Lightning and Landmines

I read once that most people with MS never “accept” it any more than you would accept an electrical storm that causes lightning bolts to strike your home repeatedly and unexpectedly for the rest of your life. Until I read that statement I couldn’t figure out why acceptance had been so elusive.

I read that in some guide on how to deal with a diagnosis of Multiple Sclerosis or another well over 2 years ago but it’s still the most accurate description I have seen before or since. I’ve had to redefine what acceptance means to me and I think I finally have but it’s not been easy.

Education’s been key to my survival these last few years. Had I known I was going to understand this much medical jargon and know THIS much about procedures and treatments I would have gone to medical school. But alas, hindsight being what it is I’ve had to settle on educating myself and surrounding myself with genius doctors whose arsenals against MS, Fibromyalgia, and Sjogren’s Syndrome are VAST and include things like the ever obscure quality of empathy for their patients, positivity, and a willingness to admit that they are NOT, in fact, omniscient.

It’s been suggested that those of us living with MS work to “find a place for MS while keeping MS in it’s place” much like an uninvited and unwanted guest, but for me the struggle hasn’t been with finding a place for MS in my life. Not judging my feelings but giving myself permission to feel how I feel has been the truest test and has often caused the line between adaptation and full surrender to blur and thin. For me that's what acceptance is...adapting without giving up.

On the road to accepting my diagnosis I’ve had to run through a minefield of emotion. Periodically on this trek I’ve tripped over frustration, anger, and grief…I’ve gone headlong through anxiety and resentment…and more than once I’ve run full speed into the unknown drenched with sweat and overwhelmed by the journey itself. While I'm sure this is a process that will continue I'm equally convinced that even if I happen to step on a landmine or two they WILL NOT slay me.

Redefining Me

The person I always thought I'd be died the day I heard the words, "You have MS."

Now don't get me wrong...I had no delusions of grandeur. I wasn't going to set the world on fire, write the next great American novel, or discover the cure for cancer, but I WAS going to live a "normal" life and face the same challenges that everyone else in America faces. I fully planned on working two or sometimes three jobs in order to pay my bills and provide a stable financial environment for my son.

There are everyday experiences that are accepted as absolutes.

Barring some kind of accident it never occurred to me that I would wake up and just not know if my legs would cooperate, that I might not be able to see from day to day, or that showering would prove a mighty enough task to fell me.

My MS has changed, has robbed me, of all of those "absolutes".

After my diagnosis I lived in a rehabilitation facility for a couple of weeks to learn how to walk, talk, bathe, and use my assisstive devices. I had difficulty writing (which is still a challenge), thinking, and caring for my most basic of needs like feeding myself (my mother still cuts my meat a lot of the time). The cognitive dysfunction for me has been the hardest to get used to, and the most damaging to my self esteem.

The challenges I now face are many and varied but they've forced me to slow down and focus on the aspects of my life that were being ignored...my son/family and health.

I don't know if I'll ever truly be able to bury her, or that I'd want to, but I AM learning to cope with the loss of the woman I thought I'd be and embracing the woman I know I still am.

I'll Take Brainfarts for $1000 Alex....

Alex Trebek and I have had an incredibly steamy love affair for many years...mostly in my mind. I faithfully watch Jeopardy! and excitedly answer questions all the while making googly eyes at him. In my head Alex and I banter back and forth and during commercial breaks I often find myself imagining myself on the set.

Today.....Alex and I were having communication problems.

See...more often than I'd like to admit my mind goes on the fritz...up is down...left is right...words get jumbled and fail to connect no matter how many times repeated.

I stared at Alex as he read clue after clue and wondered if it were possible that my brain had been reprogrammed to Chinese without my knowledge. He asked about Billy Ray's old hairstyle that was "business in the front...party in the back" and all I could do was open and close my mouth silently while my 7 year old son shouted out "What is the mullet?"

That was the high point of my Jeopardy! watching today. The downward spiral continued well into Double and Final Jeopardy! and by the end of the 30 minute show Alex and I were no longer on speaking terms.

I learned today that communication really is key in any relationship...real or imagined...and that mental flatulence is NOT sexy!