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.