This is a difficult conversation. It’s hard for the patients, who are hurt and abandoned AND it’s trying for the people who walk away or distance themselves as they make themselves wrong on some level and are constantly dealing with the distance they create and the loss of the person they can no longer be with. Just a few days ago I thought this post was going to have an entirely different tone…one less compassionate and more in the realm of “strap on a pair and call asshole!” However today I had a conversation with an old friend who told me to expect to get some messages from other former colleagues and friends, to a person they are calling/emailing to clean up having avoided me because of their own stuff regarding my condition. I’ll keep you posted on how all that goes…if you’re reading this and haven’t yet called or reached out guys: “strap on a set and email me!” And “Of course I forgive you, now just knock it off!”

Here’s what it looks like from the other side…

A few Fridays ago I was meeting Sarah Madden from the Downtown MDA office out to plot our fundraising efforts for the fall and spring, and we had our mothers in tow! So naturally, I suggested Naha which is one of my favorite restaurants. I had not been in in awhile and when my mother and I walked in we were warmly greeted. As we settled in for some appetizers and cocktails one by one the staff that recognized me would come up and say hello and check in on us. They were so warm and welcoming to my guests that they kept remarking on how great it was that the staff took care of me so well. Sarah and her mom were mightily impressed that the staff was genuinely interested in how I was and did not seem to be afraid of me or standoffish in any way given my condition.

I was puzzled for a moment about why they were so impressed until the converation turned to an experience common to ALS families: being shunned. You see, Sarah’s father passed away from ALS a few years ago…and one of the things families deal with is being abandoned by people both close friends and acquaintences. It’s as if people can’t deal with looking into the face of their own mortality, and therfore will not deal with yours. What ever the case it happens to all of us, and it’s always a shock to see who can’t hang. Just as it’s a blessing to see those people who may have been on the perifery of your world before ALS step up large and loud when help is needed. Some people who haven’t seen you in along time get all messed up by the progression from one visit to the next and then fade away, while others pick fights over something else to justify why they leave. I’ve experienced both of these. Then there is the folks who visit a few times and fade away when the helplessness becomes overwhelming.

I first realized what a phenomena Shunning was when I attended the ALSA conference in DC in May…every patient I spoke with brought it up! It was right there for them ~ the insult and injury and disbelief…the families of the deceased spoke of it. There was not 1 break in which I didn’t hear a story about being abandoned by their closest frineds and being embraced by others…they say ALS is the “nice ” people’s disease…perhaps it’s when us nice people can no longer be the ones offering all the support and all the encouragement that those who looked to us for that find themselves all kinds of fracked up about it. To those we supported: I get it’s hard to watch, but it’s your turn now…give back, provide respite for our caretakers, do something useful. I understand it’s tough to see a leader or mentor fall but damn people! Get a grip! Shit happens. Quit acting like we have nothing left to offer you…quit being selfish. I was suprised that Friday night when my mom told Sarah that some of my friends from my home town had begun ignoring my parents. That pissed me off. At least support them! I’m rarely home so you don’t have to deal with me, just be there for them! “For Crying out loud!” as my grandmother would say!

My personal pet peeve is the strangers and serice providers who treat me differently and shun in their own way…as if they sense a mark…an opportunity to get away with something half assed, or to profit somehow…like the cabbie who didnt want to give me change from a 20 for my 6$ fare until i wrote it out and he got I knew how to count. ASS. Or the times I am subltly discriminated and not so subltly disregarded by younger healthy people when I am slow in their path. For the most part I realized I take care to protect myself from that experience…I go to the same places where I am known, I rarely try new restaurants unless I am with someone in the business who knows the place and then I know I’ll be taken care of. I shop in the same stores…etc. I see it’s all part of how my world has been shrinking a bit.

But ya know what? I’m ok with that. In fact I’d rather let people sort themselves out on their own, I found my compassion for you but…It’s hot in this kitchen baby! This is where the rubber meets the road in life and if you dont have the cajones to hang with the big dogs go home. If you need to be the one with the biggest most dramatic problem in the room – God Bless and Good Riddence.