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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.
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!
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.
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!!!
