Sunday, August 19, 2012

Unwavering Love for a "Sick Man"

This week, I read a post by a woman named Kate at Eat the Damn Cake entitled: Whatever You Do, Don't Marry A Sick Man. I fell upon it by accident, through Twitter, as someone had linked to it, describing it as "touching." I clicked, I read, and my eyes welled up with tears... I began to type Kate a comment, starting out with "I love this," but my iPhone autocorrect caused my first line to be: "I live this." That turned out to be truer than the the former, so I left it.

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.


Jacquelineand.... said...

The worst thing in the world for someone who wants to help and heal has to be a situation where you simply cannot heal the person you love most in the world.

As for friends and family, look up the Spoon Theory, print it out and share it with them; it will help those who want to understand...those it doesn't reach will likely never be able to understand.

You, both as a caregiver and as a person need help, support, and understanding as well. It's frustrating, exhausting, infuriating, and saddening to have to deal with illness; another's as well as your own. You do know, I hope, that I'm always ready to lend an ear if you need it...or my eyes to read an email.

Thanks so much for sharing your own thoughts and feelings, as well as the blog link. =)

Arielle Lee Bair said...

Thank you, Jacqueline. I really appreciate the offer of a listening ear, as well as all your kind words.

Jennifer Friedman said...

This is amazing. I am so relieved to see you taking time to acknowledge your feelings about this and really being honest with yourself, and then going onto expressing how you cope, what you do have the power to do. and what you are accepting. You have amazing insight and beauty. I love: "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." Something to keep in mind in my own life. I admire you and the strength you exude to get through these struggles. You are so full of unconditional love and that's just purely beautiful, purely you. Thank you for sharing.

Anonymous said...

Check out The author has fibro among other things and is a brilliant writer. Rick (or you) might enjoy it.

My thoughts and energy to you both.

Take good care,

Arielle Lee Bair said...

Thank you, Jacqueline. I really appreciate the offer of a listening ear and I will definitely check out the spoon theory. You're great!

Arielle Lee Bair said...

Thanks, Jenn! It's always nice to hear that someone is appreciating what I say or do. I really appreciate you taking the time to comment. :-)

Arielle Lee Bair said...

Thanks Kristianna! I will definitely check out that blog! Rick's not much for reading but I'm sure if I find good, relevant stuff he'd like he would love for me to share it with him out loud. :-) Thank you again!

Miss Keira said...

I love your honesty. ♥

Neither Tim nor I are "normal". I have ongoing issues with fatigue and pain (not as severe as Rick's but it's enough to interfere with my ability to do some things). And, Tim has ADHD. Strangely, the combo of low and super high energy works for us.

We've both had to make 'adjustments' in our expectations and lifestyles. I've learnt how to ask Tim to do things in a way that doesn't stress him out. And, he knows when to get me to pinky promise him I'll have a low-key day.

I don't get embarrassed when we go out and he gets a little...hyper. I've stopped apologising to friends/family for his oddities. This is who he is, this is the guy I married and I'm slowly getting him to accept himself as he is. I know at times he wishes he could just "be normal" like society wants but realistically, it's unlikely to happen without him sacrificing a lot of happiness.

My hubby's condition never even factored into my decision to say 'I do' a month ago.

Kaylee said...

Arielle, this was beautiful. It's incredible to me how people grow and change despite illness, because of illness, and even independent of the illness altogether. I hate so much that Rick is suffering and I hate that you feel so helpless. Everyone does have problems but, you know what, some problems suck a lot more than others and that is so damn unfair it makes me want to cry. But everyone is also lucky and unlucky, and Rick is lucky to have you, and you're lucky to have him. Wishing you both all the best.

Arielle Lee Bair said...

Keira, thank you. And I agree with you. :-) Rick's condition doesn't make him who he is in the way Tim's "oddities" are part of him... and I think that is part of the difficulty. He's in agony...and he's unable to have a quality of life he wishes for himself. Heartbreaking. But the "what other people think" aspects are definitely similar and of course, Rick's stuff never factored into my decision to marry him or not marry him. I think you and Tim seem very well suited to each other... and I'm glad he makes you take it easy when you need to. I feel like couples who can keep each other healthy and grounded do more for each other than they realize. :-) Thank you for reading as always.

Arielle Lee Bair said...

Kaylee - thanks for you sweet words and for reading. It helps to know that people hear me and can just say that: "I'm listening. It sucks. You guys are lucky to have each other."

Sometimes I think that's what I need most. You're a sweetheart.

two birds said...

what an amazing post! i think that you are perfectly normal to feel resentment, anger, pity and all of that for yourself. problems are relative, and while you think yours aren't as important as his, they are, but just on a different scale. you are so strong and you are both so lucky to have each other!

BerryMorins Bits & Tips said...

As a chronic pain sufferer of 12 years and married, my husband and I have learned how important it is to keep the communication flowing.
That does mean that you'll say and hear things that aren't always pleasant.
But as a couple, we're determined to stay on the roller coaster ride with all it's turns, lows and highs.

George Tam said...

Hi Arielle. It has been a while since we last chat. Even though a lot has changed in yours and my life, what remained constant is your love for each other. I admire you and Rick for your strength. I read somewhere that, "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow'." You and Rick certainly exemplify that on a daily basis.
Take good care, my friend.


Arielle Lee Bair said...

two birds - thanks for stopping by! I appreciate the kind words.

Arielle Lee Bair said...

Berry - thank you for the insight. I am determined to keep open communication as well. :-)

Arielle Lee Bair said...

George - long time, no "see"! How are you? Thanks for popping in. I appreciate the kind words and the reminder in the shape of the quote you shared. Take care!