In our ALS Journey there were so so many things to deal with that there was absolutely NO way to be prepared for. As horrible as many of them were to deal with there were some absolutely Hilarious ones too.
One of the great things about dealing with those in the ALS trenches is their blunt honesty that comes from not having any time to waste and no energy to filter or worry about being PC.
Many horrifying situations that were or could have been life threatening (to only deathly humiliating) are shared among those who "get it" in our world with a great laugh.
Occasionally one of us has a verbal slip, either by accident or on purpose, to or in front of those sensitive thoughtful caring people who are lucky enough to be living a "normal life".
This is rightfully met with a gasp, sputtering, blushing and or cringing. Those who are unseemly enough to laugh out loud right along with us take us by surprise and are taken into the fold immediately.
When those from the "outside" only view the hardships of healthcare and sympathize our imagined hell they miss the LIFE that still goes on between all the things to do.
In our experience we had the natural tendency to blurt out what we knew people were thinking so they didn't have to slap themselves in the forehead for saying it later. It allowed people to relax in conversations when we said out loud the absolutely worst thing imaginable so no matter what slip anyone made it was clearly nothing that would upset us in any way.
Sometimes it was just entertainment for Tracy who was such a doer before ALS.
I think he just got bored and had to stir the pot.
Example:
Tracy: in front of the salesman- buy me that
(insert any ridiculously expensive electronic device).
Me: I pretend I can't understand him and smile and nod.
Tracy: He begins to try to order said extravagance directly from the salesman to get even.
Me: What the hell? No. What are you thinking?
Tracy: But it's my dying wish!
Me: You are maxed out on dying wishes this week buddy.
Tracy: Puppy eyes to the man bonding over the shrew wife thing.
Me:You won't have to worry about ALS killing you because if you keep this up I am gonna put your chair on turbo speed and aim you straight out that door onto the highway.
Salesman: Pretends he has an emergency call on a pager that isn't working.
Me: You jackass
Tracy: Shit eating grin
As a matter of fact, my dear sweet (Jackass) dead husband- yep, I said that word dead out loud again, LLLOOVVEEEDDD to watch people squirm as he casually threw out verbal jousts just to see what they would do. No matter how many times I kicked him or his wheelchair he would have that little boy grin with absolutely NO sign of remorse at their clear discomfort and or embarrassment.
Originally I just thought it was Tracy being Tracy but through these past years I have come to find out that it's not just ALSers.
My Dead Spouse Society is a club none of us wants to be in but there is a freedom in this kinship because we tend to say what we REALLY mean more often than most. No matter how horrible it sounds there is absolutely NO judgement because we understand that you can deny the truth or not talk about the truth but that doesn't change the truth. We tend to deal with harsh realities every day so acknowledging them is somehow easier for us than the energy draining appropriate rehearsed responses deemed acceptable to main stream society.
We do our best on good days to not subject you all with horrible but often times hilarious truths of our situations or journeys. Know that we don't purposely set out to send you running from the room with our comments, (well, most of the time).
It's not really our fault.
It seems our Give a Shit Genes gets damaged during the process of our journey
(and some of us were lucky enough to never have that quality to begin with).
Yes, Tracy....I know, I keep ending sentences in a preposition. What are ya gonna do about it now? Huh?? Even now he haunts me about it. There I go again.....
I wish I had the bravery and spontaneous honesty that I reprimanded Tracy for so often so I could share some of the situations we found ourselves in so you could better understand, in order to survive a long term chronic illness, sometimes you just have to laugh.
Perhaps I will block all my family and some of our close friends so I can share with those I never have to look in the eye, some of the realities of living with, instead of just dying of a disease that no one else is bold enough to talk about.
