Are You Feeling Me?

I’m on a rushed walk with a friend of mine, and we are both venting about various things when I realize I’ve asked her too many times, “Ya know what I mean?”  She always responds with, “Yes… sure!” or a gentle nod of the head, but she’s a super-agreeable pal.  I've been talking for a solid 5 or 30 minutes so I pause, going over the conversation in my mind and note how I've sounded like I’ve been asking for her approval the entire time I’ve been talking about my "no-brainer" decision to take a new job.

Over the past few years, I’ve become more aware of how often I ask friends and family if they’re GETTING me.

I once read, several years ago, people who frequently use the words “Ya know?” / “Do you know what I mean?” in conversation come across as timid or weak and longing for validation.  Especially as a woman, never, ever use these conversational fillers—you’ll give the person with whom you are speaking the upper hand.  I believe I read that message in a business journal of some sort while waiting in a dentist’s office because they didn’t have any new issues of People or US Weekly (the only place I can read about George Clooney and David Letterman's bromance).  The article really irked me because I knew I was the prime audience the author had in mind so it has stuck with me all these years.  (But obviously hasn't done much to reduce my inane conversational fillers)

For as long as I can remember, I’ve felt an intense [lil’ bit insane] desire to be understood.  It began with needing that nod from my parents and my dog (I’m sure if I had a sibling, he/she would have been subject to my interrogations on whether or not I was making my point clearly enough).  My dog ALWAYS got me, btw.

As I got older, however, I needed my best friends to really FEEL what I was going through… “He said he’d call as soon as he got back from his ski trip, but my phone hasn’t rung, and I KNOW he is back.  I saw his car in the driveway!  I wasn’t stalking his house though… I just drove by on my way to Baskin-Robbins to meet you.  I’m feeling like he just didn’t miss me as much as I’ve missed him.  Ya know?  I’m even re-thinking the Christmas gift I bought him because it might be over-the-top.  Do you think an ID bracelet is just too much for a couple who’s been together for only 4 months?  I kinda feel like it is now.  It's sterling silver.  Maybe I should have just stuck with the rugby shirt from Britches.  Ya know?  Do you know what I mean?”

UGH.

Okay, we already know all teenagers want to feel accepted and understood by their friends.  It’s why my 14-year-old listens to music he doesn’t even like, buys $18 “hair butter” and punches his buddies in the arm if they misquote him on hockey stats.  But now I’m a real, live grown up (mostly) and I still find myself wanting my closest friends to know exactly how I’m feeling about certain topics or know just what it means to live in my house or how it reeeeeally feels to be divorced when never-in-a-zillion-years you would have guessed you’d be a single mom raising two kids alone.

As it turns out, this desire to be heard and understood isn’t unique to women or timid folks or needy teens—it’s a universal trait of human beings.  Whew, right?!  

Oprah Winfrey talked about it a few years ago in a commencement speech at Harvard, saying the one thing all of her interviewees (over 35,000 people) had in common was the desire to have made themselves heard properly, meaningfully.  The first questions to her after an interview always being, “Did that sound okay? Did what I say mean something to more than just me?”

So now, as an adult, life has gotten even stickier and messier than teenaged life (if you can believe) and for those of you who have not hit the messier-than-teen-years point, I salute you (and I gently urge you to tighten your seatbelt, just in case).

The messy thing I find myself wanting my close-others to understand most about me and my family today is what it is like to have a chronic disease.  Specifically, what it is like for all three of us to have neurological Lyme.

In one of my Lyme Info Groups on Facebook, a young girl posted this question this morning:  

"I need advice.... One of my friends seems to be not understanding my circumstances with having lyme disease. My friend said "Shouldn't they have fixed it by now or have it cured, it's been over a year" or "you're walking in school right now aren't you?" She said that I shouldn't let this disease ruin my life and she said that when her mother had cancer, she still went to work and fought it. How do I explain to her? Everyone at my school thinks I'm skipping and the school itself doesn't understand. How do I explain myself?

I get bullied by my teachers. By my classmates. Everywhere. They see me as a faker and a pretender."

My heart breaks wide open when I read comments like these, and I give thanks my son's school just approved his half-day schedule as he undergoes a more rigorous Lyme treatment and sleeps for up to 15 hours a day.  I thank God my daughter's teachers, administrators, counselors, and teacher assistants handle her gently.  Many have actually read numerous articles on what chronic Lyme is like for children and what PANDAS can do to a child's brain.

I responded to this sweet girl who came to FB seeking understanding with the empathy of a mother/fellow Lymie/ mother of Lymies, and the protective FB community rallied around her with “You are not alone”s and beautiful scripture verses and song lyrics and terrific quotes and positive energy.  One of our online friends pointed her in the direction of a teen FB group for kids with Lyme disease.

She responded later:  

"It makes me feel happy knowing that I [am not] the only one going through this problem. I have hopes to raise awareness.  If you go on my Facebook page, there is a video that I made. Its public so you guys may watch it. It is of me standing up for myself."

Just a little validation from some internet pals gave this awesome teenager the strength to push through the pain of Lyme, of being bullied by TEACHERS for heaven's sake!  When we know someone understands what we are going through, the world is a much less frightening place to live, isn't it?

I talk to Jesus a LOT.  He really gets me.  And I'm also lucky enough to have a handful of friends who have stuck by me through these "hermit years."  These past 6 or 7 years when I've been sleeping, caring for sick kiddos, resting up for the next fall-out, working, researching online, and, basically, unavailable at all times.  They may not know the names of the co-infections we're battling or the exact definition of Lyme exhaustion (my son says it shouldn't be called chronic fatigue, but better described as all of your internal organs and bones turn to mush, but your brain is saying GET UP--YOU'RE MISSING LIFE but you can't move).  My parents have seen first-hand what Lyme can do to a family, and my kids and I thank our lucky stars for those two sticking around.  But those buddies who continue to show up through texts and phone calls, who invite us over for dinner even though they know we'll probably be going to bed by 8:30, who travel far distances to just TALK face-to-face... I consider myself truly fortunate to have that handful of true-blues who cannot really understand my weird life, but don't have to in order to love me.

However, I've lost a lot of potential friends because the saying is true:  To have a friend, you must BE a friend.  You must spend time together creating stories, making music and acting silly.  But when you are constantly immersed in ServeViving, you don't have much time or energy left over to be a great pal to many people.  Even to parents.  I wish I had more time to give my parents.  I wish I was still that talented friend who mailed the birthday card right on time.  Now I don't know what day it is, much less remember to buy the card.

Nevertheless, I am hopeful the day will soon come when my kiddos and I are healthy and Lyme is understood by the majority of the medical and general population.  Not many can relate to resting up for 12 hours to do laundry, teach Sunday School, fertilize the lawn or attend a party, but then paying dearly for it later.  Some will think you're lazy or an introvert or just plain weird, when all you're trying to do is survive with dignity and keep some fresh make-up on...

...but I'm beginning to realize as long as YOU know who you are, how hard you work, how deeply you love, and one or two special humans hold your hand and listen... you can start collecting tiny pebbles of joy in mason jars again, aware that being fully understood by someone is rare and precious and sometimes only happens a few times in one's life.

Not everyone needs to GET me.  I realize that now.  And I'm going to vow to be a better, more genuine listener than I am a desperate talker from here on out.  Starting NOW.

So talk to me.  (And you know what I mean!)

    

THE GOOD NEWS IS... Umm...Uhhhh...

Two things I sometimes DREAD, yet appreciate greatly.

Dentists and Facebook.

I just got home from a visit to a new, delightful dentist who believes he can help correct my TMJ and help me stop clenching my teeth while I sleep.  This will be the 8th highly recommended specialist I have seen in the last decade just for help with my teeth and migraines as a result of having chronic Lyme disease.  Good ol' lucky number 8, right?!

The funniest thing about my visit was when the dentist told me the following:  "You just really need to learn how to breeeeathe.  Inhale...  Exhale...  Have you ever tried yoga?"

So after I heard, for the first time in my life, I just need to learn how to properly get oxygen into my lungs and CO2 out of my lungs and CHILL THE HECK OUT then my pain will dissipate, I paid the man and skipped out of the office with rainbows and fairy dust billowing from my third eye.

[Geesh.  Sarcastic much?]

Sorry, I don't really want to write about my dental exam or the thousands of dollars it will cost to try the latest and greatest remedies for my "stressed out" jaw muscles.

[Whew... We don't really want to read about it either!]

Instead, I feel a great demand upon my soul to write about the receptionist I met in the dental office and what I read on Facebook when I got home.  Warning:  I'm not being urged to write about the following topics because they are funny.  I feel a responsibility to share with anyone who will listen because those who need to be heard are too sick to make themselves heard.  Now, pretty PLEASE read on...

Before I left the office, Grace, the receptionist (who, by the way, is one of the most gracious receptionists with whom I've ever had the pleasure of speaking) gently and thoroughly explained the reasonable treatment costs and with a bucketful of genuine empathy said, "I understand if you need to think it over at home, and I understand if you just want to get started yesterday."  I had talked with her on the phone before making my consultation, and Grace knew I'm feeling a little more than desperate to avoid dentures at 42 because my perfectly good teeth are being chomped out of their gums.

I laughingly told her it was part of my evil plan to visit every dentist in Northern Virginia to let them know one of the symptoms of chronic Lyme disease is uncontrollable clenching or grinding of teeth.  She politely giggled with me, then got very serious.

"You have Lyme disease?  Can you tell me how you found out?  I think my daughter who is in the hospital as we speak has Lyme, but no one will believe me.  Not the doctors and not my husband.  Well, my husband is just too busy to read everything I read so he doesn't understand the symptoms like I do.  What were your symptoms?"

The conversation that followed is similar to many (more than I can recount) I have had with friends, neighbors, strangers and on-line pals since 2009.  I list the symptoms I had and have, beginning when I was 15 years old, and as briefly as possible, tell about my medical journey (nightmare) beginning after my son was born through today.

Usually, when I list my top 5 worst symptoms, the person with whom I'm speaking starts nodding their head vigorously, or conversely, their mouths fall open.  Grace stood stunned as I listed every symptom her 23 year old daughter has suffered from since she was in high school.  Migraines, heart palpitations, joint pain, fatigue that doesn't get better with rest or exercise, TMJ, brain fog, short-term memory loss, anxiety, depression, feelings of hopelessness, pain that seems to 'jump' to every muscle and bone in the body, crying jags, inability to articulate thoughts clearly, ringing in the ears, hearing loss, blurry vision, stomach issues, nausea, vertigo, dizziness, low blood pressure, swollen glands, panic attacks, shortness of breath--aka air hunger...

"Oh my God.  ALL of those!  My daughter never completed high school.  She's been to the Mayo clinic!  They told her she had polycystic ovary syndrome.  Some doctors told us it's all in her head.  She's in the hospital now being 'treated' for POTS, but she gets worse everyday!  I KNOW she has Lyme disease.  How do I get her tested with the right tests?  Oh my God.  Is the Western Blot test all we've got?"

It was as if hearing all of her daughter's symptoms listed like that made it perfectly clear that she needed to trust her gut instincts.  She knew what was wrong with her daughter--all she needed was someone to encourage her to trust herself.  Doctors are amazing, dedicated, hardworking individuals who save lives everyday, but they are not all-knowing Gods.

This is when I try to share hope with anyone who will listen.  And not cry.  This is the part of the conversation where I say, "Not only am I recuperating, but I have dear friends who have recovered from this disease after having seizures, MS diagnoses, temporary paralysis and brain aneurysms.  Your daughter can and will get better... she just needs the NEXT BEST STEPS, lots of support, and a doctor who knows WHAT THE HELL LYME IS.  (I use CAPS here, because I'm so upset, but I promise I never scream at these precious folks)

I told Grace the Western Blot is terrific if you get a positive result... that means you have Lyme and some doctors can actually read the test results properly.  Whoopie!  However, if you get a negative result, you have no idea based on the test alone because the test has a 70% false negative.

I shared the name of the only lab I know of that has been reliable and asked Grace to please, please email me for more details on the handful of Lyme Literate doctors in our area who are good, moral people not wanting to make a fortune off of the most desperate sufferers.

We hugged.  Then I drove home.

I logged onto the computer and wished a few friends Happy Birthday on Facebook, and then I checked in with my Lyme groups since my heart was heavy and needed some inspiration.  I belong to two Christian support groups for Lyme sufferers.  We pray for each other and remind each other how it's our greatest freedom to choose God in the midst of our suffering and to rely on Jesus to work through us, even in our diminished state.  A total of 3,303 people make up the membership of these two precious groups.  Occasionally, the need to pray for each other is greater than I can fathom, and I become overwhelmed and angry because of all the silent suffering.

The following posts are all from this week.  I asked my fellow FB prayer warriors if I could share their words here.  More than just a smattering of the Lyme community needs to hear the desperation of these voices:

“Tired of feeling like a burden. I know that people have offered me their numbers. But I've always been shy about calling people, especially just to cry or complain. So I sit here, crying, feeling like my end is near,... I hate that my life came to this point. I'm such at a loss for words. If it weren't for my kids, I'd end it all right now. I'm sick of fighting and explaining myself to others. Being misunderstood. No value to society.” --Sarah 

“Say a prayer for me, I've ran out of money for any and all medical treatment. No job, all I can do is hope and pray for my disability to be approved. Honestly, I'd rather God just let me die than continue to keep me here suffering and being a burden to my family.” –Crystal

“If any of you feel led to pray for me I would be very grateful I am really struggling with my illness as well as issues with family abandonment and grieving the loss of my pet 10 days ago I truly feel so very alone thank you all for your thoughtfulness and your kindness God bless you♡” --Rachael

“Ever feel like it's too late? Like, yeah I may have the answers now as to why I've been suffering all my life. Why I've been so misunderstood... Yeah I have metal toxicity and Lyme and coinfections. But, without the strength or family and friends support, I don't have strength to fight anymore. My heart aches for my kids, my family, and everyone I've let down, due to my illness my whole life. I feel like I'm dying now from this respiratory illness i have. I'm very weak. The only person that even helped was my abusive EX, ! Imagine that. He bought my heart med for me and brought me fluids. Nobody else in my local area so much as offered to help. I feel like an outcast and a burden. I don't enjoy anything anymore. When I think of my beloved kids, I smile, then break down crying. I can't explain. I'm not as strong as some people are. If life is survival of the fittest, I'm a goner. I have nothing to look [forward] to except uncertainty. I've been sick and misdiagnosed and misled and misunderstood my whole life. I can't take it anymore. Not strong enough... I'm too scared to die. Too scared to live like this either....”  --Mary

“I'm sure if you all are like me, my memory comes and goes. One of the saddest things I'm losing are all the Scriptures I once knew. I find myself trying to talk to me kids about verses I once knew but can't find the right words or remember where it's found.....”  --Cindy

“Y'all please pray for my family. This disease has been throwing things at us for almost three years and my bucket is getting full. Trying so hard to stay positive but every corner we turn exposes another problem. Not sure where I am with this anymore, three years and things have barely changed. The part of me that I could depend on has been chipped away at for so long that what's remaining is just a skeleton of what I was. Three of us have lyme and I have given my problems over to the Lord but it does not make excepting this any easier. Confusion, anger, frustration, sadness, etc seems to be taking over. Thanks for listening.”--Rob

“I'm at my witts end. I've got Lyme, not sure on co-infections right off hand, hypothyroidism, low DHEA/adrenal fatigue, and who knows what else. My energy is zapped. I need to have surgery on my foot again. I try to help around the house, but I've got two under two and have no energy to take care of myself let alone my girls. My husband is the only one who works....I just told him to leave for a while since he was swearing in front of our girls and our oldest is 17 1/2 months old. 
He is all pissy cause I don't do all of the cleaning and he is saying that I'm now using the evening sick as an excuse.
I told him at I don't want to be sick and he blames me for being sick.
He is also [threatening] divorce.
I just don't know what to do any more.”

What are we, as a nation, going to do about this?  Do you think people who suffer from Lyme should have to pay out-of-pocket for even the simplest treatments?  Lose their homes, their dreams of college, lose the ability to even leave their homes?  Do you think it's a travesty our DOGS can be protected and treated for Lyme, but humans cannot?  Are you curious to know why so many chronic Lyme sufferers who are told they "just have a mental illness" commit suicide?  Do you want to help this community of fighters?  Email me if you'd like to know how.

Thank you so much for reading.

Love,
Ginny