Special note: On March 13, 1997, I was diagnosed with leukemia. During that time, I wrote a book titled Dancing with the Diagnosis, Steps for Taking the Lead When Facing Cancer. It was published a few years after the completion of my treatment. In honor of the 25th anniversary of the diagnosis, I am highlighting parts of the book and the lessons I learned in this five-part series. I hope the posts will encourage and maybe even inspire. I welcome comments and conversations!
At the time of the leukemia diagnosis, I was in my last semester of graduate school, studying communication. I looked at everything through a lens of communication, and still do! I am an avid advocate for talking about talk. I love to declare intent, unravel conversations, and make expectations overt.
Excerpt from Chapter 11: Create Clear Communication With Your Caregivers and Support People.
We are not the only ones who feel a loss of control when the diagnosis is cancer. Caregivers and support people go through their own feelings of anger, helplessness, and confusion. In a sense, they dance their own dance with the diagnosis. They want what's best for us, but often have trouble figuring out what that is and how to deliver it. Roles are reciprocal: sometimes they need our help as much as we need theirs.
I wrote the Caregiver Contract with these thoughts in mind, to clarify needs and ease initial tensions. Used early on, it also establishes some healthy communication ground rules for you and your support team. The top portion provides basic guidelines for positive support. The bottom portion of the contract, our agreement- reminds us of our own commitment. This portion holds us accountable. We are active participants in all parts of our healing process.
All guidelines were inspired by real experiences. I made copies and distributed them to my caregivers. And then we'd talk about it. Effective communication is something that happens between people. It's not a linear event.
Caregiver Contract
Please don't be afraid of me. I am still the same person you've known and cared for; I just have a few new mountains to climb!
Please smile when you see me. Frowns bring me down.
Please ask me questions about my moods and feelings. It is not always correct to assume that I am sad, tired, mad, or depressed. At times I might be, but other times I am experiencing feelings o peace, happiness, and joy. Ask me how I feel and I'll tell you.
Please stay positive.
Please take very good care of yourself. You are extremely important to me.
Please gently ask my permission before trying to shift my perspective. Sometimes I am just not ready to look at the brighter side. I know you don't like to see me feeling low, but I need to travel through all my emotions instead of ignoring them. I'll let you know when I am ready for a new perspective.
Please don't ever give up!
In turn, I agree that...
I will never give up.
I will be open and honest regarding my feelings (as soon as I know what they are).
I will be an active participant in my healing process. When agreed upon, I will follow my doctors' orders and I will maintain a healthy mental attitude.
I will tell you my needs and attentively listen to yours.
I will keep my sense of humor.
I will practice clear communication with you.
I will always appreciate your love and support.
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| Original art from Dancing with the Diagnosis,2003 |