The Mysathenic Bride – Joyce
On 2 March 2003, I was wed.
MG has been my mate for around 12 years (at least from when symptoms became regular). I am happy to say that I am in a kind-of remission – I take medication only a couple of times a month (as long as I do not physically exert myself and I remain relatively stress free – which is pretty hard for a drama queen like me!).
At my engagement party, I felt marvellous and the taking of Mestinon did not even occur to me. That is, not until the photography started. The first few photos were easy enough … then it hit! My smile! It disappeared! My eyelids! Oh how I wished that they’d stay up by themselves! The more I fretted, the less facial control I had. And despite repeated facial rest periods, many of the photos show that all I could muster was the dreaded sleepy-eyed, myasthenic grimace. AARRGH!
However, a valuable lesson was learnt – Mestinon on the wedding day is a MUST, remission or not!
In planning for the wedding, I tried to accommodate MG wherever possible.
I wanted an autumn wedding to avoid weather extremes. The heat and humidity of summer really drag me down – every movement of limb becomes a chore. And very cold temperatures turn my fingers and toes to rubber (my fingers pretend to listen to me – they bend, they stretch, they look like they grab hold – but ask them to pull a button through, or a zip up, and it is mutiny of the digits!). On my wedding day, I did not want to be conscious of what was physically happening under my skin!
2 March was the only day in autumn that both church and reception venue were available (which was close enough to summer to cause a little concern).
It was not until after the invitations were posted that I noticed that the reception venue did not have air conditioning. I had been there umpteen times. It is a historic building and I was taken with the high ceilings, the art work, the ambience and the harbour views. Who looks out for details such as air vents???
“You should have told me!” I cried to the functions manager.
“You didn’t ask” he said.
“So how do you cool the place down?” I asked.
“We open the windows”, he responded.
“What if it is over 30 degrees, like it is today?” I countered.
“We are in a huge sandstone building with huge windows, on top of a hill on Sydney harbour”, he said. “And it’s not hot now, is it?”
My fiance, sensing my rising panic and knowing the drama queen in me, tried to assure me that it NEVER gets hot at the top of the hill in Manly. It was obvious that neither the functions manager nor my fiance had ever participated in Lebanese folk dancing (my parents are of Lebanese background). “It will be OK”, soothed my fiance. “It will be OK”, soothed the function manager.
“Oh, my! WHAT ARE YOU GOING TO DO????” shrieked my bridesmaids, my mother and my sisters-in-law.
So I did the only thing I could do – I prayed. I prayed fervently to God and to Blessed Mary MacKillop that we have a mild day. And if we absolutely had to have heat, I beseeched them to hold back the rain, as possibly worse than any MG symptom on my wedding day, would be FRIZZY hair on my wedding day!
The myasthenic bride needs to consider comfort before style. Myasthenics are a lot more conscious of muscular exertion than the average person.
Heavy bridal fabrics and finicky styles were no-go. An overly long or heavy train on the gown could tax my arm if it were to be carried for any length of time.
Sling-back shoes were also out – they required more energy to stay on than the less stylish (ok ok, much daggier but who’s looking under the big skirt?) lady jane buckle ups.
My bouquet had less flowers than I would have liked, but it was fairly light.
The make up was styled to compensate for droopy eyelids. One fantastic discovery was Lipfinity – a lipstick which really does last the advertised 8 hours! (This has nothing to do with MG at all, but it sure had all of us girls excited! Max Factor did very well that day).
The photographer was instructed to take photographs quickly (none of this, “on the count of three” business). The parents and fiance were instructed to warn me if the smile sagged (I am sure that you have experienced this … you think you have the widest grin, and all the effort exerted should produce a beautiful smile, but no, it’s only the MG grimace).
Well, the day turned out to be beautiful. God came through with sun and 21 degrees. Just perfect! The church was beautiful, the ceremony was beautiful, the photo shoot by the harbour was beautiful.
At the reception, the entertainment was great, the food was great, and everybody was happy (and yes, the venue did heat up). The face started playing up later in the night – but what a wonderful way to succumb to MG – I don’t think I have smiled nor danced so much in my life! I found it difficult to speak properly as my jaw and mouth started failing me, the eyelids were a battle, and as the photos were to later show, the smile had been usurped by the grimace. But amazingly I kept on dancing until the very end!
Despite the challenges of MG, I had a great time. I never thought that I would say “It didn’t even occur to me!” as often as I did during the planning of the wedding, but now I know. And as a happy wife, I hope to never, ever go through it again!”