Western education 2013

Wednesday, October 9, 2013

.... so what do you say?

This week has been an eye opener for me.  Often times we try to do or say the right things and we think we are being helpful.  Those of us in the journey understand that... what we fail to understand are those not in our immediate health team who apparently know more than anyone else?  Recently a friend of mine went through major surgery to remove and then reconstruct her breasts.... only the surgery was a failure, learving her in a position no woman would ever consider could happen to her.  Yes, while these are rare, they happen.  For one of the first times I was without words to describe how I was feeling about this devastating news and as an outsider looking in... you cannot possibly imagine the angst this woman is going through.  I was honest.... I told her that I wanted to support her but I was at a loss to say anything that could ever possibly make her feel better and I did not want her to feel she had to explain or make me feel better about my inability to communicate my deep sorrow for her journey.  She understood.... we talked for over an hour as I tried to get my head around what she was going through and I have to admit.... I could not.  I have shed so many tears and worried for her and I keep praying that the breast that died as a result of insufficient blood will not make her sicker while they attempt to pull together another team to remove it without dislodging the blood clots in her lungs...... just when you think you have it tough....

So what have I learned that I can impart to those, like myself, who hover on the outside trying to comfort someone in pain?

1.  You do not know what they are going through, so don't offer ANY advice.  It comes across as being a 'know-it-all' and dismissive... to say the least.  I had a family member call me up in my second diagnosis to tell me that my cancer 'was no big deal... you've gone through it before, you can do it... while that is bolstering advice... it came from someone who never calls me....EVER!! 

2.  You are not their doctor, please do not offer up something 'I heard about....' Trust me, they have heard enough up to this point and you might be the one who finally gets the backlash.  

3.  Please stick to your own expertise, she has an entire team to consult with and unless you are one of them, talk about the weather or make her laugh... it's safer.  

4.  Research is great, only everyone is different. I have a cancer that only 15% of the breast cancer population has.... research in a petrie dish does not equate with a cancer strangling your carotid artery when you are trying to breathe.  Please refer to #3

5.  Ask what you can do or ask what help they have?  Hire a maid and send them over because no one will ever ask you for help unless you are their Mother.  Don't offer unless you fully intend to follow through.  A friend of mine did just that and it was one of the best gifts ever.  

6.  Drop off a meal.  Ask them what they can have and then deliver a full meal.  (My friend Mandi has this down to a science.... she tells me when she is coming and arrives with enough to feed the family - bless you baby for your kindness)  She has involved her family and they proudly present their offererings every chemo.  

7.  It's not personal - if you have made a mistake and have upset or hurt the person, you need to own it and apologize.... you make it worse when you try to make excuses or play point the finger.  Grow up.  Reality - people in pain lash out at whatever is annoying them at the time...visualize someone whacking a bees nest with a large stick and then the swarm attacking in hopes you will go away and leave them alone!!!! be prepared to put on your 'big girl panties' and say you are sorry.  Those who don't understand... never cared in the first place.

8.  If you are not close to that person - do not call them!!!!!  Family or not, your call in their moment of need can backlash quicker than a toddler on a time out.  Send them a card to let them know you are thinking of them or send flowers. If you must call make it quick and find out when it is a good time to get together... preferably when they are feeling better and if they want to see you.  Years ago, a woman who had been badly assaulted, was laid up in a hospital room and was visited by a nosy neighbor... the type who loves to report to others about the 'current' condition and who was promptly put into her place by the assault victim before she had a chance to leave the hospital room.  She should have known better but her curiosity got the better of her.   

9.  Everyone has a story, please keep them to yourself.... there is nothing worse when you are diagnosed with a life-threatening illness that everyone wants to share their loved one's last minutes on earth.  There is a time and a place for everything..... except that!!!!  I understand that people try to relate and show compassion by finding a common thread.... this is not the time.  A friend of mine was subjected to sitting in silence in a hairdressers chair and made to listen to the most horrific details of a journey she did not want to hear about.... she just wanted to feel human again after her own diagnosis.  I was much luckier... in my first journey a survivor cut my hair, listened and then did not charge me a dime... that was her way of giving back and then closing the door on her journey.

10.  Have a sense of humour.  They are already down and depressed..... find something funny and work from there.  My sister called out of the blue and made me laugh till my gut burst.... it chased away the last of the chemo blues and made us stronger together.  She was honest and forthright with no agenda but to pull me out of the hole.  She knows that secretly, I am not strong, nor brave but a woman facing her own mortality..... scared and trying to cling to the life raft she has provided in the form of a belly laugh.... 

I have learned many things in my journey and mostly that family are truly odd ducks in the game of life. Some are amazing, know what to say and take charge in a loving and kind way..... while others show their true colours at a time when you wish they were something you had hoped they would be but find that they cannot and are deeply disappointed every time you try.  My mother doesn't know what to do or say and I call her on occasion to let her know that I am still around... I joke about this but essentially, she never could handle anything outside of herself.  I just tell her to enjoy her retirement and she is .... with someone else's daughter whom she has known a sum total of about 8 months.  No Mom, I do not know what you should buy her for her birthday on the holiday long weekend.  My mother lives in a retirement home a mere 5 minute drive from my house.....

I called my inlaws this morning.  Mom is too sick to visit and I miss them both so much.  She thinks that sometimes I can be a control freak, and hey, there are worse things I could be.  I laugh, because I know she means it in the best way.... one in which I like to believe, as does most everyone else, that somehow we are the masters and in control of our own destiny.... only, it is an illusion and we are not.  Sometimes you just have to ride the wave, hope for the best and stay the course.  Eve reminds me to keep going and to stay positive and in her kind supportive words, I feel better... thank you. I love you.

My husband might not always know what to do or say but he knows me best of all and tries to be there on the days I crash.  He says what he wants me to know and keeps his fears at bay.  He is truly there for me in this journey.  He takes the bad with the good and tempers his fears with his beliefs.  I am blessed for having him in our lives.  He might add a few more to my list of what not to say.... but he would emphatically agree that at the end of the day.... the magic of laughter can make the darkest days seem brighter.

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