Wednesday, September 27, 2006
"What stands in the way is the way."
"Acceptance of the unacceptable is the highest state of grace there is. Let the present moment exist - let it be", Eckhart Tolle.
This is how it goes with an ovarian cancer support group. One of our members passed away last week after fighting pretty continuously for 1 1/2 years. Another member who was in remission for 1 year had a recurrence and has had two surgeries, the last of which resulted in a colostomy. We have one member with both a colostomy and an ileostomy that has been going for 3 years with chemo off and on. A good friend in the group has been on parenteral nutrition (IV feedings) for several months now, and on chemo pretty continuously for the 2+ years since her diagnosis, but still manages to ride her horse competitively and stay active with household and barn chores. We do have members of the group who are in remission, and their continued participation gives the rest of us some measure of hope.
One might wonder - why would anyone want to be a part of that group? Sometimes, can't ignorance be bliss?
When I was first diagnosed and considering whether the support group would be right for me, I heard differing opinions on the value of such a group. The obvious reasons for joining include having a source of first-hand information from people who are uniquely positioned to know exactly what you are experiencing. They can help you know what to expect and coach you on resources, tips and tricks. They are there for you in a way no one else can be.
There is a downside that was mentioned by some - the constant reminder of the devastating nature of the disease as it is experienced by other group members. People who are sure that because they experienced a certain side effect, everyone else will also. The inevitable loss of members over time, not to mention recurrences, surgeries, chemo, clinical trials...and the list goes on.
After a while, though, the group begins to feel like family, and some of the members, like sisters. You can discuss what no one else wants to hear or talk about or understand - how it really feels to know with certainty you are not invincible or invulnerable anymore; how to balance hoping and praying for and wanting a good outcome with being realistic about needing to prepare to let go; worries about what and who will be left behind, things left undone and the pain loved ones will experience.
That kind of relationship and interaction is one that many people don't get to experience, either because they choose not to think about it and plan, or because death takes them by surprise. Most people don't have the experience of sharing these thoughts with someone who says "I know", and it truly is the case. But when you can have that kind of relationship and those kind of conversations, it helps you to gradually do what you must do to be at peace with the disease and your life - to accept the unacceptable.
What is the unacceptable? Anything that we are struggling with and cannot control but don't want to deal with - be it physical or emotional pain, nausea, a change for the worse in your counts, loss of someone or something we value highly, a situation that seems just too difficult to endure, or running out of options. Of course, there are often things that we can try to make the situation better, and we should. But when it appears that may not be enough, and our best efforts do not succeed, there is still one thing we can do. We can accept that the situation is what it is, that we don't know how to change it, and surrender to the fact of the matter. That acceptance is not giving up; rather, it is giving in and acknowledging that there is a force beyond our control at work, and that we can't see the big picture (some would call it the Divine Plan).
Stopping the mind, tuning into the present and our being as a part of the life force of the universe, is a way to make the unacceptable moment somehow more acceptable. We lose the sense of heaviness and all the baggage that goes with it, and can accept that what is just is.
"The opposite of life is not death. Birth is the opposite of death. Life is eternal"
- Eckhart Tolle
Link
This is how it goes with an ovarian cancer support group. One of our members passed away last week after fighting pretty continuously for 1 1/2 years. Another member who was in remission for 1 year had a recurrence and has had two surgeries, the last of which resulted in a colostomy. We have one member with both a colostomy and an ileostomy that has been going for 3 years with chemo off and on. A good friend in the group has been on parenteral nutrition (IV feedings) for several months now, and on chemo pretty continuously for the 2+ years since her diagnosis, but still manages to ride her horse competitively and stay active with household and barn chores. We do have members of the group who are in remission, and their continued participation gives the rest of us some measure of hope.
One might wonder - why would anyone want to be a part of that group? Sometimes, can't ignorance be bliss?
When I was first diagnosed and considering whether the support group would be right for me, I heard differing opinions on the value of such a group. The obvious reasons for joining include having a source of first-hand information from people who are uniquely positioned to know exactly what you are experiencing. They can help you know what to expect and coach you on resources, tips and tricks. They are there for you in a way no one else can be.
There is a downside that was mentioned by some - the constant reminder of the devastating nature of the disease as it is experienced by other group members. People who are sure that because they experienced a certain side effect, everyone else will also. The inevitable loss of members over time, not to mention recurrences, surgeries, chemo, clinical trials...and the list goes on.
After a while, though, the group begins to feel like family, and some of the members, like sisters. You can discuss what no one else wants to hear or talk about or understand - how it really feels to know with certainty you are not invincible or invulnerable anymore; how to balance hoping and praying for and wanting a good outcome with being realistic about needing to prepare to let go; worries about what and who will be left behind, things left undone and the pain loved ones will experience.
That kind of relationship and interaction is one that many people don't get to experience, either because they choose not to think about it and plan, or because death takes them by surprise. Most people don't have the experience of sharing these thoughts with someone who says "I know", and it truly is the case. But when you can have that kind of relationship and those kind of conversations, it helps you to gradually do what you must do to be at peace with the disease and your life - to accept the unacceptable.
What is the unacceptable? Anything that we are struggling with and cannot control but don't want to deal with - be it physical or emotional pain, nausea, a change for the worse in your counts, loss of someone or something we value highly, a situation that seems just too difficult to endure, or running out of options. Of course, there are often things that we can try to make the situation better, and we should. But when it appears that may not be enough, and our best efforts do not succeed, there is still one thing we can do. We can accept that the situation is what it is, that we don't know how to change it, and surrender to the fact of the matter. That acceptance is not giving up; rather, it is giving in and acknowledging that there is a force beyond our control at work, and that we can't see the big picture (some would call it the Divine Plan).
Stopping the mind, tuning into the present and our being as a part of the life force of the universe, is a way to make the unacceptable moment somehow more acceptable. We lose the sense of heaviness and all the baggage that goes with it, and can accept that what is just is.
"The opposite of life is not death. Birth is the opposite of death. Life is eternal"
- Eckhart Tolle
Link
