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Hi.

Welcome to my ramblings. We discuss MSA (multiple system atrophy), caregiving, and life dealing with a loved one with a debilitating disease.

Things You Don't Say ...

Things You Don't Say ...

I was reading an article the other day about the challenge of not knowing what to say to someone who is dealing with a life-altering situation, or even death. It really made me take a step back because I’m often faced with the uncomfortableness that people show when they are faced with not knowing what to say, but also dealing with the weird things people actually say.

For me, through the process of dealing with this debilitating, Sybil-like disease, I was almost offended when people said, “Don’t worry, he’ll get better …” or “They’ll find a cure …” I almost felt like they were looking through us, not at us; especially those individuals who were more aware of this long road we’ve been down. My thought was, “obviously you’re not even partially aware of what we’re dealing with, because there is no cure, nor do they figure one will come into place during my love’s lifetime. So, getting better isn’t really an option”. Really?

So, let’s break this down into the Do’s and Don’ts:

Saying “I wish I had the right words, but I really don’t know what to say” is fine; “There’s a reason for everything” does not go over well.

It’s okay to not know what to say; really it is. Not everyone is wired in a way that allows understanding of your situation. Sometimes the pure emotion of the moment causes a loss of words and people can still feel your sincerity or your emotion. For me, a hug or gentle touch substitutes for the words we can’t find in the moment.

But saying, “there’s a reason for everything?” UGH! So by saying that, there’s some sick reason that we’re dealing with this horrible disease? Was it because he brought home a lava rock from the volcano in Hawaii several years back? He took it back; the bad juju should be gone …

“I’m always just a phone call away” can be comforting, but “Be strong” just pisses me off

I always love when people tell me they’re a phone call away. I love that they are telling me that I just need to call; but realistically, can I? Will they be able to handle the blubbery, ugly cry when I don’t know what to do to get my love to eat and his weight is at our self-imposed panic point? Or when the doctor is not calling me back and I have to pull on my bitchy pants and start hollering at people to listen to me? How about when I’m just so tired that I can’t even remember what day it is? That leads to “be strong”.

Be strong, you say? Isn’t getting up each day, attending to the needs of my love, working full-time, and not completely lose my s%#* not being strong? I would gladly, for twenty minutes, love to sit in my happy place, glass of wine in hand, watching the sunset, toes in the water … and not have to think about anything. But, we don’t have time for that. There’s daily things that need to be done, laundry, food prep, medication management, scheduling of doctor’s appointments, manage the insurance (because the EOBs almost always have the wrong ICD10 code on them), and anything else that comes across our path.

My favorite is, and always has been, a simple text or funny emogie, or even a simple hug with no words. As I said earlier, sometimes there’s no words to be found. Not everyone is as gifted with words as William Shakespeare, Ernest Hemmingway, Agatha Christie, or even J.K. Rowling. I get GIFs of a running and screaming Kevin McCallister from Home Alone to Monty Python “Bring out yer dead” banter. It may sound weird and demented, but it makes me step back, take a breath, and giggle.

“I love you”

When all else fails, simple, direct emotion is the most powerful gift you can give someone going through pain. It doesn’t need to be ornamented or fancy. It just needs to be real, from the heart. “I’m sorry you have to go through this.” “I hate to see you suffer.” “You mean a lot to me.” The fact that so few of us do this makes it even more meaningful.

Each of us has our own level of tolerance and understanding. My hands are full, day in and day out. I don’t have the wherewithal to ask for help, figure out what I need, or even to tell you what I need or how I feel. The best days are the quiet days, sometimes with my love and sometimes alone.

This is it

This is it