- Meet Consumers/Patients
Ceil & David McGee
I have lived on home parenteral nutrition (HPN) seven days a week for almost eight years. I learned about Oley during the first nine months of adjusting, while trying to find ways to improve my quality of life. At first, it was the Oley newsletters that helped me see how others coped with this whole “deal of being hooked-up.”
Just over three years into accepting my “new normal” way of life, I was blessed with a Godly woman who wanted to marry me and live the rest of her days with me, willing to accept the job of “caregiver” added to her many other roles. After a couple of years, we—together—decided to attend the Oley conference in Tampa, Florida. This was overwhelming. We saw people who had lived on HPN for over forty years and just how keenly the Oley Foundation is committed to HPN consumers. Based on the very positive experiences we had, my wife and I decided we couldn’t miss the next year’s twenty-fifth conference in Saratoga Springs, New York.
Through the open e-mail access such key persons as Joan Bishop allow, I offered a couple of suggestions for breakout sessions related to ostomies. (Since I also am an ostomate and know that many other Oley members are, too, I felt this needed to be offered as part of the conference experience.) And what do you know—when we got to the conference in Saratoga we found they had listened to my suggestions! One of the co-founders of the United Ostomy Associations of America (UOAA) conducted a breakout session and the UOAA had a table of materials onhand.
Again, the resources made available to educate and equip me for managing this major segment of my life (but in a way so that it became not such a big or “defining” part of who I am), meant so much to me. The exhibit hall and the access it offered to all of the companies and organizations who support us as consumers proved to be extremely beneficial to me during this conference.
Oley is a group of people who share many things in common. Often it is simply in talking with others that you can learn tips you had never heard or thought of. Here’s an example: I had always found it somewhat of a challenge to spike my HPN bag each night. Turns out, Marion Winkler, PhD, RD, CNSC, a member of the Oley Board of Directors, knew a gentleman in her hometown area who could make a device that would greatly assist in this tedious process. I contacted him and he did, in fact, custom-make the devices for me and two other HPN users I had befriended during the conference. This alone has been a magnificent side-benefit—something Oley was not directly involved in, but did make possible.
It was at some point during the Saratoga conference that I decided I wanted to give back and help support this organization that had done so much for me. I gave a one-time donation before leaving. But, since I do still work (part-time during each year’s tax season), I knew the tax-deductible value of a larger donation. I decided I wanted to give, regularly, over the course of the year, through an automatic monthly method.
Oley was very flexible in arranging this. I was able to choose whether I wanted it done by debiting my bank account or charging to a credit card. I even got to decide the date for the withdrawal/charge each month—and they never forget, like I might be prone to do.
I highly recommend the monthly, automatic way of contributing to Oley. Once it starts, you will never “miss” that money as it’s automatically and unnoticeably given each and every month. Even as little as $5 per month = $60 for the year. Coincidentally, this was the amount of my initial donation to Oley. But now, by spreading my smaller donations out over twelve months, I am able to give several times this amount in total. It really becomes completely “painless” and does help Oley continue to be involved in making a positive difference in so many people’s lives! Please consider giving to the Oley Foundation.
LifelineLetter, September/October 2011