TWENTY YEARS

I’ve had MS longer than I haven’t had MS. It’s so strange to try to remember what life was like before I had MS. In fact, I had small episodes when I was a junior in high school. I was a really crappy volleyball player, but it sure was fun. :) (Vision, hearing, nausea, dizziness, and intestinal issues came and went, but didn’t become permanent issues until a few years later).

It’s been almost 5 years since I’ve been able to go outside more than once a week without big issues. 

4 years since my intense stabbing pains (occipital & trigeminal neuralgias and thyroid issues) and some of my worst MS exacerbations. 

3 years since we had no jobs and moved many times. 

2 years since I had so little hope and help and then was flooded with love, support, and strength from others like the windows of Heaven were opened and there wasn’t room enough to hold it all. 

1 year since my failed minor brain surgery, anesthesia dolorosa, and Mike’s surgery (+ 4 days hospitalization for both of us). 

And I finally feel like most days I’m okay with the new normal. Last year when I was told to just take aspirin for my constant burning lips, stinging tongue, sensations of bugs crawling under my skin, hot poker stabbing my eye, electrocution, hot coal near the incision point, an ice pick down my ear, yanking out my jaw, kicking in my front teeth, swelling, fever, cough, and a few times of passing out or getting close, I truly thought I couldn’t live through it. I prayed every minute of every day-literally. At first it was to survive, to make the pain go away, to just get through that minute. In the beginning it was about not dying. Then it became begging for a reason to live. I couldn’t see living another minute, let alone another YEAR. The fear and depression I had when I was 19 and thought I was going blind and deaf pales in comparison to the fear and depression I had as my neurosurgeon said they had missed V1 and walked away. It intensified when I met for the follow up. He said my nerves were so, so, so badly damaged, I needed to go to the ER immediately, and there was no other surgery they could do for me. There was simply nothing left for them to do to help me at all.

I used to dream big. And I accomplished most of those dreams. Travel the world. Serve others. Get a range of education. Help children. 

And then I started dreaming small. Eventually I simply stopped dreaming. I might as well have become the leader of the zombie apocalypse minus the brain eating. 

I thought I’d focus on accepting that I’m extremely limited and to only dream tiny dreams in increments the size of a tick. Did I mention I used to tick when my pain was bad?

Anyway, acceptance to me in this case for the last few months was in a sense giving up and trying to be okay with it. Dream less. Do more simply. Until I just stopped dreaming.

But when I stopped dreaming, I stopped living. 

What I needed wasn’t to learn to be okay with little to no dreams. I didn’t ONLY need heavenly grace to make everyone else okay despite my limitations. I thought this year I would accept new challenges and accept the new me, while saying goodbye to the old me in almost every way. I thought I’d pray for interventions in everyone else’s lives and let myself off the hook of perfectionism. If I repeated enough, "I'm okay," eventually I'd believe it. Magically after a year I’d be more okay with an empty version of me. It was like I realized I’m so much “smaller” than I used to be and was trying to change out the full size mirror for an itty bitty hand held one. 

But the more I prayed (still a work in progress), the more I realized I was focusing on all the wrong things. 

Some say “GRACE” is synonymous with “DIVINE POWER.” The scripture that has come to me over and over has been, “Pray always and be BELIEVING.” {“pray always, and be believing, and all things shall work together for your good,” Doctrine & Covenants 90:24.} I was trying to tell God that I give up all my power and essentially just give up. In time I realized it was Satan's plan, not God's. Instead of dreaming big, then small, then not at all, I simply had to learn how to dream differently.

You never really get used to the pain. But, you get used to dealing with the pain in a sense. It's like someone hands you a 50 pound bag of burning coals. You carry them in any way possible (some on the face, in the mouth, on the lips, heart, etc). The burn still hurts. It is still there begging for attention. Smiling, laughing, talking, moving-they all hurt. But it's worth the hurt to push through. You learn to find things to smile about, laugh with someone, and talk through the pain. Eventually you find that the coals haven't left, but that you have found how to live with them. Some people find empowerment by walking on hot coals for a few seconds. I suppose my anesthesia dolorosa has given me that opportunity in massive ways. I flinch less, focus more, and have learned a great deal. Trigeminal, occipital, and geniculate neuralgias come and go. You never really know when they will come. But AD has given me the chance to always be prepared. It has taught me to simplify in a bigger way than MS has most of my life. Humility, a reliance on God, seeking out the small joys in life, finding my own strength, living when it would be easier to die, peace amidst the raging storms, and so much more have been just some of the "things <that> shall work together for <my> good." If there was a way to get rid of my AD/TN/ON/GN/MS, I'd give it up in a second!!! But, if I can't, I'm grateful that I've found strength to persevere nonetheless.

A very, very dear friend of mine passed away recently. I'm not ready yet to talk much about her, but I can say that she taught me a GREAT DEAL about service. "Empathy during agony is a portion of divinity." (Neal A. Maxwell)  One of my greatest "pain relievers," has been service and simple acts of love to others. I'm NOT saying I'm divine or even good at serving like my friend was at all. AT ALLLLLLL. In fact, I've felt quite selfish the last 5 years. But, she was an incredible example of Christ-like service. It may take me a lifetime to get to her level! If I could be at her funeral tomorrow, it would be what I'd tell her one more time.

Everything in mortality is to get us closer to divinity. EVEN pain. Maybe especially pain. It comes in all forms. It can make us better or bitter. Simply knowing my dear friend Rebecca made me better. Being like her will make me even better. Looking to Christ, asking God for strength through the fire, and allowing the refining process to change me is what will help me not just barely survive, but to eventually learn to thrive.