Tuesday, April 30, 2013

The Positive Post aka "I Get By With a Little Help From My Friends."

After I announced that my next post would be positive, and I PROMISED, I promptly had a no good, very bad day. It appears, like Alice, I have fallen down the proverbial rabbit hole, although Medicare calls it the "doughnut hole." Nice. I can't even eat doughnuts.

So I struggled. What on EARTH would I talk about? I turned to one of my favorite groups of women and posed the very question, "What's positive about Lyme Disease? I said I'd write something positive. What do I do?" There was a whooole lot silence. Finally someone volunteered, "I'm going to need to think about that." More silence. More silence. And then finally, one of the group cheerleaders said, "I appreciate the simple things in life more than I used to." There was RAPID agreement.

As I hung out w/them a little bit longer last night I watched one member voice a fear and several rally to encourage her ... one who has even shared the same procedure with much relief. There was some more discussion of a variety of things and then one by one we left for our evening routines. But as always ... someone said, "THANKS! I love you guys!" And that's what positive about Lyme Disease. Love. Or, more precisely, the ability to recognize it, give it, and receive it.

Along the road to recovery we lose a LOT of love in forms we once found it. We are disbelieved, struggle to explain, and are smacked down again. We use our canes/crutches/wheelchairs to pull ourselves back up only to be dealt another blow. A deep friendship is gone. A parent bows out. A spouse/partner leaves. Ironically what the Chronically Living need MOST is to be Chronically Loved. So we love on each other. A broken, tattered field of warriors crawling toward each other with fingers extended. "HERE, touch me. I'm HERE. Touch me. Hold on. Really. I won't let go. Hold on."

I am blessed with some incredible traveling companions for the journey. All are different, yet each fills a different need of mine and I pray I am able to give back to them. While sometimes it seems to flow uphill, in the end, it all just flows.

I belong to several groups or organizations of Lyme patients. In one we are all survivors of other groups ... either by our own decision or not. And like the walking wounded, we gravitated towards each other. I was contacted by a complete stranger after being the target of some misdirected rage. All she asked was, "Are you ok?" Well, NO, I was not ok!!! I was HURT. We spoke by phone the next night and I sobbed out my entire life's story to a complete stranger. She listened gently and responded with something like, "Of course you're hurt and no, I don't understand either. It will be ok."

The next day I received a PM from a woman I'd never heard of, asking me the same thing. "Are you ok?" NO! I am NOT ok. More sympathetic murmurings, more reassurance that I hadn't done anything wrong and to let it go. LET IT GO!?!? Over time this woman and I became very close friends and we Skype regularly. Sometimes she's sobbing and sometimes I am. Sometimes she's the cheerleader and sometimes it's my job. We've toured each others homes via Skype and gone over our med/supplement/food regimes with each other. I've waved at her husband and one of her children. She knows all about each of mine. I watch her let her dogs out. She sees Larry. There are times when one of us says to the other, "I am SOOOO sorry to bother you. You must think I'm a BIG BABY" and the other says either, "No, you're not" or "Ok, we'll be big babies together."

Do we hurt less? No. But we hurt together. Nothing says "real" like watching another person in pain gasping and grasping for something to hold on to. And what do many Lyme patients do? We wiggle our fingers and inch closer to each other. We frequently say things like, "If only we could all be lying on couches in the same room. Taking turns bringing each other food, or meds. Watching 'The Big Bang Theory.' Yeah. What do you want to watch?" These are STRANGERS. Intimate strangers.

WHO ARE WE? Art directors. CEOs. Social workers. Psychologists. School psychologists. Teachers. Former models. Engineers. Scientists. Lawyers. Public service workers. We are each of us, we are all of us. We span all ages, political affiliations, religions (or not), socioeconomic statuses, and personal lives. These people love me. ME. And I love them. LOVE.

I really can't go into the others much as I don't want to divulge any privacy (HEPPA form? Did you fill out the HEPPA form???) but I love my peeps and my ladies. I can ask ANYTHING of ANYONE and get a straight answer ... and I'll shoot one right back at them. In the beginning I was afraid of sounding "stupid"or asking something that had been asked 1,000,000 times before, but I had missed the post. I've become well acquainted with the search function of many a site and try to do my homework first. But if I'm particularly foggy someone will give me a piggy back ride through that pea soup and sometimes I carry them. Sometimes "we" remind me of the movie "Defiance." No Lyme Patient Left Behind.

We joke. Oooooh, our humor is DARK. But it's humor. Sometimes I laugh so hard I have tears running down my face. WHY? Because I KNOW what someone meant when they described a certain yoga pose they could not hold. WHY? Because just the day before I disgusted myself with my own body's inability to do the SAME ONE. We mourn together. Cry for each other. Pray for each other. Send "light and love." Hug each other. We circle the wagons.

We get by with a little help from our friends. A LOT of help. A lot of love. The healthy should be so blessed.


  1. This is lovely. I'm glad you have so many good supporters!

    When I got sick I discovered that people I thought would stay by me disappeared. However, people I did not even know were ANGELS.

    I hate to think that Mick Jagger had it right all along - we don't always get what we want, but we get what we need.

  2. Most of my "real life" friends are long gone. Mick got it right ... we get what we need.

  3. We do get what we Need..... xo