Where do you see yourself in five years? Had you asked me that question five years ago I would have answered with a description of a life that looks absolutely nothing like the one I am living now. I would have told you about my Aggie ring on one hand, engagement ring on the other, and my future plans for a family. I would have told you about my career in agriculture and livestock operations. It would have been a beautiful life. Things never really work that way though and the plans I made in my mind fell apart in front of me.
On this day half a decade ago I woke up with what I thought was a headache. A week later I decided to have my eyes checked when it didn’t resolve. A month later I sought out a neurologist. After three months I received the diagnosis of New Daily Persistent Headache, a headache that often follows an infection, is constant, and does not respond well to treatment. 1,827 days later, I still have that same headache. 1,827 mornings I have woken up and the very first sensation I feel is pain. It can range from a dull buzzing up to ice picks being driven into my skull while in the front row of a rock concert, and it is always present.
The first few years of my diagnosis were spent chasing down leads and praying for an answer because NDPH couldn’t be the whole story could it? Surely there was something going wrong in my body that just needed to be identified and treated so that I could return to my previous life. I remember the first time I was admitted for inpatient treatment in Chicago my mom teared up while we waited on the orders because it was just such a shock to see that that level of care was needed. The same thing happened when I had my first PICC line placed because peripheral IVs were destroying my veins. Had you told us then that I would currently have a battery implanted in my chest connected to wires that run up my neck and around my head to provide electrical pulses to my nerves 24/7, and a port for constant IV access on the other side of my chest so that I can set up my own infusions every day at home, we probably would have thought you were crazy. We were going to find the answer. I was going to get better, not worse. We would find the answer on some scan and fix whatever was malfunctioning.
We all know that wasn’t the case and the miracle cure never came, but we did find some answers. Four and a half years after the onset of the headache I finally got my Chronic Lyme disease diagnosis, along with a trail of co-infections and other various conditions caused by the bugs taking over my body. There is so much this disease has taken away from me and it has been incredibly painful to have to shelve my dream life with the degree and the Aggie ring, the 2.5 kids, and the cute little house with the picket fence. My reality is that I have a half finished degree, I’m single, and because this disease is not curable and can be passed congenitally, I’ll never carry my own children. I could probably write a novel about all the things Lyme, NDPH, and the rest of my issues have stolen from me but that would just be sad and self-pitying. Instead, I prefer to keep a tally of the things its given me.
It sounds strange to say that I’m grateful for the changes being chronically ill has made to my life but truthfully, I am. Although I would have chosen to learn these things via an easier route, this has been my journey and I’m going to make the most of it. Sure, I never would have guessed that I would not be able to work, but I also never would have thought I would be someone with the confidence to fight big names like the Mayo Clinic and Anthem insurance either. I wouldn’t have thought that I could write anything worth reading but I have many published articles with The Mighty and this blog. I have become a very capable woman despite looking quite the opposite from the outside looking in.
I had the courage to seek out treatment options all across the country and learn to juggle hotel reservations when a hospital admission was denied by insurance, get myself to and from six hours of infusions every day, and find my way around Philadelphia alone in the time between my dad flying home and my mom arriving. That week was one of the first times I realized I can do hard things. Not in a hypothetical way, but in a real life way. So often it feels like I’m dependent on everyone around me for so much and I wonder if I’ll even be able to figure out how to live like a normal adult when I reach remission. That experience showed me that I can do more for myself than I ever thought possible.
I’ve learned to be so much more accepting and now live in way that lets me see others in the best light possible. There’s nothing quite like having an invisible illness to teach you that you have no idea the battles people are fighting that you know nothing about. Because I have to carefully manage what I put my energy into, I’ve found that most things in life are not worth getting angry and upset about. Life is going to throw curveballs but that doesn’t mean I have to let it get me down. Before NDPH and Lyme I was a very judgmental and unhappy person with a very harsh definition of right and wrong, and second chances weren’t something I gave freely. I can honestly say I am so much happier now that I’ve learned to just live and let live – a lesson I wouldn’t have learned had anger not become physically painful.
I’ve met some pretty awesome people whose paths I never would have crossed if I’d been healthy all along. Although most of those friendships are online and born out of a shared struggle, they are some of the most encouraging and kind people I know. My relationships in the physical world have also changed. Those in my life that were superficial friendships faded and the ones that genuinely care about me have stuck by through it all. I feel blessed to know at 24 that I have a circle of people who will be in my corner no matter what life throws at us.
I think the gift being chronically ill has given me that I cherish the most is that it is has deepened my faith in a way I never thought possible. I mentioned that I could write a novel about all the things I’ve lost and the upside of that fact is that when I’ve had nowhere else to turn, God has never let me down. When I came to the end of myself I had to put my faith and trust in the one who never fails, never breaks promises, never gets weary, and never forgets to use everything in my life for his glory. When I could no longer identify myself as a student, an employee, an athlete, or whatever other temporary things I wrapped myself up in, I was left with just the one thing that lasts – being a child of God.
These past five years have been some of the most difficult years of my life and I would be lying if I didn’t say I am anxious for the day when I can participate in life the way I’d like to but I am grateful for the blessings that have come from this fight. That being said, here’s to hoping the next five years bring restoration to my body and that things improve not only for myself but all the fellow fighters I’ve come to know and love. I hope these next years bring more awareness and understanding for Chronic Lyme and that strides forward are made in NDPH research. For myself, I hope to continue to grow as a person and to live with faith, hope, and love. So goodbye to the past, thanks for the lessons, and hello to a future of possibility!