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!

Read Death....Really????

Sitting in these outpatient infusion rooms getting pumped full of toxins isn't how I like to spend my days but as I look around at the people, with their head scarves and eyebrow-less faces, that file in and out throughout the day I feel lucky.

I used to think that chemotherapy was chemotherapy. That there were different drugs for different diseases but that they all made your stomach lurch and hair fall out. Imagine my surprise to find out all of the subtle intricacies of how chemo works and why some side effects aren't as universal as I once thought.

It should be noted that I am in no way a chemo expert but I try to pay attention to the patients around me with their IV bags of "life saving" medicine. It strikes me as supremely odd that medications that are supposed to make a positive impact on your health seem to have the worst nicknames...Red Death?? Really?

When I come in for my infusions I sometimes have to wait hours while my chemotherapy drug is being "mixed". At first this didn't make sense to me. I come from a non-chemo world where IV drugs are mixed up, put into IV bags, shipped, and stored. Apparently this is not the case in chemo world.

There was one day when I was waiting for what seemed like hours upon hours for the pharmacy to mix my chemo so I finally asked my nurse why it was taking so long. I had heard from a friend, a nursing student, that during one of her classes she had seen the gloves that the pharmacist had to use when dealing with chemotherapy drugs and that they were no joke but nothing prepared me for what my nurse told me. This treatment that I'm getting...that all of us in this infusion center are getting...is so potent that when it's being mixed the pharmacist is wearing what can most accurately be described as a HazMat suit.

Why the precautions, you might ask?? Chemical burns. The stuff can't even be inhaled without leaving a wake of destruction. The more potent drugs can eat through the plastic IV bags (hence the maid-to-order chemo).

So that's what's making its way into me as I type this but I feel lucky. I tell Robbie all the time that my MS/chemo isn't going to kill me...life will simply be more challenging.

I feel lucky because I have something that so many of the other patients here don't....a future.

My Truth

I often feel like a bad mother.

Now I know that these days it's not so uncommon for a woman to admit to those feelings but knowing that it's not such a taboo subject as it once was doesn't make me any less guilty over feeling that way.

I don't feel I'm a bad mother because I don't make enough time for my son, or because I don't feel I love him enough. I've never experienced a moment, however fleeting, of confusion about his role in my life or why I was put here.

I was meant to mother THIS child. I am more sure of that than I have ever been about anything in my life. But as sure as I am that Robbie was meant to be mine...I'm equally convinced that this kid is getting a raw deal.

Is it wrong to wish that he be spared the realities of a mother who's ill?

Legal Disclaimer.....just kidding!

So...it occurred to me as I was showering today (a feat that can drain me so thoroughly that it should qualify as an Olympic event) that if you haven't lived with someone with MS you might not understand why the simplest of things prove themselves to be exhausting, or how someone might say that their limbs are simultaneously numb and in pain, or why the phrase "You don't look sick..." might incite a riot.

I'm going to trust that when I talk about some of my experiences you'll understand that I'm not complaining about my lot in life, adopting a negative outlook, or doing anything other than sharing and venting.

Why attach that disclaimer?? Simply put....because it seems that any time someone who doesn't know me well hears me speak of these things...hears me rant about the frustration I feel when I can't see out of one eye for no doggone reason other than because that happened to be the way the chips fell on that particular day...reads something I've written in which I've grumbled even mildly...it gets turned into my being pessimistic about my illnesses and thereby making them worse.

Can I trust that with the aforementioned caveat in place I can type freely?? I certainly hope so otherwise this little blogging experiment is quite thoroughly useless...

Let the wild rumpus begin!!!

Moments

(When you have MS you never know what will expire next.)

As I come up on the anniversary of that life changing day when my body stopped being my own I've found myself replaying key moments in the last 3 years.

There was the day I woke up with a headache and blurred vision and decided to take it seriously and the day my neuro-opthamologist called to tell me he thought I had a brain tumor. There was the soul crushing moment when a man I barely knew told me I had Multiple Sclerosis. There have been times when control over my body has completely eluded me and times when things are a little less dire.

More often than not these events have been punctuated by intense emotion...grief, sorrow, frustration, fear, and more recently resolve.

I have resolved to not give in to the sometimes overwhelming desperation that has haunted me since my diagnosis. The grief I've felt over the last 3 years has ebbed and flowed and ebbed again. The frustration and fear that have become my constant companions on this journey to wellness are now serving as a catalyst and motivation to reach out to others in similar situations.

This stranger in my body will not steal any more moments from me...