Tuesday, July 15, 2008

Coping with Cancer--hope versus honesty

The title of this thread is the problem in a nutshell.
Coping doesn't have to mean “hope versus honesty” -- but some people feel that they can't spend too much time with honesty, or it will destroy them. Hope and honesty don't have to be adversaries, but if in your world they are, then that's your choice. It's not the choice that would sustain me through a four-year-long cancer fight, and it's a choice I've watched take down others--but I'm not here to make someone change their approach. Go ahead, give it a shot. But I choose another way.

For me, since diagnosis, coping has always been about hope through honesty, within honesty, because of honesty. Hope and honesty are inseparable. For me, without honesty hope is fleeting and one-dimensional, at the mercy of external things over which I have little control. Without honesty and reality, there is no room for hope to evolve, to get strong enough to be able to help me cope with changes and the normal ups and downs of life, much less cope with cancer. Without honesty, my emotions would be all over the place, and I wouldn't be able to function. But when coupled with honesty, the hope inside of me is neither diminished nor expanded by external influences unless I choose to let those things affect or inspire mre. Hope becomes something I can control. My choices. My strength. Based in honesty. Big enough, and strong enough, to handle what is ahead, no matter what that turns out to be.

I've been told publicly and privately that I didn't have the right to take away anyone's hope--like that was something I was trying to do. To me, that just reinforces that the people who made those statements don't really understand where the strongest hope can come from.

Hope, like self-respect and confidence, is neither something that can be taken away or given to you by another person. Hope lives within you. Only you can access it. Only you can silence it. It is your job to nourish it--and lots of people don't have the first clue how to do that. External influences can inspire you to spend even more time nourishing your store of hope, but no one, nothing, can take hope from you unless you give them that power.

I don't have the power to take away anyone's hope—because each of us controls our own hope, and how we use it. And just as I don't have the power to take away hope, neither do doctors, or other people, current events, sudden deaths of famous people or posts on a forum. If those things take away your hope, even for a second, it's because you gave them permission to do so. If they give you pause, and then reason to regroup, you may be beginning to understand that hope springs from within--and you can control what affects it.

But these days, rather than looking in the mirror to recognize and become our own sources of hope and strength, to be the people we are destined to be, we more often look to others to give us hope and motivation—things no one can give us. We have to find the capacity for those things within ourselves. Any external inspiration can be a little fuel for own internal fires of hope and strength, but once that external fuel is gone, it's up to us to keep those internal fires burning. And by the same token, any external demotivation—a setback, the death of a friend—may briefly dampen our own internal fires. But again, it's up to us to move forward and keep those fires of hope at the level where we need them. It's no one else's responsibility but our own.

To paraphrase Gandhi, who was speaking about self-respect,
“They cannot take away our hope if we do not give it to them.”
To paraphrase Eleanor Roosevelt, who was speaking about inferiority,
“No one can make you feel hopeless without your consent.”
As we try to deal with cancer, we have to understand and accept that we control our own hope—and no one can take hope away from us unless we give them that permission.

Saturday, July 12, 2008

If you really want to help me, then you have to respect me first.

I've been following Leroy Siever's blog for a couple years, and Leroy's reaching the point in his dance with cancer where he is becoming more incapacitated, more dependent on others. He's having a hard time with this phase, as anyone who is used to being (in his words) 'the strongest guy in the room' would have. Heck, anyone who wasn't brought up to be waited on hand and foot would have a tough time in this phase. And he's getting a lot of advice from people who appear to have the best intentions that he should shelve his pride, surrender his notions of being strong and relax and enjoy being able to 'give the gift of helping you' to the people around him.

Pride, and pridefulness, after all, are sins. Self-sufficiency is a good thing--but somehow, pride in that self-sufficiency is somehow considered a bad thing. Who wrote THOSE rules?

Y'know, I may someday be in that spot, too. This summer's chemo treatments and surgical recovery have reminded me, once again, that Stage IV cancer is serious and that the one sure thing in life is that no one gets out alive. There have been days I've been too weak to drive, to climb the stairs, to take a shower, to take my dogs for a real walk, to go grocery shopping, to run more than one errand at a time. It makes me wish that I was still in NYC, where you can be totally laid up, a shut-in in your apartment, but where you can have literally anything delivered 24/7/365.

But central NY isn't NYC. Here, some things you just have to do for yourself. So I'd just like to say, for the record, that I haven't spent four years doing whatever I can do to kick cancer's @ss, just so that in my incapacity I can make someone else feel fulfilled and 'gifted with the ability to help' by any disability that may happen to me. Sheesh. Since when does someone need another's incapacity to feel 'fulfilled' or as though that person has given them a gift, given them the ability to help them? Have we as a society lost all concept of what 'help' can mean?

I understand that people see friends or family in a bad place and want to help--but their good intentions do sometimes hit a wrong note. Making a pot roast for a vegetarian or a mac 'n cheese casserole for someone who isn't eating carbs only makes the helper feel good; it doesn't help the patient at all and may even burden them. Offering to pick me up and take me someplace less than a mile away (when I can still drive myself places, and need that kind of normalcy) may make the driver feel like s/he's contributing, but it does nothing for my own fragile self-esteem. And while I'm willing to ask for help when and where and in the ways I need it--and I do, sometimes to no takers--I'm not sure why I should be grateful or artificially happy accepting the fallout from peoples' good intentions when those things don't actually work for what I truly need. Sure, they mean well--but the first rule of helping should be the same rule that applies to medical pros.
The first rule should be DO NO HARM.
The third rule should be HELPING SOMEONE IS not ABOUT YOU, and not about what you need. Any benefit(s) you may gain by helping should be secondary to actually helping the person in need.

This ain't what christians call 'pridefulness' talking. What's talking here is someone who recognizes that if you truly want to help, if you truly want to get the gift of helping someone, then you can help someone at any time. You don't need them to be incapacitated in order for you to accept your own gift of being able to help. You can help even if they aren't in obvious need--as long as you recognize that what they need from you may not be what you traditionally consider 'help' -- a casserole, a ride, a hand up, or help with daily living. Yes, they may need those things, and if you can do them, please do so--but for heaven's sake, please don't offer me help from some weird symbiotic 'accepting your gift of being able to help you' place--because that ain't, IMO, what helping people is all about. Help isn't about needing someone else's trouble so that you can shine. If you need someone else's troubles to shine, then maybe you need a little more polishing. ;)

If you want to help, you can do the jobs you do, as well as you can. I know people don't think this means much, but doing even simple things elegantly and well is a gift of conscious living that can never be equalled. You can bring a little normalcy to your interactions with the cancer patients you know. You can get screened, so that this illness doesn't wreak havoc on another life or lives. You can fund-raise, if that's your style, or make others aware of the dangers of CRC or any other cancer or illness that you choose--all in their name and inspiration. Several people in my company rode on my behalf and in my inspiration in Lance Armstrong's 2004 and 2005 cross-USA bike races...I can't tell you what that meant to me personally, and how much their efforts made a lasting difference. You can think good thoughts. You can pray. I found myself, quite unexpectedly, on a prayer list this morning. I'm a buddhist, and every breath is a prayer, but if someone else chooses to pray for me in his/her own way, I'm just going to say thank you. You can be there.

You don't necessarily have to 'do' things for me, and I don't have to be incapacitated for you to help me. To think that my incapacity 'gives' you a gift of the necessity to help is, to me, horrifying. If you need someone else to be incapacitated before you understand that the person can give you a gift, or that you can give them something of value, then something is terribly wrong with the relationship.

Ranting isn't my style...but if I read or hear one more well-intentioned statement along the lines of 'give the gift of letting the people around you help you,' I might have to give up non-violence.