I am not Alice falling down the rabbit hole; I am the rabbit hole.

Today, I feel closer to the person I am than I’ve felt in a long time.  I’m always surprised when confronted with evidence of myself.  Surprised to realize I’m still here, have been here all along, beneath layers of die-off, brain infection, exhaustion, confusion . . . .

It’s so easy to lose myself amidst the appurtenances of illness.  Fear clouds everything, fills me up till I can’t fathom life on solid ground.

I can only speak from the point of view of someone dealing with Lyme Disease & co-infections; I don’t know what day-to-day life is like for people dealing with other chronic illnesses.  So, for me, the hardest part of dealing with illness is the loss of self that accompanies it.  Psychologically speaking, the first several months of treatment weren’t so bad because I had just finished my grad program and could still remember what it felt like to be part of the human race.  My achievements were still fresh in my mind, and I was proud of myself.  On good days, I went out and saw Broadway and off-Broadway shows, often by myself.  And I really enjoyed the time spent walking around the city alone.  But as the months passed and I became sicker, a sense of isolation began to sink in.  I could no longer trust my body to get me to and from the city by myself, so I didn’t go out much.  Severe anxiety kept me huddled in bed most days.  My life of the previous two years became a distant memory.

It’s been over a year since I started treatment, and in that time I seem to have lost myself.  No, not entirely, because I do have days like today, however infrequent, that remind me I’m still here.  But most of the time, I feel so foreign, and I think that’s where Lyme & co., in particular, come in.  Depersonalization and derealization are both symptoms of Lyme Disease, and they’ve been part of my life for a very long time, worsening in response to die-off reactions from treatment.  In and of themselves, these symptoms cause the very sense of losing oneself (and one’s mind) with which I continually struggle.  Add to the equation isolation from the world/ loss of context of my place in the world, and the feeling I have of losing myself makes perfect sense.

That’s why days like today are so important for me to hold onto.  They give me the faith I need to keep fighting, because there really is something worth fighting for: me.