[Image description: Drawing of a stick-figure girl holding a little stick-figure angel. Above them are the words, “POTS Problem #22: Hope!” The angel is flailing its arms and legs, crying, “OUCH! That hurts!” The girl, with tears in her eyes, plucks a feather off the angel’s wing and says, “Yeah, well, you got too big, and now I hurt.”]
“‘Hope’ is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all…” - Emily Dickinson
I’ve learned through my journey with POTS that there’s a fine line between just enough hope and too much hope–I mean, you need hope in order to keep going, we all do, but when you have a chronic condition and you hope too much…it just really hurts. This has happened a lot recently, with meeting a new doctor and trying new things. There’s excitement, because finally–finally!–we’re doing something! And infusions help a lot of POTS patients–so maybe they’ll help me, right? And all of these supplements help with fatigue, so maybe I’ll feel less tired, right? And I had a couple good days right in a row, so maybe I’m getting better, right?!
Emily Dickinson likens Hope to a bird that sings its little tune, not asking a thing from me or you–but every once in a while the bird starts to sing too loudly. The Hope gets too big. And when the tune crescendos into the grand finale…it fizzles out. You’re just left feeling disappointed. Defeated. Pretty darn hopeless.
I had a good day on Friday. I went to bed and actually thought to myself, “Hey, maybe things are getting better!” And I promptly reminded myself not to think that way–not to let Hope sing too loudly. Good days are good days, and I can be grateful for them–but I have learned not to hope that they become the norm. Today has been a very bad day. I can hope that tomorrow will be a tiny bit better.
I don’t say all of this to discourage any of you–this isn’t your reality, this is mine. I don’t know what medications or treatment options you’ve tried; I don’t know where you are on your POTS journey. I know that I have tried pretty much every medication out there–I know infusions haven’t yet help me and physical therapy has yet to give me noticeable improvement. I know that I’ve been to Mayo twice and actually feel like maybe I’m getting worse.
I know that I might never get better.
But here’s the deal: I will still hope. Not that I will have a perfect day, and not that I will wake up one morning symptom free–I will hope to be useful in some little way. I will hope to help someone on their journey. I will hope that, someday, God will let me see the bigger picture and show me how I played a part in it. And I will hope to feel a little bit better tomorrow. I will hope that I can put away dishes without feeling the need to collapse for an hour or two. But I won’t hope too big for those sorts of things. I will let Hope sing its little song, but softly, somewhere in the back of my mind. I will let it be a quiet melody that wakes me in the morning and carries me throughout the day.
And I will hope that all of you will hope with me.
“There is neither happiness nor misery in the world; there is only the comparison of one state with another, nothing more. He who has felt the deepest grief is best able to experience supreme happiness. We must have felt what it is to die, Morrel, that we may appreciate the enjoyments of life.
Live, then, and be happy, beloved children of my heart, and never forget, that until the day God will deign to reveal the future to man, all human wisdom is contained in these two words, ‘Wait and Hope.”
― Alexandre Dumas