Than hope that's deferred
I was a fool. I let myself get excited. I carried the screenshots of the test results around in my phone, and I showed people. I showed them the one chart from October, with the really long, dark bars. Then I showed them the chart from last month, with the short, white bars. They went from 3s and 5s, the danger and death zones, to less than 1s. For the first time in six years, I had pieces of paper that showed I was getting better.
Today I awoke in pain, the third (fourth?) day of 90-plus-degree heat making the usual symptoms worse. I went to the bathroom. I washed the gunk out of my eyes. I drank my electrolyte water. I counted out my pills. I ladled my coffee from my big Starbucks mug, where it sits as a leftover from three days ago, when I brewed just one cup, into the little mug with ducks on the side. Being allowed to drink a third of a cup of coffee a day is a major blessing. I went to the bathroom again. I put on my khaki shorts and my forest green work T-shirt. I wrestled my summer-snarled hair up and away from my face. I washed more gunk out of my eyes. I put my contact in my left eye. I smeared cover-up on the spots that needed to be covered up, then went back to rub it in better since it was starting to mix with sweat in the 90-degree bathroom. I went to the bathroom again.
I've been a little grumpy the last few weeks because the new medicine I'm taking to kill the bug that attacks my body is leaving me in pain. Summer has always been my favorite time, but now the heat makes my pain worse, not better. I think it is the new medicine. I can never know for sure what causes what. I take this medicine in drops, in the morning and at night, and I am told to increase the drops each week. I want to increase the drops, because I want to get better. I don't want to increase the drops, because I want to feel alive.
I am so, so tired. The fatigue has literally been crippling. It has eaten beach time and sucked the joy from watching baseball games. I'm having trouble keeping up in conversations again — knowing what was said, what to say back. I have sharp pains in my head. I need water, but drinking water makes my stomach — or whatever the heck is down there, raising a storm every time I move an inch — sick. The ache is back, all over my body. And the knee I tweaked Friday, scuttling around on rocks like a crab, feeling yes, so alive, has been throbbing every since.
So, I was grumpy today because of the pain, grumpy today because I was tired, grumpy because I just want to be grumpy. I'm just kind of sick of it all. I'm lonely and sad, and I don't want to feel like garbage. I don't want to go through my morning routine (we haven't even made it downstairs and started on the ever-complicated "breakfast" — if it's still called breakfast when it's chicken and creamed spinach) just to go work and be miserable sitting there, feeling rotten. What do I have to look forward to? That one hit me for the first time in a long time today, when I was swiveling my head back and forth before pulling onto the road that leads away from my house. Even if I get better, what do I have to look forward to? You've got to stop thinking like that, kid. So you put on the music and drive the seven minutes to work and hope the numbers in the spreadsheets are intriguing enough to distract you from everything you really want to hope for.
Some of my favorite people in the world graduated last weekend, and I was so happy for them. They are great kids: smart, fun, giving, full of life. I was so excited for their graduation that I got those test results right before I went to the graduation ceremony, yet I didn't share them with anyone because I forgot. I forgot! I forgot that I had gotten the first very, very positive news in years, because I was so happy for them.
The ceremony was fun, and then the parties came. I laughed so hard, and we told each other funny stories for hours. I gave them notes and gifts, and we played games and drove all over town to celebrate them. I thought I would get teary-eyed, this class of great friends all graduating. But you don't get sad when you're still together.
I was propped up in some chair later, trying to find the balance between no energy and somewhat good posture, when the question came: When am I going to graduate? When am I going to leave this town and head into the next part of life? You know, the part where I make friends my own age and meet Mr. Wonderful and turn all the dreams that live on stacks of papers in my closet into something real. Will it ever happen? Will I ever move out of my parents' house? Will I ever be able to travel without so much exhaustion that I can't do much for days after the trip? When will I go more than three hours between meals again? When will meals on the road not be tuna salad, made by hand, with special mayonnaise and special tuna and special organic grapes?
It was a new doctor today who revealed me to be a fool, to have hoped when I should have...I don't know. This new doctor took the unfolding weeks of pain I had already been dreading and complicated them more. She requires descriptions of symptoms and lists of food, thoughts about exercise and reading on viruses. She told me of at least three major things I've been doing — as prescribed by other doctors — that I shouldn't be doing, because they're actually making my condition worse. She told me that the die-off pain from this new medicine isn't just innocuous die-off pain. It's not the kind of pain I can smile at, because I finally know something good is happening in my body, as those nasty little buggers get knocked off. It's actually pain that is causing other problems, and can cause even worse problems. While it takes care of one issue, it's polluting my body with trash that can cause even more serious diseases.
I was on the runway, the plane shaking underneath me, the pressure building, but knowing that if I just stuck it out, I would take off soon. Now I'm grounded again, my hope deferred.
How many more doctors? How many more people will I pay thousands of dollars to? Can anyone fix this? Does anyone have any idea what's going on? Do I just give up and live in pain forever? Do I just accept that I'm going to be tired and unable to enjoy basic parts of life due to fogginess and fatigue? Do I just watch my effing 98.13 GPA brain shrivel until I can no longer comprehend simple sentences? Do I just spend all my parents' retirement money trying to get me back to being functional? What do I do when it starts to leak out and affect everything else? What do I do when I can't hold down a job anymore? What happens when it gets so bad I can't talk, can't coach, can't be out and around?
Or is it just a delay, something to take in stride on the path to eventual resolution? It's just going to be a lousy summer, right? It'll be OK. I'll find the strength; I'll do the work. I'll be brave. I'll tough it out. I'll think it out. We'll bust through the wall and untangle all the medical contradictions.
I'm so tired. I'm just so tired.
Nothing hurts worse than hope that's deferred.
But hope that is seen is not hope.
The song in my head tonight is a great one, called "Dresses." It has a phrase about this place, this place where dresses never fade. A place where my wicked, selfish, unseeing heart will be covered once and for all by the righteousness of Christ, and, as a bonus, my broken body will be restored, too.
The lame walk there. The blind see. People caught, paralyzed, in their own bodies, will be free again. Shaky knees will become strong. Stooping shoulders will stand up straight.
I've been wanting a friend in all this, a friend who somehow had enough love for all the pain in my heart, a friend who understood what I can't put into words, a friend with wisdom for all I can't figure out, and a friend who had time for it all. First, I was sad, because no such person could ever exist, even if I cobbled together the best ones I know. Then, I was happy, because that Friend waits for me in Heaven — and walks with me now.
My hope is deferred, and it will always be. I'm not going to be freed from this body on this earth. The chances that whatever is wrong with me now is going to be with me for life are very, very high, and that is very, very hard. I am in for a lifetime of achy joints, boring morning routines, repetitive meals, nagging headaches, and faded dresses.
But for all my hope that is deferred, I have real hope now, too. That hope put its arms around me when I sat in the 100-degree parking lot today and sobbed over the disappointment. That hope came through the words of the music I whispered along with, both when my day was bad, and when it got worse. That hope gave me strength for a silly little softball game, where I punched my usual single to right field and then got lucky on a grounder to get on base twice. I was snagging all kinds of throws with my glove, too, and it was weird — there was this sureness there, where I wasn't even looking sometimes, and the ball still landed true. This is me, Miss Coming In Hot, who spent the last three summers wondering where my kinesthetic sense went and why I had trouble catching a dang ball. For all that's not getting better, that's something.
Don't tell me God is not active and involved in our lives. He was the best kind of friend today. He just sat in the car next to me and let me cry. He listened. He nodded. He agreed that He wanted it to be over. And He reminded me to hope in what is worth hoping for. Do you want to only go to the bathroom once every morning, or do you want to know God in deep, real ways? (OK, right. I choose B.) Do you want to field a softball, or do you want Me to decide what you need most? (Joke's on me — sometimes He does both!)
Do you want this life now, or do you want dresses that never fade?
