When They Told Me I Might Die

 So here I am, back at the U of M, finally in a room at like 2 in the morning.  My saving grace was that it was December, so I had new doctors once again.  And this time, they were GOOD.  I will never forget Dr. Paola Moretti.  He is the second doctor I credit with saving my life.  He looked me right in the eye and said, "We WILL figure out what's wrong with you."  And I totally believed him.  And he kept his word.

On December 9, 2000, my team of doctors walked into the room looking quite somber. I knew that at this point, none of the tests, bloodwork, LP's, EMG's, etc had come back positive. One negative after another.  Dr. Moretti said, "We have narrowed your condition down to 2 things:  one of them is Myasthenia Gravis, which is treatable, but there is no cure.  The other is a form of bulbar palsy that is degenerative and terminal."   

I just blinked.  I was 29 years old.  I had been married for about 14 weeks.  And I was just told I may be dying from a horrible, degenerative, debilitating disease.  I couldn't speak. And those who know me know I'm *never* at a loss for words. I couldn't even pray.  

And that's what scared me the most.  

Then the Lord led me to Romans 8:26-27. 

^"Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.  And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God." Romans 8:26-27 ESV

What a comfort!  I had been a Christian my whole life, but never before did I lack words to pray... Until now.  When I read this passage, when I understood that the very Holy Spirit of GOD, who lived in me, went before the throne of God on MY behalf; "with groanings too deep for words":  don't get me wrong, I was still very troubled... But I had a sense of peace that I didn't have before, because I knew somehow, God was going to take care of me.

Dr. Moretti said the best thing to do was to continue treating me as if I had Myasthenia Gravis (MG) because out of the two things I most likely had, it was the only one that was treatable. So if I responded to treatment, I had MG.  If I didn't I'd likely be dead in weeks to months.  Only time would tell.

I had a follow-up appointment for February, 2001.  When I got to that appointment, everyone was *shocked*.  I mean open-mouthed, calling nurses into the room, getting the head of the neurology department, Dr. Albers, into the room, shocked.  Dr. Albers told me there was no medical reason for me to be alive.  He said I was a true miracle.  Now coming from a "man of science", that was pretty impressive.  But then, God does that... Impresses people.  Usually when you are with a doctor, by the way,  you don't WANT to be impressive... but this time, it was awesome!

Dr. Moretti was thrilled.  Beyond thrilled.  What I didn't realize at the time, and didn't find out until a few years ago, was that my discharge papers read "Bulbar palsy" as the diagnosis upon discharge.  They didn't expect me to LIVE to see February, let alone be there, much improved, from the last time they saw me. 

So even though I did not have ONE positive test at this point, my diagnosis was Myasthenia Gravis.  It was the beginning of a new life, a life with an incurable, neuromuscular disease.  A new normal.  One that would lead to many ups and downs; many more miracles and "no medical reason" situations; and many, many prayers.  It was the prayer of God's faithful people and His grace and mercy that helped me live through my hospitalization.

My husband, through all of this, was amazing.  There is NO way I could have gotten through this without him.  Honey, you are truly my hero.   God blessed this man with everything he could possibly need to be my husband.  He was ingenious. When I got home around midnight two days before Christmas in 2000, none of my hospital equipment was there.  I was still on a feeding tube, and it was time for my next "meal."  The pump wasn't there. Doug grabs a fishing pole and sets up a gravity feed for me.  Amazing.

One time, when we were up in Escanaba (think Alaska but in northern Michigan; cold and remote!) visiting his parents, in the middle of winter, my suction machine quit working at about 2 A.M.  I *freaked*.  Doug calmly put on his Carharts (for those of you who don't know what Carharts are, think canvas covered snow pants...nothing gets through them, and every man who lives north of the Mason-Dixon line has some), went out to the truck, got his tool box and came back into the room.  He took apart my suction machine, studied some parts, then asked for the ear wire of an earring.  I was baffled to say the least.

He soldered the earring wire into the circuit board to make a connection where one had been broken.

{pausing for applause to die down}

The man is a ROCK star.

The sad fact is that 3 out of 4 marriages where one partner is chronically ill ends in divorce. That's 75%.  Might be even higher.  Doug stood by me...we had been married all of 6 weeks when I went to the U of M for the first time.  SO many men would have walked.  Not mine.  I'll be eternally grateful.