I left off about to tell you how I met the woman who became my wife.
It was a church prayer meeting. I was new there. In walks this attractive woman. I gave her the “once over” with my eyes. Then I noticed she had a slight limp. “Oh,” I thought. “That’s a shame! I doubt she’ll be able to go hiking with me!”
Well, I was right. Although she gamely tried. She couldn’t hike.
But…as my spirituality grew, I found her to be a very spiritual person. I learned (and continue to learn) a lot about compassion and forgiveness from.
After a number of group outings in which we kind of “paired up,” we finally met at a coffee shop and laid it all out on the table. We “confessed” that we had feelings for each other, and at this stage of the game, it was silly to “beat around the bush.” I had PKD. She had a bad leg. Could we continue the relationship which had to lead to marriage or not? I knew that hiking would not be a major activity in my life for too much longer. Would she be willing to accompany me on my PKD Odyssey. She said yes.
We continued to deepen the relationship.
We took a Spiritual Development course together.
Eventually I was baptized into the Roman Catholic Church, (with much fanfare, I might add!).
Right after that was when I experienced my first (and fortunately, only) burst cyst.
Eventually, she called the PKD Foundation, and spoke directly to Dan Larson, who referred to a kind gentleman who we telephoned. This man told that he had been on dialysis and was living ” a full life.” He even played softball!
This gentlemen was very encouraging!
That was quite a demonstration of support for me by my girlfriend. It obviously brought us closer.
Four months later we were engaged,and on April 16, 1988, one year after I was baptized, we were married.
As for me, the burst cyst left me with periodic episodes of hematuria, but for the time being, nothing else.
I hope this part of my story will encourage those who may feel that because of their disease, they can’t get married.
As it happens, most of the active members of the Long Island Chapter of the PKD Foundation are (or were) married.
My Odyssey will be continued!
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
Does she have any sisters?
Hi, James!
As a matter of fact, she does!
My sister-in-law is 71 and is still working! And still married after 46 years!
Her “window” of possible donation is probably closed though!
Sorry!
Peace and Blessings!
Coach Richie Perl
I’m actually kinda curious how you decided to convert from Judaism to Catholicism. Purely curiosity. I’m an INTP; we wonder about things, and like knowledge for knowledge’s sake.
I miss hiking, myself. But then, I miss a lot of things that I no longer do, not directly related to my PKD. Some, not even indirectly related.
While spirituality has never been my personal strong point, I must confess that if I think long and hard about the life that I’ve enjoyed for nearly 54 years it has truly been full of very interesting moments that I can chalk up to ‘fate’ or some sort of divine intervention. First….I am married to my brother’s best friend….Jerry and I know each other for more than 40+ years. We were ‘friends’ until the day that I wrote him a letter while away in college and he answered it. Now mind you, he had ignored 2 prior notes, but answered this one. My father had told him that I had broken up with the guy I was dating….he had recently broken up with the gal he was dating for several years. So, was this timing, or fate? I suppose timing is important, but since several things had to line up just right for Jerry and me to connect, I tend to think it was fate.
Since day one, I guess you could say that Jerry and I fulfilled something in this great universe of ours to become soul mates. We have spent our lives loving and respecting one another and have the uncanny ability to finish each others’ thoughts. He is the man who came undone when the doctor told me I had PKD. He is the man who offered a kidney to me on the spot. He is the man who refuses to let me go to dr. appt’s without him. He is the man who looks at me crosseyed if I take a day ‘off’ and don’t wear any makeup and fears that I may not be feeling well. He is the man who has changed business relationships in our personal lives to make certain that those whom we deal with understand PKD and support our efforts to find treatments and a cure. He is the man who has run our golf tournament and who has grown this event into one that has raised about $500,000 for the PKDF since its inception. He is also the man who loves me unconditionally….my life is wonderful because of this beautiful man and the love that we share no matter what.
Speaking of fate….I must also confess that as an asymtomatic PKD patient I might not have had the opportunity to discover that I had this disease had it not been for one nasty kidney infection and a hospital stay 10 years ago. In some inexplicable way, PKD has given me direction, drive, vision, and purpose. I love being part of the PKD Foundation and contributing whatever I can to improve the quality of life for those who suffer with this disease. I love being part of clinical trials, working as a full time volunteer, and meeting amazing people. I often wonder what I would be doing now if PKD did not reveal itself to me at that moment in time.
But, here we are….and here I am….PKD patient….PKDF volunteer….and someone eagerly awaiting the start of a new decade, hoping that it brings new PKD hope, discovery, and healing to those who need it the most.
Happy, healthy new year to you all,
Karyn
Thank you so much , Karyn,
for you and Jerry’s contributions to the PKD community!
Peace and Blessings!
Coach Richie Perl