Just a Part of the Whole

When I stopped dreaming I could run, I knew for sure my life had changed permanently. The disease I have is called Ankylosing Spondylitis and it's different for every person that has it, which makes it difficult to predict where your journey will take you. The basic explanation is that it is an autoimmune disease that usually starts in your early twenties and begins by attacking your joints. It is progressive and systemic, but the progression and systems it can affect are as different as your genetic make up. For me, it began in my sacrum (low back) and my spine. The "goal" of the disease is to attack the joint and build scar tissue around it, causing pain and stiffness. Then the scar tissue eventually (for many) turns into bone and fuses your joints together. Until recently, most doctors believed that AS was a man's disease and was rarely seen in women. It is now known that it is prevalent in women as well, and they are learning the progression, symptoms and x-ray findings can be significantly different in women than men, which will hopefully be helpful in future diagnosis.

For me, over the course of the last 14 years, the disease and my life have changed dramatically. I won't go into a play-by-play for you, partially not to bore you to tears and partially because all of the years tend to run together after awhile. I will say that in the beginning it was pain like I had never felt before, which was compounded because no one knew what in the world was wrong with me. I had a lot of the knowing nods as if to say, "Oh, that silly little girl is overreacting." I actually had one doctor ask me if I had a boyfriend that was stressing me out. I wish I could tell you I had a witty comeback for him, like "The boyfriend is fine but I'm finding you very stressful." But when you are exhausted, sick and in pain all you can think to do is look at him bewildered and say, "No. I'm not sad, I'm in pain." And sadly, that doesn't always get you very far.

Once the diagnosis of AS was put on the table, everything about my body started making sense, and things that I didn't know went together turned out to be symptoms of the disease. The pain, the digestion problems, the night sweats, the bouts with iritis. Ahh, the good old days. Things have gotten more complicated since then with breathing issues, swelling of joints and more areas of my body being affected... and the exhaustion. I also have leukopenia, which basically means my white counts remain lower than normal, and actually decrease when I'm sick instead of increasing. This means I have to be ridiculously careful about being around someone with the sniffles for fear of getting pneumonia, which has become somewhat of an expected yearly ritual for me.

My life now, to put it bluntly, is painful. If I'm having a good day it means my pain is moderately high at best, and I've showered and gotten around my house without having to give myself a pep-talk first. I have someone who gets me groceries once a week and another person who cleans my condo every other week. A year ago I was able to drive myself periodically to Walgreen's for short little errands, but it's been a long time since that was an easy trip. I don't count out that I will be able to do that again, but it's not in my reality right now.

And living in the now is the easiest way to handle my life. It all changed when I realized that in my dreams at night, I was walking with a cane or crutches. And in my waking thoughts I can't imagine I ever ran track or jumped over a hurdle without it being painful. I don't remember what it felt like to not have pain, and while that was upsetting at first, I think it is actually easier this way. I don't long as much for something I can't imagine. I think if I dreamed I was running every night, waking up to the reality of having to figure out how to get out of bed would be crushing.

Other than the crutches and the wincing in pain thing, when I'm not on steroids I look pretty average and healthy. And I don't want to look otherwise. I will write about this as part of my life, but I'm not going to lament endlessly on this blog about my daily struggles and pains and complications. It's hard for people to understand that just because I'm not complaining, it doesn't mean I'm getting better. It's just that when you ask me how I am, I'm more likely to tell you how I am despite my disease, not because of it. I am more than that. I'm more than a sick person. I'm a person who is sick... and as I often tell my mother, my body is brutal but I'm ok.

My life is a difficult balancing act, but I am not being flippant when I tell you that I have a good life. I have a home, friends, love and support. I have that cute dog I've talked about at length and I have the time to really be there for people when they need me. This is not the life I imagined for myself, but it's the life I've been blessed with and I won't take a moment of it for granted. And if you're taking a moment to read this blog, I'm not taking that for granted either. Thanks.

The Origin of a Name

My family has been known to be a little quirky at times. Like when I tell people that as a child I couldn't wait until Friday nights so we could all gather in the living room to dance to Lawrence Welk. Didn't everyone have this kind of togetherness as a family? Didn't everyone's mother arrange the birth order of her children to match the boy/girl, boy/girl, boy/girl ratio and create built-in dance partners? Maybe that's a story for another time...

One of our other quirks is that we didn't grow up using our real names. Oh, in public we managed to be presentable, but at home it was another story. My oldest brother is Goose, followed by my sister Jo-Babe, my brother Humpy (so unfortunate), my sister Spook and my brother Hoody. And then there's me, Gitz. Or Gitzen Girl. Or Gitzy-mama. Or Fritz. You get the idea.

 
Apparently when I was a wee-babe my dad could get me to laugh by tickling my neck while saying the stand-by "Gitzy Gitzy Goo." And I thereafter became his Gitzen Girl. I think at some point Gitz turned to Fritz when they realized I walked everywhere on my tippy-toes dancing and performing for anyone who was willing to pretend like they were interested, and "fritzing about" became my favorite pastime. And while he may have dropped the "Gitzy Gitzy Goo" phrase, my dad's favorite game is still trying to corral little children while "getting their neckers" and tickling their neck until they beg for mercy or beg for more.

I do have a more endearing nickname from my dad ... which I was teased endlessly for my freshman year in college as I hit the button on my answering machine and it started saying, "Hey, just checking to see how my Babydoll is doing..." You never outgrow a name like that, do you?

And for the record, my brother's nickname didn't start out as Humpy. He fell a lot as a kid and they called him Humpty for Humpty Dumpty. And apparently no one around felt the need to mention that taking the "t" out left it with a whole other meaning. Like I said, we were perfectly respectable in public...

The Puzzling Pooch

 
See that dog? My dog? He is what one would call a conundrum.  A puzzle in every sense of the word.

He has a tendency to want to bite people, which can prove problematic. I never knew he had a pension for biting until one day I answered the door and the mayor stood in the hallway. The mayor of our town happens to live in my condo building, and when I opened the door my sweet, adorable dog was resting quietly in my arms... until the mayor put out his hand and dear Riley LUNGED without provocation to bite at said fingers. I jumped back (well, as much as I can jump anyway) and the door I was propping open slammed in the mayor's face. So let's recap... my dog nearly bit him and I nearly smashed his face with the door. The mayor. And did I mention I had never got around to registering my pooch? The one that tried to bite the mayor?

Riley also has a tendency to cry or howl when I am not in his line of eyesight. If I ever want to feel loved and appreciated all I have to do is walk into the bathroom without him and shut the door. I soon hear his heavy breathing as he tries to root his nose underneath the door and begins crying at the thought of never seeing me again. It's pitiful. And kinda sweet. And because I think that's sweet it's clear I need to get out of the house more and find human contact.

And my least favorite quirk of my perfect pooch? He has been known to pee inappropriately. And I have been known to LOSE MY MIND over it. I can guarantee you I have spent more hours in my day obsessing over the habits and emotions of my dog in an attempt to make him feel comfortable and loved enough to stop marking his territory than any mother has ever worried over potty training her child.

All of the above issues have led to a remarkable solution... and I take no shame in admitting it... my dog is on antidepressants. My vet has suggested, and I have to agree, that Riley has developed anxiety over my illness. I have heard of dogs that can predict seizures or instinctively dial 911, but who knew one could love you so much they were simply nervous that you felt bad?

When the vet prescribed the medication (of which he is now on the maximum dose) he warned me that Riley may become subdued or lethargic. If you have been to my house and seen my 10 pound pup jump so high that you can catch him in midair as he greets you, you understand that this is not a side effect we had to worry about. He runs laps around the house, loves to go outside and even plays hide-and-seek with me on a nightly basis. Someone really needs to fill him in on the fact that he's not human, but I just can't bring myself to break it to him.

But Riley and I have found our groove. He hasn't been peeing (knock on wood for me, please), we have a routine when people come so no biting occurs and I let him follow me into the bathroom because some battles just aren't worth the fight. And my dog loves me so fiercely I sincerely don't know if I'd be sane without him. He lays with me on the couch when I don't have the energy to get up. He will stay in bed with me until noon without protest if I've had a difficult night. Before I even realized I had an infected picc line this spring he laid his head on my arm and whined in sympathy because he somehow knew how much it hurt. The last two days when I was sick with a migraine, he laid with me, licked my head and growled in the dark... I still can't decide if he was threatening the headache or just letting me know that he wasn't about to let anyone mess with me.

And the truth of the matter is, having him with me all the time feels as important to me as if he was my seeing-eye dog. He is my constant, my company. He makes me laugh, brings me joy and settles my soul. So what if I see signs that he's developing OCD? He puts up with my craziness, after all... the least I can do is put up with his.

And They Danced

The kitchen, as in most homes, has always been the gathering place for my family. Some credit it to the smells of food wafting through the air, beckoning anyone and everyone to come and fulfill the curiosity their stomachs have forced upon them.

Others say the kitchen is essential to a family because it’s where the most time is spent preparing to formally sit and enjoy one another. Why wait to sit at the dining room table when you can sit on the kitchen counter, sneak samples of the cuisine, talk until everyone is trying to be just a shade louder than the other, and be consistently on whichever counter mom needs to be clear at the moment? This inevitably forces her comment, “We do have other rooms in the house, you know!”

But, of course, we all know deep down the commotion would be missed, and it is sometimes said with an edge of pride that her family has grown up and the grandchildren are now carrying on the tradition. While all these are compelling reasons to hold the kitchen as the room of high esteem, none come close to competing with my mind’s eye of my childhood in that old farm kitchen.

The hustle and chaos were ever present. My sisters and I would chide my brothers — who were never required to cook or do dishes — that if they stayed in the kitchen they would undoubtedly turn into girls. No matter what the commotion, regardless if the television was blaring or if the radio was silent, my dad would come up behind my mom — standing at the sink or stove or counter — and they danced.

They danced. Dad would hum a tune or click out a beat and they would dance as though six children weren’t running and talking and creating an atmosphere of Mardi Gras on Fat Tuesday.

They were experts in tuning out the world, until I came around. Until dad felt that tug on his leg. Until mom gave dad the knowing grin and I was scooped up between them. Dad would have just showered and the smell of his aftershave would wash over our small little circle of three. Mom would wink at me and we would begin the dance, the twirls, the spins. We would begin what I felt, but was too small to articulate, was my own world.

The dance would eventually end. The potatoes would boil on the stove or the phone would ring, and the universe would put my other little world on pause. But it was never on pause in my mind. Even today, when life seems overwhelming or uncertain, and that sense of security feels just beyond my reach, I can close my eyes and smell the smells of my youth. I see that old kitchen and my young parents, and I rest comfortably in the knowledge that at home in the new kitchen, my older parents are still dancing.

So if you ever wonder how to give your child security, how to teach them the presence of love, how to show them to live in the here and now — show them you love each other. Show your child you will forever love them by forever loving one another. Turn to your partner in the midst of chaos, in the midst of fear, in the midst of uncertainty, in the midst of love — and dance.

Rummaging Through

Two nights ago, tornadoes ripped through nearby towns. They tore apart homes, families, livelihoods and security. I sat for nearly seven hours as the newscasters told me that it was going to miss my town, that it was heading straight for my town and finally that it had created destruction everywhere around me, but spared my town. The sky was ominous. The atmosphere was, in a word, creepy... and the sound of a jet hovering overhead turned out to be the F5 tornado many towns away. It was the sound of lives changing in a moment.

I spent the day today going through my closet and putting together things to give to the people of Parkersburg, whose town is gone but not lost. In the process of searching for things that may help build their lives, I discovered myself finding a way to let go of my own past life. Before I became sick I took my full life for granted. I assumed I would always be social, rarely at home, singing at weddings and working to my heart's content.

Now, because of the need of others I finally let go of the dresses I don't need for singing at weddings, the shoes with heels that are too high to use with crutches and the little clutch purses that can't swing hands-free across my body. They haven't been of any use to me for such a long time, but I couldn't seem to get rid of them without a reason. I mean… what if, after ten years of getting worse, I wake up tomorrow able to sing at a wedding again? What if, after barely leaving the house a handful of times in the last year, I break out and go on a date? Those heels would come in handy. 

But the reality is that I have to let go of sifting through my life just as the people in Parkersburg, New Hartford and Dunkerton will soon have to do. They are going to have to step aside and watch the bulldozers carry away the remnants of their old lives so they can start rebuilding their town, their homes, their families, their livelihoods. They will find their new normal in the midst of the chaos and see blessings in tragedies. They will struggle between holding on and letting go, and I will cheer them on in spirit as I do the same with my life.

Somewhere in the midst of all of their trouble, in my heart aching for them and trying to imagine their loss and their gratitude and their hope, I let go of hopes that aren't meant to be fulfilled and offered the material remnants of my past life for their new lives. It's another start, and a fresh start always means hope is on the horizon. Theirs may be the hope of building bigger, stronger, better. Mine may be of building a resiliency for the pain that lies ahead. But both are hope nonetheless.