I live what she wrote, even though some of the details are different. I often feel as she feels, selfishly but justifiably annoyed because other couples don't have to deal with some of the things Rick and I do. She mentions having to always remember her husband's insulin before leaving the house, and I can relate, because we always have to remember Rick's herbs. Without them, he will be too tired to continue with whatever we have chosen to do. I have to tuck them into my purse, praying I don't leave something behind. If we will be away from home over lunch, I have to make sure there will be access to hot water and a cup to mix them, a knife to stir them. I have to try to explain to people that lunch is at 2pm instead of earlier because if Rick takes all his herbs earlier than that, he won't have enough energy to get through the rest of the day/evening. I have to worry about how embarrassed he is to sit at a restaurant table and prepare them in public. I have to listen to him curse if he has forgotten the supplement that stays in our refrigerator, always cold.
I get frustrated when on route to the grocery store, we have to turn back and go home because he needs a Percocet to continue on, but doesn't have one with him. I get frustrated because I don't want him to take one at all, and sigh disapprovingly, then more upset with myself for appearing so nagging/unsympathetic/belittling/self-righteous.
I want to scream to my friends that Rick is not unfriendly - he's in pain. He's too tired to have dinner out on a weeknight, when he has worked all day and must work the following day. He can barely get through the day sitting at a desk, let alone accompany me to a restaurant at 7 pm. "Rick's in bed already?" someone on the phone will say incredulously at 8:30 pm when I mention that I'm talking quietly so I don't wake him up. I want to shout: "Yes! He wakes up feeling like he got hit by a truck and he goes to sleep because he can no longer function!"
I want to make people understand that he LOOKS okay, but he's NOT okay. That the fact that he is still working 40 hours per week, let alone doing anything else in life is a freaking miracle, is a huge struggle.
I think about the irritability, the depression, the hopelessness that goes along with Rick's fibromyalgia and myofascial pain and debilitating fatigue. Did you know that hyper-irritability is a real term used in conjunction with fibromyalgia and MP? Will I ask a harmless question and be met with a testy response tonight? Will I try to smooth it over and be met with hostility? Will I move in for a kiss and be faced with stony crankiness? Will I be excited, ready to tell a long story only to be told wearily, "I just want to eat dinner and go to bed."
I've stopped asking Rick, "Are you okay?" because the answer is a permanent "No." Instead, I've amended my inquiry to: "How are you feeling today?" with the implied but unspoken addition of "...compared to yesterday?" or "...after that good/bad/interrupted sleep you had last night?"
My parents want to ask us over for dinner 3 weeks in advance and I have to accept/decline based on Rick's current status, which means absolutely nothing, because everything can change in an instant. I try explaining, "We'd love to come depending upon how much sleep Rick manages to get the night before that day" or "if we don't have too much to do the day after" or "as long as it's a Saturday" but it always comes out sounding lame and annoying and really wishy-washy or inconsiderate of their schedule, which isn't how I mean it at all.
Sometimes, we accept invitations and then I have to call the day of whatever the small event is and apologize that we can't come. Sometimes I go alone, making excuses for Rick - he isn't feeling well, he has too much to do. But what I really mean is that he didn't sleep last night or he woke up feeling miserable or he over-did it the day before. Sometimes I can tell the night before that the following day will be shot. He's up too late, agonizing over not being able to fall asleep. He takes two sleeping pills instead of one. He drinks too much to numb the pain.
It's hard to explain to someone that one night of sleeplessness doesn't just ruin the next day for Rick, it ruins the whole week, it throws us off-kilter. It takes forever to get back to "okay," back to a routine of semi-normalcy, of Rick feeling like he is at par with the pain. Because it's not even about being one step ahead of it - that's become basically impossible. Just remaining steady, prepared enough, awake enough, on top of things enough... that's all we can ask for.
I say "we" like I have any clue what it's like to live with unrelenting pain and agony 24 hours per day, 7 days a week. I say "we" like what I experience is somehow as bad as what Rick has been forced to call Life. I get kind of pissed off at myself even insinuating that I have some vague idea. I don't live with that - I just live with him. And here I am whining like that will make it more bearable... and...
Every day is not a bad day. But I do get to feeling sorry for myself. And let me tell you - it doesn't help when I too get frustrated and Rick responds with a pitiful: "I told you I'd ruin your life!"
My life is far from ruined. In fact, my life is filled with blessings. Would I do anything differently? Do I have any regrets when it comes to Rick? Not a one. I suppose it's only natural to feel frustrated sometimes, to turn self-pitying, or even angry. But what Kate's father said to her in the blog post which inspired me to write this one really resonated with me: "Everyone has problems. You just know exactly what his are."
Wow. It's SO true.
And also from Kate's blog post:
At the train station in the car, my dad says, “Who do you think the normal people are?”
And I am already saying, “I know, I know.”
His voice is gentle. “Everyone thinks there’s someone out there who has this perfect, normal life. And it doesn’t exist. Everyone has problems.” He says it again. “Everyone has problems.”
I am embarrassed. “I know,” I say, again.
And God, I’m lucky. It hit me on the train, on the way to New Jersey, reading my old journals. Here’s this girl, who has no idea what’s going to happen to her, who will one day be a writer in New York City, married to a man so weirdly well-suited to her that she feels like she’s tried to write his character before but could never make him sound smart enough, who has so much future ahead of her. So much neurotic, self-absorbed, striving, journaling, confused, eager, interesting future ahead of her.
I so totally agree. I believe I was actually a little bit in shock, reading that last bit - I feel the SAME WAY. I'm embarrassed at times by my complaining, my whining. Every couple deals with something. I'm SO lucky. I have the BEST man... "so weirdly well-suited" to me, as Kate puts it... and maybe he would have been TOO perfect if he didn't have some of the problems he has, and that's why God had to throw them in there.
I'm a helper. I want to HELP, for God's sake. And I simply can't. I mean, yes, I can be kind, I can be patient, I can love him. But it doesn't seem actively enough. It doesn't take away those problems. It doesn't alleviate them. So I try to heap on the good stuff, to help combat the bad. And sometimes it works. And other times it doesn't. Trial and error. Good times and bad. Sickness and health.
And here I am, bitching on a blog, though I wouldn't change a thing. I think more than anything, what I'm attempting to do is show that I am human, that professing love for someone doesn't mean you lie or avoid talking about the difficult things in life. I love Rick, I love our life together, and you'll hear me say many times how great our love is - because it is true. That doesn't mean that we are made of the stuff of fairy tales, ever-perfect, without a care in the world. Real love is NOT love in which there are no barriers. Real love is love which leaps over barriers, climbs over barriers, pushes through barriers...and still remains in tact, stronger than ever.
I'm thankful for our barriers, because they teach me patience, resilience, and compassion - and because they show me that unconditional love is not a made-up concept or one that applies only to parents and their children.
I think, more than anything, I was just so happy that someone out there understood, like Kate from Eat the Damn Cake did. I think I was relieved to realize yet again that yes, it is OKAY to be frustrated, angry, jealous of unfairnesses, and still be completely content with the life you've chosen for yourself.
So you know what? DO freakin' marry a sick man. Don't miss out on something meant-to-be/fantastic/happy and REAL. Don't miss out on someone like my Rick, who holds my hand in the middle of the night...who saves every one of my poems in a special file...who makes separate drives to map out alternative routes for me just because I'm afraid of getting lost in the unlikely event the road I always use is closed...who leaves me a note to welcome me every single night when I come home late from grad school...who compliments me regularly...who gives me early birthday/Christmas presents because he's too excited to wait...who kisses me like he means it EVERY SINGLE TIME.