My MS Story

I don’t have MS.

 

I am coping with MS.

 

Taken together, those two sentences are a contradiction.

 

.1% of Americans have MS but that low number is seemingly disproportionate to how many times I run into people who have MS or people who know an MS patient. People share their MS stories to offer a much needed positive “you got this” pick-me up. But there are other stories and anecdotes that MS patients may like to share as a catharsis but also with the hope that those around them could possibly begin to understand the emotional and physical struggles MS patients face daily. My life with MS certainly has had its down moments and very down moments. But there are times that a bit of humor has been found to help me cope and keep plugging along. Hopefully other MS patients will read this and smile with relief knowing they share in these struggles that are nearly impossible to explain.

 

…………AND THE LORD TAKETH AWAY

 

Twelve years ago, I finally took a blood test for the disease Loeys-Dietz, (aka “the family curse), a rare, usually fatal connective tissue disorder that leads to aortic aneurysms. It was the demise of my mom, her dad and other maternal relatives. My brother and I were the last to get tested. Who needs to hear you have a disorder that will mess up your life? Turns out, THIS GUY! I was able to enjoy that negative test result for roughly eighteen months when I noticed my right leg was weakening, my right foot occasionally was dragging. After several doctors’ visits and a handful of tests, the balance, (poor choice of words!), of my life was changed forever. I was told I have MS.

 

CULTURAL REFERENCE #1

 

“Humiliations galore”. A promise made by Inigo Montoya to Miracle Max as to what Prince Humperdinck will ultimately suffer in the movie The Princess Bride. In the movie, humiliation was a punishment but for me it is a seemingly daily hurdle I am trying to overcome.

 

(Spoiler alert!! Later I will tell of a blessing named Diane who is helping me deal with this).

 

To our own individual measure, we are all self-conscious about our looks. No new ground broken with that astute observation. I now include my disability and my struggles in how others perceive my looks. I have seen somebody with a disability and was very aware of their misfortune. I did not stare, trying to keep it a glance while also not appearing to turn away quickly in a dehumanizing manner. I know now that others do not possess this compassionate skill. They hold their stare, either unaware or not caring how I or others like me may feel. I have felt the “humiliations galore” that was promised upon Prince Humperdinck as I struggle with MS and my ever-worsening symptoms. When I’m out in public I feel eyes held on me…

 

…as I try to walk to my seat in a restaurant, theater or try to navigate tight aisles

 

…of children, the biggest culprits, not understanding manners yet, holding their stare

 

…when using my scooter as it makes a loud, startling “beeping” sound when I go backwards

 

…when I struggle with doors, curbs, steps or area rugs when using my rolator or cane

 

…from family and friends as I navigate a through a house looking for the nearest seat

 

…by those who stare apparently thinking they may need to describe me to a police sketch artist

 

…of my neighbor when I ran over myself with my car, (It happened, more on that later)

 

The balance, (dammit, that word again!), I need is for others to pay me no heed but at the same time to also be aware of me in case I need them. Sometimes others will pay me no heed extremely well while forgetting I may need them making it a no-win scenario that led to another “humiliations galore”.

 

Close your eyes and picture me at wedding that is being held behind a large, secluded private house with manicured grounds on a crisp fall Saturday afternoon. This house and grounds, while stately, are not ADA friendly. The exchange of vows is being held in front of a small flower garden behind the house and the reception will be held under a gently lit tent next to where the ceremony is being held. With eyes still closed, (no peeking!!), see me riding my motorized scooter from the house front entrance to my seat near the flower garden for the ceremony. This trip is a wide, circuitous route out around the house over ground so sloped and rough my son-in-law walked with me to make sure I made it to my seat for the ceremony. After the ceremony I take a very quick scooter trip to my seat for the reception. Are your eyes still closed? As night falls the festivities begin as the wedding party is introduced. The tables are soon released to the buffet, speeches are made and glasses are clinked to elicit a kiss between the newlyweds. After the dinner there is a mingling of guests as jackets are shed, ties are loosened and heels are swapped for sandals. Later there is an invite by the DJ to continue the festivities with dancing and an open bar on the terrace behind the house. Taking a brief stroll on a brick walkway up a gentle hill, and up a few steps, one will be standing on the terrace. Everyone that can make this trip grabs their drinks and venture to the terrace. Soon the DJ once again fires up music as people mill about, begin dancing and visit the bar. Did you forget I was still under the tent? You weren’t alone. Except for the caterers cleaning up, I was alone. Eventually my son-in-law came back down to me and we retraced our earlier steps, this time in the dark save for the flashlight on my phone. You can open your eyes now. That instance was brief. The sting lingers.

 

COMIC RELIEF

 

“They fell so much more gracefully than grouse”. This is a caption under a cartoon panel that shows aristocrats in Austria trap shooting zeppelins in the book Zany Afternoons by Bruce McCall. These aristocrats marveled at the restrained way these zeppelins fell to earth after being shot compared to the way a hunted grouse falls. If you remember in your physics books, Newton “discovered” gravity and the laws of gravity state that objects fall at a rate of 9.8 m/per second/per second. Not in my world. I apparently have a fall rate that is more in common with those zeppelins, luckily without me being shot. On the occasions I fall it seems to take several seconds to hit the floor while most people lose their balance and hit floor per Newton’s edict. I have been told a kind man who bear-hugged me up off an arena floor that my fall was, “the most graceful fall he’s ever seen”, hence my comparison to the hunted zeppelins. As soon as the trip or slip occurs and my gravity affirming plunge begins, time slows as if God wants me to savor every precious second leading to up to my inevitable thud. I have time to survey my possible landing spots, to identify objects to avoid, twist and adjust in order to minimize the impending carnage. I also have time to yell an expletive. Or two. What I should do is make use of this “gift” of extra time wisely and:

 

Plan next week’s dinner menu and the grocery shopping list

 

Learn colors* so Diane won’t say, “those don’t go together” when I pick out my own clothes

 

Attempt to grasp the idea that Hawaii has interstate highways

 

Retrace my steps in order to find that circular saw I lost. In 2007

 

Try to understand and figure out any David Lynch film

 

* Getting back to colors, what exactly is “mauve”?

 

THE LORD GIVETH……………….

 

Eleven years ago, a gal named Diane entered my life and I soon realized she was special and envisioned the rest of my life with her. Diane raised four terrific daughters practically on her own and has welcomed my four kiddies into her life without blinking. She is a warm, caring lady full of empathy and she will strike up a conversation with anybody. She has a quirky sense of humor that allows us to entertain ourselves when we are out and about by breaking into little comedy routines. Apparently I am the clown and she is my sidekick playing the “straight one”. Family is very important to her and she refuses to miss any family function and holidays are a special focus of hers. Christmas where she truly shines. If decorating for Christmas was an Olympic event she would bring home the gold! (USA! USA! USA!). A mere sixteen months into our life together I was diagnosed with MS. She was unfazed and supportive at the time when I needed her the most. Diane is possibly more stubborn than I am and this manifests itself in her determination that I forget being self-conscious, forget about facing “humiliations galore” and to do what I need to do and live my life, our life. She understands my plight and encourages me to face MS head on. Our Pastor who married us, recited the standard vow, “for better and for worse” and she certainly embraced that promise! On days when my physical challenges are daunting due to an infection or a virus, she can pivot herself from being Florence Nightingale to Nurse Ratched. On days that are just harder for no apparent she can switch from being a compassionate angel to a tired wife with a seemingly sadistic twinkle in her eye. (I swear! I’ve seen it!) To wit;

 

When I am bed-ridden she will make me comfortable and cater to my needs.……

 

But sometimes when I am bed-ridden she will say, “Don’t just lay there, you need to get up and try”

 

When I stand to go fetch something I need, she will ask what I need and get it for me……

 

But sometimes when I ask her to get me something I need she will say, “get up and get it yourself”

 

When I go to sit down she will move pillows, people or clear a path if necessary…….

 

But sometimes when I need help into bed she throws my legs up in haste as to “helicopter” me around

 

When I need an arm to help me get from point A to point B she is ready to help……

 

But sometimes when I struggle to walk and she is busy she will distractedly say, “you can make it!”

 

When I am slow she will ask if everything is ok, do I need help?…..

 

But sometimes when I’m slow she will say, “Come on wheels, pick up that dead leg and let’s go!”

 

My love for her is not rooted solely in the way she has faced MS with me. Hell, I would probably still love her if I didn’t have MS. In addition to the aforementioned comedy routines we sometimes put together, we are like 2 teenagers in love. We are the grandparents who still hold hands, nuzzle and flirt with each other constantly. (I tried flirting with another woman once. Didn’t go as planned). I can count on her amusingly confound or entertain me;

 

She can de academic and describe, in great detail, bi-lateral knee replacement surgery

 

Then she can suddenly on the floor laughing because she heard someone fart

 

She can be neat and meticulous, folding paper and organizing things just to throw them away

 

Yet she is ok with our garage looking like a FEMA disaster site

 

She can carelessly cut you and laugh while you’re bleeding **

 

That’s a Billy Joel lyric. Just seeing if you’re paying attention

 

She owns every cooking utensil, small appliance and kitchen gadget known to mankind

 

She hates to cook

 

She has four distinct laughs and they will appear at random

 

I can imitate all four

 

She is frequently kind and she’s suddenly cruel**

 

That is another Billy Joel lyric. Again, just seeing if you’re paying attention

 

** These lyrics are from Billy Joel’s song, She’s always a woman from his The Stranger album. This was Joel’s fifth album and is considered his breakout album after moderate success of his first four. While the title track to his album, Piano Man is considered his most popular it also had one of the best teenage angst songs, Captain Jack on it. Joel’s writing began to evolve from a slightly darker, brooding feeling to a lighter……………………..

 

SQUIRREL!!

 

And we’re back

 

Diane is a lady of faith. Of all the parts of the Bible I am convinced that her favorite passage is Revelations 3:19: “Those whom I love, I reprove and discipline, so be zealous and repent”. It has been interpreted as “in difficult times disciplinary actions and admonitions are not punishments but loving corrections” and her belief in this mantra continuously plays out……..

 

Diane has helped me, through gentle admonitions, to ease my self-consciousness moments and fears of “humilations galore”. I used to wait and let countless cars pass before heading to the entrance of a store or restaurant. This was me not wanting to be stared at as I slowly made my way across their path. She would tell me, “Let’s go. They’ll have to wait!” or, as she so eloquently puts it in the winter, “Let’s go. It’s freaking cold out here!”. Now I just cross with my wife. When I need to use my cane or rolator in restaurants I used to be aware of servers or customers stacking behind me as I slowly made my way. Now I just walk with my wife. I used to be self-conscious in crowds when I am on my scooter I was lower than most people. Now I am just out with my wife. In the past I would forsake moving from my scooter to the stands to watch my son play soccer because of people watching me struggling to my seat. Now I just sit in the stands to watch my son. Because of her admonitions I have been tuning out others and just living my life, our life, whether it include a cane, rolator or a scooter.

 

CULTURAL REFERENCE #2

 

“Must control fists of death!” This is the inner voice of Alice, the frustrated engineer in the comic strip Dilbert, and she tells herself this when dealing with idiots. I sometimes think of her exasperation when people see me out and about and insist on commenting. We have a built in need to commiserate and try to relate and show empathy towards others and well-meaning people equating minor and irrelevant conditions to my plight. Comments so bewildering I want to unabashedly respond and let fly verbal “fists of death” but I must “suffer fools lightly” when hearing;

 

“I know how you feel. I broke my ankle years ago”

 

“Really? Did it heal? Can you walk now?”

 

“That’s the way to travel on a day like today!” (on a hot day at a flea market, on my scooter)

 

“Thank Christ I have MS so I don’t have to sweat!”

 

“I had trouble getting around to when I had gout”

 

“But you took medicine, and you better now, right?”

 

“Some days I’m so tired I wish I had a scooter too”

 

“I’m handicapped and a scooter is needed. You’re just lazy and pathetic”

 

These are some actual rude statements said to me over the years and bit my tongue and smiled at these people and did not respond with any of the aforementioned thoughts. I think in the future I should just employ the “brevity is the soul of wit” mantra and just say………………………”F**K OFF”.

 

MISCELANEOUS

 

Here are a few thoughts, (ramblings), that had no real landing spots, so I decided to include them as stand alone, detached comments with no segues.

 

I have a heightened awareness of the cretins who do not have an ADA placard or an ADA special plate on their car that park in ADA spots or park their motorcycle in the striped ADA van loading areas. I guess they are special in their own little world. I have on occasion confronted them. They do not care as shame and consideration is lost on them. I have called the local police in hopes these assclowns would get a ticket. The police care about this rudeness slightly less than those who park illegally. *SIGH*

 

There is still an abundance of good people in my world, strangers who help me as I muddle through the day. It’s a surprising, welcome revelation that young people are some of the most helpful, considerate group out there. I have strangers ask if I need help with my scooter getting it in and out of my car. People hold doors open so my wife and I can get a straight shot through entrances and help get my scooter over difficult thresholds. Coworkers at my office plow and salt the areas around my car in the winter and load and unload my scooter at work. When I shop alone, people graciously ask if they can reach the higher shelved for items that I need. *YEA*

 

I used to be competitive to the point of being petty. I couldn’t lose, I wouldn’t allow it. I should treat the MS as a foe to beat in a game but I have days of despair and resignation. There are many days that I don’t even want to get in the game. I have been on happy pills for years. While I know I will eventually lose the physical battle there are times I fear I am currently losing the mental battle and I fear losing the mental battle more because that will be worse than losing the physical battle. *SIGH*

 

Mohammed stared at a wall for 12 hours and when he arose he was enlighten

Scott stared at a wall for 15 minutes and when he arose he was bored.

 

Like Mohammed I have sat quietly and stared at a wall as I occasionally need time to process my fight with MS. These moments usually occur at night when we are getting into bed or the middle of the night when I wake for no reason. I will sit on the edge of the bed and stare at the bedroom wall. It is during these fixations that Diane will ask, “what’s wrong? What are you thinking about?” Knowing how including Diane and talking out my concerns with her would be both beneficial and rewarding for both of us, I usually respond, “nothing”. Bless her heart, she knows what I am doing and will give me space after a reassuring touch or smile. *YEA*

 

I have a cousin, Zach, who has a friend that also has been diagnosed with MS, so once a year he sponsors an MS walk and 5K race in support of her and I. There are many friends and family that attend this event to walk, (my family does not run!), and afterwards he treats us all to a nice brunch. It is a very nice gesture and the support from all means a lot to me. And I get a free T-shirt! *YEA*

 

Diane and I each brought four kids into our relationship and out of the eight, six of them are girls. Feel free to pray for me! Our kids were still fairly young when I received my diagnosis, the youngest was 8, and the oldest was 21. My diagnosis has affected them each in a different way and they are supportive and understanding and are there to help me whenever I need them. *YEA*

 

I have read this story several times in the editing process. It was only during my last reading did I realize a funny mistake. In the section titled “Cultural Reference #1” I told of my experience at a wedding reception. I asked you, the reader, to close your eyes to imagine the scene. During the telling I reminded you, “no peeking!”. At the end of the story, I told you to open your eyes. If I expected you to follow those directions, how could you have read that? I left that in and added this disclaimer. *SIGH??*

 

IT’S DIFFERENT IN PRIVATE

 

While my physical struggles due to MS are the same whether I am alone or in front of people, the emotional struggle of MS changes based on my surroundings. In public I have to wear a blank face and force the occasional weak smile as those around me see me struggle. When I am alone the emotional struggle is also there but my response sometimes is raw and unvarnished. There have been two memorable occasions where the pent-up emotional struggle was set free;

 

On a November Ohio night that was just warm enough to turn the fallen snow into slush I came home from work dressed in slacks, a button-down dress shirt and a nice tweed overcoat, my attempt at handsome. Through the kitchen window I see that the large trash can in the back yard was laying down on the ground because some hungry and curious critters have overturned it, spilling its contents out of and around the can. I step outside and head to the scene of the crime that is dimly lit by what seems to be a ¼ watt porch light bulb. As I trudge toward the carnage I fall victim to my heavy right foot as my shoe catches a root sticking up out of the ground. My attempt at handsome is now lying in melting snow, mud and trash. As I lie there, smeared and covered in that concoction, I release all the anger and frustration that had been building up for some time. I convulsed as I cried and screamed at God to just “leave me alone!” After a couple of minutes, I slowly calmed, caught my breath and struggled to my feet. I got up, picked up and cleaned up.

 

A couple of years after I spent a night wallowing in my trash, I was in the process of updating my house, focusing on repainting all the rooms. After my divorce I repainted every room as I saw fit without rhyme, reason or thought resulting in a collection of greens, yellows and fuchsias, (no mauve!). Unfortunately, Diane was not yet in my life to help me with my color selections. One night I was painting the family room a standard off-white, my choice being Canvas Sail. (Note: Glidden makes about 300 shades of offwhite). With music blaring I zipped around the family room in raggedy old, baggy gym shorts and a Tshirt. With paint roller in hand, I was confidently relaxed as I headed to the next wall to roll and my heavy foot once again betrayed me. My stride did not clear the paint tray on the floor as I tried to step over it and my right foot became immersed in Canvas Sail as I stepped firmly into the tray, losing my balance. And yes, it could get worse as I somehow managed to channel the 3 Stooges and my gym shorts slid down during the twisting fall and my face landed in a puddle of Sail Cloth. I once again find myself losing it and again I am screaming at God. The roller I had managed to keep gripped during the fall is launched across the room. I soon realized that I was lying with the side of my face laying in paint, shorts down below my knees and my underwear on display. But unlike the night of the trash can fiasco I began to laugh as I replay the events in my head imagining what I must look like.

 

DON’T TREAD ON ME

 

This saying was on a flag signaling the unity of the American colonies during the Revolutionary War. However, at one time in my life, it could have been a panicked shout that I could have yelled at my car. After a night of bartending, I backed my car into the driveway and parked by the house as I have done many times before. This time it was going to be different because as I got out of my car and was starting to close the door I quickly realized the car was starting to roll down the driveway. That happens when one leaves the car in neutral, not park. I tried to step towards the car attempting to hop in the front seat to hit the brakes but MS strikes again! Lacking the speed or dexterity to perform this now complex task my next move was to grab the pillar between the doors to stop the car. With my weakened legs I could not anchor properly and I was lurched forward and off my feet as the car kept slowly rolling towards the street. Not wanting to give in I kept my grip but by now my hands have slid to the bottom of the pillar as I am now being dragged alongside the car slowly down the driveway. As my shirt is shredding and the skin of my shoulder and the left side of my face is being left on the driveway, I concede defeat and let go of the pillar and realize that I am now in the path of the approaching rear wheel. My hands flatten just as the wheel rolls over them, scraping my knuckles into the concrete. As the back wheel finished with my hands it headed for my face. I rocked my head back in time to leave about an inch or so between my nose and the side of the tire as it rolled by. I used this tiny amount of momentum to roll onto my belly and watch as my car rolled out of my drive, across the road and come to rest against the opposite curb. Of course, a car just had to be coming by at that exact moment. It slowed and managed to squeeze around the back of my car that now sat sideways in the road and continued off into the night. My neighbor, who thankfully was in his front yard at that late hour and watched as my car tried to kill me, rushed over and helped me to my feet and then to my car so I could try it all over again. After a second successful attempt at parking, I made my way to the bathroom to remove what was left of my shirt and clean up my scrapes It hit me: the person that drove around my car was not compelled enough to stop upon seeing a car sideways in the road and a body lying nearby in a driveway. Apparently the driver was never curious enough to ask if I was ok or for this driver to even wonder, “WTF?”

 

TO KNOW

 

As I wrote earlier, people have a natural need to commiserate, in an attempt to connect and show empathy. But people without MS will never know how I feel or what I am going through their despite their words. I face a world whose amenities that, on occasion, feel hostile towards me. I will have moments that beat me down so badly that an encouraging word or empathy from others will have zero affect. People may never……..

 

Know what it is like to be told, “you have brain damage”

 

Know what it is like to be aware your quality of life is slipping away

 

Know that my life expectancy probably has been shortened

 

Know that with every step a fall and serious injury is possible

 

Know how it feels to have self-reliance slowly taken from you at an early age

 

Know the chore of constantly scanning the ground for tripping hazards

 

Know that being around people with a cold could land me bedridden, laid up for days

 

Know what it’s like to scan rooms to see what furniture you can ‘surf” to help walk

 

Know that a hot day, stress or a bad night’s sleep will severely affect my mobility

 

Know the power of my private melt downs

 

Know the feel of a strangers hug when I am “having a moment” in public

 

Know the despair of falling alone wondering if you can get up, but also……..

 

Know that the relief you fell while you were alone so nobody saw you fall

 

Know the embarrassment when a stranger picks you up off the floor after a face plant

 

Know the feeling when others lift your legs up from behind to get you up steps on bad days

 

Know that I laughed as I wrote this

 

Know that I cried as I wrote this

 

PATIENCE IS A VIRTUE

 

A lot has been taken from me and I can no longer do a lot of what I used to as my independence slips away and my self-reliance fades. It’s a gut punch. Reminders of my decline rear their heads daily and it sometimes takes fortitude to tamp down the fears and despair I face. Every day I will have challenges to face and I fortunately will not face them alone. My wife, friends, coworkers and family go through them with me. I need patience from myself and others as I try to learn how to deal and cope with these changes both physically and emotionally. I need patience from strangers I encumber when I am out and about. I need patience from those I need assistance from who may be busy at the time. I need patience from those in my life as I deal with moments of depression. At times those around me will have their patience tested. This is a struggle that is new to me and the people in my life. While the same challenges appear every day, every day these challenges are new. I need patience.

 

I don’t have MS.

 

I am coping with MS.

 

Taken together, those two sentences are lies.