So last Monday I got the most specific and concise Lyme diagnosis I have had. Before this my LLMD in Seattle took all my symptoms and history, plus my “indeterminate” Western Blot, and the fact that my sis had a positive Western Blot, and moved forward in treating for Lyme. Despite all the herxing, and all the evidence with everything in my mind and body lining up with classic Chronic Lyme symptoms, somehow deep down I have still wondered. I have always felt that somehow everything has been my fault. Genuinely sick yes, but a deep down guilt that somehow I have never done enough, never tried hard enough.
So, last Monday when I found out without a doubt I had Borrelia, Babesia, Bartonella, Lyme Virus A, Lyme Virus B, a separate virus in my liver and a loooooooong term fungal infection in my lungs (and a few other goodies including a viral cyst in a breast) it was a plethora of emotions.
Elation at specific diagnosis! Surprise that after 2 yrs of Lyme meds and struggle there was still so much eating away at my body. Relief at answers as to where the viruses were congregating: in my lymph nodes helping to explain all the water retention, Bartonella in my brain and brain stem explaining all the neurological problems, Borrelia in my joints helping to explain the constant pain, and on and on…..
Right now I am going through a process that I thought I had already gone through….forgiving myself. There is so much regret and grief tied into being only half alive for over 20 years. I have always struggled with feeling disconnected and having some sort of “pause” deep in the back of my brain that makes me feel like it is hard to connect with others, although it is something that undulates in intensity. I remember being about 20 years old and telling my mom that I felt there was something wrong with me in my head and I couldn’t even explain what it was. Maybe soon there will come a point when I will feel more whole. But I am realizing there has been a lot of self-blame for every birthday, wedding, shower, movie night, hike, game night, Bible study, family activity…….. and even the things that are going on right this moment and SO much more I have missed due to being sick and “not feeling like it”. I have spent so many years with my butt planted on my bed, tv on because even reading or talking on the phone takes energy. I have spent countless nights coming home after work not even speaking to my family because I was “talked out” removing myself even from the people I love the most. I miss my family, I miss my friends, I miss those of you whose faces I see on Facebook but have not seen in person in years. I miss every single moment when “quietness” has overtaken me even when I was with people because something deep inside of me was “shut down”. My life has become high maintenance because of all my pills and supplements, the body care and the food stores and kitchen appliances because everything must be made at home for special dietary needs, and what is “basic” for most people is all-consuming for me and takes a lot of time and energy. It all takes space, it all takes time, it all takes my energy. Apparently sometimes to the “well” it appears overkill.
I miss living my life as only part of a whole person whose pie chart has a piece or two missing. I am hurting right now for every missed connection and misunderstanding, for the people who have crossed my path personally and professionally who have thought I was unfriendly because I was quiet and shut down. I am hurting for everything I have ever said or done that came off wrong but made perfect sense to me. I am hurting for being a person of intentions who rarely follows through. I am hurting for the gap that I have always been aware of that has separated me from everyone else.
I am crying today off and on with all kinds of emotions swirling around, but maybe for the first time I can tell myself with conviction “it is not your fault”.
I grew up struggling with my health. Even though I did have times of being better, I have never known normal, and now at 35 I am curious when I get to meet myself and figure out who I really am. Is it strange that I am also dealing with some fear? I am not sure if it is a good analogy or not but I feel a little like an abuse victim who is going to experience freedom in the near future and no longer knows how to live any other way. I have been abused at the hand of a disease since (I am estimating) about 12 years old. It is something that literally has invaded every piece of me physically and mentally, oh and socially! I am in a state of symbiosis with it and being unhobbled is daunting. I have never known a day in my recollection without some level of pain, or total access to my brain, being fatigue-free or complete access to that weird thing called “happy”. (don’t worry, still get some joy in the Lord).
This may sound strange to some but in the mix of this emotional whirlpool is gratefulness. I am very thankful that despite all the hardship God has been gentle and kind to me and shaped me and grown me in ways that would not have been possible without suffering. Since He wastes nothing we shall see what He how He will use the long train behind me that is feeling less like a heavy dark veil and more and more like silk blowing in the wind.