Good Habits for Caregivers & Patients #2
“I am losing my hair, and I have a terrible rash. I have developed a hump on my back, I have gained 40 pounds, I can’t sleep, and I don’t even know who I am when I look in the mirror. I don’t look like myself and I don’t feel like myself,” said my wife, who had always been a petite, charmingly kind, and clear-complexioned lady.
She could not pick up our newborn son because of extreme muscle pain and muscle loss that accompanies Dermatomyositis. To add insult to injury, she itched all of the time because of the skin portion of this disease. A few months into this new reality, her proclamation that night jolted me out of my denial.
I sat there at my desk for another couple of hours after she went to bed. As my mind reeled, I put myself in her shoes. How would I feel if it were me?
Over the past 16 years of our Dermatomyositis journey, I have probably done as much wrong as I have right as a caregiver. But that night, I got it right. I put myself in her shoes and it shook me to my core. Awaking from the haze of denial, we moved into a new era and my wife regained the partner she needed.
During the next few years, her hair grew back; the hump (from Cushings Syndrome) went away; she returned to her normal weight; and she sleeps like a baby. She is a petite, charming, and determined lady…much tougher than me. I could go on for thousands of words regaling you with the difficulties she lives through and would never tell you about.
From time to time, I take a moment to put myself in her shoes again as she continues to live with this muscle and skin disease. Even though her condition is currently better than those first few years, she still struggles with the effects of Dermatomyositis. Doing this exercise reorients me.
May I humbly suggest this habit for caregivers, patients, and really anyone? Put yourself in their shoes. It will open your eyes and your heart.
Worth Repeating
Love everybody always.
-Bob Goff
