Squeezing More Life From The Good Days
Sometimes you see cause and effect. “I feel this way today because I did this yesterday.” And sometimes it comes from nowhere. Nothing. There is sun and then there are dark clouds.
When those dark days come — regardless of whether I understand why — it is easy to let them bring discouragement, to wrap me up in negativity. Anyone can say “but you have so much to be thankful for” and “just think how much better you are now than you were.” Indeed, I say these things to myself.
They are true, yet on days like today they carry little weight.
Your brain knows, your reasoning self knows, but your mind plays with deeper thoughts. Those days when you can’t function at your desired level (or can’t function much at all), you see images of the worst days. They shape and morph and you wonder if you are also seeing images of the future. “That happened before; it can happen again.” Can it? Will it?
I’ve read so many stories of people living with myasthenia gravis who talk about the multiple times they have been hospitalized. While there were three or four separate admissions during my worst days, depending on how you count them, I tend to look at that period as a single episode. Thymectomy. Crisis. Pneumonia. It almost killed me, and certainly threw my life off track, but three full years have past since the worst of it. I can walk. I can eat. I can drive. I can function at a level that certainly appears normal to most observers.
But there are days like today, when the fatigue and weakness rob me of any productivity. And as I lie there, rendered worthless, the images take over. “You just think you are better. You are not. You could get worse. A lot worse. And just look how worthless you are today. You need to contribute something, produce something, every day, but today you are a waste.”
I am thankful. I know I am blessed. And so do you. You know that living with a rare disease is better than dying with a well-known one. You try to acknowledge that and to be thankful for every day, the good ones and the bad ones. But you also understand what I’m talking about here — the fear that more steep hills could be ahead for you and the concern about how your health impacts the lives of those you love.
That’s one reason I tend to grab life and squeeze as much out of it as I can. The good days need to be lived to their fullest, because I never know when the bad days are coming. There is something to be said for balance, I suppose, but I was never good at that before my diagnosis. With the spectre of darker days always peeking from the shadows, I’m determined to get the most I can from the high points.
I will love stronger. I will celebrate louder. I will work harder. I will be bolder. I will lead. I will love. I will live life rare.
Maybe not today, but the unmarked page of a new tomorrow is just around the corner.
