PEOPLE WILL SURPRISE YOU
I started writing about this and went a bit sideways, so I’ll leave all that for another post and try to keep it simpler.
Of everyone and everything, I say this.
Keep your standards high and your expectations low.
People will surprise you, both in good and bad ways.
I have been stronger than I ever thought I could be. I’ve also been weaker than I’d like to admit, but it’s true. My social media might look like I’ve got it all together but most of it is the pretty snippets in between the awful, to send out the positive into the world.
What you don’t see are the tantrums, and the yelling and throwing things while crying at four in the morning when my body is screaming at me to get back in the bed. You don’t see the days I’m stumbling around in a robe and slippers all day, like a zombie who is most certainly in a very bad and super snarky mood. I’ve said mean things that I felt awful about later.
Or the times I’m ranting to Brian about some medical bill or claim denial notice we’ve received and how the system sucks. That’s real life, so if you’re a caregiver or someone that thinks I’ve got it all figured out and am well balanced…think again! I always feel better when I see other caregivers post their truths, so there you go. No one is perfect!
You never know who will do what!
Doctors, nurses, and others within the community will leave you feeling so cold, alone, and desperately frustrated. You will also randomly cross paths with a select few that will blow you away with their genuine concern and work ethic, as well as their desire to help you.
Remember that friend from Day One that we took groceries to when he hit a rough patch? That was one of Brian’s best friends for years. After Brian was diagnosed, that friend just sort of disappeared, as have a few others. Guess they just can’t handle it.
Family and friends will do things you wouldn’t expect, both good and bad. ALS is a lot for anyone to handle. It’s very hard to see Brian (or anyone) sick like that. It makes people feel very uncomfortable. When the going gets tough, not everyone is down to stick around. Expect the unexpected, then adapt accordingly.
While some friends and family have let us down, other friends, family, and perfect strangers have also helped us in many ways, including financially. People have been integral in our journey and we couldn’t have made it this far without them.
Strangers reach out to me on Instagram and Facebook all the time, sharing their own caregiving or ALS stories. I find such value in those connections, with those who can truly relate to this experience.
Just today our cough assist machine stopped working and we were freaking out a bit, as that machine is an absolute necessity to get through the day. I reached out to our awesome respiratory therapist to see how to expedite getting a replacement. He’s got a full day tomorrow, but he is going to get up early just for us and drive it over.
The list goes on and on but the bottom line is that you just never know about people, so as I said, keep your standards high and your expectations low. That’s also just good life advice! If I could just follow my own advice all the time…
Silver lining: People will surprise you in amazing and wonderful ways, so keep your faith in humanity!
Miss the previous posts? Start this series, Ten Days of ALS, from the beginning by clicking here.
