Lyme and Fear

I spent MANY years as something of a Lost Lymer. During the years when I was so incredibly sick, I knew very few others who had it – as a matter of fact, it wasn’t until I was sitting in some clinic during something like my fourth round of it that I saw the poster with the photo of just HOW TINY those blasted ticks were.

When I danced with Lyme in those days, there were no massive online support groups or green ribbons or coffee mugs that referred to us as “Lymies”. We were pretty much on our own. Once I became sick enough to lose my job, my health insurance and my home, I REALLY……. was on my own.

And you know what? I honestly think it worked in my favor. It gave me the odd ‘luxury’ of dealing with myself a symptom at a time, a chapter at a time and I didn’t get swept up in the tsunami of protocols and politics and conspiracy theories and FEAR that I see interfering with so many folks’ getting well.

Now, after MANY years of writing, and coaching and listening to others with Lyme, I’m still of the mind that FEAR is the greatest obstacle to healing. Give one small thought to what your body DOES in a state of FEAR. It tenses right up, everything shuts down. That’s extreme fear. Then there’s that low-grade, constant hum of ‘what if….what if…..what if…..’ Neither is going to help you HEAL.

The other major obstacle to healing is the huge, hideous pharmaceutical marketing machine that owns everything and is intent on brow-beating anyone who gets near any kind of media into accepting that we can’t POSSIBLY be >HEALTHY< without DRUGS and lots of them. So they feed that fear – constantly – because hey, that’s REALLY effective. We’re taught to ‘relieve symptoms’ as the way to health. That’s like silencing your children because they’re two years old and annoying. Nice ‘cure’ for the Terrible Twos.

So with all that going on and the fact that you feel unbelievably, inconsistently and horrifyingly TERRIBLE, it’s going to be a hard task for me to suggest you hit REBOOT and try to remove ~OMG~ as your daily mantra. Once you suspect that you have Lyme (& Co) and begin researching, you start the IV drip of fear. How much WORSE it can get; how some folks believe you NEVER get rid of it; how it (will?) ‘turn into MS’; that yes, folks have most definitely died of it and committed suicide to end it. I’m not saying that NONE of that is true, I’m suggesting that that not be the main part of your diet.

I often think of myself as a Team of Two. Me and my body. That’s it. That’s the team. Everything else is an ALLY. But in the end, it comes down to the two of YOU. People with threatening illnesses can seriously disconnect from their bodies. That may seem like a coping mechanism (and for a time it can be) but it probably isn’t going to move you closer to really and truly healing.

We’re scared to death of symptoms. We’ve been TAUGHT to be. That’s not going to change quickly or easily, but what better time to start than now?

The classic to end all classics is the term “Flu-like symptoms” which must be immediately SQUELCHED because they MEAN you’re coming down with the FLU and you need to obliterate your symptoms so that you can charge back to work (and give it to everyone in the place……nice).

Let’s try this again.

 “Flu-like symptoms” (that would be aching joints, headache, weariness, feverish, perhaps a sore throat, skin hurts…..) MEAN that your immune system has just shifted into fifth gear and is kickin’ some SERIOUS BUTT.

Sure. It’s uncomfortable.

Go to bed.

Did you know that your immune system only has FULL POWER when you’re lying down? THAT appears to be a scientific fact. Once you sit or stand, some little switch turns your immune system DOWN. GO to bed!

Now. Let’s go back to that body response to ~omg~ FEAR – Jammed-up tense. NOT what you need when your immune response needs to get to everywhere, do what it does and usher the thugs OUT. But there’s MORE. We’ve learned to PAY ATTENTION to every little twinge and pain in a negative way. (there goes that “omg” again!) When was the last time you gave your own body a “Go, You!” for DOING what it brilliantly KNOWS how to do? When did you quietly OBSERVE exactly what it’s doing?

I remember, the first time I read about the notion of Lyme spirochetes ‘morphing’ in a way that our immune systems can NO LONGER DETECT THEM, feeling this incredible CRASH in my own system. Then I got angry. How DARE those words cause me to lose faith in my own damned immune system!! I think that’s when I realized just what a team my body and I have been for nearly sixty years.

So fine. Lyme spirochetes have a Harry Potter Invisibility Cloak.

Where’s my Teasel wand?

They hide. Where’s the flashlight? We’ll get ‘em.

I’ve probably written a dozen different articles in which I point to my own daughter’s inspired brilliance in asking her children “What HAPPENED?” rather than “What’s WRONG?” It’s something we could all stand to learn. If you greet every twinge, every symptom and every message that your body sends you with “OMG, What’s WRONG??????” You can hardly expect to get well.

ReWind, ReBoot, BackOff, Settle DOWN. Let’s start again.

Get the CliffNotes if you have to, but LEARN how absolutely BRILLIANT a thing the human body IS. From before we were born, it has been functioning, adapting, and SELF-HEALING. Long before we had anything like a clue about ANYTHING, this package we bounce around in KNEW how to make use of the foods we eat and the air we breathe. It knew how to heal an owwie, how to usher out a cold, how to eject something we ate that wasn’t OK. It knows how to rest and recharge and how to bloody-well GROW. It’s absolutely mind-boggling.

How DARE we even consider that this magnificent creation can ONLY be >HEALTHY< with DRUGS. That is simply dishonorable. Not saying that drugs, surgery or standard medicine has never been a LifePreserver, but you can’t LIVE in a life preserver. Come to shore.

I KNOW what it’s like to have my body totally betray me. To drop the things I pick up, tremble when I didn’t want it to, forget where I was driving when I could drive. I KNOW what it’s like to live with pain like it’s some demented roommate, and I remember when a trip to the grocery store was a monumental task that could land me in bed for DAYS.

I will NEVER forget sitting in Eileen Secor’s livingroom WEEPING because I was sick and fevered and was in abject TERROR of becoming homeless. She got up, gave me a tiny, blue glass turtle that a dear friend had given her and assured me that the FEAR of homelessness was FAR greater than what it actually is. I still have that turtle and I got to face being homeless TWICE. You learn to couch-surf, you REALLY learn who your FRIENDS are.

I survived.

I prevailed.

I stood back up.

I recovered.

I went back to gardening

I took up bellydancing

I moved across the country and took my place as GrammaBee to three wondrous children..

I’m staring down my sixtieth birthday in April 2011.

There were times when I wasn’t so sure that all that would happen.

Do NOT let ANYONE inject you with FEAR. Got that? There is no healing in a state of fear. Grab hold of your SELF. You and your body. Yes.

You’ve got a DISEASE. A terrible, horrible, no-good, VERY bad DISEASE.

But do not, do NOT give up on YOU.

Start OVER. Listen to yourself and watch what’s happening. You’re putting up one HELL of a fight, but acknowledge all those little victories. FEED them. You need rest, you need nourishing food. You need to put stresses elsewhere for now. You need to find YOUR allies, whatever they may be. But most of all, you need to TRUST that your body is on YOUR team. Ultimately it comes down to you and YOU.

I honestly believe that the thousands of us who have beat Lyme and lived to talk about it are going to stand up EVER so tall and stare down the worst that the world has to throw at us knowing……….. that you CAN’T scare us anymore.


© 10/27/2010 LadyB