TURN THE LIGHT ON! And Leave it On

So today I asked my brother if he had an idea for what I should write about today. He just turned to me and goes "Turn the Liiiiight on!" in his best impersonation of our friend Leroy White. My brother and I spent some time together this week - not arguing!- and listening to music, talking, doing sibling stuff and it's been great. I have to say I would not make it through a lot of the mental and emotional challenges I face with this illness if it wasn't for my awesome baby brother. He grew up with this illness plaguing me and has adjusted pretty well. He was about 6 when I first got sick. He is now 18 and we have a fantastic friendship once more. He has seen me and my Lyme at the absolute worst - repeatedly. It's one of the things that causes me the most pain and heartache. That desire to protect someone you love is natural but it can lead to keeping the disease partially secret - which is a slippery slope. I wish someone had advised me earlier on this. When you start living with an illness you can't control and trying to hide it - you are going down a road that's difficult to turn around on. Where do you stop. What symptoms are OK to deal with publicly. Which ones won't cause you shame and stress? 


I began hiding years ago when my flare ups would happen - I still do but I am working on actively letting people into this part of my life. It feels a lot like nursing an addiction - you hide, you lie, you're unreliable, you're slightly crazy at times - panicked, stressed, not sleeping, sick, in pain, the list goes on and gets uglier from there... Like I said the need and want to protect friends and family is healthy but is it doing you harm? Please ask yourself this question as many times as you need to. If the answer is yes - it's time to lighten your load.

What I recently realized is that the emotional need I had to protect my family got intertwined with my shame and guilt over being sick and it led to years of panic and anxiety at even the slightest symptom. Again I am still working on this but I think sharing it not only helps me to be more honest with myself - but hopefully you to be also. Being honest with yourself without being overly critical is something I am so far from mastering I can't stress it enough. But one of the thoughts that occurred to me last night was "when you start taking your own advice, everything changes!" and for me this year there is real genuine truth in that. I am coming into my own - I recognize myself again just in terms of my personality. I am writing again and enjoying it. I am connecting with new and awesome members of the world community daily. These are huge motivators and welcome distractions. I encourage you to take whatever steps you may need to find your passions because those are WHO you are. Disease, pain, poverty war - these things do not define us. It sounds so cliche - but sometimes there's truth in the old sayings and words of wisdom.

*Leroy White - friend and mentor

So my brother and I were listening to *Leroy White last night and he starts talking about how upset he got one day when a machine broke that he needed for one of his concerts. He got so upset he started "cryin" and he said "a couple of strange words... in a row" and he goes out back, it's getting dark and his friend comes back and says in the manner of Pig Pen from the grateful dead "TURN THE LIIIIGHT ON!" - who always said "and leave it on!" - so that was what my brother was referring to this morning. He's so great. 

So now I'm listening to the Grateful Dead and blogging and wishing you Health & Happiness from Rhode Island. I thought I would do my best to share this moment here because sometimes we over complicate life and need to be reminded that we don't need to sit in the dark with this disease. Life with Lyme is hard enough. You don't need to hide it. You need to shine! SHINE SHINE SHINE - pretend you're a hippie from the musical HAIR dancing in Central Park, not caring what anyone thinks about you. At least that's what I do! TURN THE LIGHT ON & LEAVE IT ON!!!