Saturday, September 1, 2012


Lyme is an isolating disease. No one really understands what it does to the body and mind. It causes breakdown of relationships. Not just for the patient, but for the people who do see the symptoms and chose to be present and active in the fight for life.

Lyme comes with personality changes. Rage, depression, anxiety, confusion, lack of personal identity and awareness are all too common.

Here is a snippet of what the confusion looks like:
There are moments when I do not know what year it is. Everyone has written the wrong date on checks. I’m not talking about that. What happens with neuro-borreliosis is a complete short in the brain. I have known my best friend for three and a half years. Sometimes my brain jumps back to a time before we met. Meaning that I don’t know who the strange guy is that keeps following me around. (After the fact, I realize that he is keeping me safe.) In my Lyme brain, he is a threat. You fight or leave when you are threatened. When your brain believes that it is under a fatal attack it takes extreme measures. I have said and done things that I cannot remember after the “attack” on me ends. I hate that I have no control. I physically fight anyone who touches me, even if it is for the purpose of helping me, I don’t have the ability to distinguish the difference. I use words to harm those I see as a treat, because, I guess, if I can’t stop them physically, I have to break them down some other way so that I can be safe from them. These are horrid behaviors. I never remember them. They exist in way too many Lymie lives.

I can’t even imagine what it must be like to stay strong and keep helping when the person is scared of you and fighting back.  

The caretakers and friends either chose to stay and then end up slowly dropping away or see the bad symptoms and run. I can’t really blame them for feeling scared, but fear is a result of not understanding.  Only people who take time to understand what these stupid “bugs” are doing to our brain, find a way to stay. Then they have to endure the judgment from the scared individuals who have already chosen to not educate themselves.

Lyme is isolating enough for the one who has it. Care givers/takes should not also suffer because they have chosen to help save a life.

Lyme does not kill quickly. It eats away at your body, then it takes your mind, then it takes your personality and identify and you are left with nothing but the physical suffering every moment of every day. If you survive, and by survive I mean not taking your own life, to the point of neuro and nervous system infection, it becomes your entire world. A Lymie with the bugs that deep has a choice: fight or quit. It is hard not to quit when you look around and your friends and family have disappeared. That is why it is so important to me to raise awareness about what actually occurs. Lyme kills so slowly that the leading cause of death is suicide. The death certificates will never say “suicide by Lyme”.  Other deaths occur from organ failure, which are listed as “organ failure,” not “Lyme induced organ failure”.

What do you think you would do? I really want you to think hard. I hope you look deep into yourself. It is ok to be scared.  I am scared every day and night. What is important is your choice to grow and educate yourself.  Many of us seek help from God or another spiritual entity. While this provides some amount of comfort to said person, if they are praying for someone with Lyme, they haven’t really gotten the message. (Don’t get me wrong, prayer is powerful.) What I am saying is that Jesus didn’t just go home and pray for the lepers he was physically there with them. His hands got dirty. His heart ached. The prayer must be the source of strength that then leads into action. I think, if we choose to identify as Christians, we might need to drop that label for a bit and instead chose to live in a Christ-like fashion. We must support and push one another to take these actions. Actions become habits. Habits become who we are. We are not meant to remain forever fearful.

If you know someone who is chronically ill, please don’t say, “Let me know if you need something.” Ask specifics. Our brains already have a hard time processing. Ask if she/he is up for a low key movie night. Ask if you can do laundry. Call on your way to the grocery store and ask if they have (again, specifics) eggs, milk, bread. Although, if you’re talking to a Lymie, remember we can’t have gluten, sugar, or dairy. So you’ll have to ask about soy or rice milk, gf bread, etc.

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