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!)

    

Losing It

Part One of

What It’s Like Having a Disease Some Folks ‘Don’t Believe In’

I think it will be easiest for me to write about Lyme Disease and how it has changed my life if I begin with where I am now and go backwards.  Some stories are harder to tell from beginning to end, and I think if you have late-stage Lyme disease you tend to think and talk in circles anyway.  So perhaps this story will be cyclical… spiraling like a spirochete. (ha.  just a little funny for my fellow Lymies)  It’s my hope that my words can offer a bit of comfort to sufferers who are afraid they will always be stuck in bed or unable to put a full sentence together again.  I am just one example of millions of Lyme survivors, and you can be too.  Please, please believe.

The first discussion topic that comes to mind is how much I forget because of neurological Lyme.  (ha. see what I did there?)  I think if I had once been a major athlete I would most miss the ability to rollerblade without my knees swelling up or swim the Dwight Crum Pier-to-Pier Race in Manhattan Beach, CA.  But what I miss most is my mind.

I forget a lot.

Not just where I put my car keys or the milk carton in the trunk, but I forget A LOT.

I forget important appointments with doctors and the Verizon guy, friends’ birthdays, what day of the week it is, the names of people I have known for a decade.  I forget to get my car inspected and drive around with an expired county sticker mocking me on my windshield for a year.  I forget to give my child supplements she’s been taking daily for more than 36 months.  I forget what time I need to take my son to hockey practice, even though it’s been the same time and same night of the week, every week for heaven knows how long.   Friends can tell you, I often forget stories they’ve told me even though I was listening intently and feeling all the feelings their stories evoked.  My common saying now-a-days is, “Please tell it again, it’s new to me!”

I’ll even forget words.  Common, kindergarten words to impressive “collegiate” words I might have known once upon a time.  This problem could possibly be the most frustrating for me at present--and that makes me one of the most fortunate Lymies.  I DO recall being an English major who used to complete beautifully worded written exams under pressure of the clock, and a woman who could speak somewhat eloquently, choosing her words so quickly and carefully that friends would ask her to argue with their boyfriends or husbands on their behalf because I could say ‘exactly what they wanted to say, but couldn’t.’  That was kinda fun.

Another issue we late-stage Lymies deal with is word-recall and improper usage of words.  When my daughter insisted on sleeping in my bedroom with me because she was so afraid to be on her own, I indulged her because I knew the fear stemmed from her OCD, and honestly, I’m just too tired.  However, if you have ever tried to share a bed with your child, you know they aren’t peacefully sleeping until their foot is wedged between your ribcage and your liver or their precious little open mouths are breathing heavily into your face on your pillow.

One night I’d had enough, and in a heated argument about how sleeping beside my bed was exactly the same as sleeping in my bed (except Mommy may be sane in the morning) I loudly instructed a whimpering Izzy to “GET IN THE SUITCASE AND GO TO SLEEP!”

Forever and ever our family will refer to sleeping bags as suitcases. 

We can now giggle over the fact that I’ll ask the kids if they want milk with their coffee instead of milk with their pancakes.  We’ll even grin when I’m in the middle of a tirade about how I need some help around this house!  Someone other than me needs to pick up after themselves!  People!  See this sock??  It goes in the clothes THINGY and your stupid toothbrush shouldn’t be on the THING with the gross STUFF!  And who left the dog ROPES lying on the floor in the kitchen [they’re called leashes, Mom] I don’t care what they’re called, just put them back on the hook in the carport where they belong!! [what the heck is a carport, Mom?]  GARAGE!!!!!!!!!!

Okay, so mostly the kids just laugh at that—I sometimes go into the toilet and cry a little bit.

I’ve had many kind folks try to tell me my short-term memory loss is just a normal part of aging and they, too, suffer from walking purposefully into a room and forgetting why they did.  However, this kind of memory loss is different and is something long-time Lyme sufferers deal with on a daily, sometimes minute-to-minute basis.  There are herbs and acupuncture and juicing and exercise that can help lift the brain fog considerably, but I’ve learned it is a part of living with Lyme disease that is often quite difficult for sufferers to make peace with.  (With the speed Lyme disease is spreading throughout the world and being ignored by many Infectious Disease doctors, buy stock in Post-Its now, friends--trust me) 

We don’t want to be considered less intelligent than we are or once were, but stumbling over words certainly gives that impression.  We don’t want to feel marginalized because we can’t always express ourselves when and how we need.  I believe our shared fear is that we will become regarded as less significant thinkers and feelers. 

My prayer for all of those who have been suffering from this hideous disease, especially those of you who cannot even get out of bed and for whom the body pain will not cease, is that one day soon our very real challenges and heartaches will be recognized by the CDC, the medical community and all of those loved-ones who have abandoned you, and you will be shown empathy instead of disdain.  No one will try to tell us it’s all in our heads, as if we really want to claim the title of MOST LYMEY or GREAT LYME MARTYR WHO LOVES GOING TO THE DOCTOR MORE THAN VACATIONING.  I’m also constantly praying for the precious souls who reach out almost daily in our Facebook support groups saying they cannot go on living with this disease.  I hope you will find the strength to persevere knowing our gracious and loving Heavenly Father feels your pain and is by your side even when you feel isolated and alone.  Friends, I believe we are so close to finding a cure.  Please choose to believe this with me.  Choose HOPE.  Pray, and then pray some more.  I’ll be praying with you; I promise.

Forgetfulness

by Billy Collins

 The name of the author is the first to go

followed obediently by the title, the plot,

the heartbreaking conclusion, the entire novel

which suddenly becomes one you have never read, never even heard of,

as if, one by one, the memories you used to harbor

decided to retire to the southern hemisphere of the brain,

to a little fishing village where there are no phones.

Long ago you kissed the names of the nine muses goodbye

and watched the quadratic equation pack its bag,

and even now as you memorize the order of the planets,

something else is slipping away, a state flower perhaps,

the address of an uncle, the capital of Paraguay.

Whatever it is you are struggling to remember,

it is not poised on the tip of your tongue

or even lurking in some obscure corner of your spleen.

It has floated away down a dark mythological river

whose name begins with an L as far as you can recall.

well on your own way to oblivion where you will join those

who have even forgotten how to swim and how to ride a bicycle.

No wonder you rise in the middle of the night

to look up the date of a famous battle in a book on war.

No wonder the moon in the window seems to have drifted   

out of a love poem that you used to know by heart.