My Autobiography is Still Being Written
I’m writing to share my story about why The Denver Hospice is so special and to demystify and encourage others to look into art or music therapy because it has meant the world to me.
When you walk into the Inpatient Care Center at Lowry, you’ll see two masks I created that now hang on the wall behind the nurses’ station. One is called “Pain and Hope,” and the other mask is called the “Unfinished Autobiography of a Hospice Patient.” As the first patient to be involved with the Mask Project, I wanted to say that while we may be on hospice, we’re not dead yet.
You see, I’ve been on hospice before when my prognosis was grim. I’ve been near-death before – several times.
I was born with Gardner’s syndrome which is caused by changes (mutations) in the APC gene, a “tumor suppressor.” Mutations in this gene lead to uncontrolled cell growth, polyps, tumors and cancer which I now have. I was born with benign tumors. At 8, I was told I wouldn’t live past 12. At 14, I had tumors in my jaw preventing me from eating. Then, I was told I wouldn’t live past 18.
Life with this rare condition has been difficult and unpredictable.
In March of 2016, my kidneys were failing, and I was sent to The Denver Hospice’s Inpatient Care Center. Truly, the care and compassion I received from everyone at The Denver Hospice was surprising. Not many can say they’ve experienced hospice from different providers, so trust me when I say that the staff of The Denver Hospice are excellent. They take time and effort to know you. My care is personal, and I know my day to day life is better now because of my care team.
This is another way The Denver Hospice is unique – the medical team wants us to provide input in our own treatment!
Most of the time doctors or therapists say this, but they’ve already decided what needs to be done and they just want to make sure we will agree. These nurses and doctors acknowledged my 30 years of study, research and treatments and have true conversations with me! I feel part of my care. Only truly expert medical professionals are confident enough to engage patients in their own care.
Not only did they understand the complexity of my disease and cancer, they helped me manage my pain AND gave me an outlet to express myself.
While an inpatient, I saw a poster for their Mask Project fundraiser, and I asked if I could contribute. They were so helpful and encouraging! Friends and staff brought six bags of materials. Now, once a week, I receive a visit from Aga, an art therapist and bereavement counselor with The Denver Hospice.
I probably wouldn’t pick up my paint brushes without Aga’s gentle encouragement, because I’m tired a lot. It can be hard, but once I get started, it is the one area where I can process my life and what’s happening.
I believe that art or other creative therapies should be offered to every patient. It is the one part of my hospice team that is not about my constantly declining health. In my case at least, art therapy is equally important for my health care. I can’t even imagine where I’d be emotionally or mentally without Aga.
Sometimes we sit and talk, or Aga gives me an art prompt or technique to try. I’ve become so isolated as my disease has progressed, and I have no family to count on. From day to day I don’t know if I’ll have the energy to move or go out. It is hard to keep up with friends. Art therapy gives me some of the control back that I’ve lost with this illness. It is something tangible that I can do that isn’t about death.
I’m not waiting to die. I’m living. I have inner peace and that is such a blessing. My autobiography is still being written.