Ehlers-Danlos mama trying not to twist things up *too* much!
Tuesday, October 19, 2010
Week in Review, My Thoughts on Public Hobbling
This past week has been crazy-busy with appointments of every kind for me and the kids. We also seemed to have wrapped up the week of stomach-yuckiness, until I was stricken yesterday afternoon. I think I made out much better than my poor kids and wife, though. Everything has stayed in, perhaps as a result of the many painkillers, but I feel gross. Thankfully, the big guys had school today and Cam took the Poodle out with her, so Puggles and I just maxed and relaxed. It's funny—Puggles is exclusively tube fed as a result of her genetic disorder and dysmotility. (I will eventually get her blog to be more than a figment of my imagination), but I swear sometimes she wants to eat. Either that or she's teasing me. Today, as I was forcing myself to eat Saltines and sip ginger ale so that I could take my regular meds, she was practically wiggling out of her seat whining at me. Out of common courtesy, I offered her a cracker. She looked at me like I was crazy!
So aside from my current stomach woes, I've actually been getting out of the house recently—to places other than the hospital and pharmacy, no less. It's still a work in progress. Some days I feel fabulous. On Sunday, we had the Poodle's birthday party, and I had so much fun.
We have some pretty awesome friends and family. One of Puggles' little friends, Skye, came over after the party with her parents, and we all enjoyed feeling normal for the evening.
I notice now when I go out in public (right arm in sling, left in brace, limping with a crutch), I'm met with one of two reactions:
People keep their kids away from me and generally treat me like I'm dying. Also, like I'm deaf. A very strange conversation took place behind me at Stop & Shop. It was between two women trying to figure out how to pass me in an aisle and was **VERY** dramatic. I felt like turning around and informing them that I was able to hear them or like whacking them with my crutch as they attempted to rush by. I didn't.
People either have no common courtesy, are completely oblivious to what goes on around them or think that a person with a physical disability would be appalled at any offer of help. This past weekend I went to Old Navy to get a Halloween costume with Old Boy. After shopping for a while and standing in line, he was even more wired than usual; I was even more tired. We walked to the doors with a group of people no more than three feet behind us. Instead of taking a step forward to grab the door for me as I struggled with a large bag, a crutch, a heavy door and a hyperactive child, the group pushed into us and huffed.
For cripes sake. It isn't that difficult. To the over-reactors: If I were in some critical condition, it's unlikely you'd find me at the grocery store or Old Navy. You don't need to whisper near me or avert your eyes. To the second group: have some decency. I'm not suggesting that anyone make a big show out of helping a person with a physical disability if they appear to be doing fine on their own, but if someone seems to be struggling, it doesn't hurt to ask if they need a hand. Furthermore, this doesn't just hold true for a person with a cane, but for any person. (After all, I'm still disabled on days when I'm not wearing the sling and using the crutch.) What's the worst that could happen? You might get snapped at. But chances are, you won't. And as a person with a crutch, I've really appreciated door-holding recently!
So overall, a pretty good week. I actually had two very productive appointments with new providers (for myself.) I have a great deal of anxiety when it comes to seeing new providers, especially since I am prescribed a lot of pain medication and have had some unpleasant experiences along those lines. To my pleasant surprise, both the neurologist and the gastroenterologist took the time to research EDS and were thoughtful and kind. Wow.