There were many side conversations I heard at the ALS Advocacy Days in DC, but by far the most disturbing for me was the prevalence of stories about friends and family of people with ALS disappearing after the diagnosis and onset of serious symptoms. Every single family I spoke to had a story about this occurance, it was referred to in an off hand and “of course” manner that was shocking almost as if abandonment by former friends was just another symptom of the disease. I did not seek these conversations out, nor was I looking for evidence; they were simply happening around me. I guess I had hoped my own experience with this was a rare an infrequent happening. Not so Much.
I believe Mark Twain said something about, “Misfortune tells you who your real friends are…” The overriding sentiment for the friends Missing in action was “Good Riddence!”, however the disbelief and hurt experienced by the families and the patients was still evident.
Some of you may recall I had a “best” friend who had stopped inviting me over to her home after a pricey redecorating job, out of her concern I would wreck something with my new found clumsiness. That was the day I resolved never to have a friend who put things before people~ If you can’t afford to break it you can’t afford to buy it. You would think a decade of friendship would warrant a bit more respect. I also had prospective clients change their minds after having said yes to hiring me as their coach…several of them disappeared only to pop up months later and confess, ” I just couldn’t watch you struggle to communicate.” Even though that communication was only being done for their benefit. These situations hurt my pocket book, but were more disappointing from the stand point of not being allowed to make a difference and that opportunity to make a difference is what has kept me going. However, none of my experiences held a candle to the horror stories I heard bandied about the conference.
There were the inevitable stories of spouses leaving, but the worst was a tale of how one man felt cheated by his wife since he blamed her for not telling him ALS ran in her family. He yelled at her caretakers, admonishing them not to work out her joints and legs or make her special food…”We’ve moved on!” He said to her support people, meaning we’ve left her to die. Or the friends of the wealthy woman who sat with her out of guilt, but didn’t have the stones to deal with her and her comfort. In this case the caretaker came in after an hour and the “friend” hadn’t been able to apply the eye drops that are needed to ease her vision , because her eyes no longer blink. “Eyes creep me out! I don’t know how you can do that!” Said the woman who wore plenty of mascara…
Dante and I are working on a new level of Hell for these people…
Weak suck pin weany pablum puking scum maggots…I mean really! Strap on a pair! If we have the courage to live through it, the least you can do is watch and learn. Life is Fatal. Get over it.
