CCI. Re: Family!

[Guest guest]

Reply to from Sandy:

, it's unfair for your family to disrespect you. You didn't imagine this

disease, nor did you choose it. It's real, it's painful, and your relatives'

apparent lack of understanding obviously can make your suffering worse, which

won't help you or them.

There are lots of potential reasons for an unhelpful attitude: lack of

knowledge; fear, grief, guilt, self-absorption, superstition, embarrassment, or

the fact that someone can use it as a weapon, a lightening rod or a shield to

cover up other problems.

I think it could be helpful for you to pick one relative (the one who seems

smartest and kindest) to ask for a special consideration. Ask if s/he would

agree to become formally educated about the subject and be available for you to

confide in for a specific period of time (say 6 months).

In return, you would agree to spare the less amenable relatives (other than your

wife - it's part of her vow to see all sides of you) from witnessing your

suffering. You may have to miss family gatherings for a while, but your

spokesperson could explain why. That's to your benefit; repeatedly hearing the

truth from someone they trust (who has nothing to gain or lose) might help turn

your relatives' bad attitudes into good compassion. By then, they also may miss

you and be willing to reconsider their unreasonable positions.

In the meantime, be good to yourself. Take excellent care of your body, mind,

and spirit. Develop a practical daily routine that makes it easier for you and

your household members to deal with your chronic suffering.

Find and follow the true Chiari experts. Stay educated about medical advances.

Keep in touch with support groups. Get counseling, medical care, & /or surgical

care, if appropriate, and develop ethical relationships with people who

understand your situation.

Be loyal to your wife and children even as you look elsewhere for support. Be

sure to keep your end of the communication open and honest.

If others manipulate, abandon, or attack, let them know you would prefer more

love, kindness, and support. When they hear it positively, without anything that

traps them into a specific response, they may be willing to meet you halfway.

Even baby steps should feel good to you after your recent experiences, so be

sure to build your rapport by expressing gratitude for any improvements.

I know it's difficult to have to be the caretaker when you are the one who is

hurting. It's unfair. But you are setting an example for them to follow, and it

makes you stronger, too. If you have a spiritual tradition that includes a

compassionate leader, then you already have a mentor to follow. Be like that

gracious one who teaches peacefully, even as he suffers.

I hope this helps a bit. Feel free to keep or toss out whatever you choose. Good

luck. Feel better.

Sandy in OR & CA