Maria S.

I was 49 – a mother of seven, and a busy teacher in rural New South Wales, Australia.  I loved nothing more than to work hard, garden, tend new trees, hike – many kilometres at a time.  Singing with my family was another favourite, not to mention playing the violin.  Life was good – all my family around me and in perfect health.  Then, suddenly one evening, after hiking three kilometres across the paddocks to my sister’s house for dinner, I couldn’t swallow properly.  What’s this?  I loved the food, I told my sister, but I just couldn’t seem to make it go down.  Strange.  Then, over the next week, my situation deteriorated at a rapid rate.  Even yoghurt stuck in my throat, and then I couldn’t swallow my own saliva!  I felt my life spinning rapidly out of control.  What was going on?  Just a week before I had accompanied my daughters’ youth choir on the violin for a performance of Schubert’s “Mass in G”.  But now, by week’s end, I found myself admitted to hospital where I underwent a battery of tests – first in one hospital, then in another, far from home.  Cancer?  No.  Multiple Sclerosis?  No.  ALS…? Please not.  I had watched my own grandmother suffer and die from this relentless illness.  But no, it wasn’t that!!  Then that funny name – Myasthenia Gravis.  My husband, a registered nurse, had definitely heard of this and was hopeful – something treatable.   Everything pointed to a diagnosis of MG, except the blood tests.  Double seronegative.  But my doctor was confident, so treatment began – first Mestinon (what a miracle!  I could actually eat something!), then the immunosuppressant, then Prednisone.  I was finally released to go home.  However, I deteriorated further, and life was spinning at an even more dizzying rate, and soon I found myself back in hospital for five days of immunoglobulin infusions.   Back home, although the infusions had definitely helped, I still struggled to cope with my day:  the housework, the children, visits from friends (I could hardly talk) and my students (teaching was out of the question).  I could hardly make it to the breakfast table, and then stagger to my recliner.  One day, as I sat there, tears filling my eyes, my teenaged daughter put on one of her favourite recordings:  gospel songs that her youth group had been learning.  As I listened to the energetic singing, I heard the words:

It doesn’t take a mighty earthquake
To shake the ground you stand on,
‘Cause life can change like a hurricane,
And blow all the plans you planned on.
Well, the ground is gonna shake and the wind is gonna blow
Who you gonna trust, and where you gonna go?

You gotta hold on to the Rock of Ages
Hold on to the Cornerstone!
You gotta stand firm on a sure foundation
Surrounded by a fortress strong.
When all the storms of life are raging –
Hold on!  Hold on!  Hold on to the Rock!

Yes…. That’s it!  Jesus is the Rock.  I’m gonna hold on, though all the storms of life are raging, and I feel exactly like I’ve been hit by a hurricane.  Yet now, as I sit looking out the window the sun rises – gorgeous – dispelling the dark night.  Parrots crowd around our birdfeeder while magpies flute.  And best of all, I realize, around me I have my family – my husband, my children – each ready to do what he or she can:  prepare breakfast, wash the dishes, tidy the house, deal with laundry, brush my hair, hold my hand, and yes, wipe away a few tears.  I have so much to be thankful for.  We have each other and together we’re “gonna hold on”.

That was six years ago.  Since then I spent four years in south-western Pennsylvania.  During my sojourn there I underwent a thymectomy and bi-weekly IVIG treatments.  Unquestionably, finding the MG support group of the MGA at Allegheny General Hospital turned out to be one of the highlights in regards to my MG journey.  I believe that for patients and family members to have the support and encouragement of each other is one of the best “treatments” there is.   Plus, it helps to know that no matter how poorly one feels, there is always someone worse off who needs your encouragement and prayers.

Today, back at home in Australia, I continue all the same treatments and go through the usual ups and downs of MG.  I can walk further, do more around the house, eat a reasonable breakfast, enjoy blended dinners, teach a class and, best of all, sing together with my family, songs of all kinds and for every season – even singing along with my favourite gospel song: “Hold on to the Rock.”  God is there for you and me, to see us through every situation, no matter how difficult.  It will get better!

Sometimes when life is easy
It’s so easy to keep your faith
To be grateful for every blessing
When every blessing comes your way.
But when life shakes us to our very soul,
Who you gonna trust,  and where you gonna go?

You gotta hold on to the Rock of Ages
Hold on to the Cornerstone,
You gotta stand firm on a sure foundation
Surrounded by a fortress strong.
When all the storms of life are raging
Hold on!  Hold on!  Hold on to the Rock!