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Yes, I Take the Elevator and No, I'm Not Sorry About It

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I want to justify myself.

I want to scream because I shouldn’t have to justify myself.

Instead, I wait for lobbies to empty or slip into elevators right before they close. It’s easier than dealing with stares and side glances. The slim slivers of judgment, thin as a fingernail moon. She should really take the stairs, I imagine them saying, their advice ripped from the slick pages of Men’s Fitness and Shape.

How do I explain it? How do I tell them that there’s a difference between the exhaustion they feel after a long week and “multiple sclerosis (MS) fatigue?” Do they want to know about the dull stiffness that falls over me like a heavy woolen blanket? Do they care that some weeks the malaise of mind and body knocks me flat? I wish they knew about the hurt that radiates from bones and the tingling in the bottom of my feet, MS’s little calling card — the one that reminds me that, no matter how good I feel, the assassin in my spine hasn’t gone anywhere in the 12 years since I was diagnosed.

It’s difficult to help people who don’t have a chronic illness understand what life is like with one. Their bodies are still allies after all, not enemies. They’ve never been betrayed by their own immune system. But for the ones who want to learn, I tell them, “It’s a lot like ‘Mortal Kombat.’

Gen Xers, those of us who spent our tender, nascent years in arcades and in front of game consoles, get the joke immediately. Younger folks usually do too, but there are a few who stare at me, needing further explanation. “I have only so much energy to use each day, and I have to decide wisely where to spend it,” I say. “It’s like watching the health bar on a fighting game.”

For those of you who never sacrificed your allowance, quarter by precious quarter, to the voracious belly of a coin-op machine, “Mortal Kombat” was the consummation of all things gaming. With its five-button control scheme and blood-soaked finishing moves, it was vital to those of us who prowled the mall in the late ’80s and early ’90s. A way for the less athletically inclined to show dominance and carve out a place in a social hierarchy of our own design.

Each Saturday, we’d line quarters up on the lip of the screen, our initials inscribed on each with a black Sharpie stowed behind the machine. (Currency defacement laws be damned. This was serious business.) Then — like crocodiles — we’d wait, killing time on other, lesser games, until our coins moved to the front of the queue. And for a few precious minutes, whether we were Liu Kang, Raiden, Scorpion, or Sonya Blade, we would curse, thrash, and combo ourselves into a frenzy, all the while keeping our eyes on that precious red and green health bar that decided whether we were fodder for another fatality or had won the round.

Today, it’s not roundhouse kicks or lightning bolts that reduce my life force to zilch. More mundane tasks are usually to blame.

Running to finish a project on time sucks a little away. Walking across a parking lot baking in the Georgia sun costs me some, too. Long days. Waiting in line. Poor sleep. Stress. They all exact a price. For many years, I could run myself ragged and recharge at home, but these days I need to still be in the green when I cross the threshold of Casa de Hughes. Why? I have a husband and two precocious boys we’re adopting from the foster care system to take care of. It’s a second full-time job, and it’s just as demanding (if not more so) than the one where I earn my cheddar each month.

If skipping the stairs means I’ll still have the energy to cook a decent meal or play outside with them, so be it. A few stares are worth it if I still feel like myself at day’s end.

So yeah, I take the elevator. And no, I’m not sorry about it. It’s not a game. It’s my life.

And I’m going to win.

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What ‘Second Wind’ Means to Me as a Person With Multiple Sclerosis

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Think back to when you were 8 years old. What did you consider awesome back then? And how does that compare to what you consider awesome now?

Certain words or phrases take on different meanings as one journeys through life. I started thinking about this the other day when I told my wife I needed to find my second wind.

When I was in high school, having a second wind usually referred to finding the energy to struggle through another twice-a-day football practice that dominated my month of August.

In college, finding a second wind might have been referenced when I forced myself to stay awake while studying for finals.

Years later, married and striving for success in my career, what defined discovering a second wind had once again transformed. I often left home at 7 a.m. for work and didn’t return until around 10 p.m. I was tired after a long day at the office, followed by an evening class in graduate school, but I still needed to muster up the energy to study for a couple hours before starting the cycle again the following day.

Trolling for Energy

Fast forward to 2016, more specifically a few days ago, when I uttered the phrase second wind to my wife. I was using it to describe the energy I was hoping to find to go take part in a family activity. But unlike in years past, I wasn’t exhausted from studying late into the night or running wind sprints in the unforgiving heat of August.

Instead, I was lying in bed, tired from taking a shower and shaving my face, and I was struggling to find the strength to get up and go to lunch with my family.

In that moment, it dawned on me: The phrase “second wind” can describe pretty much every moment of every day for most of us living with multiple sclerosis (MS).

On any day, by mid-morning, I’ve already had to dig deep for a fourth or fifth wind. And although I’ve never tracked it, I’d wager that most days involve at least a dozen instances of finding yet another wind.

My wife understands this, as do our children — to the extent that children can process the struggles with my health and energy level.

At times, it can be hard to accept — I miss what it feels like to have energy in reserve. In my best moments, I’m present and able to focus on the moment at hand until I’m stung by a sudden waive of fatigue. I can literally feel the energy leave my body.

I can almost envision a troll-like figure, waddling up to me, laughing hysterically — exposing its decaying teeth. It wears a shirt that obnoxiously reads “Mojo Stealer,” and it merrily sticks a needle in me to sap out all of my energy.

Awesome Sauce

Thirty years ago, the list of things I considered awesome probably included fireflies, the Atari 2600 and the movie “Back to the Future.”

Life has changed a lot since then, and in 2045, I’m sure I’ll look back with fondness on the things I considered awesome in 2015.

With a few exceptions, of course. For example, you know what would be awesome?

• Waking up one morning and not already being tired.

• Spending time with my children without struggling to keep my eyes open.

• Standing, for more than a few minutes, without feeling shooting pains in legs.

• Actually looking forward to a holiday celebration or one of my children’s birthdays, instead of fearing I won’t have the energy to enjoy it.

• Losing the guilt I have from seeing my wife do more to support our family because of my disease.

• Having a day — even just half a day — go by that doesn’t require me to find a second wind.

Those definitions of awesome will stand the test of time.

Unfortunately, I’m getting tired just thinking about it, so please excuse me while I go fetch myself another wind. It’s going to be awesome!

Follow this journey on A Life Less Traveled.

Lead photo source: Thinkstock Images

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What My Nights With Multiple Sclerosis Are Like by the Hour

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So what are my nights with multiple sclerosis (MS) like? It’s basically the same as the day but only darker, literally and figuratively. But the darkness amplifies it all and turns up my pain and discomfort up by at least 50 percent.

Sleep disturbances make a good night’s rest a fond memory. The frequent trips to the bathroom increase after dark. There’s random limb movements and general “painsomnia,” the inability to sleep because of pain.

“Painsomnia” rules many of my nights. I’m sensitive to noise, and over-the-counter sleeping pills often don’t work. Neither do the ones that need a prescription. But I take them anyway and hope to get some sleep. Painkillers are the same way. They don’t always work. There are times the demon that is “painsomnia” wins.

Here’s a typical nighttime battle between me and the “painsomnia” demon:

10 p.m.

My first attempt at going to bed. Lie there. Stare at the blades of my ceiling fan spinning around. Try to ignore the pain. Get up and go to the bathroom.

11 p.m.

Think about taking more meds. Go to the bathroom. Keep on trying to ignore the pain.

12 a.m.

Get up. Bathroom again. Try some kind of distraction, usually crochet at that time of night. Sometime between midnight and 2 a.m. is when sleep usually comes, if it’s going to.

2 a.m.

Groan in pain. Go to the bathroom. Ponder every decision I’ve ever made. Think about how unfair this all is. Try sleeping on the couch, the floor, anywhere else. Get stuck thinking, “Why me?”

3 a.m.

Start thinking about how long I could sleep if I fell asleep now. Think about everything. Lie there in pain.

4 a.m.

Give up on sleep. Check on social media. Think about getting ready for my day.

5 a.m.

Go to the bathroom. Get up. Start getting ready for the day. Think about facing the music that is every day with chronic illness.

6 a.m.

Forget getting ready for the day. If I’m lucky, I can fall asleep for an hour or two.

If I don’t sleep, I spend a lot of time trying to distract myself and waiting for the light to come. In so many ways.

Image via Thinkstock Images.

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How I Found My Voice When Writing About My Multiple Sclerosis

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Once upon a time, in a land very, very far away there was a boy named Michael. 

The land was Europe. Frankfurt, Germany, to be exact. It was September 1980, and it was Michael’s first day of kindergarten. 

Michael, the youngest of three boys, was excited to finally join his older brothers at school. His mother, Frances, walked proudly with him to Frankfurt Elementary #1.

They reached the door to his classroom, and instead of worry, or even tears, Michael looked back calmly at his mother — with a gleam in his eye — and said, “I’m good, Mom. I can walk myself to school tomorrow.”

That was one of my mom’s favorite stories to tell about me. She loved mentioning how independent I was growing up, even at the tender age of 4.

Although this story showcases a perceived strength of mine, that same pride and independence is also my biggest roadblock every time I sit down to write. Every. Single. Time.

Living with multiple sclerosis isn’t always conducive to writing (blurred vision and discomfort throughout my fingers are just two examples), but, for me, the bigger impediment is struggling to find my voice.

How am I coming across to the reader?

Are my words filled with negative energy? Does my prose read defeatist, full of complaints and sadness?

I fear readers view my words with pity. Poor Michael, so sad what he’s facing!

So, I edit words and phrases, hoping to avoid any dark passages. Entire stories are rewritten or even scrapped because of a nagging pride that doesn’t want others to think I can’t handle life with MS.

But there’s a catch. Living with MS isn’t easy for me. In fact, it sucks.

The battle of pride versus reality plays out every time I sit down to write. My imagination has even brought this bout to life:

In this corner, stands Michael’s pride and independence! Born in 1976, weighing in at 175 pounds, it can’t stop smiling and finding silver linings!

And … in this corner, stands multiple sclerosis! Identified in 1868, it is undefeated, having never been cured and currently affects over 2.3 million people!

Ding, ding, ding!

There are other hurdles besides just my pride. I’m not a doctor and hold no medical degree, and I don’t want to offend those who do when I write in detail about multiple sclerosis.

And MS is different for everyone. Everyone. And I’m not just talking about the symptoms or how aggressively it disables; each of us processes it differently, too. Some don’t want to share their challenges with even their family or closest friends, while others choose to be more open with their diagnosis. I want to include that as a disclaimer each time I write.

But ultimately, it’s my independence and pride that provide the biggest impediment for me trying to find my voice.

Am I a champion, overcoming — with a smile — the daily challenges of living with a disease that afflicts millions of people?

Or should I face defeat and admit that not even the silverest of linings can outweigh the sadness I feel in my heart when I see my young children look at me with concern when I struggle to walk around the house?

It finally dawned on me the other day — the answer is none of the above.

Thirty-six years ago I didn’t tell my Mom I could walk myself to school because I was full of pride — I was just sharing my honest feelings.

And that’s what I do today when I write about MS — sharing the truth. 

Sometimes, the truth can be funny or inspiring, but sometimes, it can be scary and not always have a happy ending.

Yes, I fear pity. But, worse than that would be not giving an accurate portrayal of how difficult living with MS is.

I write to bring awareness and understanding to multiple sclerosis. For those living with MS, I hope to give color to their challenges and paint a picture for their friends and family to see.

I want our challenges to be understood. I want MS to be cured.

That’s my voice.

Follow this journey on A Life Less Traveled.

Lead photo source: Thinkstock Images

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I Thank My Multiple Sclerosis for the Legacy I’m Leaving for My Children

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I was diagnosed with multiple sclerosis on July 22, 2008.

You can forget many things in life, but not when you find out you have an incurable disease. It was in a white office, and I remember it felt like someone kicked me in the stomach, and then I immediately had the urge to defend myself.

I began hitting back with questions. “How do I fight this? Can it be controlled? What can I do to get better?” Tears didn’t run down my cheeks, and I remember only a bit of anger running through me. My doctor was surprised. Apparently, he hadn’t seen that many people react the way I did right away.

Truth be told, I surprised myself, too. I found out that day I was stronger than I thought. 

I began to follow my neurologist’s instructions and took better care of my health. I told myself I was going to give this condition the battle of a lifetime by eating healthy and nurturing my body. No more canned food or processed meats, no more saturated fats, no more preservatives and chemicals. I slept better, and I exercised. It worked. I felt much better. 

But two months later, I received news that I was pregnant with my first child. I finally felt afraid for the first time. I had no idea how my disease was going to play a part in my pregnancy. However, I was determined to fight even harder. The next year I gave birth to a beautiful healthy baby girl, and one year after that, I also gave birth to my handsome son.

I was so busy with a toddler and a baby that I hardly had time to worry. But as children grow and become more independent, I began to have time to pick up where I left behind. But I’m only human, so sometimes I would feel uncertain or depressed. 

I know our lives have no warranties. I know we can’t control the future, but a part of me was seeking reassurance. How could my essence live on for my children if …

As a New Year’s resolution last year, I decided to write letters to my little ones in case I would leave this earth for any reason. I wasn’t ready to go and have my voice vanish forever. I realized it was very important for me to let my kids know how magical they made my life in the most ordinary of circumstances, so I began a project of writing to them. As a result, the world around me was enhanced, and I saw rich colors and beauty all around me, and my words would not just flow, they would gush out of my pencils and pens to create the loveliest verses.

I found delight in carpools, bathing my children, dinner. I observed simple family moments, and they were all filled with wisdom and important teachings to capture.

I thought of leaving behind a sort of manual for a good and honorable life. A document for my son and daughter to turn to for comfort and guidance. 

I wrote to them about cultivating the qualities of humility and kindness, wisdom and courage — all the ingredients for a successful and happy life.

I compiled the letters and added my own artwork: fresh and colorful paintings. My sister, Jadyn, is a graphic designer, and she put it all together in a stylish petite book to lure them to read (and not be scared or bored.)

I liked the results so much that I decided to share them with others in the hope they would appreciate these everyday adventures and maybe think about writing letters to their loved ones as well. We are not eternal, but our sentiments can live on through paper and hard drives.

My MS is under control now, but still, it’s an unpredictable autoimmune disease, and you never know how it’s going to creep up on you. So I stay vigilant and grounded to the present. I stay mesmerized by wonderful people and my amazing surroundings.

I thank my MS every day for giving me the generous gift of awareness and power of voice, so I can leave my essence to my family, friends and generations to come.

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The Reality of Being Single and Chronically Ill We Need to Talk About

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The other day I was on the phone speaking with a lawyer. Gasp! I know, an actual real live phone conversation, not a text! What is the world coming to?

We came to the point in the discussion where I was asked some questions like these:

Lawyer: How old are you?

Me: 40-something. (hidden to protect the aging and innocent)

Lawyer: Married, widowed, divorced, never married?

Me: Single, never married.

Lawyer: How is that possible?

Enero sits at desk on the phone blinking several times without speaking.

Me: (after a good long pause) It is possible because I was focused on my education and career.

My first reaction was to say WTF; however, I did not. Then, why is that his reaction? Why is being single at my age so weird and not normal for the majority?

My answer is simple: “My priority was to be true to myself.  I chose to pursue my dreams and goals, education and career first.” When relationships came along that was awesome too; but, my first priority was to be true to me and do what I wanted to do: Live my passions and make them real. When we were children, we all wanted to be something when we grew up and even as adult children, we don’t stop dreaming of the future. For me, a girl from a small town in Missouri, I can remember wanting to be a rock star one summer, a movie star the next — sometimes a truck driver with a gold and black truck. (My handle was “Goldie.” I think I may have watched too many “B.J. and The Bear” episodes?)

Another great flashblack took place during grade school. I was sitting outside at recess in a creepy, multi-level root system of this great ancient tree, brainstorming horror films with a few of my classmates.

My point?  Not once at this time did my imagination weave a yarn including a married with children storyline — and this has stayed true for most of my adult life.

Adulting has included the full-time work and school combo, plus some internships and freelance gigs with an occasional relationship here and there. It was and is a beautiful yet sometimes exhausting balancing act of creative pursuit.

I am not anti-relationship or marriage; but, I am also OK with me, myself and I. I adore my friends’ kids and family units — this was just not my focus.  And so, I fall into the Hetero-Queer category and I am quite all right with that, as are many of my other single friends.

The only time it becomes not OK is when we are forced into a relationship with a chronic illness, a selfish partner that didn’t even bother to take us out to dinner and a movie first. How rude!

I have read many an article or blog entry about living with an illness like multiple sclerosis, and how the eventual need to stop working occurs, as it does for some of us. When that happens, where do we turn?

In most of these stories we hear the voices of the married or partnered, but the tale of the singles is silent. The chronically ill with husbands, wives and partners at their side are sometimes able to step down to part- or less-than-part-time status because that financial (and emotional) support is there. Not that it is easy, but it is something versus nothing at all.

The Singles — well — we do not have this option. Our families are often far away, and really, moving back in with the parent(s), while the offer is incredibly kind and unconditionally loving and awesome of them, can destroy your soul. Most likely they now live in a city that is foreign to us. Not to mention, every place and everyone we know as adults, the friends who have become our “framily,” would now be across the country. This is very sad and very depressing. Almost as sad and depressing as the frustration upon realizing we no longer can do the work we once did at the rate we did. It is a recipe for “roll up in a ball and cry for days,” although we do not do that very often. Because we can’t.

As warriors, single or partnered, we commonly swallow our tears and pride and bottle up the depression and keep on trudging. I am not sure I know the solution, but I do know the support in the U.S. for the elderly and disabled is not sufficient.

We did not ask for these illnesses that caused the detour in our life path, and we definitely should not be penalized for taking the road less traveled with independence, passion and creative focus. We did it because it was what we were meant to do.

Ideally, in the world of “make-believe” we would live in a country where we could work the hours we are able, single or not, and receive the “difference” in the form of a subsidy from the government. We should not have to:

  • Move back in with the parents
  • Stay in a relationship that is unhealthy
  • Partner up to be financially stable
  • Live in poverty while on disability or while working less than full-time

Someday, maybe the world of “make-believe” will be real. Maybe countries around the world will fix their broken systems. Maybe all the chronically ill, singles and elderly will build “tiny home communities in lands where fertile cannabis farms and organic produce sustains the economic and financial health of the group over time.

It is a nice thought to dream of, while lounging under the clear night skies of childhood as shooting stars phase far and wide across the universe.

This blog was originally published on Modern Day MS.

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