and slowly raise the heat, you can boil the frog alive and it won’t realize that something is about to kill it because it comes on slowly. My body was boiling, but I did not perceive that this was abnormal. I thought that staying up late at night to write my novel was my choice, not due to cortisol levels keeping me awake. When I started to need a list for grocery shopping, when I never needed one in the past and that thinking itself was slower, I put it down to my age and natural processes.” Read more…
Rebecca Angel Maxwell, [email protected], Albany, NY
“It’s like a cage, Mommy,” my daughter lamented at the daily regime to keep herself healthy amidst a long-term illness. She had refused my suggestion to add yet another “to-do” item on her checklist. She tried to explain what it was like for her. I didn’t understand then. I do now.” Read more…
Ambushed by Gratitude
“When we finally entered the right building on the grounds of the National Institutes of Health in Bethesda, the sight of patients and doctors from every corner of the world had an immediate impact. Seeing very sick children hooked up to medical devices and being wheeled around the hospital lobby by their families, we were reminded of how lucky we were to be where some of the best genetic research and medical care in the world was taking place. Under the guidance of Frances Collins, the NIH’s inspiring director and doctor who presided over the Human Genome Project, everyone around us seemed to understand they belonged to one big human family. My rare genetic disease was just a small hiccup in the universe of the NIH.” Read more…
Jennifer Bacon, [email protected], Strawberry Plains, TN
“There would be a couple elements in my journey I would change if I could. One would be for it not to have taken so long to get a diagnosis but the most important thing I would change would be not doubting myself. I knew something wasn’t right but I let others comments like “that many things can’t be wrong with one person”, “I think you just want to be sick”, and many other comments made me doubt myself and that something wasn’t really wrong physically. I don’t think they were said with cruel intentions but they were cruel to the inside of me who was starting to question everything about myself. I just want to go back in time and take that girl looking for answers that was so scared, I just want to take her by the hand and encourage her and to tell her to believe in herself and to not let the comments penetrate to her heart.” Read more…
Catherine Matthies, Victoria, Australia
“If I had to choose one element of my journey to change, what would it be, why, and what would I do to change it?
The answer to me is simple. Recording. Journaling. Documenting.
Although I am a huge reader, I am not as consistent in keeping a record of the things that happen in my life. I don’t keep a journal and any entries in my diary are impersonal- I keep record of important dates and appointments, with the occasional reminder when something needs to be done urgently.
When I look back now, I really wish I had thought to write down my thoughts and feelings on each of the things that happened during my Cushing’s journey. I have recorded the dates of my tests, medication changes and surgery, but have not included any personal thoughts as to how I felt at the time.” Read more…
Alyssa Agee, Spokane, WA
“Straddled between two transsphenoidal surgeries—one failed and a second scheduled for six weeks from now—I have pulled my mammoth body out of bed to shuffle along the trail by our home. It is one of those dog days of summer where the heat settles on you like a blanket and you pray for just the smallest breath of air. After the meager two blocks to reach the trailhead, I am panting. Rivulets of perspiration slide down my spine, pooling at the elastic band of my shorts. This was a bad idea, I think; I don’t have the stamina to get back to the house, much less trek any distance on the path ahead.
I forge ahead stubbornly. It’s an excruciatingly slow shuffle of one foot dragging along the sidewalk to rest just inches in front of the other. My chest is pounding, and already I feel the familiar stab of pain in my lower back. Around a gentle bend in the path a garishly bright orange adirondack chair comes into view.” Read more…
Samantha Boerst, Cyclical Cushings, Pituitary surgery Sept 8th 2016, Currently having a reccurence,and fighting for a BLA April 2020
“You may think monsters aren’t real
Oh but dear, here’s the deal
There’s a little monster you see named Cushings
and it’s inside me
One day I wish I was free and this monster would let me be
I had two monsters you see but only one was living inside me.” Read more…
CSRF was granted permission by the individual creators to share these pieces and does not own any of them; copyright remains with the individuals.