Lately, healing feels like chipping away at the stone of the tomb, bit by bit, waiting for it to roll away. It’s an exhausting process of grief, which we are in all the stages of at once. In the end, we may not find a cure, but we can walk toward acceptance of what is and commit to keep pursuing what can lead to improvement, day after day.
Hint: If the rhymes and rhythm feel a tad off or uncomfortable at times, feel the limp and the asymmetrical pain they represent. Dynamic disabilities can be frustrating as they come and go, often unpredictably.
Bit by bit, you are healing, and oh how it hurts. They promise a miracle if you keep up the good work. But a cure isn’t coming. And so you must grieve. “This is your life is now.” You struggle to breathe. Accept and resist. Both are your lot. This body malfunctions, but it’s all that you’ve got. The new medications help only so much. Exercises and tests. Is it sore to the touch? Eat well and drink water, but watch for the sun, not too much, not too little. Don’t forget to have fun! You see a doctor a day. They say you’re doing well, but inside your heart cries and the ache starts to swell. To hell with the scammers’ damning promotions. I send digital hugs, pictographic emotions. It’s never enough. You can’t do enough. There will always be just one more “just.” Make space in your schedule. Insurance denies. Back to the start. Light fades from your eyes. Buy this trinket, do yoga, take this new supplement. “By the way, have you tried…?” It won’t make a dent. Acquaintances protest: “You’re too healthy to need” “You’re too young to have this” “But you look fine to me!” There’s a you they refuse, a vulnerable friend, a neighbor to help, an inviting-in. You’re so tired, so weary, not from the symptoms; it’s appointments and lines, sorting folly from wisdom. You make so many calls “just checking on this.” Wait for a response, Can’t afford to miss. Lab results, workouts, the advice and procedures, the shots and the patches, the side effect teachers. You still have to work your eight hours each day. You still have to do the things that you say. You need to take care of yourself and your people. You still need to gather at cafes and steeples. You still need to be there when you can. Don’t dwell on yourself; give others a hand. Accommodations and strategies, coping mechanisms, all these techniques are complexity prisms Of “How much will this take? How much will it cost?” Not solely money, Time and energy lost. It’s hard to say no to those intending help when so many don’t offer, but do I have to eat kelp? Sometimes the help hurts. Snake oil is no cure. And sometimes you wonder why God’s so demure. You’ve prayed and been faithful, done all that you should. You’ve completed each task on your quest to be good. So where is the miracle? Where is hope and relief? When peace is scarce, All you have is this grief. The pain keeps on coming, but the effort’s worthwhile. Accept the pursuit of a life reconciled. All that you aimed for is altered at best. You will not be fixed. Your normal has left. You learn who to trust and who helps you stand tall Who’s there for the breakdown, And that scan in the Fall. Rejoice at good news, even when scared. Remember the names of people who cared. I can’t promise miracles, only sanctuary, for people like us and the stories we carry. Mobility, strength, stamina, speed, memory, attention, cognition, and need. You are now this way. It’s not your fault. It’s not in God’s “plan” to bring life to a halt. The prayers go unanswered, Missing: Miracle cure. Spotting the frauds, you resist their allure. In each step that we take, we resolve to keep trying— not better completely but better than dying. Each day by day better than yesterday went. May you find relief; may you feel free to vent. Even when it’s not the most perfect day, know that we’re here, and we’ll light your way.
Invisible Cake Society 