When I was diagnosed with Late-Stage Lyme Disease 3 years ago, one of the first things that I was told by a fellow athlete with Late-Stage Lyme Disease was, “You have to let go of who you were before this illness”.
Although I understood cognitively why they would say that, my mind refused to believe it. Prior to getting sick, I was an athlete with lots of hopes and dreams. I enjoyed competition and pushing myself to always improve. Be faster, learn new skills, or race in a harder category. There was a huge sense of accomplishment I got from racing and being fit. Of course, the shadow side of this was that I placed entirely too much of my self-worth on performance. I think that’s why it was so challenging for me to hear that individual say, “You have to let go of who you were before this illness”. The person I was before this illness was all I had ever known. Slowing down and becoming something other than competitive seemed like it wasn’t an option. It wasn’t something my nervous system knew how to do. Slow down and just enjoy whatever you are capable of even if it’s not your best? That didn’t make sense.
So, I went into treatment with the mindset that I was going to beat this thing and have 100% recovery. I was going to do what I had done before. I was not going to let go of that former life. As treatment started, things were really rough. I was able to endure all of the sick nights and pain, because I was driven. I had an end goal and I knew what it looked like. This was not it. I kept going. I had a standard of life that I measured my days against. As the years passed in treatment, I began to improve. My brain started functioning again and my energy started coming back. The shooting and stabbing nerve pain began to subside. But even with all of that incredible progress, I still was not back to 100% of what I was before and I remained driven.
I would say, for the most part, that drive to be back to 100% was helpful in my recovery. It has been the reason for me not giving up when things seemed pretty hopeless. It has been the reason for me not just fading into this illness. For a while, it seemed like maybe I wouldn’t need to let go of who I was before. That person was wrong, until I realized they were right.
Lately, I’ve been able to ride my bike again and start doing more strength training than I have in about 4 years. Some days are easier than others. I am not even remotely close to the kind of mountain biker I was before, but I am functioning at a level that so many Lyme patients could only dream of. But that standard of my pre-Lyme life was still my measuring stick for success. So, when I went for a mountain bike ride with some friends a couple of weeks ago and had a familiar episode of intense muscle fatigue and soreness about 20 minutes into the ride, I became angry. So frustrated that it made me cry. My body was still not on board with my 100% recovery plan and that’s when I realized I needed to change my measuring stick.
We all have to change our success measuring sticks at some point in life; be it through age, illness, or any other transition. Going through Late Stage Lyme Disease is a massive transition that I was refusing to see. I wanted to be unchanged by all of this and return to the person I was. But that is not the way the universe works. We all know that change is the only constant, but it remains a scary proposition. Yes, I still have symptoms; though they are dramatically decreased to the point of being just a nuisance for the most part. No, my body cannot tolerate intense exercise, lack of sleep, high stress, alcohol, sugar, or dairy the way it used to. Read back through that list. Can your body tolerate those things as easily as it used to? Probably not, even if you don’t have chronic illness. We are animals. We age. We get sick. We die. It becomes necessary to change our perceptions of who we are and how we measure success over time. I am grateful for the drive that has pushed me through the hardest parts of this illness, but I am becoming acutely aware that it is time to let go.
Let go of who I was. Let go of the idea of 100% recovery. We are not the people we were 10 years ago (thankfully, really). Embrace the time I get to play outside in the woods on my bike as a gift instead of a chance to perform. Let go of judgement and anger when symptoms again rear their ugly head. Embrace illness as a side-effect of LIFE. Perhaps the most important: allow myself room for mistakes in this transition.
I am so thankful that I have had the opportunity to recover as much as I have. I am so thankful that I have had the support of such a loving community in my recovery. I am so thankful that I have the capacity to change. I look forward to getting to know the person that I am becoming.
Happy Thanksgiving! I love you all!