How an Autoimmune Disease Reminded Me to See the Beauty in Life
“But I still have mountains to climb,” was what I thought as tears streamed down my cheeks. Being diagnosed with an autoimmune disease as you approach your 30s is… devastating. It’s not going to go away. You are going to be forced to deal with hospitalizations, pain, horrible drugs that shut off your immune system and leave you extra susceptible to infections, more diseases. And the extra fun thing about any auto immune diseases, lupus, inflammatory bowel disease, rheumatoid arthritis, etc., is the fun little fact that they usually bring at least one friend to the party. If you have one… you usually end up with more than one, because basically your immune system is just… well, screwed up.
Sure, it’s nice to know you won’t die. At least not yet. But the reality is, you’ll hopefully go through periods of remission, or at least times when your symptoms are less awful… but you must face the reality that you will never get better, this will be your life from now on. You also have to face the reality that you have a disease that will need constant treatment and management, with what are some of the most expensive medications on the market today. It will affect every single thing you do, every single aspect of your life, no matter how much you fight it… or pretend that it is not happening.
So this would be my life now? My healthy young body felt like a trap, like a prison. And sometimes I looked amazing. You’d never even know anything was “wrong” with me. But I knew. I always knew, and now I always would. For the rest of my life. My new reality was that I always would know, and that my future would be that much more uncertain. No day the same. Would I be able to get out of bed tomorrow? Who knew.
Being chronically ill changes a person. I mean, you are always afraid of the next bad flare, or hospitalizations, or what happens next. And while some people might find it dramatic – people with chronic illness and disease often wonder if and when they will die. And we do die – and it’s not always when we are old. We live in constant fear and risk of complications from disease and from the drugs we take to try and control them or give us some quality of life. It’s a life sentence actually, knowing we might get somewhat better but we’ll never be healthy again. We won’t just get better or die. We live in an in between place, for our entire lives. And usually throughout our youth not just when we are older.
And so to me, in order to live, and I mean truly live, and not just exist, after a while, it was important for me to focus on remembering why. Why I wanted to keep living, breathing, fighting.
It started with small things, like suddenly remembering how good it feels when the spring sun touches your skin for the first time and it’s hot, and you can feel it radiating on your body. It feels so primal, so rejuvenating. I started to take every thing I enjoyed as a thing of beauty and I told myself – always be grateful.
Be grateful for this coffee.
Be grateful you woke up today.
Be grateful for your dogs… these eggs… the moon. Laughter.
Chase fireflies, and swim naked in the moonlight as often as you can.
And never, ever, give up. It’s not an option.
Sometimes you have to be broken open so that nothing remains. Sometimes in our ruin, in the complete destruction of ourselves, of our lives is where we are truly born. Where our character and life is truly forged and lived.
Your life and everything in it can be taken from you in an instant. We so easily forget this simple fact in our day to day lives. It’s very easy to ignore and not think about. Until it happens. So take it from me, if you don’t already know it, or if you are living your life trying to ignore it. You do not have an open ended stay at this hotel. Sure, you can be upgraded at any time, but you can also be downgraded, or kicked out on your ass in the freezing cold too.
So listen to me. Tomorrow isn’t promised, whether you are 5 or 50. Whether you are healthy or already sick. So don’t take a chance that it will be there, waiting for you.
So say the words you are holding back from the people you love.
Chase your dreams, no matter how big.
Kiss the boy.
Have the sex.
Take the risk.
Eat the extra piece of pie.
Live, each day, truly, the best that you can. Even if it’s just drinking in the small things in life… because there are not always second chances or tomorrows to wait for.
Life is hard. It’s really hard, and I don’t care who you are. Bad things are going to happen to you. People are going to judge you. You are going to make mistakes, and people will say what they want. But none of it matters . None of it matters. What matters is truly living while you can, being kind, acknowledging your mistakes, learning from them, hopefully growing. But if you are not making mistakes, taking risks, being talked about, you are not truly living.
And your life – your challenges, I don’t care who you know that has faced similar ones… You are not them, and they are not you, and no matter how many people we are lucky enough to have in our lives hopefully offering love and encouragement, the truth is we really do walk this earth essentially alone. No one can be inside our brains, or our hearts, but us. And so we must do whatever keeps us living, whatever keeps us moving forward, healing, dreaming. Life is short, and if you blink, or over sleep, you’ll miss your chance.
And that’s a risk you cannot ever be willing to take.
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