Tracy just made a great new friend.
Becky Cutler.
I am so sad to say Becky left the planet this morning.
I've only known the Cutlers a short time
but they make quite an impression.
I met Kelly, Becky's husband, #1 fan and very devoted caregiver at the All Good Cafe where he was gigging.
Their names kept being brought up to me by other musicians I would talk to at the open jam Tracy liked to go to.
Turns out that Becky had ALS and I thought maybe I could help them with something, anything, I had learned from my journey with Tracy. Then I found out once I was there that the mother of the waitress there died of ALS a few years back.
How strange is that?
Well as it turns out they were wonderful folks and accepted me into their inner circle and made me feel like family right away. I feel so very lucky to have them have befriended me.
To lose yet another wonderful person in my life to ALS just lights that fire under me to change things and help and educate people EVEN MORE.
I have had many many many people all agree with each other and say to me, repeatedly, passionately, lovingly- I don't think it's a good idea for you to put yourself thru "this" so soon after Tracy's ...er..uh..mmm...leaving.
I thought- Wow- EVERYONE is saying the same thing. They MUST be right. You can't get 3 people to agree on ANYTHING, so to have all sorts of people from psychics, to family, to well informed authors and professionals agreeing it's a BAD idea to get involved with the Trauma of others ALS journey right now while I am still in shock and reeling with the many unwanted life changes forced upon me, I should really LISTEN TO THEM.
I want you all to know- I DID listen,
I am STILL LISTENING.
I have really tried to wait, to rest, to heal, to observe, to keep my distance, to remain reserved, to focus on ME, to give myself time.
The problem for me is that I am not the rest of the world.
I used to think I was middle of the road and average in my views.
This journey thru ALS has proven that clearly,
I was mistaken.
As I sit in sadness at the loss of yet another wonderful, creative, delightful, talented person at the hands of ALS I am so disappointed that I wasn't able to do more to stop this outcome. But at the same time I am so glad I had a chance to meet Becky and Kelly. I feel so lucky to have been invited into their lives at this point in their journey and I wish I would have met them years ago.
There are some things that only those in the "trenches" can understand or even laugh at. They both made me feel comfortable just being me from the first minute.
They are entertaining and honest and have amazingly generous and extremely diverse friends they shared with me from day one.
I am finding the whole widow thing very taxing because as I venture out to make new friends or go to festivals or events on my own, of course the discussion of - what brought you to Dallas? comes up.
Talk about a conversation stopper.
I tried a couple times to avoid the whole subject without flat out lying but then they ask why the hell I can't find my way more than 2 blocks from home if I've lived here 4 years. What do I do for a living? Why am I living with my kids?
I tried explaining I am directionally challenged but polite people making polite conversation ask questions and I am just not smart enough to come up with half truths quick enough to make any sense.
Being with the Cutlers there is none of that.
We just got to be US. No tippy toeing around subjects. The extreme personal realities of care giving or being cared for allows a bluntness out of necessity.
(But I have to admit that our sense of humor tends to lay in the same gutter so quite possibly that care giver thing might just be an excuse.)
It must be how really brilliant people feel about the rest of the world.
"They just couldn't understand".
There is a special bonding being with people who REALLY know without having to ask.
(Not that I mind anyone asking anything now. If I can help anyone at all with anything to make their lives easier I am all about it).
So now that THIS day has come to have to deal with and I ponder who was right, Because they all warned me- there isn't a second's hesitation. I have absolutely NO regrets about spending time with Becky and Kelly and I am damn glad I did.
I am not sad for Becky any more.
I was before, for all that she lost and suffered through. Now my heart goes out to Kelly, understanding his loss.
I'm sad for me and the good times I won't get to share with Becky.
I was often accused of being in denial by doctors.
I am often worried about as being in denial to this day about things still by many who care about me.
Even beautiful sweet Becky was worried about ME and how I would deal with her leaving just days ago because I continued to bring or do anything I might think helpful as if she would live to be 100.
(This kindness and attitude is typical of those with ALS and is why doctors call it "The Nice Guys Disease").
NOT FACING the reality of ALS - not giving ALS faces- real live people- doesn't make it go away for me. It's not out of sight out of mind for me.
That is denial to me.
Knowing each day that people are being diagnosed and are told there is ONLY one path and it goes like this - KNOWING that doesn't HAVE to be the ONLY truth, is as agonizing to me as losing someone face to face.
It's the SAME to me because we lived that reality.
Every person suffering from the ALS life feels just like Tracy and I to me.
Taking time to "pretend" it's not happening does NOT do anything to help me heal.
It makes it WORSE for me.
I know. I did try it.
I do understand how others can NOT understand that.
I do understand how others don't feel that way.
I am sorry that my choices worry and stress my loving family who are still trying to heal themselves.
But how can you put yourself thru this again?- people say to me or think loud enough for me to feel or hear.
Because at least I TRIED.
I let Becky know that she wasn't an ALS patient to me. She was a wonderful beautiful person who happened to get the worst disease on the planet. She got to share stories with me about her music and family and life and friends because I spoke ALS, (it's got it's own accent that you have to get used to) when others couldn't understand her.
Maybe I gave her a pillow to make her arm feel more comfortable. Maybe I only bugged the shinola out of Kelly and Becky but at least they were aware that I cared enough to make an effort.
I KNOW how much I STILL appreciate every single act of generosity and kindness that were shown to Tracy and I. When you can't leave the house and you spend weeks not talking to anyone but doctors who use you as lab rats, every card, email, dirty joke, phone message, simple gift, kind word and dollar means so much and always will.
ALWAYS.
To think that I might be able to relieve even one day of that gut wrenching agony of panic and despair at the hopelessness shoveled upon those diagnosed with ALS is worth whatever I have to deal with on the backside.
Side note:
I come home from work today after learning about Becky's passing and there are SEVERAL FB messages to me from ALS pals.
One if from Reliv answering that they are willing to help me help an ALS family.
Then there was a message from THAT family saying thanks for helping them and her husband is showing signs of improvement already and has new movement in his arm.
Then I have another message from another ALS family that made no sense.
I responded to find out she was answering a message I sent in Feb. that
JUST SHOWED UP TODAY.
She is now newly encouraged to make renewed efforts in researching healing for her loved one and even joked Tracy must have had something to do with it.
So just when I was feeling really sad that I could not stop what I was told was impossible to stop and I was beginning to doubt myself
I got 3 messages at the SAME TIME
saying how much I have helped them
just by caring enough to try.
Don't ever be afraid to love someone because you are afraid you might get hurt.
hey wow
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