Presidential Muppets with Brain Lesions

I think that it has been well established that I am a complete geek. So none of you should be shocked to learn that I have a Presidents’ Day tradition. I marathon watch the West Wing and let myself believe—if only for a few brief hours—that I could live in the America of Josiah Bartlet as painted by the brilliant Aaron Sorkin.

You will now be granted a brief pause to make a single comment about my nerdishness.

Anyway… This year I watched the West Wing through a new lens. The MS lens.

Just to recap, it is revealed after President Bartlet is shot in the Season One cliffhanger that he has MS. This diagnosis is important for the anesthesiologist to be aware of as he preps the President for surgery. And that is the last we hear about it for a while until—and stay with me here—one of his senior policy advisers think something is fishy with the Vice President (who knows the President has MS and is not planning to run for a second term).

Still with me?

This year as I was watching the MS storyline unfold, I found it interesting to see the character’s reactions to hearing about President Bartlet’s MS.  At the time the show was on the air, The West Wing was both lauded and criticized for its portrayal of MS. But I hardly gave it a thought back then. It’s all different now.

Having once been pregnant, I am always skeptical when I hear a story about a woman who gave birth to a healthy baby while never having known she was pregnant. That gives me pause. I can’t imagine feeling someone playing football with my bladder going unnoticed. I can’t wrap my brain around someone feeling a fetus swimming around her stomach and NOT thinking that—at the very least—she probably should address that sensation with a doctor. I would certainly want some medicinal reassurance that my appendix hadn’t become sentient.

I feel the same way with the West Wing MS President. I just don’t buy it.

Aside—Yes, I am well aware that we are talking about a work of fiction. Written by one of the most gifted writers alive right now, but fiction nonetheless. But like all art, Sorkin’s writing can only be interpreted by me through my own experiences.

Back to the Bartlet administration.

The MS Society reports that four out of ten people with MS have either failed to disclose or outright lied about their diagnosis to friends, family, colleagues, and their employer.  The same study reported that 36 percent of MS patients feel it has a negative impact on their inter-personal relationships.

I’ve certainly noticed that it has impacted my relationships. So I will give President Bartlet a pass on this one. I get it. And no one—not even the President—is under any obligation to disclose their MS (or any other health conditions) to their employer.

Bartlet’s choice to not disclose his MS is not where I stumble. I have a hard time with his ability to manage both his MS and the business of the country.

Let me expound.

MS advocates loved that Sorkin gave MS to the President. They saw it as an endorsement that a person with MS can do anything.  Yay. Go MS peeps.

Except, I don’t buy it. The symptom that people with MS feel is most debilitating is fatigue. Extreme fatigue. Our country has seen President’s with disabilities before. FDR was in a wheelchair. JFK was in chronic back pain and needing medication and a brace. I don’t think Bartlet’s need for an occasional walking aid is any problem at all.

But the soul-crushing fatigue? That is where I think MS would defeat a President. POTUS has to spend 10 to 12 hours at work each day. No weekends off. No vacations away from responsibly. No time for a nap. I can barely make it through my 8 hour day without having to put my head on my desk because I don’t have the energy to keep holding it up.

Oh, and let’s not forget one of the things that exacerbates MS symptoms. Stress. But the President never has to deal with that, right? Yeah, I’m not buying it.

I think we should reboot some other TV series and give the main character MS. Then depict these characters with an accurate portrayal of life with MS. In Breaking Bad, let’s take away Walt’s cancer and give him MS. Trouble finds him when he falls asleep in his motor home, ruining his latest batch of Meth. Which is bad, because he needs the cash to pay for his Avonex.

Or maybe Ross would dump Rachel forever after her MS diagnosis because he doesn’t want to deal with a lifetime of disabilities. He has overlooked the benefits of being able to jump the lines at an amusement park or park close to the door at a sporting event. So the rest of the Friends series can follow Rachel as she navigates Manhattan with a cane, endlessly having first dates.

Or even a colorful, fluffy character on Sesame Street that just randomly falls down and can’t keep her hand from shooting forward and punching people. Actually, someone needs to make me that puppet. 

Just Be Cool

Today, I am battling a fatigue like I have never known. It is manifesting in real, tangible pain. I hurt.

I am too young to feel this old. I don’t remember what it feels like to wake up well rested. I don’t remember a time when my morning baseline feeling was rejuvenation. I know I used to be able to reap the benefits of a good night sleep. I remember that there was a time when I was able to function easily on very little sleep. I know there was a time in my life when I used to dance until 2:00 a.m. and get home in time for a shower before my 7:30 a.m. class.

I remember when I used to dance.

My fatigue is compounded with huge, life-altering stressors and a large dollop of dejection.  I’m not depressed. I know what depression feels like. I’m just plain-old-vanilla sad.

And I am so, so tired.

Over the last few months, I have partially blamed my exhaustion on the medication that is helping me sleep. Don’t you just love ironic medication? Those little green tablets don’t create authentic sleep. I don’t drift off into an REM state. I am shoved into unconsciousness. And the pills cause me to have a sleep-aid hangover in the mornings.

But, it is misplaced blame. I am so thankful for the sleep those pills provide. Because—otherwise—I hardly sleep at all. A groggy morning is a small price to pay to not have to check the clock, seeing that the hands have only moved from 2:09 a.m. to 2:21.

Nothing good ever happens at 3:17 a.m.

I wish I could feel rested. I wish I could find some energy. My work, my home, my relationships, my family. They all are suffering because of my exhaustion. My skating suffers too. When I put on my skates, I might as well start the timer. I have 50-70 minutes before I run out of gas. Mileage may vary.

I asked Dr. Google about my fatigue and I learned some interesting things. Lassitude is a type of fatigue unique to people with MS. Because MS is the gift that keeps on giving.

Here is what the good Dr. G taught me about lassitude:

• Generally occurs on a daily basis
• May occur early in the morning, even after a restful night’s sleep
• Tends to worsen as the day progresses
• Tends to be aggravated by heat and humidity
• Comes on easily and suddenly
• Is generally more severe than normal fatigue
• Is more likely to interfere with daily responsibilities

Well, damn. That sure seems to fit…

And this one lassitude fact was both very reassuring while being quite maddening: MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment. If that is the case, how do I fight it? Can it ever be conquered?

It appears that I am just going to have to figure out the most efficient way to be tired. But, I’m not going to take this fatigue shit lying down.

Ba-dum-bum-tiss

One of the things that I have noticed. My environmental temperature has a dramatic effect on my energy levels. Heat is my enemy. I can feel my body begin to revolt when I start to get overheated. The sun and I—already having a rocky relationship and a trial separation—have officially broken up. It was never meant to be. A pale, freckled redhead was never meant to be with a ball of fiery plasma. Maybe the sun found out I was getting my Vitamin D on the side... 

I will fight the heat. I’m ordering a cooling vest from Square 1 Gear that I will wear skating. From the same company, I’m going to order something they call a crown cooler, which is designed to fit in the hardhats of the construction workers suffering through a Utah summer. The crown cooler will also fit quite nicely in my derby helmet. These two things should help me get through the stifling hot summer spent skating circles at the Derby Depot.

I moved my bedroom to the significantly-cooler basement of my house. I installed a ceiling fan to move the air and provide the white noise that is so helpful when I sleep.

Aside--As an added bonus of moving my room, my amazing Kidlet got the big bedroom/New Orleans Saints mini-man cave.

I’m learning the wonderful art of dressing in layers. I have a tiny fan intermittently running at my desk. I’m making sure I am drinking so much water that I frequent the Ladies Room at least once every hour.

It’s funny how there are some themes in our lives that we can never escape. Mine seems to be this:

I just want to be cool.

For the Love of Words: MS Edition

There is plenty of Latin-based medical terminology that is now a part of my vocabulary, thanks to MS. The gift that keeps on giving. For example, I learned that the word sclerosis comes from Medieval Latin and means the hardening of a body part. But here is my question: Why can it never be my abs that suffer from sclerosis?

One of the lobes of the brain is called the Parietal, from Late Latin, meaning “pertaining to the wall of an organ.” I’m not sure why the Ancient Romans had need of such a word. But nevertheless, they had it. I’ve learned that one of the responsibilities of the brain’s Parietal Lobe is to tell us which way is up, which is important information. Especially when we need to pee. But apparently, those Latin brain walls are not the grand protective barriers of, say, the Great Wall of China. It seems my immune system has breached my brain walls quite handily.

I discovered a bunch of great words while I was Googling my symptoms. Dr. Google is always the most reliable way to arrive at a solid diagnosis and a treatment plan. The good Dr. G also helped me realize that I might have leprosy and possibly testicular cancer.

Here are some more big words for little MS symptoms:

You know that light you see in your eye when squish your eyes closed? It’s called phosphenes, and it is the phenomenon of seeing light without light actually entering the eye. It’s magical. For the first five minutes. Then, you hang blackout curtains, have people get in your bed to see if they can find the light’s source, and try various sleep masks. After that, you will find yourself spending a great deal of time with your eyes dilated or lying on your back and being shoved into an MRI machine.

Then there is the MS fatigue, marked by dysania (finding it extremely hard to get out of bed in the morning). This is not to be confused with clinomania (an obsession with bed rest). It isn’t a compulsion that keeps me in bed, it is genuine exhaustion coupled with medication hangover, which leaves me feeling more marcid (incredibly exhausted) than when I went to bed.

Aside—how much does it suck that they are changing the SAT? I spent so many hours learning words like the ones in these posts! Hours! Never mind that those words are of absolutely no value in my life and that I have not even thought of them--let alone used them--in 20-some-odd years. Stupid standardized testing.

I love the word yuputka. It’s from a Native American dialect and it has no English equivalent. It describes that phantom sensation you feel after walking through a spider web. The feeling of something crawling on your skin.

My hands experience yuputka, while my legs often suffer from obdormition (Pins and needles! Pins and needles!) As my body destroys my own myelin, my brain cicatrizes (heals by creating scarring) the damage. And these scars are what show up during an MRI.

Eunoia is a word describing the relationship a presenter builds with an audience.  But, it is also a medical term indicating a state of normal mental health, a well and beautiful mind. Are my days of eunoia behind me? Actually… Did I ever actually have days of eunoia? I’m not sure.  Can I blame that on MS? I’m not sure about that either, but I’m gonna. And I’ve seen pictures of my mind. Lesions or no… it is smokin’ hot.

Here’s a fun fact: eunoia is the shortest word in the English language containing all five vowels. We’ll take pretentious vocabulary for $600, Alex…

I’ve always been novaturient (seeking change in behavior or situation). I’ve always desired change, even if my ideas of what needed to change were nebulous and ill-defined. But there are two words--better word--that perfectly articulate my feelings about my MS diagnosis: quatervois (a crossroads, a turning point in your life.) and metanioa (a journey of changing your mind, heart, and self).

And this word has always captured my imagination: koyaanisqatsi. When I was in college, my photography professor screened the 1982 film titled Koyaanisqatsi: Life Out of Balance. If you ever get a chance—which will be difficult, as it is out of print and rare—see this film. There is no dialogue, just a wonderful Phillip Glass score over various rural and urban landscapes of America. Since seeing that movie, my own life’s balance has been something I consider from time to time. It is that meaningful of a film.

In the Hopi language, the word koyaanisqatsi means unbalanced life. A life so out of balance that you need a new way to live. I am trying to re-balance my life after a series of events that have sent me spinning. I think I’m getting closer. A little.

Stay tuned, readers! I’m working on For the Love of Words: Derby Edition

Fork Me... I'm Done

At least for tonight, I am.

I knew it would happen eventually. And it happened this evening.  I had a really shitty skate practice. I absolutely ran out of gas. I was deeply and profoundly exhausted. And my hand has been bothering me for the last couple days. But tonight, I experienced a very unpleasant burning sensation in that hand. Maybe it was because I was feeling overheated. Helmets sure do hold in the heat. Maybe it was because my arm was trussed up like a turkey in my elbow pad and wrist guard. Whatever the reason, I hurt.

And I cried.

I cried because this was the first time I have experienced MS issues since my initial diagnosis. At least, it was the first time I could connect some weirdness in my body with a reason it was happening. I cried because I simply couldn't do what I wanted to be doing. All I wanted was for my body to stay upright on skates for an hour. I really didn't think It was too much to ask. But, alas...

So I cried. I cried from frustration. I cried because I hated this new reality. And I felt very alone. My family was out of town. All the people that I usually lean on were out of reach tonight. Out living their lives.

You know who took care of me tonight? My warrior sisters at the Derby. They encourged me. They made sure I was OK. These wonderful women rubbed my shoulders, sat with me, and made me understand that I needed to listen to my body and take it easy. And they accomplished what I thought was impossible at that moment. They made me feel better. They made me laugh.

I'm very lucky to have this group of ladies in my life.

Borrowing Energy

One thing I have noticed in the past couple months is how tired I get. Not need-a-refreshing-afternoon-nap tired, but true fatigue. Now, I'm not sure that this is all because of the MS.  I've been bone tired well before my diagnosis. I am a single mom that works full time. Most working moms I know are exhausted.  But I have a feeling that the disease isn't helping my energy levels.

I can't really remember a time when I haven't had trouble sleeping. I can fall asleep in a matter of minutes, but staying asleep is difficult for me. And if I wake up in the middle of the night, going back to sleep is nearly impossible. My doctor has told me how important it is for me to get sleep. She also told me that MS might be the root cause of my insomnia. MS--the gift that keeps on giving. 

Lately, I feel like I lose my mojo really quickly. I notice this at skate practice. I'll be moving along fine one minute, and the next minute I will feel like someone pulled the stopper on the drain. I can feel the energy spinning away.

I think there are a couple reasons for this. The first one is totally on me. I am really out of shape. I work on my skating skills, endurance, and overall fitness every day. And I'm getting better, but I can't go from couch potato to mash 'em, bash 'em derby girl overnight. However, there are some other things that are affecting my energy level. The bright flash of light in my right eye--the one that originally drove me to the doctor--is still there. It makes it hard to sleep sometimes. And the medication I take makes me very tired, while simultaneously making sleep even more challenging. So, there are several forces sabotaging my energy levels.

Today at practice, we learned assists. Biz and the other coaches taught us Whips and Pushes, two of the most basic moves in Derby. The Push is exactly what you are picturing: a teammate skates behind you and shoves you forward to get you moving. When performing a Whip, a teammate extends her hand behind her. You grab her arm, and while you pull yourself, she swings you around her and shoots you forward like you are a rock in a slingshot. It's pretty fun, actually.

The great thing about these assists is that, in essence, you are borrowing someone else's energy. You are able to leverage your teammate's momentum to move forward. While we were practicing these moves, it occurred to me that I couldn't think of many other sports where someone else can boost you forward. In most other sports, while you are working as a team to accomplish a task, you  rarely are able to literally draw strength and power from another member of your team.  That is one thing that makes Derby so special.

It did occur to me later today how that is a life lesson we should all learn. Giving your all to something is great. Working together makes things easier. But being able to rely on the people on your team--your friends, family, loved ones--to give you an assist when you need it is a truly special thing. To be able to fill your life with people that can whip you around the obstacles in front of you, when you just can't do it yourself, is something amazing. 

Thanks for the Push, Derby team. Thanks for the Whip, Life team.

Fresh Meat? I'm Ground Beef

I had Derby training today. Remember, back in the day, spending an afternoon skating around the rink with the lights flashing while they played YMCA? Yeah, this isn't that.

This was my second Fresh Meat training session. We skate Wednesdays and Saturdays. Last Wednesday was challenging. An hour on skates with the rest of the rookies, followed by an hour of strength and cardio training with the entire team. On Saturdays, we start with the off-skate workout.

I missed the first Saturday session, so I didn't know that the hour one training would make my hour two training--the on-skate hour--even more difficult for me. I did not do well. My legs were shaky and tired. My right hand started getting this tremor that did nothing to help my balance. (The hand tremor is a result of the MS meds. It usually occurs about 48 hours after the shot. The shaky legs are a result of me being woefully out of shape.)

I stink. And I don't mean I am bad at skating, which I am. I mean that this t-shirt I am wearing would mask the stench of Limburger cheese. But, yes, I am still bad at skating. Here is my four-point plan to improve:

1. Skate in the park with Sara a couple times a week. Make her literally skate circles around me.

2. Work on my core strength by planking at random points in the day. I apologize in advance to my coworkers.

3. Go to the roller rink to practice my crossovers and practice my subsequent falls. Watch the second graders deftly avoid my sprawled body while YMCA plays. Yes, they still play that.

4. Slowly transition the time I take my shot, so I give it to myself after my Wednesday practice. I can sit and shake in my cube at work. My tremor-filled typing will make for some interesting copy editing.

As I am typing this, I am feeling exhausted and sore. And happy and pleased. For the first Saturday since I started the Avonex, I am tired and sore for amazing reasons. I'm Fresh Meat.