23 -- The Portal / NEW WORLD

I live near Ridgeway, SC.  In the town there’s an archway, all that is left of the old school.  It’s a pretty cool relic.  I’ve always referred to it as “The Portal To Another Dimension.” 

In many ways, I feel like I stepped through a portal into another very strange dimension called Myasthenia Gravis.

So many changes, everywhere, in such a short span of time.

At home, there are subtle differences in our living space.  There’s a chair in my bathroom because I can’t always stand up to comb my hair, brush my teeth, or put on my makeup.  It’s just exhausting, and I sometimes find it easier to do those things seated. 

In the corner of the bedroom, there’s an overnight bag.  It’s my “Grab and Run” hospital bag.  Already packed with pajamas, toiletries, a phone charger, other odds and ends that I’d need for a hospital stay.

There’s a squeeze respirator in a basket in the den; another one is in the car. 

There are a few copies of an MG fact sheet on the end of the piano, by the back door.  That’s to give to EMS workers who may be unfamiliar with what MG is all about.  That came in quite handy the last time we had to call 911; the paramedics appreciated that information.  I appreciated that they wanted to know more. 

In my wallet is a little card to present to a highway patrolman that says I may sound/stagger like I am intoxicated but I am NOT – I have Myasthenia Gravis. 

On the outside, I LOOK fine.  In fact, I probably look the best I have in years.  Before all this started, I had lost a little weight.  People tell me all the time how good I look, and I say thank you.  My mama raised me right.

But on the inside… I feel anything BUT fine.

Many days, it feels like every cell in my body is vibrating, buzzing, throbbing.  My hands shake.  My voice sounds wobbly or thready.  If I am super tired, I cannot speak plainly. My vision is blurry, sometimes it is double.  The good news is that medication is beginning to help with that, though.   

“Fragile” and “brittle” are not words I would have EVER used to describe myself before.  But now, I feel like I could collapse at the slightest provocation.  A stiff breeze could knock me down and I’d shatter into a thousand pieces.  Or maybe, I AM shattering, inside, and the vibes I feel are my immune system being re-constructed. 

My emotions are all over the map.  I’ve never been one to cry – at our house if we are watching a sad movie, David is the one with the box of tissues, I’m rather stoic.  But now I cry at anything, I cry at nothing.  There are nights that I cry before I go to bed, and mornings when I wake myself up crying.  Again, medications are helping with that as well. 

There’s a loss of independence, to some degree.  Being able to drive again has been a giant step towards re-gaining my “freedom” – though I am seldom left alone for more than an hour at a time.     

I am keenly aware of every bit of food and drink I put in my mouth.  My weakened facial muscles make choking a real hazard.  I use a straw to drink.  I cut the food into small bits and am careful not to put too much food in my mouth at once.  Nearly every day of my life, I’ve had cereal for breakfast – usually Cheerios or Raisin Bran.  But the multiple textures of cereal and milk are sometimes difficult to manage.  So my go-to breakfast is no longer at the top of the menu.  David makes a great omelet, or scrambled eggs with bacon, grits, French toast, fresh fruit– all of it is delicious and I appreciate him so much!

So what’s next?
I wish I knew.

If you’d told me a year ago – even six months ago – about how this summer would pan out, I would have been absolutely flabbergasted.  This came on so quickly, we had no advance notice. 

We look for our “new normal.”  I test limits just to see what I am capable of accomplishing.  I know already to space things out.  If I have a doctor’s appointment or need to run errands somewhere, I need to make the next day a “recovery day” and do absolutely nothing but allow my body to rest. 

I must learn to say things like, “I’m sorry I can’t go with you.  Thank you for asking me, though.” I sincerely hope my friends will understand when I have to back out of things.

We celebrate small victories, proof that the medications are working.  Things like me being able to talk plainly for several days in a row, or being strong enough to do small chores around the house.  I celebrated that I was able to discontinue taking Mestinon, and look forward to decreasing the Prednisone slowly until I am off of it altogether.  Hopefully I will be able to live close to normal just on Cellcept.    Or even better – that this will go into complete remission and I don’t need any medications.

There is always a chance for a flare – a return of MG symptoms.  Heat is an enemy – if I get too hot I literally wilt before your eyes and have to lie down in the cool to rest.  It pays to be watchful and prepared.  An ice pack can be my New Best Friend in times of need! 

And yet….it's not all bad.  I  am not Myasthenia Gravis; I just happen to have it.

I think I will enjoy less stress, a slower lifestyle.  I have pushed and set deadlines for myself my whole life.  Now, I’m learning to re-prioritize things.  I’m learning to “just say no” to some things.  I realize that there will be things that I may WANT to do – or may think I SHOULD do – that I simply need to take a pass on.  Becoming more selective about what to exert my limited energies on will be a challenge, but I think it will be a good learning experience for me.

My sister and I chat every single day now.  We’ve gotten closer since she retired a couple of years ago, and this illness has now brought us even closer.  I love that we now touch base with each other every day, even when it’s just a couple of sentences. 

I have a few projects that have been on the “back burner” for quite some time that I’ve moved forward.  They’re not labor-intensive, so much…just a few things that I always said I’d do “someday.”  Things like…putting old family photos into albums, and re-publishing the book I wrote several years ago, perhaps writing another one.

David and I are closer than ever – I couldn’t imagine that possiblility, but there it is. Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.  

Our relationship has always been based on “appreciate and reciprocate” but I think we’ve added “with courage and strength” to that motto.  It’s a wondrous blessing to have each other.

 Being more appreciative of the little things in life, letting go of self-judgments, seeing peace in the moment – all of these concepts will lead toward a fuller life.  

Life is good and precious, too beautiful to ignore. 

As my dear friend Pam T. wrote me, “Maybe that's the lesson.  To learn to love and know your weakened self and treat her with the patience and the care, in the way that your "familiar you" treats others.  Anita, meet weakened Anita.  Together you will be strong again.”

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Untethered Time Travel:  NEW WORLD

It is 1962.  I am 6 years old

I am in first grade and my teacher is Miss Lou Randall.
My classroom is the first door on the right at Peachland Elementary School.

We sit at little tables, just our size.  I recognize Lynn and Gail and Charles from church.  I make new friends:  Cathy has red hair, Debbie is her cousin, Pam has long blonde hair.  

Miss Randall begins to teach us the alphabet and the sounds each letter makes.
I can already write my ABC's, and my name -- my daddy taught me.
We begin to read books about Sally, Dick, Jane, and their pets Spot and Puff.

I make the connection of the letters and their sounds.
Suddenly -- I can READ!  
It is making sense to me!

Once I begin to read, I I can go places, I can experience things. 
I discover the Bobbsey Twins books, then I travel the world with Pippi Longstocking!  Eventually, I solve mysteries with Trixie Belden and the Hardy Boys. I follow the career of Cherry Ames, Student Nurse.  As I grow older, I read about Florence Nightingale, Amelia Earhart, Eleanor Roosevelt,
 Harriet Tubman, Sojourner Truth.  
History comes alive for me.  The future is full of endless possibilities!

Novels, mysteries, biographies, romance, fiction -- I read everything I could get my hands on, and I still do to this day.

A Whole New World opened up to me, 
just by learning to READ.