The truth about Myasthenia Gravis

"To share your weakness is to make yourself vulnerable;

To make yourself vulnerable is to show your strength"

~Criss Jami~

June is Myasthenia Gravis Awareness Month, and keeping that in mind, I am writing to you today. This entry will be entirely centered around this one aspect of my chronic illness journey, so please...bear with
me, as I am sure this will be long!

When I began walking this path and started blogging about my journey, someone I love and respect told me to chronicle my own experiences rather than compiling and sharing those of others...suggesting, perhaps, that the daily struggle I face is something that is not my own. I took that advisement in stride, and decided at that moment to be as open, honest, and transparent as possible. But sometimes, reality is overwhelming and tiresome, even for me. So...to all of you reading this now, thank you for being here. Your love and your prayers mean more to me than you can possibly know. As I have mentioned before, it isn't easy to fight, and every now and then, depression is a cloud that hovers about, threatening to descend and shroud me in darkness, especially when I spend most days unable to get out, unable to drive, unable to talk on the phone, too weak to function much at all, truth be known. But fight I must, and my strong faith in my Anchor of Hope helps keep depression at bay. I am involved in a couple of online support groups, and I see that as a ministry of light, for which I am grateful.

So what is this "thing" called Myasthenia Gravis? Basically, it is a disease for which there is no cure, where there is a breakdown in communication between nerves and muscles. This breakdown causes weakness in the muscles under voluntary control, such as those needed to see, chew, swallow, talk, and breathe, as well as those needed to walk, use the arms and hands. I am finding more and more that many still have never heard of it. While considered rare, MG strikes thousands of people around the world without respect for age, gender or race.

Because there is a lack of understanding (even among the medical profession), many of us are subjected to comments like, "you should count your blessings, at least it's not cancer!", "well, if you would exercise more, you would feel better", "you really ought to get out and be involved in life more",  or even "I read that it isn't fatal and that with treatment you can live a normal life". And I am sure that if you look on the internet, you will find outdated information that tells you just that...that this debilitating and often fatal disease is anything but. To minimize the seriousness of this difficult-to-treat, life-threatening disease and the debilitation it causes, by making comments like these does a huge disservice to those of us who struggle daily. We would never make such flippant remarks to someone with Cancer or MS or ALS...but we do to those with MG, simply because this disease and its devastating ramifications are not fully understood.

You may have heard that MG patients are often called 'snowflakes'. This is because each of us walks a different disease path, and none of us is exactly the same. For some, treatment with Mestinon (a drug that helps get the message from the nerve to the muscle to function properly) is successful. For others, it takes harsh drugs and/or chemotherapy, plasmapheresis or IV Immunoglobulin (IVIG) infusions, all of which have terrible side effects and risks associated with them, to get the disease temporarily under control. And then there are those who have Refractory Myasthenia, who do not respond to treatment at all.  We have lost many people in the Myasthenia Gravis community just this year due to complications of this disease. Some have been quite young, some have left young children and spouses, and others have been a little older. But each life was important. Each person fought hard and ultimately lost the battle.

A while back, in one of my online support groups, someone (who doesn't have MG) wanted to know what our "real" symptoms are. Her actual question went something like this: "I know you have droopy eyelids and all, but are there any 'real' symptoms?" To this lady and to anyone else who wants a view into what living with Myasthenia Gravis looks like, I pen this response:
"Real" symptoms? What does that mean? Droopy eyelids sounds funny, I suppose...like something afflicting one of the dwarves in the story of Snow White, but it is very real and not very funny when you cannot open your eyes, no matter how hard you try. Breathing becomes a chore and during sleep, it stops altogether so you sleep with a facemask connected to a machine that keeps air constantly flowing...every.single.night. It gets "real" very quickly when you go to rise up out of bed, but can't because your neck is too weak to lift your head; your mouth drops open because you can't keep it closed; you try to smile, but your facial muscles are so weak, the smile never comes; phone calls not only take your voice away, but your very breath as well. "Real" is when taking a shower, brushing your teeth, drying and styling your hair AND getting dressed all in the same morning is a HUGE accomplishment, one which requires rest afterwards just to be able to do whatever it was that got you out of bed in the first place. It's being so weak your husband has to carry you to the bathroom in the middle of the night because your legs won't take you there; for some, it's walking into a store on what you thought was a good day, and having to be wheeled out because no matter how hard you will your muscles to keep your feet on solid ground, they just won't cooperate. It's blurred vision and double vision that takes away the joy you once had when reading; it's muscle weakness so severe in your arms and legs that you can lift nothing of any measurable weight, can take no more than a few steps at a time, and can no longer drive. It's being a ballroom dancer who sits in a wheelchair grieving over the loss of the ability to dance, yet having a heart that soars with happiness that your husband can still dance and you can live vicariously on the dance floor through friends who will still dance with him. It's knowing that because of extenuating circumstances, the only treatment available to you is a weekly IVIG infusion accessed via a port that has been surgically implanted into your chest, and then wondering if the next infusion is going to be a good batch or not, if there will be an adverse reaction, or if all will go smoothly. It's getting excited about having a power chair because it will bring back a little independence, and then being too weak to get in it and hold yourself upright enough to keep from melting and sliding right onto the floor. It's trying to eat, but not having the strength to chew; to swallow, but either choking unexpectedly or having it all...whether liquid or solid...come out of your nose. It's never knowing exactly when you'll turn the corner that lands you down into the respiratory crisis abyss (and the fear of being on a ventilator that comes with it), being susceptible to infection, questioning when exactly you should go to the hospital, and wondering once you get there, will they know what to do to save you? This is MY story, and oh yes, it is all too "real"! It is only through faith that my God is holding my hand through it all that I can fight.

Please keep me and all that are afflicted with Myasthenia Gravis in your prayers. And if you will, please help us spread awareness. Because with awareness, perhaps...one day...we will see a cure. #ihaveheardofmg

God bless you, I love you...
Kathie Lea