I have Lyme. I’d like to not have it anymore. I also just want cake.
Allow this sick girl to wax religious for a moment. It’s Christmas.
For those who have been directed to this post from Facebook, odds are you know me or of me, and you may already know that at my core I am Christian. For those who follow me on WordPress, you may have gathered this already. As a Christian, today is a special day to me. Today has become even more special after the experiences Lyme Disease has given me. I just wanted to write a quick (I always sit down thinking “quick” and… yeah…) post about what gifts Christ has given me this year.
First of all, Merry Christmas, Happy Holidays, or just Happy Normal Day to all of you out there who may see this, whatever your beliefs. I hope it is/has been a great day/month/end of year time for all of you. Today, for me, I celebrate the birth of my older Brother and best friend in to this world. I’m working on the best friend part, not because He isn’t there, but I am still figuring out the… the… (Lyme brain…) formation? Configuration? Forget those words. I am still trying to suss out how that best friend relationship works. This past year has been a bit of a crash course in that for me in a way I would have never expected.
Lyme Disease is kind of like someone pressing “pause” on your life. Except your life isn’t stuck in stop motion. People are still moving. You are still moving. Life is still moving. Your heart is still beating (erratically, if you are me) You just can’t participate in any of it. Maybe “interrupted” is a better word. You lose a lot of things. Abilities. Loves. Enjoyments. Comfort. It forces you to either a) endure painfully, allowing your soul to die a slow and painful death, b) endure painfully, struggling to keep your head above the water for days and months on end in order to keep your soul alive, or c) endure faithfully, allowing a paradigm shift to occur and live your life in a new and meaningful way, as best you can. I have been trying my hardest to do the latter, but mostly I had been switching back and forth between b & c. Enter, my Savior.
January of this year, I was too sick to even stand most days. I was having seizures 2-3 times a week. I was having sudden severe muscle weakness that would hit without warning and I would fall to the floor unable to do anything but fear for my life, scared out of my mind at the crazy things that were suddenly happening to me. I knew of my now-current doctor and knew of his aggressive therapies and success rates. My family and I knew I needed to see him but we had no idea how to get me to DC because I was just far too sick and fragile to travel. Any slight change to my environment, internal or external, would trigger overwhelming and terrifying symptoms (gotta love the power of the nervous system). We made the appointment anyways. We decided to try and drive from Salt Lake City to DC anyways. The day before I was to go, my illness lifted just enough, just enough to make me think “maybe I can do this”. The next day it had lifted even more and I was able to walk out to the car on my own and make the trip. It took three days. No seizures. No sudden muscle weakness. No scary cardiac episodes. We arrived at my first pit-stop at my parent’s home in Michigan late the 3rd night. The very next morning I had descended back to my usual illness. Again, however, when it was time to get back in the car and drive to DC for my actual appointment, the illness lifted again until we returned back to Michigan. Miracle. Upon my return, I again descended to my usual illness, complete with frequent seizures and weakness. So sick did I descend again, that I could not return to my home in Salt Lake City for another six weeks. This has been a pattern. Each subsequent appointment I have found myself well enough on travel days to make the trip to DC and back. Not always perfectly – quite a few flights with fevers and sweats and chills and heavy herxing… but well enough. For me, these are miracles. For me, these miracles are just a few of the many, many evidences of my Savior being there for me when I was too absorbed in the chaos to notice much of Him.
For me, a few of the things Lyme Disease has taken from me is the ability to form complete and cohesive thoughts, preventing me from formal prayer. Oddly enough, whatever part of my brain forms words to expel through a keyboard has been mostly preserved. Brains be crazy. I’ve also lost the ability to read at any beneficial level. I can’t remember any sentence I may have just read once I’ve gone on to the next sentence. In my head I joke with myself that I am just a goldfish only able to comprehend things in the moment and then poof, they are pushed off stage by the next moment. This has made things hard for me to cultivate a relationship with God through conventional means – prayer and scripture study (or any human being, for that matter – sorry all friends and family who I have kind of gone MIA on). For the first 6-7 months of this year, I gave up on praying and reading my scriptures and all of that and just kind of did what I could to survive the day. These last few months, however, something special has happened in my life to change everything. It has deepened my testimony of God, of my Savior, and of His love for me (and all of the world) more than anything else thus far in my life.
The change began when I regained the ability to think cohesively in my head again. I can’t speak it, I still can’t read, But I can think it. And every night now, excluding nights that I am three sheets to the wind from medication (obvi), I lay in bed just thinking until I fall asleep. I have been solely reflecting on my illness, the trajectory it has taken and the experiences I have had along the way. I see a lot of suffering. More than I ever thought I could live through. But…. BUT…
I see many miracles like I have described above. I now see my Savior by my side.
These past few months my life has kind of turned in to one giant open prayer to Him. I don’t use words (remember Tara the goldfish), but I internally express my emotions to Him throughout the day. I have a feeling, and I think of Him. I feel not just of His acceptance of my new-found way to pray and reach for Him, but also of his communications and reaching back. The new feelings and emotions He gives me. Moments when my illness overwhelms and I am alone in my body, trying to go to a place of peace outside of my body, He is there. Moments when I am sweating and shivering on a cold bathroom floor in the middle of the night, grappling with all that can go wrong in a body of flesh and bones, He is sitting with me… comforting me through suffering that He has already born. Moments where the sheer immensity and span this illness has covered would naturally overwhelm me, He is there and my heart turns to gratitude for each day that has slowly wafted me closer to Him. Moments when my illness seems to backslide, He is there quietly reminding me to trust in Him and the healing He will bring to my body.
Growing up as a Mormon, we are taught that growing closer to God comes primarily through prayer, reading scriptures, and trying to live His commandments. This year has taught me that despite my “best” falling far below 2/3 of those practices, He has proven once again he will descend to my level. He will speak to me as I can best hear and understand Him. And that as I have accepted my illness, as I have tried to not complain, and most importantly, as I have let all of my fears go and began to trust in Him completely, even during intense moments like seizures or violent barf-fests, He has turned what would have been a very dark, painful, and lonely period of my life into one full of joy and gratitude…. without removing the illness and all of its discomforts. I testify that He is real. That this process is real. That everything that happened in Gethsemane and on the cross was not just for our sins, but for our sorrows, our trials, our pains, our losses, and our disappointments. He meant for it to work in every facet of our experience on this earth. He is just waiting for us to tap in to those powers that He can bring in to our lives. He is waiting.
The most beautiful thing about God is that when it comes to His love for you, He doesn’t care about reciprocation. He doesn’t care if you don’t notice it or the ways He blesses your life. He does it anyways. Ultimately, for your own good, He hopes you eventually do see, and begin to love Him back. But until, He does it anyways. Because you are everything to Him. Today is Christmas, the day he descended to this earth to begin his saving mission. Today I am celebrating the day my older brother began, out of His own free will, to experience mortality and eventually all of the pains and sins we would all put upon Him and ourselves. It feels like a sacred day to me, and I want all of you to know how much I love Him, how very real He is, how very real His power to help is, and also that He is my best friend. I want Him to be your best friend too. I won’t get jealous. I’ll share.