“To Know the Road Ahead…Ask Those Coming Back”- Chinese Proverb
In the beginning when I was created in 2011, Jo-Ann and I felt very much in isolation. We lamented as we experienced a profound lack of fellowship in that present time, and extending into our future. Beyond the pain Jo-Ann felt throughout her body as she recovered from the disease that preceded my creation and my creation surgery itself, I sensed another pain inside. We were alone, an isolated island stranded in a void of empty space. We were grasping for threads of knowledge, understanding, and a sense of community.
Everyone we knew eliminated in the way nature designed them to. We were different now, what nature intended no longer existed for us. I am destined to have a bag over me, the buck stops here. At that time, we felt we were sailors in the midst of a shipwreck.
I did my best to keep us moving, (so to speak), being as adventurous and humorous as I could be, considering it was the early days. We had many ostomy questions that no one in our circle of family nor friends could answer. We were experiencing physical/emotional issues and feelings, that no one could relate to.
We had wonderful friends, family, and a legion of medical experts surrounding us who were concerned. So many in the most precious of ways, reached out and reacted from their perception that we were in distress, and so, in need of them. They extended loving and caring words and gestures stemming from their concern for our well-being. Others pitied us, and still others just didn’t know what to say or do. We thank all of them, and hold them dear in Jo-Ann’s heart. But, for us something was missing. We were not normal anymore, we were on the journey to a new normal. There were no road maps, nor fellow ostomate travelers on the path. As we reached out to those around us, we still felt in need. We were rich in sympathy from others, we were surrounded by care and concern, yet, we felt alone on the road.
Step by step, Jo-Ann began to take control of my ostomy care. Then, one day she noticed a grapefruit sized bulge under me. What was it? What was wrong with me? We were frightened of what it might be! Jo-Ann started making phone calls to the surgeon, family doctor, and home care nurses. Although we did not feel physically different than the day before, we were terribly frightened as to what the bulge might mean. Desperate for some understanding, Jo-Ann searched the internet and found the phone number of our regions’ United Ostomy Association of Canada, (UOAC) – support group. The support groups have volunteers who are available to answer ostomy questions.
A gentleman called us back within an hour and helped put Jo-Ann’s mind at ease. This was our introduction to the cool dudes and dudettes of the UOAC. This volunteer-run charitable organization is dedicated to helping all persons, including families and caregivers, who are affected by ostomy surgery. We have learned so much from our connection with them, and the camaraderie is priceless. There are United Ostomy Associations worldwide.
It was at this time we found what we were missing, the reason why we felt so adrift, we needed empathy!
No matter your situation in life, whether you have a bowel disease, ride a motor cycle, are going through a divorce, you are an entrepreneur, battling cancer, or whatever life issue or situation is yours to experience, there are associations in your region. Everyone needs to know there are others out there with the ability to mutually experience the thoughts, emotions and direct experiences, as you. We are not alone. We are not an island. We are not adrift. In fact, all of us are surrounded by people who are just like us. These are people who understand what we are going through, because they have gone through it themselves. Empathy is a treasure we can all discover. As a community of humanity, we are in fact part of a far richer reality.
“Better With A Bag Than In A Bag”
This post was written due to memories sparked by an inspirational email sent to us by Larry in Jersey City, USA. Following is an excerpt from his email:
E M P A T H Y
Empathy differs from sympathy. People in the medical,
nursing and healing professions can offer sympathy for a
patient’s disease or defect and the need for an ostomy.
The offering of empathy, though, can be done only by
ostomates; only they have the unique understanding
derived from experiencing a similar situation.
Without even a word, the sight of a vigorous individual
with an inconspicuous ostomy is testimony to the
acceptability of a stoma.
Beyond the reassuring appearance comes the shared
concerns and triumphs, solutions to problems, answers
This exchange makes easy the rehabilitation of new
ostomates and is a source of enormous pleasure to
those who are reaching out to a fellow human being.
“To Know The Road Ahead . . Ask Those Coming Back!”
The Ostomy Alliance