Photo of Iva RoeFebruary, 2002

Living Our Dreams
By Iva N. Roe
Retired President and Executive Director, WGA

Wally Van Dort, a Wegener’s patient wrote in the March 2000 Australian Newsletter, “Most importantly keep well so we can enjoy those dreams and pleasures in life that we strive for.”

I am a WG patient who has seen dark times and knows what it is to feel desperate about ever being able to be “normal” again. Wally’s words reminded me how important it is to remember that we had, and still can have, dreams! And it inspired me to write that I am now fortunate enough to be living one of my dreams.

Since I was very young I wanted to help people; and the interesting thing is that having Wegener’s granulomatosis allowed me to reach that dream.

I was diagnosed in January 1991 when my kidneys failed after years of sinus infections and severe flu-like symptoms for a month. My story is a long sad tale, like many others with WG, before and after diagnosis and three years on dialysis before I got my kidney transplant. But it was just that special experience, together with my business and professional background, which brought me to help Marilyn Sampson in her office as I was regaining my health after the kidney transplant.

My unique combination of skills and experience came together with the need for patients to talk with someone who understands WG. Marilyn’s work in starting the support group for WG patients and their families, and raising awareness of WG in the general public and the medical community, gave me the outlet for my dream, even though it all happened “through the back door” of my life.

Every Wegener’s patient has a history and a life before WG, though it may seem to be at a standstill sometimes while dealing with the disease. But those who have come to remission or “quiet disease” or whatever term works for you, can tell you that there is life “after WG” as well. Hang in there through getting the disease under control, but know that eventually there will be better days! And hang onto your dream (maybe with a few adjustments), or be open to a new one that excites you now, but believe in something that helps you get through each day.

I hope every Wegener’s patient will see how something good can come of the “quiet time” of reflection during recovery, maybe even learning something special about a family member, friend or caretaker that might never have happened under different circumstances.

From the vantage point of my age, I can look back and see many things differently now, that I had thought to be disasters when they happened. Isn’t life a great school for learning, when anything can be a blessing if we choose to look at it a new way? Every change brings a new look if we choose to see it differently. That must be why it is said that life is change, and when change stops we are no longer living.

When things look the blackest, change can only bring light. That light may illuminate the spark of a dream thought lost. I hope every WG patient will see something good come from what may now seem otherwise. It may even be your dream coming to life – grab it and hold on for the ride! To quote a TV ad line: You’ve got a lot of living to do!