Keeping the faith

I come from a religious family, there's no getting around that. I was born Christian, raised Christian, and am a Christian. From the time I was big enough to understand directions I found myself running around as a sheep, wise (wo)man or shepherd in the Christmas pageant. When I reached the later years of elementary school I would get up in front of the congregation and read the scripture, or sing a special song for offering time. Being part of the church was part of my childhood, and became a part of who I grew up to be. My family is firmly planted in faith, and I have never known any different. Sundays meant church and family dinners, mealtime meant prayers, Easter meant the sunrise service, the first sunday of the month meant Holy Communion--that's just the way it was. 

I grew up in a faith based environment wrapped in prayer. Our father is the great provider, the bringer of light, the almighty creator I credit for our very existence. He has more power than power can know, more might than the crashing waves of the ocean, and the dedicated, encompassing, unconditional love of a parent. I was raised taught that God can do anything. He sent a son who can cause the blind to see, calm the raging seas, and multiply two fish and five loafs of bread. If that's what he can do in the flesh, then his power in heaven must be so much more. God makes the impossible, possible.

So why me?

Why is it me who was given this? Me, the one who followed her entire life, the one who grew up in the third pew on the left-hand side, the one baptized as a baby and confirmed as a teen, the one who prayed and gave thanks over every meal, the one who knew nothing more than to trust that God will take care of us. Why was it me? As far as christianity goes, I played it by the book. I did everything right. I followed when he said follow, no matter how scared I was (Argentina mission trip--that's another story). I listened when he told me to share my story. I loved when they did not deserve it. I believed when no one else did. I did everything right, so why me? Why was I the one he chose to let this happen to? Any Christian will tell you that if he chose to, he could heal me in an instant. Better yet, it wouldn't have even happened in the first place. 

For a long time, this is how I felt. Angry, just angry. I resented the years of my life I spent devoted to a God who would punish his child who did nothing wrong. I resented telling others about my God-filled life, hoping that they would find his light. I wanted to scream at everyone to run away before they too were betrayed by the one being who could cause and cease their suffering. How was I supposed to feel? My days were filled with physical pain, how was I supposed to praise and glorify the one who could stop it--yet didn't? It was heartbreaking to have my entire outlook on life be shattered when my compassionate, nurturing, and merciful God allowed me to experience what I continue to experience. Wrapped in anger and fear I was. Fearful that my God was punishing me even though I begged for forgiveness for whatever I had done. Afraid that my God has forsaken me, forgotten me, left me. Angry, scared, confused, hurt, broken...

It would be a blatant lie to say that my faith has not been challenged by my disease, I think that is fairly obvious. For a long time I lost my faith, until I realized that without it I would be even worse off. My God knows me, and knows what I go through. And therefore, he is the only one who can heal me. I don't mean cleanse my body of disease (although if you can read this God, that is acceptable too!), I mean find a way to treat it. Healing may mean finding the perfect cocktail of medicines, or a lifestyle that promotes wellness in the body. God is the only one who can help me find that. Healing may mean finding solace as I come to terms with the reality of my new existence, mentally accepting every obstacle as a challenge that I personally must and will overcome. 

Without this disease, I would miss out on a lot of things. With this disease I was given the opportunity to volunteer and advocate with the Arthritis Foundation and inspire thousands to overcome their own struggles. I have learned to appreciate the people around me, the ones who "babysat" when I had surgery, open jars for me, and offer their assistance. My disease has showed me that I am more fortunate than I realized, and for that I thank and rejoice for my creator.

I am now a firm believer that God is carrying me, leaving only one set of footprints on the beach. I will praise him through the pain, and thank him for the blessings he has bestowed upon me. My family, my church, my friends, my doctors, the roof over my head, the food on the table. God will not test me past my ability to overcome, and is using me as a tool to spread a message of hope, healing and faith. I may live my life in pain but I am living a  damn good life, and something as silly as a disease has no chance at trying to change that.

And for those of you reading this, those who struggle with disease or anything else, just know that you were given this life because you are strong enough to live it.

Ignorance Is Bliss

I can see it in their faces. It’s the same look every time on every person. They read like books with the same three expressions: surprise, sympathy, and confusion. Surprise because I have an autoimmune disease that they have neither heard of nor knew that I had. Sympathy because they learn that I have a disease that causes mass pain. And confusion because they can’t tell that I have a disease just by looking at me. Their eyes all have the same confused statement behind them: but you don’t look sick.

They’re right of course—I really don’t look sick. I suppose this is a good thing. If I looked like I was sick I would just get a lot of pitying stares, which I very strongly dislike. I feel like a small, wet puppy that is tied to a pole left out in the cold rain when people look at me like that it’s awful. Again, my wrist braces are the only outward sign of something. Not a disease, just something. People always ask me how I managed to injure both wrists at the same time, and I dread having to explain the real reason for the braces. It would be easier if they were sprained, but they’re not. And when I explain I always get the same reaction and see the same three expressions without fail, because I don’t look sick.

Most of the world is naïve to a disease like mine. They understand the big-name issues such as heart disease, all types of cancer, Alzheimer’s, and diabetes, but not so much autoimmune ones like mine. Oftentimes they just don’t know it exists, and since it is not nearly as common or publicized as others they would have now way of knowing about it. I myself never knew what it was until I was diagnosed with it, and forced to learn about it. To a certain extent, I can’t blame people for not knowing about my disease—and I usually don’t. But when I don’t receive a certain amount of respect for my limitations I have a problem. There is a massive difference between being naïve, and being ignorant. When you don’t know I have problems, I certainly don’t expect anything form you other than common courtesy. But when you are downright rude (regardless of whether or not I have a disease) that’s not okay. Or when you know of my disease, and provide me no allowance or even common courtesy it is really not okay. I have dealt with this on more than one occasion. Ignorance. Plain ignorance. People who think I am exaggerating or faking it just so I can get attention or gain sympathy are extremely infuriating. How can people be so rude? I don’t understand how they can know a genuine problem exists, yet play it off like it is nothing and even have the audacity to accuse me of stretching the truth for selfish purposes. Especially when it’s people I know on a personal level—it stings.

It’s always hard to get people to understand how limiting a disease like mine can be. I’m 18 years old, and people expect me to be able to conquer the world. I have pain radiating my hands, and wrists and I’m still expected to hold open the door for everyone else. I have had four-foot surgeries in the past six months and still experience a lot of pain when pressure from standing is applied to them, but I’m still expected to give up my seat for an adult. When all the children are sitting on the floor, I am supposed to sit with them. Except for the part where it is really painful on my right knee, and it is almost impossible to pick myself up off the floor without help. I think people know that yes, I have pain problems, but either fail to realize or choose to ignore that fact that it prevents me from being able to do a lot of physical activities—even trivial ones. People don’t understand the kind of pain I live with, and don’t know the kind of affect it has on me. I think a lot of it is because they don’t want to know about what is happening to my body. And sometimes they don’t want to be bothered by it. If they acknowledge that I have certain, special needs they usually feel duty-bound to make it happen. It may mean a little extra patience on their part, or a little extra effort. I guess it depends on how generous or selfish the person is. I know this can make me sound a little selfish by expecting people to come to my aid, but I have come to accept the fact that I need help and am open to asking for it. This doesn’t mean I like having to ask for help, it just means that when I know I will need it I make sure it is there. But it’s always aggravating to come across people who don’t seem to care.

Ignorance is a wonderful thing for those who have it. They have no problems, no cares, and no worries because they chose to stick their heads in the sand. Turn a blind eye. Fake naivety. Ignorance—and not just to disease—will be the downfall of humanity. How can anyone expect to improve our society when they are so busy ignoring some of the problems? I wish everyone could be on the same page, especially when it comes to disease like mine. Not just so they will act more kindly toward me, but also so that they will be a kinder person in general. Autoimmune disease is a nasty thing, and if everyone understood the gravity of our situations life would be much easier. We already deal with constant doctors appointments, medications, and never ending symptoms. We aren’t asking much from society. A little bit here, and little help there. We don’t want your ignorance. We don’t need your ignorance. We need your respect.