If you’re a fan of Westerns, you may recall the movie Open Range starring Robert Duvall and Kevin Costner. In one of my favorite scenes, their crusty cowpoke characters peer together over the rolling prairie during a typically sparse but profound conversation:
Duvall: “How long we been ridin’ together Charlie? “
Costner: “Nigh on 10 years.”
Duvall: “You know what they call that? A decade. A long time”.
For nigh on a decade now, I’ve figuratively been “riding the range” in the Black Hills of South Dakota with a chronic diagnosis of granulomatosis with polyangiitis (GPA, Wegener’s). Indeed, as anyone familiar with the disease knows, this is “a long time’.
I’ve encountered my share of bumps along the trail, each of which delivered an important lesson. I’d like to share three that may help you—especially if you’re in the early days of your journey with a vasculitis related illness.
Lesson 1: Speak up and advocate.
You, your spouse, a family member—someone needs to advocate for the care you need. Otherwise, you risk being left behind.
My wife, Linda, was in the examining room when we learned that I was suffering from Wegener’s. At the time, I worked as a forester in the Black Hills. Linda called the same day to set up an appointment with the nearest rheumatologist, who was 50 miles away, and was told the doctor could see us in one month. One month? Linda knew well the condition that I was in and one month seemed far too long!
Linda’s next call was to the Wegener’s Association (now the Vasculitis Foundation) seeking information, advice and support. They sent a packet of information, advised that I should to be seen as soon as possible and suggested several clinics to consider. Linda immediately contacted the Mayo Clinic in Rochester, Minn. The doctor’s nurse discussed my diagnosis and condition with Linda and said they could see me as soon as I could get there. Unfortunately, the clinic is 635 miles from our home. But, after making the appointment, Linda called to let me know that we were leaving for the Mayo Clinic in the morning.
Lesson 2: Make sure you are genuinely interested and willing to listen and offer support.
While visiting over a cup of coffee after church a friend asked, “How are you feeling?” With megadoses of cytoxin and prednisone flowing through my body I begin to explain that I’ve been recently experiencing a bit of pain. Before I could even finish my first sentence, however, my inquiring friend interrupted and began to describe his/her struggles with a cold. I listened intently, though admittedly I was chuckling to myself. While traveling home after church I mentioned to my wife that our friend was “suffering” from a cold. We shared a knowing laugh. We choose to turn these situations into humorous, positive moments. Which brings me to…
Lesson 3: Recognize humor and positive attitude as healthy healers.
On occasion an unexpected event in your life or an unexpected turn in the conversation occurs. I do my very best to see the humor. I believe that viewing these unusual events in a humorous positive manner may help us along towards healthy healing.
During our decade of learning to live with Wegener’s, Linda and I have encountered many ups, downs and changes. We continue, of course, to hope for remission and even a cure. Meanwhile, we each can strive to maintain a positive attitude and try to glean a little wisdom from the lessons learned on a seldom-traveled trail.
Source: By Jim Hoxie. Jim Hoxie is a retired forester living in Spearfish, South Dakota.