Contributed by Jim Nelson, consultant to CAIRE Inc. ~
We talk so much about the importance of attitude. For good reason. Anyone who finds themselves in a bad situation, with a chronic medical condition or in the position of a caregiver with no end in sight can find relief in the shelter of a positive attitude. We talk of choices. Life is filled with choices. A diagnosis brings with it the opportunity to choose between grabbing the remote and waiting to die, or conversely to adopt the attitude, find the fortitude, develop the stubbornness necessary to stay positive, to live the kind of life that we deserve.
Easy to say. But how to accomplish that determination while we are faced with our limitations? Try reaching outside of yourself and spending some time helping others. It can have an amazing effect on everyone involved.
Mary and I began volunteering at the Tucson office of the American Lung Association a couple of years before my lung transplant. We spoke to Better Breather’s groups, we recorded instructional videos, we sat in on policy meetings and wrote articles for the COPD community. It was rewarding for us, it got us out of the house, and we gained more knowledge about my disease.
After my transplant, we were able to increase our efforts to share our story with others with lung issues. I spoke and wrote from the patient’s point of view, and Mary shared her experiences as my caregiver and as a long-time hospice volunteer.
We became involved in several Facebook support groups, and a phone call to the volunteer coordinator for the COPD Foundation resulted in our positions as advocacy captains for the state of Arizona. We dove into the new opportunity, and it resulted in invitations to the annual foundation conference. We traveled to two or three conferences each year, speaking and networking with patients and caregivers, with leaders of the COPD Foundation, medical professionals, other advocates, and others involved or interested in lung disease. We traveled to both coasts and to Chicago and Washington D.C. and to London. We were invited, with about 120 others from across the nation to meet at the National Institute of Health to formulate a Congressionally-ordained plan for the handling of COPD.
We became known throughout the COPD world as Uncle Jim and Aunt Mary.
So, we have done a lot of stuff. We have been obsessed with helping others in our community. Thing is, we love doing it! All of the volunteering has been healing and rewarding for us.
Do you have it in you to devote some time to helping others? Are you a good writer? Do you enjoy speaking to groups? If those activities don’t appeal to you, there are always other tasks that just cry out for volunteer help.
The world revolves on volunteerism. The lung disease world is certainly not the only group that needs volunteer help. Look around. There are many hundreds of social service organizations that could not survive without their volunteers. The volunteers, on the other hand, love what they do! It gets them out of their little world, it provides them with a sense of purpose, it gives them a whole new source of friends …
And, at least in our case, it has provided us with an activity that we can do together, with a great deal of joy, with a gigantic sense of accomplishment, and with the knowledge that no one really cares whether you are wearing a cannula or not.
Try it. You have nothing to lose but a little time. If you hate it, you can go back to watching reruns and infomercials. At least you will have tried. But if you like it, and I have a hunch that you just might, it could provide you with a whole new life.
~ Uncle Jim
Jim Nelson is a double lung transplant recipient and a patient advocate for COPD patients throughout the U.S. and around the world. He and his wife, Mary, are well known patient advocates and brand ambassadors for those organizations who tirelessly endeavor to help those individuals who suffer from a variety of respiratory diseases and the caregivers who support them.
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