My smile is wearing thin, as is my patience.
My co-workers have noticed it. They’ve been teasing me the last couple weeks about my short temper and bitchiness. And I go along with it, like my new attitude really is a big put on and I’m really still the sweet natured Katheryn I’ve always been. Maybe they’ve noticed and they think by making light they’ll help me lighten up. I wonder. All I know is if I’m asked how to do some damn stupid simple thing in Word or e-mail for the umpteenth time one more time, well, I’m probably going to get even snippier.
My husband has noticed it. He bears the brunt of it because, in the privacy of the home, the gloves come off and the claws come out. I don’t mean to be mean, I know he hurts, too, but I just get so frustrated.
Why can’t people understand how frustrated I am and try to take steps to avoid frustrating me further? I know people don’t deliberately set out to cause frustration, but when they don’t appear to try to avoid it at all it’s even more damn frustrating! I’m a seething ball of frustration 24/7, and asking me how to do something or where something is or why do you have to do something this way for the 10,000th time just makes it WORSE!
Yeah, I’m touchy. I’m in pain, physically and emotionally. Imagine how you feel after a long day at work. Imagine you’ve had a harder, more frustrating day than usual. And you come home and exercise or work in your garden to get some of the frustration our. And you cook dinner and walk the dog. Imagine how tired and drained your body feels at the end of a day like that. OK, I start out every day feeling like that and it’s downhill from there. Yet I’m still expected to put in an 8 hour day at work. I’m still expected to cook dinner. I’m still expected to play with the dogs. I’m still expected to have a normal relationship with my husband. So what, do I want a freaking medal? Yeah, maybe I do!
Consider the parable of my sister and the mouse. It’s a true story, and it’s oh-so appropriate. Once my sister came upon a mouse in a field. The mouse had been badly mauled by a cat and lay dying. My sister, who was all of about 5 years old, felt sorry for the mouse and she tried to pet it. The mouse bit her. Hard. I’ll never forget watching my sister dance around with a mouse attached to the end of her finger. She just wanted to comfort the poor creature and instead received a nasty wound. I am the mouse. Life is the cat. And my husband and co-workers are my sister.
IT’S HARD. I don’t know how much longer I can do it. And yet people not only expect me to keep functioning like a normal human being, they yammer at me about stupid crap I don’t give a shit about, and it’s frustrating!
It’s frustrating not having any hope, either. I used to have hope. I remember being in elementary school and thinking I wouldn’t be in a wheelchair until I was in my 60’s. I got my powerchair when I was 26. I remember thinking I’d live a “normal” lifespan. Now I realize my abdominal muscles are weakening making it hard to get deep breaths and making me vulnerable to pneumonia, etc. I may even need a trach someday (and I say that the way I used to say, "I may even need a wheelchair someday). I remember thinking just recently that we’d entered a brave new world of genetic science and someday we’d figure out how to fix or replace my faulty proteins. It has since been pointed out to me that someone of my advanced age would never be considered a candidate for treatment even if/when the technology is available, that it would only benefit newborns or fetuses.
I didn’t post this when it happened, because I didn’t want to look like I was fishing for pity, but hell, I admit it, I am. Twice in the last 6 months I’ve fallen at home. Normally this would not have been such a big deal, but since I’ve been in the wheelchair I’ve gained even more weight (and I’ve never been a light-weight to begin with), and my husband was completely unable to help me up. Both times the paramedics needed to be summoned to get me off the floor. Falls used to mean pain and embarrassment. Now they mean pain, embarrassment, and a call to 911.
So what have I got to look forward to? Pain, frustration, and death. What do I have to hope for? I honestly don’t know. A miracle? Puh-leeze. I’ve prayed too many prayers, I’ve shed too many tears. I’ve got God’s answer (if He’s really up there) and that answer is “No.” Blaming me, saying I didn’t have enough faith or went to the wrong church or what have you, just makes it worse.
I just need a hug 
And maybe a medal.
