A war is coming. I’ve agreed to fight it. But I don’t know if I’m ready. In fact, I know I’m not. I’ve fought one too many wars and found out I was fighting the wrong foe. So many medical rabbit trails. So many wrong diagnoses, treatments that did more damage than good, and doctors who were either sure they knew all or shrugged in apathy because they couldn’t be bothered to deal with the nebulous. Nebulous is a good way to describe this stupid illness. I think I am getting a hold on it. I think I am learning to live with it. And, poof, it slips right out of my grasp and I am tumbling again unable to find my footing. I am tired of getting back up again at the bottom of each fall. I am tired of hoping that maybe, just maybe, this time will be different and I will get my life back, my freedom back… my options back. Options to live a life that isn’t held hostage by medication schedules and side effects, forced rest, tests, appointments and surgeries that don’t really bring any long lasting relief. I am tired of hoping that one day I might actually be able to strap my running shoes back on and have the strong, agile, slender body that used to be able to cut through air and make me feel like I could beat back the world. I’m scared to hope in a miracle. Will one year of hellish treatment, which is sure to make me sicker and throw my whole family into chaos, actually release us all from the prison of this illness? This prison prevents my boys from having a mother who can be upright for more than a few hours at a time. We are shackled by the constraints of a wife who can barely care for a home and children, let alone be the partner and lover and best friend and helpmate and cheerleader, and all the other roles I am supposed to be, for my husband. I’m not ready to fight another battle that may leave more carnage than provide relief.
I am terrified of more scars that cannot be compensated by healing. I’m covered in scars where my body was cut into from surgery or a simple slip of a knife while chopping veggies or a fall and a gouged knee (yeah, I’m a klutz). My body doesn’t create normal scars. It overreacts and creates ugly, raised, angry scars that don’t go away, don’t fade, and don’t blend in over time. They stay inflamed and scream for attention. I’m scared of more — more scars on my outsides and my insides. I’m even more terrified of the scars sure to be left on my husband, my children, and my family. But I don’t really seem to have choice right now. I am not really living. I am barely functioning. I’m stuck in survival mode. We all are. I have to gamble for a better life for my children and my husband.
So, last week I began a treatment regimen for Lyme disease and the other nasty co-infections that tend to come along with it. Is it really the Holy Grail to my 20-something years of health puzzles? I don’t feel like I have any other choice but to try and trust the doctors that show me labs, numbers on charts and spout their microbiology. My other options are major surgeries that can’t be undone to tackle my CSF leaks and ballooning, cyst covered dura. I’ve prayed, Josh and I have weighed the pros and cons, and we have decided that ready or not here we come. It doesn’t matter if I’m ready. I have no idea how I will function in the throes of the toxins that will build up as the bacteria dies off. I’m already battling nausea, indescribable (walking through wet setting cement) fatigue and all over muscle pain in my “easy” cycle of treatment. What areas of my body will give out and stop working? I’ve prepared for the battle with my probiotics, green smoothies, supplements and an attempt at rest and forced naps. But nothing can really prepare you for the unknown.
For the past three years I’ve watched my sister wither away from this disease and then become sicker with treatment. A port in her chest delivers a potent, controversial cocktail all in the name of hope. They said it would happen this way and there would be a terrible war with lots of collateral damage; but they promised a turning point where we would begin to see her again. The only comfort I have right now is that I am seeing glimpses of my sister again that I haven’t seen in years. It seems they may be right. She is re-emerging. The quick wit. The funny conversations. She’s reclaiming her ability to read and write and walk without falling. While Lyme attacked my connective tissue, it ruthlessly went after my sister’s brain. My sweet sister, she doesn’t deserve any of this. She has never been anything but kind and thoughtful and selfless and giving. She’s devoted her life to children that many consider the “throw away” kids. She sees their unique gifts and she has an incredible ability to nurture them into success and break through their prickly adolescent armor. My big sister continues to grieve her time away from the classroom intensely. She fears she may never get her life back — her brain back. But, I have to hope. Lately, with each phone call, I do have new hope. I hear her coming back to us.
This battle is a family affair. It’s tested my family in ways we never imagined. Dark and despairing days – for my parents, who have hooked up her IVs, cared for her at her sickest when she was delirious, ridden in ambulances to trauma rooms when her poor balance made her fall and hit her head and they found her unconscious and seizing on the ground. My mother sat alone in the trauma bay waiting for my father who was quickly gathering things for an unknown hospital stay, and she listened to words like “brain bleed”, “neurosurgery”, “seizures”, and “aneurysm”… words that no mother should ever have to hear. My mom had already been through multiple hospital stays with me, including a “code blue” when it seemed I had stopped breathing due to a medication reaction. As everything went black I remember her frantic screams “Help her! Help her!” And, now there she was, her other daughter, experiencing her own Trauma Life in the ER (a show we morbidly liked, but can’t quite stomach it now after living it). My father has watched all of his girls hurt and he can’t fix it. Daddy’s fix things. What must it feel like to be a daddy who can’t fix it? My brother sat helpless on the other side of the country when I called and said “Stacy’s unconscious” and all he could do was wait by the phone. I’m sure watching both of his sisters medically combust must cause some sort of psychological damage. I’m thankful he has the cushion of a country between us and a fun-loving wife that is sure to keep him positive and present-minded.
So, there it is. This is what our war looks like. We are battle weary. But we keep going because what other choice is there? We have to choose hope. Hope is the best weapon we have against this enemy. It comes in many forms – a prayer, a pill, an IV bag, a plan… It comes from banding together as a family is meant to and daily, messy, imperfect, sacrificial love. Choosing to hope, together, that there is Someone in control who can and will bring good and light from the darkest days of war.
Are you battle weary too? Press on. And when you can’t take another step further, I pray God sends you family and friend co-warriors to carry you forward.
Pam Greaves says
Steph…This is the most remarkable piece you have written. You have bared your soul, and let us all be part of your struggle. I count it a joy and a privilege to be part your family’s life. I have watched and prayed for your mom and dad, and Stacy, and you, Josh and the boys. It seems like such a small part to play, but we both know how powerful prayer is. I am encouraged each day to see Stacy gradually coming back to herself and to all those who love her. She cracks me up with her dry wit and humor in the face of all she is going through. I pray and fully believe that the light we begin to see at the end of her dark tunnel, is the light you will also be seeing. Dick and I pray for you honey. We hold you before God’s throne every day and trust His amazing grace and strength to bring you through, and we know that He is faithful. The prayer warriors are on alert for you…believe that! We love you bunches. Pam and Dick
Wow that was a powerful, beautifully written post! I didn’t realize you had Lyme disease. I thought it was fibro, or maybe you deal with both. I know you from the FB group. My heart and prayers go out to you and your family. Thank you for your transparency and beautiful words.
Remember, I will always be here – ready to be there.
J Eggert says
I am adding you to several national prayer lists! Thank you for opening your heart to us and allowing us to hold you in prayer! We have a God that cares and performs miraculous healing we are holding you close in that hope! Hugs to all! Janet