Challenged by definition

This morning, Rick Santorum’s spokesperson Hogan Gidley was interviewed on MSNBC. He announced that Santorum was making an “impromptu” stop on the Supreme Court steps to make remarks about the Affordable Care Act case, which is being argued this week. Here is my question: Is it an impromptu stop if you plan it and announce it to the media hours before it happens?

Call me a stickler, but if your job is to speak out loud in front of microphones, perhaps you should work on your vocabulary or avoid words of which you are unsure.

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Roving lazy eye of Newt

Newt, Newt, Newt. Living in Charlotte, North Carolina on the border with the northern suburban areas of South Carolina, we were inundated with TV ads for the Republican primary last week. The whole ordeal was top of mind. It was unavoidable.

I will just say it. I do not like Newt Gingrich. I do not agree with the lion’s share of his political and philosophical stances. One would expect that. I am an unabashed liberal with some pragmatism sprinkled in here and there. My primary problem with Newt is that he is a narcissistic coward. He left not one but two marriages when the spouse got sick. If I had sons, this is the person I would point to for an example of how NOT to behave like a man.

He married Jackie, his high school geometry teacher, and left her during her cancer treatment. This divorce was to marry Marianne, a woman he with whom he was having an affair. He left his second wife Marianne not long after her diagnosis with multiple sclerosis to marry Callista, his staffer with whom he had been having a lengthy affair. I hope for Callista’s sake that she got her flu shot because Newt now has a whole national organization of eager campaign staffers from which to choose a new Mrs. Gingrich.

I understand that I am overly sensitive to the topic of a spouse leaving behind a spouse with MS because life with it is a hard row to hoe. I can honestly say that I understand how it could happen. Chronic disease and the havoc it can wreak on the intricacies of a marriage are not always apparent to outside observers. I am profoundly lucky, and every day I am grateful for the fact that my very exceptional husband did not bolt the afternoon we found out that I have MS. I am fortunate for every day since then. He has stayed. We have gotten through this together, not as a couple battling a horrid disease, but simply as a family living within the new normal that the universe has dealt us.

But, as Newt has demonstrated by speech and action, he is different. He cannot be content with the normal, especially if it involves hard work for the benefit of someone other than himself and work that is not part of making him look like the smartest guy in the room. A sick wife would flaw that perfect picture he seems to have in his head of his Destiny. He is not like the rest of us. He is above it all. The rules he tells us that the rest of us should follow pertaining to marriage, family, and fidelity do not apply to him.

All the while Newt presumes to pronounce to others that marriage is only for straight people because he knows all about the sanctity of the union. After all, he has done it over and over again, at least until things became inconvenient and it looked like marriage might involve some selfless work on his part.

I how know to do it, not

When my niece was a toddler, if an adult tried to assist her with a task she wanted to do on her own, she would hold up her hand as if to stop traffic and exclaim in an authoritative voice, “I how know to do it!” I seem to have become a toddler at the ripe age of 47.

Slowly, since my diagnosis with MS in 2005, I have had to come to terms with ways the disease limits my abilities, both physical and mental. I have adapted to the sometimes bone crushing fatigue. I endure pain, which is always there and sometimes extreme. I understand that I cannot hold up to large amounts of physical activity, instead learning to do exercise or other tasks in bite-sized increments. I have learned that heat can be crippling because it short circuits the electrical signals that travel over frayed nerves stripped of the myelin. I know that my brain does not work as quickly as it once did. I am a compulsively self-reliant person; however, I have learned to make adjustments. None of that means that I am happy with these limitations, but it is what it is.

Now, I have a new enemy of my physical independence: spondylolisthesis. A vertebra has slipped out of place in my spine, most probably the result of some unrealized injury in my childhood or teen years coming back to haunt me. An old stress fracture put the bone askew, and it finally became unstable. For a person who is resigned to physical limitations and the ongoing degeneration that can come with MS, I must admit that a slipped vertebra is kicking my ass.

I thought I had this disability thing down.  You know what I am talking about —  the whole  managing pain, exhaustion, embarrassment, and reliance on other people stuff. But now, I cannot walk across the house without agonizing episodes of pain shooting down my legs. I cannot bend over. I cannot lift anything. I am worn out from sleeplessness. I am foggy from drugs meant to alleviate the worst of the signals emanating from the nerve roots under pressure from the offending bone.  I am finding myself needing a helping hand from those caring family and friends around me. I admit it: I cannot do this on my own.

Life, as it is wont to do, is once again teaching me that I have lessons to learn. I only thought that I how know to do it.

Daddy’s little sports fan

Daddy in his college days at College of the Ozarks

January 15th would have been my Daddy’s 84th birthday. (Yes, I am a grown woman who still refers to her father as “Daddy” and am proud of it. If you had met him, you would understand it. Just take my word for it.)  He died in the spring of 2010. His absence in my life has left a hole that time will make easier to step around. The hole is still there, I know how to avoid it on most days and when I do step in it, it is not the fresh shock of pain that it was two years ago.

Daddy was a huge sports fan. He’d played football in college in Arkansas. He was able to go to college because of a football scholarship. He taught high school and coached sports for decades. He had coached football, basketball, and track. He had even coached a football team to a state championship in Texas in the 1950s. Long after he had moved from the sidelines to the guidance counselor’s office, he remained an avid sports fan.

I remember going to all kinds of games with him  over the years — Arkansas Razorbacks football, Dallas Cowboys, all kinds of basketball games. I still wish I could pick up the phone and call him to talk about the Razorbacks giving especially harsh trouncing to an SEC rival in a basketball game or bemoan a particularly bad call by a referee in an NFL game. Even though I have never been athletically inclined or talented, I do love a good basketball or football game. Those who know me well realize that being in the same room with me during an Arkansas game during the NCAA tournament in March is a risk to your eardrums. I tend to try to give coaching advice through the television, and I do so loudly with an extreme level of enthusiasm.

When I was a toddler, I would sit on my Dad’s lap when he sat in his recliner.  I loved to sit there when Daddy would watch TV and nod off to “rest his eyes.” I remember I loved leaning my head back on his shoulder and listening to his rumbling snore. We would watch games on Saturdays and Sundays. He would bounce me on his knee and say, “How did you like that play, my little sports fan?” Exasperated, I would exclaim back with my pronounced childhood lisp, “I’m not a ports pan!! I’m Mary!”

Silly me. I did not know at that young age that I was Daddy’s little sports fan. I still am.

It’s broke, so fix it!

My spine with L5-S1 spondylolisthesis

I suppose it is validation that I need to get my back fixed when the best thing to happen to me in a while is that I found out today that a good friend was able to talk to our mutual back neurosurgeon’s office and get me an appointment 2 weeks sooner than expected. When you look forward to a painful procedure, it gives some face validity to the seriousness of it that you are willing to go through pain to repair the damage. The conservative and intermediate treatments did not work. Time to go nuclear on the slipped vertebra in my spine! The errant bone is sitting on some nerve roots, and I cannot afford any more nerve damage than I already have.

In the meantime, I need to scramble to get my MS neurologist in touch with the spinal neurosurgeon to talk about my case. Then there is the litany of specialists — pulmonologist, allergist/immunologist, primary care doctor, etc. — to contact.  And, there are files and films to send a doctor for a second opinion. This should be a fun week of being on hold and waiting for call backs. All of this done while trying to work full time, being unable to sit comfortably for more than a few minutes at a time, and being unable to concentrate on much of anything because my back hurts.

With all of this, I am conscious of one overwhelming thought that should really not have to cross my mind in a civilized, industrial society:  thank goodness I have good health insurance to pay for all of this! I do not know how those not as fortunate as I in that respect get through much more serious things with the burden of insufficient or non-existent coverage in addition to the stresses of working through an illness.  I am not sure why our nation allows such a shameful situation to continue.

Mouse juicing

From 27 December 2011: Today is infusion day. Raining like hell outside, so the drive down to the infusion center should be an adventure. Once every four weeks, I spend an afternoon getting an IV full of mouse juice. I am treated for MS with Tysabri, a.k.a. Natalizumab, which is a monoclonal antibody agent that acts to inhibit immune cells’ ability to pass through the gut and blood-brain barrier. This keeps my own immune system from feasting on the myelin insulation sheath around my brain and spine.
Monoclonal antibodies are a class of biological agents administered to help the immune system do or not do specific business in the body. Some monoclonals kill cancer cells, some help minimize the rejection of transplanted organs, and some tamp down over-achieving immune systems that eat healthy parts of the body, like brains. Brains! Brains!

Mouse juice, you ask, with a tip of the head not unlike that of a quizzical golden retriever? Monoclonal antibodies are generated in several different ways. Tysabri is considered a “humanized” monoclonal. Protein sequences from non-human sources, such as a rats and mice, are combined with human protein sequences in a lab to make a humanized monoclonal antibody. The good folks that make Tysabri mix a bit of mouse with a bit of human, and voilà: a fine IV bag full of Chateau la Souricière! With that and a bit of luck, for 28 days my zombie immune system will not use my noggin as a chew toy.

My happy place

I believe that having a happy place is a fantastic defense mechanism. Face it, there are time when the world is a monster, as REM has told us in song. One does not need to have a horrible life to need a happy place as an escape hatch from reality deep in one’s psyche.

My happy place is Venezia, La Serenissima, Bride of the Sea. I had wanted to go to Venice for as long as I could remember, one of those “One day, when I grow up, I am gonna…” ideas you carry with you from childhood. In late 2005, ten minutes after I was diagnosed with MS and that scream/sob that lasts moments but goes in slow motion and seems like hours had stopped, I grabbed my husband by the shoulders and said, “We are going to Italy this year. I will see Venice while I can still walk.” So let it be written, so let it be done. We were in Venice the next fall. The city lived up to my hopes and vision in my mind’s eye. We have been back two more times. We hope to go again.

But, if we never are able to go back to Venezia, I still have it in my head. On the worst days, be they filled with emotion, stress, physical pain, exhaustion, or just plain craziness, I can go there. I go to the best part of the journey. The anticipation of being on the Trenitalia train, gliding along the tracks over the lagoon across the narrow, three mile railroad bridge that links Venice to the mainland. The sun shines a late fall glow of pink and silver flecks across the water, and through a slight mist The Most Serene One appears. I am headed to my happy place.