Let Me Have What’s Left…

At 2:25am sleep should have long ago found me. Rotted flowers knows I’m certainly exhausted enough. Pain has a way of doing that to a person. It exhausts you. It makes every breath, every blink seep out of you like last weeks squishy tomatoes. And you would think after 37 plus years of it I’d just be able to suck it up. That’s what society expects anyway. To that…to that as sit here in bed with my laptop on my legs acting as not only a therapeutic outlet, but a heating pad of sorts…to that I say “Fuck You”. Unless you have lived it, I don’t really want to hear your grand insight.

What a way to start a new blog eh? It is what it is. I’m not here to sugar coat it, I’m not here to make anyone feel better about their life by thinking, “at least I don’t….” Yea…great for you, here’s your trophy. Go ahead and put it on your mantle.

And I know that reads like I’m this horribly angry, bitter soul. I’m not. Really. I promise. Ask my closest friends, ask my Sister, I’m not. I don’t hide from the world. I’ve been and done more than most people without a chronic pain/autoimmune based illness have. I’ve been to 49 out of the 50 States…Alaska being the only one left to hit, I drove my Subaru Legacy up and back down the “Devils Slide” in Moab, Utah…a hill typically reserved for Jeeps and jacked up 4×4’s, I’ve made climbs in the Colorado, Utah, Idaho and Montana Mountains which would intimidate other climbers, (did I do it without adaptive gear, or without some help from friends, of course not, but I still did it.) I spent the winter of 2005-2006, less than 4 months post total knee replacement, with the added bonus of being a single parent to a 1-year-old daughter and a full-time job, working several times a week with a repeated Silver Medal Paralympic Cross-Country Skiier from Norway. My only reason for not continuing with that training was my commitment to my daughter, something I don’t at all regret. Miss, yes, regret no. I’ve gone as far as academically possible, not because I’m all that smart necessarily but because like the climber’s answer to the question…”Why do you climb mountains?”….Because it was there..I did it, like I do everything, because “it’s there”.Those things were there and I’m always, no matter how cranky I might get, not matter how much stiffness and pain I’m  experiencing, those things were/are just…just…just there. So no, I’m not the bitter crabby person those first couple paragraphs make me sound like.

This illness, this disease has taken so many things away and out of my life. I won’t…I refuse to let it take everything. Not like it’s taking sleep away from me tonight, as it did last night. As I hope it doesn’t tomorrow night.

What has it taken? It has taken a bit of my soul, and it has taken a lot of my heart, and it has taken far too many friends.

But maybe I should start at the beginning…

Before I hit my 2nd birthday I had already had my first surgery of sorts. I had what they thought at the time was a tumor of some kind removed from the back of my right wrist. Hindsight it was more than likely something called a synovial cyst. Then at about 18 months I was at day care/pre-school and my right knee gave out and I couldn’t stand up or walk anymore. That quick, that sudden. My knee(s) just stopped wanting to move, stopped wanting to work. Pretty soon almost every other joint in my body joined in the revolt and so for the next few years I think I spent more days and nights in the hospital than not. Although if you ask my Mom and other family they remember I was refusing to walk before even the knee incident; for no apparent reason anyone could tell. This is the part where you, the reader who is learning all this about me for the first time will start to go down that, “oh you poor thing” path. Well, get off it right now. Because that’s also when I got extremely blessed. So get off the pity path and back on the plain old boring paved one. Our family doc had just read an article about a new doctor in town who specialized in an area of medicine called Pediatric Rheumatology. A call occurred, I was seen by this newer doc in town, and everyone’s fears that I might have Leukemia or some other equally terrifying diagnosis were put to rest. Instead I was lucky enough to “get” Juvenile Rheumatoid Arthritis (JRA), but lucky to find  the best Pediatric Rheumatologist ever, although I may be a wee bias. (Note: The labs, as far as white blood counts can, and often run parallel between the two diagnosis.)  Now is the part where some will raise their eyebrows and say, “Lucky?”. Yes lucky; an idea that on nights like tonight when I could sink deep into depression, sadness, and darkness I have to cling to until my fingernails rip out.

Here’s why.

This disease has taken and taken, and then taken so many things from me. It’s taken my ability to do so, so many things. Such as…as much as I love to mountain bike, and while I used to, the last time I was able to even try was several years ago while my daughter was on one of her last visits she would ever have with her adoptive Dad (my daughter is adopted), I loaded my bike on the back of my hand me down Mercury Tracer…pink none-the-less…stuffed my camping gear into the back seat and headed south from Salt Lake to Moab. This time to ride the slickrock trails instead of bouncing over them. What can I say, I had gotten bored with the trails around Salt Lake. Little Cottonwood Canyon still gave me grief, mostly because of the increase in grade combined with the obstacles on the trail..oh say like…hikers…. :) For the most part though, I was eager to challenge myself to the world-famous Moab routes. It was a busy weekend, and because of work I got a late start on the road so I knew there was a chance I would have trouble finding a campsite. Sure enough, I ended up parked in a turn around off a two lane canyon road, curled up in the backseat after shifting all my stuff to the passenger seat. The next morning I could hardly move my legs, my neck, and my fingers were the size of a pack of Nathan’s Hot Dogs. I managed to get my bike off the trunk rack, but shifting gears, and even putting on the brakes was not only physically difficult, but it hurt like hell. As with other things this disease had taken I added one more thing to that list. And it hurt like hell.

It hurt like hell.

The same as it hurt like hell when I found myself in a marriage with someone who while he promised he could handle it if I “got sick”…read: had a flare up with my arthritis…the same way it hurt like hell when I found out that not only could he not handle it, it was as if I suddenly developed a third arm growing out of my forehead.  He used it as an excuse for his drinking too much, for his screaming obscenities every other day, for lots of things. One night in particular, the night one of the last straws was loaded on an already overloaded back, occurred when he said that he didn’t feel the least bit bad about slamming me into the wall since if I broke something again it wouldn’t hurt me as bad as “your fucking disease bullshit”. Yeah..real charmer that one. Yeah…Semper Fi there big guy…Semper Fi. The next week I found new digs for my daughter and I, making excuses to a lot of those I knew about why she and I were bailing. I made excuses not so much out of a sense of pride, but because…because it hurt like hell and I needed to…I had to process it all inside myself first. I had to let the scars from that hurt heal. I had to get back who I am, who I had hid in order to try to appease someone who will never be appeased with anything, or anyone. And while this disease wasn’t the sole reason things didn’t work out, it certainly provided a great cop-out, and a great excuse for him. At least the one excuse he used the most for his behaviors. Reality check though…he wasn’t strong enough in himself.

I say that because in so many of the relationships in my life, it’s the strength of the person on the other end that isn’t there. Some never had it, but I chose to ignore that. Or if they did have it, eventually it stripped it from them. Stripped it from them in the way that only watching someone you love and care about be in pain can do. The same way as it stripped my strength on that mountain bike trip to Moab. (Although on that trip I didn’t just turn around and head home, I stuck around and met some very cool people. A little life lesson I hope people in my life now, and those who might come later take heed of. Find the strength, the commitment to stick it out, there is always something good to come of anything, no matter how bad, scary or just downright icky.)

But it is what it is, and really, it’s not so bad. As I said, I’ve been lucky in some of the most meaningful way a person can be.

I’ve been all over, I’ve worked at some amazingly cool jobs, I’ve studied my ass off, I have worked my ass off to be the best Mommy I can to my daughter, and I’ve rescued/foster countless large breed dogs who had been mistreated and whom others were hesitant to take in because of nothing more than their size. I’ve been routinely escorted from a parking lot in downtown Cleveland to a Saturday morning class by a homeless gentleman with one arm who never once asked for money, or food, or anything more than just a friend to talk to. Something I was happy and felt blessed to do. Not out of pity, but out of just being a friend, and a human. He was a kind, warm soul who 98% of the people we would pass would do their best to not make eye contact with, let alone speak to. I’ve painted abandoned motel rooms for non-profits providing shelter to women just released from prison, and I’ve been a foster parent to a beautiful little girl whose sister is now that 7-year-old little girl I call my daughter. There is rarely a night that goes by that I don’t, even if for just a moment, wonder if that other little girl is safe, fed and sheltered; but for the time she was in my home I was ever so lucky. I have a wonderful family who put up with what I like to call “my crazy-gothness”. I have amazing friends who not only do the same, but who are there to kick my sorry butt back into line if I start to stray into a dark place. I have a daughter who is intelligent, imaginative, creative and who, I swear, gives the best hugs this sometimes cold, mean world will ever feel. I’m blessed and lucky for all those things.

And I have hope. The greatest thing, next to those hugs that is, I have hope that things will only get….will only continue to get better. All the way around. So while I will have gloom and doom times, while I have times when I feel like warmed over camel poop, times when I want to put the headphones on and shriek into my pillow because the pain is so freaking horrible, there is always going to be, there always HAS to be that hope.

Some of the lyrics of the song above, “Breathe” by Breaking Benjamin include:

“So sacrifice yourself, and let me have what’s left.
I know that I can find the fire in your eyes.
I’m going all the way, get away, please.

You take the breath right out of me.
You left a hole where my heart should be.
You got to fight just to make it through,
’cause I will be the death of you.”

I’d like to dedicate those lyrics, and in fact the whole song, to my good buddy Arthur, which is what my kiddo calls my arthritis…I’d like to dedicate these words to Arthur. You can be such a son of a bitch, and while I wish you would..sacrifice yourself and leave me what’s left, make no mistake my friend, my partner, I will be the death of you, not the other way around.

4 responses to “Let Me Have What’s Left…

  1. Beautifully said. Amazing outlook on this disease that we all have to live with. I’ve been living in pain to some degree for the last 16 years – since I was about 20 years old. Diagnosed a week before my 36th birthday this year. I will not let this disease be the death of me. I continue as much of normal as possible. I am not too proud to ask for medication when I am in pain, or nap when I am tired. But I will continue to be “mom” to my four young children. I will continue to climb trees and walls and roll on the ground and into strange places in my photography career; I will continue to run a successful business; I will continue to be the best wife I possibly can be.

    I am not the disease. I will not become a statistic of the disease. I will manage it successfully, just as I do everything else in my life. Just another thing that I have to take the bull by the horns with because nobody else will if I don’t.

    Your blog entry has brought me to this realization – there is a choice of rolling around in stewing in self-pity, or taking “what is left” and sucking the marrow out of life.

    Thank you.
    Your ‘sister’-in-RA

  2. The courage you portray is astounding! Thank you from the bottom of my heart for sharing your story with us. I am so looking forward to your blog so I can continue reading on how you win out on arthur. I just love when we get one up on him :-)

  3. Wonderful post, I enjoyed the message behind it. And while your daughter calls your arthritis Arthur, my 2 boys (ages 10 and 13) like to joke about my “Hemorrhoid Arthritis”, not rheumatoid arthritis. Tends to lighten the mood sometimes. Congrats on all you have accomplished.


  4. Nicely said. I love your Breaking Ben lyrics. I like lacuna’s ‘Sick’ song “…I’m so sick, infected with…” And oh my gosh quite a few alternative rocks songs actually. Hang in there, I’m in the same kinda boat. Retired due to disability caused by my JRA in ’07’ after three hip surgeries and one hand, still can’t get used to it I’m afraid. I wish I have traveled as much as you! My Dream would be to see all our lovely country before I rub out of super glue and totally far aoart. So far so good, I am a tough cookie, my family knows me as nice and sweet as well, its hard when your supposed to be the strong one. So hard when you take care of everyone because you love to, and JRA and its many fun surprises takes that all away and slaps you while your down.
    I love your idea to blog, writing always helped me feel better…when my hands are not swollen that is…

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