I found this out the weekend we moved into my Grandmothers house. It was February and we were afraid (and hoping) my debilitating, neurological issues were to blame on the small patch of mold that I cleaned a short time before.
We had no clue what we were looking at. Mold is nothing to be taken lightly. We were afraid to know how extensive the clean up might be. If the little bit of mold I cleaned was responsible for the symptoms I was suffering, I wasn't sure I would ever feel safe moving home again!
I could not justify spending a couple hundred dollars on concert tickets that, to be honest I didn't know if I would be alive to see.
Because, if it wasn't mold... then, what was it?
My mind of course went to the worst case scenario I could imagine.
My paternal grandmother died of brain cancer.
During this time of not knowing I was begging God constantly to just please, let me see my kids grow up. At least a little more. The helpless, nauseating terror was constant and inescapable. The worst part was watching the effects it had on my family. Seeing them trying hard for me. All of us working to keep the boys lives from being disrupted. I would catch a wave of that familiar terror wash over my moms face. Then there were the lingering hugs from my dad. David held me while I cried. We all were in a surreal existence waiting for our- my- opponent to be named. Waiting was agony. Worse than that, I believed fully in the term "scared to death" not just in the sense frightened suddenly and a heart stopped, but that cold terror ought to be capable of leaching away the life force and leaving nothing in its wake.
I have never been so relieved as I was when I heard that my doctor wanted to begin treating me for Multiple Sclerosis. There were no tumors. I didn't need brain surgery. It will take me until the end of a VERY long life to say thank you as many times as I have said please.
The relief was extremely short lived.
"So I hit my low, little did I know
That would not be the end..."
I spent the last three days of February in the hospital on intravenous steroids. I resisted the idea, but my Dr. said it might help the odds of a full recovery.
I might not recover fully??
I was twenty-seven years old with a husband and two boys under five... I wasn't functioning well. I wasn't driving. I was not confident being alone with the kids, I was afraid of falling. I couldn't trust my balance, my footing was unsure. Once I started getting off balance, I couldn't step quickly and right myself, I had to hope that there was something within reach to grab and steady myself. I managed not to every actually hit the floor. I came close. One night when I was carrying my two year old to the bathroom. Absolutely terrified me.
I might not fully recover?
Multiple Sclerosis literally means "many scars"... Brain damage. Scarring. Progressive. God give me strength.
I'm not sure if it was the steroids, being in a hospital, away from my snuggle buddies (co-sleeping isn't only for comforting the kids), beginning to attempt to get my brain around what exactly MS was... I hardly slept. I listened to Mumford & Sons constantly on my ear pods. My ears were sore from what sleeping I did- wearing the headphones. Their lyrics sang me through so much emotion.
I spent the entire hospital stay looking for the tiniest bit of improvement. My poor nerves. And my veins hated the steroids. I can remember, it felt like acid. Steroids raised my blood sugar, they gave me insulin. It was a nightmare. I just wanted to wake up.
"give me hope in the darkness that I will see the light cause oh they gave me such a fright
but I will hold on with all of my might just promise me that we'll be alright"
~ ghosts that we knew.
I began researching MS. Time since diagnosis and level of mobility were opening statements or signatures in the forums... I never in a million years expected to be dealing with anything like this!
I'm the "health nut" among my friends.
How long would I be mobile?!
Would I be attending the boys sporting events via wheelchair?Would homeschooling even be possible?
Multiple Sclerosis is hereditary.
I was devastated.
I felt like my husband and sons had been dealt a bad hand.
Bought a lemon.
They. Deserved. A. Refund.
It was such a helpless guilt. I felt like they would be better without me. I couldn't imagine watching my mom deal with a debilitating disease, slowly, or not so slowly loosing control. One of my great grandmothers had Alzheimer's. Diseases like these are torturous to the family of the person diagnosed.
"Well, I came home
Like a stone
And I fell heavy into your arms
These days of dust
Which we've known
Will blow away with this new sun"
~ i will wait
Mom and David conspired on the day I finally lost my composure fully and David took me to Saint Augustine overnight. He was wonderful. He reassured me of how much he loved me, that we were in this together and that he meant his vows. But, heaven help me. I didn't want "in sickness and in health" to be put to the test in year seven! In my mind I saw us living out our moderately healthy lives, maybe loosing a gallbladder along the way, or dealing with a car wreck or something else insignificant. My brain entertained the things I considered acceptable. MS wasn't part of the plan. Or acceptable.
"And I still believe though there's cracks you'll see
When I'm on my knees I'll still believe,
And when I've hit the ground, neither lost nor found,
If you'll believe in me, I'll still believe"
"So lead me back
Turn south from that place
And close my eyes to my recent disgrace
Cause you know my call
And we'll share my all
And our children come, they will hear me roar
So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold as long as you like
Just promise me that we'll be alright"
~Ghosts That We Knew
Slowly my vision and balance returned, sometime after I got home and finished my 10 days of oral steroids. I am back to my scrappy self. Taking everything a day at a time. I have had a couple of weeks since the first episode that I wasn't able to drive because of my vision. It cleared up with gentle attention for my symptoms and plenty of focusing on my emotional response to my physical symptoms. Things didn't get as bad as the original flare up. I still do emotional work. Sitting with the emotions I used to ignore or stuff on a mental shelf for another day. I am adhering to a strict diet outlined by a woman who has kept all of her MS symptoms in complete remission for nearly 20 years. I am living in gratitude and saying "no" when I need to. And daring to say "yes" even when I'm afraid.
"Stars hide your fires
These here are my desires
And I will give them up to you this time around
And so I'll be found
With my stake stuck in this ground
Marking the territory of this newly impassioned soul"
~Roll Away Your Stone
Mumford & Sons is the sound track to this year for me. The lyrics speak to me and have brought me to tears. So many of their songs talk about sight and eyes ...
David promised me that we would take a road trip next year when tour dates were announced. He knows how heartbroken I was that I wasn't able to get tickets with them so close to home... and I was the reason we missed out. If I hadn't been sick, we would have bought tickets immediately.
Fast forward to last month.
David called me from work to ask how I felt about going to see Mumford & Sons in concert.
In Louisiana. In September.
Someone GAVE him tickets.
WE. WERE. G I V E N. TICKETS.
To Mumford & Sons. In a state where we have friends to stay with near by.
I have dealt with the hardest, most emotional, gut wrenching situation of my life with Mumford & Sons in my ears....
It's pure magic.
I am in awe. Total AWE.
"Thank You" falls so miserably short of what my heart has to say to the person who - didn't know all of the history- and gifted us with this experience.
This weekend Mumford & Sons will be in Saint Augustine ... Monday night I will be watching them perform in Louisiana.
"So leave that click in my head And I wont remember the words that you said You brought me out from the cold Now how I long, I long to grow old." ~ Hopeless Wanderer
September 16. 2013.
I am going to get a t-shirt.