The Lyme Spot is about having Lyme: living with it, putting up with it, embracing it, damning it, figuring it out, not figuring it out, but most of's about community. I will be sharing my experience, my feelings, and all the things I know that help me get through my days and keep me feeling positive, or at the very least keep me alive! But please, also come here to share your experiences, feelings and all the things you know. Together, we can get through anything...

How do I make it to the other side of this damn disease?

I don't know about you, but the above question is probably my most popular thought since I got too sick to work or leave the house very often. It's the place my mind goes when I feel isolated and therefore depressed and therefore generally unhappy and therefore purposeless and therefore...hopeless. The above thought has ultimately been a hopeless thought for me, not because it is inherently a hopeless thought, but because for the last two years I've been thinking it and coming up without an answer. Rather, I suppose it would be more accurate to say I've been coming up with only one answer and that is: I don't have an effing clue.

The feeling that accompanies this thought is despair. I think this thought and feel that there is no way to get to the other side, rather I will be sick and then sicker and then sickest and then kill myself out of the force of sheer unbearable pain.

The unbearable pain exists on two levels; 1) the physical level, 2) the emotional level. The mind, in all its cognitive power is a frail and delicate thing in the face of pain. It is the first thing to crumble, the first part of oneself to bow under the weight of fear. With all the pain that accompanies Lyme disease, my mind often gets taken to a place that is beyond what it thinks it can handle. That is when it thinks the above thought. That is when it turns to indulging in thoughts and feelings that are the essence of giving up. However, the thinking of this thought and the feeling of these feelings does not mean I actually have given up, as my continued existence in the world is a testament to. What it means however, is that my mind, in its weakness, is making a difficult situation much harder to bear. It means that my mind is adding further pain and suffering to a state that is inherently a place of pain and suffering.

The physical pain of Lyme disease is unavoidable and emotional pain is always created with constant physical pain. I won't go into the details of this because 1) Lymies already know about this deeply through experience that is often supplemented with research, and 2) if you aren't a Lymie but are reading this, you are interested and compassionate and so will probably look this up on your own if you want. Back to my point, which is, feeling physical and emotional pain is unavoidable. What IS avoidable is the mind's tendency to pile its own pain on top of what is unavoidable. Actually, I would go so far as to say that the mind has a tendency even to spiral down so far as to be at a point of torturing us.

Now, when I say that this tendency of the mind is avoidable, I am not saying it is easy. Disciplining the mind is hard work. It is hard work when one is healthy, it feels nearly impossible when one is sick, it feels downright impossible when one has a disease that affects one hormonally and neurologically. I, for one, gave up. It was a mistake, but I did it, and I didn't correct that mistake for a few years. It didn't take that long because I wanted it to, it took that long because I didn't know any better.

How to preserve the peace of the soul in the face of the ineffably torturous? I didn't know. For what felt like forever, I bumbled about, hanging on by the shreds of my own torn skin, wholly convinced I could do nothing about the places my mind was often going. I'm ok with that. I have been doing the best I could in every moment. For a long time it was the best I could do.

It is no longer, however, the best I can do. I won't say I'll never go back to that place, but I can say I'll never be that lost when it comes to the question above, because I have learned something that has changed the foundation of who I am, something that is like a thread weaving it's way through the fabric of my being.

I have learned compassion. Not a conditional compassion, for myself and for those who support me, but an unconditional compassion, for all, including my enemies, including those who destroy. I have finally learned a love that leaves no one out, and in that I have found the birth the possibility of happiness in the face of anything at all.

It is compassion that will get me to the other side of this damn disease. I don't know if 'the other side' means I will get medication and become cured, but that no longer matters, for in finding my compassion, I've forgiven myself and the disease and every person that was supposed to love me but let me down, and what that means is, I'm healed. As of now, I am healed. Er, maybe it would be better put to say I am in the process of healing. It's not an instantaneous thing, but already my state of being has gone from one of feeling constantly tortured to one of loving grace.

I am not in less pain. I am not less tired. I am no less alone. The disease itself has not gotten better, and yet, I am better, because I have remembered to love.


  1. Great post Adi! Amazing hope strong this debilitating disease makes us.

  2. You are amazing~ Thank you~ dj