Author: Steve Markesich

I am loving husband, a doting father, a Red Sox fanatic, an aspiring novelist and MS advocate. Feel free to check out my stevemarkesich.com web site.

The Three Day Quote Challenge – Day 3

Einstein

The rules:

  1. Thank the person who nominated you.  – Thanks again Angela                            ( https://fuckms.ca )
  2. Share a post each day for three consecutive days (3 quotes total)
  3. Explain why you like the quote
  4. Nominate three bloggers to play along

Unlike the last two days, I couldn’t think of a quote to share, so I decided to troll through the internet. To save myself time, I decided to latch onto the first quote I saw that made be feel something, expecting to share something profound and uplifting. Well, I found something profound alright. It certainly struck a nerve, but before I share this with you, be advised what follows is more rant than rave:

So, if we lie to the government it’s a felony, but if they lie to us its politics     Bill Murray

This quote pretty much sums up my disgust with the current state of our local and national politics. Honesty and politics have never gone hand in hand, but the disconnect has been taken to new heights, and it doesn’t appear that anyone seems to care. Self-interest and greed has destroyed compromise and common sense. All of which leads me to another quote (okay, I’m cheating again – sue me).

The difference between genius and stupidity is that genius has its limits Albert Einstein

I’d like to think that no matter which side of the aisle you fall on, you can recognize how broken we’ve become in terms of our ability to at least see and consider another point of view. I’m afraid that if we continue on the same path we’ve traveled over the last decade plus, the divide will become so wide it will take something cataclysmic to mend it. All of which will prove Einstein knew what he was talking about.

Today’s nominees include a friend and two fellow MS warriors.

Karyn is someone I’ve been following for a while but had the pleasure of meeting during our recent blogging soiree with Grace and Superman. Karyn writes about real stuff and is as down to earth as you can get. Check her out when you can ( https://karynsdomain.wordpress.com/ )

Hannah ( https://mymultiplesclerosisandme.wordpress.com/ ) and Ashlie      ( https://crawlingthroughmy20s.wordpress.com ) both suffer from MS and share their trials and tribulations. What I find interesting about their work, besides their writing, is that they are both in their twenties. They write from a completely different perspective than I do, which is both refreshing and sad. Refreshing in the sense that they are brave to share their experiences living with this beast at such a tender age, and sad that they have to deal with this so early in their lives.

This ends my three day homework assignment. Hope I got a passing grade.

 

 

The 3 Day Quote Challenge – Day 2

Shawshank

Now that I know what I’m doing, here are the rules:

1. Thank the person that nominated you.

2. Write one quote each day for three consecutive days (3 quotes total)

3. Explain why the quote is meaningful for you.

4. Nominate three bloggers each day to participate in the challenge

Thanks again to Angela, who writes the Fuck MS blog, for bestowing this honor upon me. Please check her out at:   https://fuckms.ca

You may have already figured this out from the picture, but TODAY’S QUOTE IS (drum roll)……… Get busy living, or get busy dying.

This is a quote from Andy Dufrense in the movie The Shawshank Redemption,  which might be my favorite movie of all-time. It certainly is in the top three. It’s theme of of hope and perseverance under unfair and adverse conditions, is inspiring. I love it when the underdog wins, and the acting and screenplay is superb! I’ve watched it so many times I’ve lost track. I can’t imagine anyone not knowing about this flick, but if you don’t, do yourself a favor. Go on Netflix and look it up. You will be glad you did.

The reason this quote has so much meaning is because it epitomizes my attitude since I was diagnosed. MS, or any significant disability/affliction for that matter, changes your life and, in my opinion, leaves you with two choices.

You can either accept your new reality, confront it head on, and make the best of a bad situation. Or, you can curl into the fetal position, say whoa is me, lament about all the things that you’ve lost, become obsessed with the shitty hand you’ve been dealt, and wither away. In other words, you can get busy living or get busy dying.

Today’s nominees to participate in this challenge are:

Walt who authors Walt’s Writings is a poet, an old salt with a romantic soul. His poetry resonates with a hopeless romantic like myself. He paints images and evokes emotions we can all relate to with his simple words. I highly recommend you give him a look.

I don’t know the name of the person who writes Damn Girl, Get Your Shit Together, but I love her style and attitude. All you have to to is check out this ditty  https://damngirlgetyourshittogether.com/2018/04/05/oh-fuckery/ to see why. I’m really curious to see what her quotes might be.

Last but not least is Grace, who authors MS Graceful…NOT! Brutally honest and funny, Grace doesn’t pull any punches. In fact, she’s already been nominated, by Alyssa I believe, but I’m nominating her again because she is either not paying attention or avoiding the issue. HELLO GRACE! Time to get your coffee and get to work!  https://gracefulnot.com/blog

See you all again tomorrow

Quote of the Day Mea Culpa

Oops

Oops!

Upon further review……. I discovered that I didn’t exactly follow the rules in the quote of the day challenge.

What I was supposed to do was write one quote for three consecutive days, and nominate three bloggers on each of those days to do the same. I was also supposed to explain why I selected each quote.

Okay, so I’m a dumb ass. Guess that’s what happens when you try to whip up something during your lunch break.

So consider the fact you received three quotes today instead of one a bonus. I promise to be good tomorrow.

 

Day 1 of 3 Quote Challenge

Quote

Thank you to Angela of Fuck MS fame for the nomination.  Her’s was among the first blogs I discovered when I started mine, and I’ve always enjoyed her frankness and willingness to bare her soul, not to mention her writing. I’m not the most technically savvy person in the world, otherwise I’d drop her a link to her site right here. So I will list it the old fashioned way and encourage you to give it a look: https://fuckms.ca

It was hard to come up with three quotes, and if I were to do this next week I might have come up with different ones. The quotes that follow have always resonated with me for a variety of different reasons, and here they are:

Try to be a rainbow in someone’s cloud – Maya Angelou

Life is what happens when you’re busy making plans – John Lennon

A journey of 1,000 miles begins with a single step – Lao Tzu

My next obligation is to nominate three more victims, I mean bloggers, to join in the fun and games.

The first is the great Billy Mac, aka Superman. I love his writing, his point of view, and the fact he isn’t afraid to poke fun at himself, something we have in common.  Plus, he’s been feeling a little down lately and I thought this might give him something to occupy his thoughts, perk him up, or piss him off. Either one is good enough for me: https://goodtobealivetoday.wordpress.com

Nominee number two is Tom, author of the blog Tom Being Tom. I’m not sure how I stumbled across Tom. It was probably through either Bill or Grace, but I love his style and the topics he writes about. His last topic:  https://www.tombeingtom.com/routine/    definitely confirmed that we are cut from a different cloth.

My final nominee is Susan: https://flowergirlink.wordpress.com  Susan turned me onto poetry, and, for those of you who read my blog,  had the uncanny ability to shame me into writing a poem. Her poetry sings, and she writes fine prose too. What drew me to Susan however is her story, but if you want to know more about that you’ll either have to read her blog, or the guest post she authored on mine several weeks ago.

So there you have it. I hope I passed the audition

 

My Restless Leg

Restless leg

The potpourri of symptoms I’ve previously chronicled include a severely drooping foot, no leg strength from just above the knee, an ankle that constantly wants to turn sideways, and occasional cramps in my toes, the arch of my foot, and my calf. And let’s not forget balance, specifically the lack thereof. I’m not exaggerating when I say that a strong and sudden gust of wind can cause a loss of balance and an unexpected fall.

The one symptom I’ve never mentioned before, which happens to be the most annoying, is something called Restless Leg Syndrome (RLS).

Here is a quick definition: RLS causes unpleasant or uncomfortable sensations in the legs, creating an irresistible urge to move them. Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is sitting, resting, or lying in bed.  They also may occur when someone is inactive and sitting for extended periods (for example, when taking a trip by plane or watching a movie). There are a variety of sensations that generally occur within the limb that prompt the jerking movements: crawling, creeping, pulling, throbbing, aching, itching, and a feeling akin to an electric current. Research shows that people with MS are about four times more likely to have RLS than people in the general population.

In the scheme of things, my RLS isn’t a big deal. There is no pain or discomfort whatsoever that alerts me to its arrival.  Nonetheless, it’s aggravating to the extreme.

First of all, I can’t control it. Without warning, a jolt electric current surges into my lower leg, causing the toes to curl upward and the foot to lift. Sometimes it’s a quick twitch, and other times it lasts a few seconds, where the big toe is trying its damnedest to touch my shin, or the leg sticks straight out with the heel pointing forward, before it flops back to earth.

Secondly, when the twitching begins, it can occur as many as three times per minute. Do the math. It’s hard to enjoy anything when your leg acts like a flopping fish desperately trying to find its way back into the water.

I’m not self conscious about the way I walk or things of that nature, but I am about this, primarily because I think it looks bizzare. When someone parks in a handicapped space or you see someone with a cane, you expect to see them them walk differently or have a more difficult time getting about. Imagine sitting next to someone who looks perfectly healthy at work, in a movie theater, a sporting event, a wedding, or sitting in their living room over drinks, and their foot/leg begins to spasm and doesn’t stop. If you get too close, you might even get kicked.

The spasms always occur when I’ve been sitting for extended periods of time, like right now as I’m writing this piece. They can and do occur at work, but all I have to do is get up and walk around to make the twitching disappear. I don’t always do that because the spasms don’t impact my ability to do my job, but there are other times where getting up and walking around is impossible, like when I’m driving.

I have to be extremely careful when the leg starts flailing while I’m driving, because my bad leg is the right one, which controls the accelerator and brake. Try accelerating or braking  when your foot is trying to curl backwards. I’ve learned to brake with my left foot if necessary, and most of the time I can coast the few seconds during which the spasm occurs. If I’m on the highway when this happens, cruise control comes in handy. Nonetheless, my next new car is going to have to be equipped with hand controls whether I like it or not.

If I am at a public event or gathering of some kind, I don’t stay on my feet for extended periods of time, which means I’m usually sitting. In these situations I try to make sure there is some distance between me and the person I am sitting next to or across from, and do whatever I can to hide my legs. Sometimes, I’ll cross my feet to prevent the leg from protruding too far should the spasms start.

Then there is the issue of trying to fall asleep when RLS is active. In K’s recent post, she rightfully said that I don’t get enough sleep, but one of the reasons for this is that it doesn’t seem to matter what is going on with the leg when I’m dead tired. I’ll still fall asleep in five to ten minutes. Otherwise, the twitching, which occurs almost every night night, makes it hard to get comfortable.  I become restless, annoyed, and eventually wide awake. Of course, I could walk around to make it stop, but it takes more than a brief stroll for that to occur. Either way, it takes a while before sleep comes, and I get even less sleep in the process.

These are some of the reasons why I find RLS so annoying, but it is not the reason

K lamented that I do a lot of things that Shodan can and probably should do. Why? Because it gives me a sense of control over my tormentor. From my perspective, giving into MS by letting others do the work I am still capable of doing is like conceding to an enemy that wants me  to wave the white flag of surrender, which I simply refuse to do. So even though snow removal is very difficult, and I do stuff in the yard that my son could do more easily and in a fraction of the time, I find ways to compensate, which allows me to complete the task. This is all about my will being stronger than the MS, and not letting it get the best of me.

None of that works with RLS.  It’s as if the disease is taunting me. “So you think you can ignore me? You think you have control?” it whispers. “Let’s test that theory while I fuck with your leg for a little while. See how that works for you!”

I am absolutely impotent in this situation, which serves as a not so subtle reminder that I’m denying this inconvenient truth: if and when MS decides to throw the hammer down and takes control over everything I stubbornly cling to, I will be powerless to stop it.

And that is what bugs me the most.

Relationships

Relationships

Author’s note: Wouldn’t you know it? My wife’s post had more views than any of the others that preceded it. I’ll be hearing about that one for a while.  Be on the lookout for an occasional post from K in the future. In all likelihood, it will occur after the pain-in-the- ass husband has gotten her to the point where she needs to vent.

Let’s start by stating the obvious: living with a chronic condition sucks. It changes your life by not only placing physical limitations on what you can do, but also provides mental and emotional challenges that did not previously exist. A future that may once have had limitless potential is confronted with storm clouds as far as the eye can see.

All of which make relationships so important. Whether it’s your spouse, life partner, good friend(s) or all of the above, loving relationships make you feel whole and help distract you from your struggles.

Relationships are the ballast that keep our listing ships afloat. They are the mortar that keep our psyche intact. The people in these relationships accept us for who we are, not what we once were or may be. They pick us up when we are down, and kick us in the ass when we’re feeling sorry for ourselves. The sum of these are so vital for us to maintain our self esteem and keep plodding forward.

One of the many things living with something a chronic condition teaches you is how solid the relationships in your life truly are.

I’d like to believe that “in good times and bad, through better or worse, in sickness and in health” mean something, but I’m not naive. Health issues can break up the best of established marriages, and cripple new ones. They are especially corrosive when kids are involved. My MS journey validated what I always knew but perhaps never fully appreciated: K is an exceptional, wonderful human being and I’m lucky to have her.

In terms of relationships with friends, the only benefit of getting something like MS in middle-age is your friends are long-established, and you don’t need to hang with them as much because you have a history and have already carved out lives for yourselves. When you do connect, the atmosphere is laid back, low key, and comparatively mellow. The danger of being isolated and alone due to physical limitations is low.

Finding and/or maintaining friends and lovers in your twenties is much harder when a chronic condition invades your world. Appetites are insatiable at that age. You’re  ravenously exploring what life has to offer. Hanging with the crowd becomes impossible when you’re health weighs you down. While it might not be their intention, it’s hard for friends not to leave you in the dust in that situation. After all, life is a 100 yard sprint at that stage of your life. That’s hard to accomplish with an anchor chained to your leg, and you, tragically, are that anchor.

friends

As far as dating is concerned, not hanging with a crowd makes it difficult to meet and mingle, plus there is the issue of how much to disclose and when to disclose it. Honesty is such an important foundation in any relationship, but if you are forthcoming about a condition like MS from the start, you run the risk of not even getting out of the batter’s box. But if you aren’t forthcoming at all or lie about it, you’ll eventually be exposed as a liar and a fraud, which is worse. Most people aren’t willing to look past your flaws if you can’t be trusted. Talk about a dilemma!

Then there is the issue of feeling lousy or living with pain. It hard to feel or muster the fire and passion that’s taken for granted at that age when that twin-headed monster lurks.  My only advice is to be persistent, stay true to yourself, hope the best, and when you unearth that hard-to-find diamond who looks beyond all that, hold on as tightly as you can without smothering them.

Some may subscribe to the premise that my life took a cruel turn. I can’t deny  there is some truth that assumption, but I don’t dwell on it because my condition didn’t surface until I was close to fifty years of age. That isn’t ancient by any measure, and my retirement years will no doubt be different from what I hoped. Hell, my fifties have been a lot different from what I expected. But, I was able to live it up in my youth, and the years that followed the diagnosis haven’t changed my ability to enjoy life. I can live with that. The last decade has certainly had some challenges and difficulties, but the pace of my life was already beginning to wind down when MS came calling, making the bitter pill easier to swallow. I’m pretty chill when it comes to my reality.

If I were in my late teens or twenties? I’d be a basket case. The perspective my life experience has provided is extremely difficult if not impossible to grasp if you’ve been saddled with this at such a tender age.

My heart bleeds for anyone who has.

An Attempt at Poetry

Poem

Inspired by Tom Being Tom, and encouraged by Susan at Floweringink, here is my inaugural (and very possibly only) attempt at poetry

Adrift

In a restless void

With no compass or sextant

To guide me

Castaway

From life’s normalcy 

Without pity or remorse

Those shores are distant

Never to return

Destination

Unknown and alien

No sails unfurled 

No charted course

On an endless sea

Clouds

Angry bruises

Swallow my horizon

Foreshadow the tempest

Of a raging gale

Despair

Will capsize my ship

An indulgent luxury

Its charm seductive

Its consequences tragic

So tempting

Trust

Surrendering the rudder

I lay on the deck

Close my eyes

Let go of the fear

Yearn for the sun’s embrace

The glory of a new day

And destiny

A Cold Shower

Shower

Before I get started, A BIG THANK YOU to Tom, of Tom Being Tom fame, for being a guest author last week. Your contributions were well received and much appreciated Tom. A handful of other bloggers, and some published authors, whose writing I enjoy and admire have also graciously agreed to contribute to this blog when the mood strikes them. I’m looking forward to reading what they have to say with great anticipation.

We now return you to the regularly scheduled program………….

When I was first diagnosed, I received a lot of advice from various outlets, the primary one being that I should seek the help of an “expert” in the MS field. I wasn’t keen on that idea at first, but eventually warmed up to it. After all, there is nothing wrong with a second opinion, and I became increasingly curious about what they might have to say or recommend.

Johns-Hopkins emerged as the preeminent facility closest to home. Making an appointment was easy, and I wasn’t choosy about who I saw because I assumed they were all good.  Once the date and time was set, I signed the necessary releases so they could obtain my MRI results and medical records, then booked a round-trip flight to Baltimore and a room at the Inner Harbor Marriot. When I subsequently mentioned the trip to a good friend, he decided to drive from his home in Pennsylvania and hang out with me for the weekend. This made the upcoming journey seem like a fun thing to look forward to, rather than a solitary business venture.

We met in the hotel lobby shortly before noon that Friday morning, discussed our plans for the weekend, and he asked if I wanted him to join me for my 1:15 pm appointment. I had never considered it, but thought it might be a good idea. Having another set of eyes and ears would help insure I didn’t miss anything the doctor had to say. This turned out to be a wise decision, but for different reasons.

Both of us had worked in the healthcare arena our entire careers and were not intimidated or awed by hospitals or clinicians. Nonetheless, I was apprehensive about the appointment and what I might learn, good or bad, from it. After all, this was Johns-Hopkins, and they knew their shit. It felt like I was going to court to be sentenced by the judge.

Once we arrived, the registration process didn’t take long and we were ushered to the clinic, then escorted to a treatment room. A few minutes later the physician arrived, and introductions were made.

I started rattling off things about myself, my clinical history, and why I chose to come to Hopkins. Then I started asking a bunch of questions about treatment, prognosis, and things of that nature. Looking back on it, I’m sure it was obvious that I had made a pilgrimage to what I thought was the MS mecca of the eastern seaboard.

It turned out to be more like Dorthy meeting the Wizard of Oz, because when I had finished talking, he gazed at me with a look that was a combination of indifference and boredom. The first words he said were:

“When has medicine cured anything?”

Talk about a buzzkill.

At first I wasn’t sure I heard him correctly, then scrambled to try to hide what I’m sure was the crestfallen look on my face. For the next fifteen minutes, he asked a few questions and provided information regarding what I might consider doing in terms of treatment, diet, and things of that nature, but that is all a blur to me now. I had tuned him out, and picked up the pieces of what I didn’t hear from my friend later on.

I was dumbfounded. After all, what this guy just said, or so I thought, was “why did you come all the way down here, you idiot. You’re fucked, don’t you know that?  If you’re looking for encouragement you came to the wrong place.” Whether that was fair or not, I could not believe I came all the way from Connecticut to what I presumed was one of the premier MS institutions in the country to be treated like this. I wasn’t looking for a cure because I knew none existed. What I was looking for was information, validation, encouragement and, most importantly, a reason for hope. Instead, I received an ice cold shower.

My friend and I left the treatment room in silence, headed to the main hospital lobby, and sat in one of the sofas. I turned to him and asked “did that really happen?” He smirked and replied, “I was about to ask you the same thing. I can’t believe he actually said that.”

The remainder of the weekend was spent exploring the Inner Harbor, taking in an Orioles game at Camden Yards, and enjoying the fine cuisine the city had to offer. We cracked jokes over dinner and drinks about the healthcare business in general and that physician in particular, so the trip was not an entire waste.

I’m not sharing this story to declare this physician did me a favor, and how grateful I am for it. At the time I was incredulous, confused, and rip-snorting pissed. His general demeanor and attitude irritated me the most. Besides, I didn’t totally agree with what he said, but didn’t want to debate the point. I may be splitting hairs here, but didn’t medicine solve polio and several other scourges?

The reason for sharing this story is to tell you about the two invaluable lessons I learned from this experience which have guided me throughout my MS journey, and apply to anyone suffering from a chronic condition.

Lesson one is to be your advocate and decision maker regarding your health and treatment. Don’t search for the Holy Grail because it does not exist. Finding a  knowledgeable clinician you connect with is paramount, and you can find one nearby if you look hard enough.

Lesson two is to learn as much as you can about what is ailing you, and don’t automatically defer to your clinician just because of who they are. Ask a ton of questions, don’t worry about whether they may be “stupid”, and if something doesn’t feel right, don’t do it.

I didn’t practice either of these until after the Hopkins experience. Otherwise I never would have agreed to self-inject with both Betaseron, and then Copaxone. I had primary-progressive MS, and knew these drugs were not clinically effective for it, yet I agreed to take them because that was what my neurologist suggested. Needless to say, they didn’t do a thing for me other than cause occasional pain from the injection, bruising and welts.

I also would not have agreed to having a spinal tap in the neurologist’s office. I knew they were generally performed at a hospital, and thought I might be more comfortable and relaxed in that setting, yet agreed to the office because that’s what he wanted and I trusted him. It turned out to be a bad idea, and I wound up going to the hospital anyway after four unsuccessful attempts at drawing fluid. I changed neurologists shortly thereafter.

The Hopkins gambit opened my eyes to what I was doing wrong and helped transform me from being a docile mouse who agreed to anything my doctor said, to someone who took ownership of an uncertain future.  I found a new neurologist, and have been with him for the last eight years. He is on top of all the research, and has a wealth of information concerning what has and hasn’t worked for the thousands of patients he has treated over the years. He shares the pros and cons of any recommendation he might suggest based on this knowledge provided I ask the questions, which allows me to chart my own course.

To this day I don’t understand why that doctor at Johns-Hopkins said what he said or acted the way he did, and often wondered if he treated all first-time patients the same way. Out of curiosity, I checked to see if he still worked there before I started writing this entry, and wasn’t surprised to learn that he did not. He’s on the faculty at the National Institute of Neurological Disorders and Stroke in Bethesda, MD.

A research and academic environment like the NINDS sounds like a perfect place for this guy. After all, his bedside manner left a lot to be desired.

 

 

 

 

The Final Straw?

IMG_0179-2

Blizzard Brody visited our state back in December, but in hindsight it was a Blizzard in name only.  Yes it snowed, but the snowfall was not intense. Yes it was windy, but no power was lost and no trees were damaged. We’ve had some cold snaps since that storm, and a few snow events, but nothing cringe-worthy. Other than the fact that we’re into March and everyone is sick of winter, it’s been a pretty tame one.

Two days ago the talking heads started hyping winter storm Edna, and people overreacted as usual. Gas stations had lines going into them, and grocery stores were being wiped clean. You see, this storm was allegedly going to dump a bunch of wet, heavy snow on the region and pack winds that could cause damage. Heart attack snow, as the guy who does most of my driveway calls it.

Accumulation predictions had grown, which got my attention, but that was mostly for the Northwest Hills. Nonetheless, I decided to work from home yesterday. After all, even though we could get 6 to 12 inches when it was over, who wants to commute in that shit? According to the forecast, the snow would start around seven in the morning, intensify by ten, and conclude by ten in the evening.  When seven in the morning rolled around, it was cloudy and dry. By ten, there was a light rain falling.

The southeastern part of the state was supposed to get most of the rain and not a lot of snow. Maybe 3-4 inches. So when it started raining, I figured the storm’s track had moved. When I finished my work later in the afternoon, it was still drizzling. A few fat flakes would occasionally mix in, but nothing was coating the roads or ground.

I breathed a sigh of relief because my son, who I will refer to as Shodan, had a heavy cold and K was battling a nasty sinus infection. I was two days removed from a stomach virus myself, so I was more than happy that the weathermen screwed up yet another forecast and I wouldn’t have to worry about snow removal that night.

IMG_0180

Less than an hour later there were white-out conditions, and it remained that way for another seven hours. Knowing this stuff was going to be saturated with water and heavy as hell, I decided to remove the snow in stages because the last thing I wanted was to remove maybe a foot of wet heavy snow all at once. My not so big blower wouldn’t be able to handle that, which meant a lot of shovel work would be required, which was simply not going to happen.

Little did I know, Edna, which was not a blizzard, would put Brody to shame. Eighteen inches of snow fell over a six or seven hour period, so you do the math regarding how heavy it was coming down. The pictures you see here don’t do the storm justice because about a third of the snow had melted by the time I took them.

The first time I went out with the blower (Shodan had already taken a shower and was down for the count) four inches had already accumulated, and it took two hours to remove it from the section of the driveway the plow guy can’t reach, in addition to the front and back sidewalks.

After I came in and collapsed on the recliner for rest in front of the telly, I reluctantly ventured out back for the next go around and there was an additional eight inches on the ground. It was at that point I knew this storm was trouble. The wind was howling, the snow was coming down sideways, and at one point, a clap of thunder erupted and a flash of lightning whited everything out, scaring the hell out of me in the process.

When I was out there, my ankle was constantly bending, and it almost got to the point where I was walking on the side of the ankle instead of the bottom of my foot. The entire leg was so weak I could barely move it, and my good leg was screaming because it had to compensate for the compromised one. The back and hamstrings weren’t pleased either.

At one point, the bolt assembly that holds blower handle was loose, which I didn’t know, and became dislodged. Half the handle was in my hand, and I could not control the blower, which was slowly rolling down a small decline, and I had to hurry to keep pace with it before it came to rest in a snow bank. How I remained upright is beyond me. I was not happy, said every bad word I know, and made up a few in the process, for a solid minute.

The immediate issue was to find the bolt and screw because if I didn’t, they would get buried in the snow and perhaps lost forever, rendering the blower useless. So I got on my hands and knees, which was a chore, strained my eyes and blindly ran my gloved hands across the driveway surface in a raging snowstorm, hoping to see or find something that looked or felt like a long bolt and large hand screw. Fortunately, this happened quickly. Now that the “easy” part was over, I had to get back on my feet.

The first two attempts failed, so I literally crawled on my hands and knees to a car that was parked nearby, pull myself up, reassembled the handle, and get back to work. Round two took almost three hours and I didn’t even attempt the sidewalks.

When I was done, it was still snowing, and my leg wouldn’t move at all. I literally dragged it behind me until I got inside, laboriously removed the boots, knee brace, the AFO brace, which actually turned out to be a detriment, then peeled off a saturated coat, hat, gloves, scarf, snow pants, sweats and undergarments in a heap onto towel laid on the floor. I trudged up those long stairs, took a shower, gingerly headed back downstairs to the kitchen and poured myself a whiskey (no ice). It was close to 11pm, and sipped my drink in the quiet stillness.

Thoughts were swirling in my head: I can’t do this anymore, I don’t want to do this anymore, I can’t physically do this anymore, and I am so tired of dealing with this.

As stubborn as I am, and as much as I try not to give into this disability, I’m not stupid, and some things can’t be ignored. Storm Edna was a cold slap in the face in that regard. Twenty minutes later I fell into bed, my body ached from head to toe, and quickly fell asleep.

To add insult to injury, we lost power early this morning. My birthday morning. Not that I was surprised. The snow had coated all the tree limbs like a coating of white wax. It was a pretty spectacular sight actually, but all the limbs were bending terribly and you knew some would eventually snap. And snap they did. Over 40% of our town lost power, but ours fortunately came back on about a half hour ago. At least I’ll be warm tonight, be able to enjoy a hot meal and take a comfortable shower.

Still, the sidewalks and the snow that fell after I came in for the night had to be removed. It was a piece of cake by comparison, but I ache all over,

So now this whole moving thing becomes serious, not that is wasn’t before, because I don’t want to go through this again next winter. The need is more urgent with no solution in sight.  Maybe we’ll have to reassess out priorities. The easiest and most practical thing to do is move into one of those over 55 communities where all the outside stuff is taken care of, but I hate that idea. Plus they aren’t cheap and I would still have to make the interior ADA compliant.

There isn’t any land available in the section of town we want that has city water, so does that mean we need to look at neighboring towns? Don’t really like that option either. But something might have to give because that clicking clock has suddenly become very loud.

Meanwhile, I will enjoy the rest of my birthday and pray like hell that the next coastal storm/nor’easter that is forecast for Monday is a total rain event. I can’t take another yesterday.

 

 

 

 

 

Think Getting Published is Easy?

publishing

I’ve written a novel. The main character has MS (big surprise), but that’s only a subplot to the story, which is about self-discovery, perseverance, family, friendship, love and redemption.

I never intended to be an author, and how I came to write this is a long story in itself, but I enjoyed the process, had the assistance of an editor along the way, and I think the end product is pretty good. Most of the people who have read it certainly think so. Who knows? Maybe this can become a second career if working regular hours in an office  becomes impossible. A guy can dream, can’t he?

But I have to get one little detail out of the way, which is getting the damn thing published, and I don’t mean self-publishing. When I finally got the manuscript finished after so many edits and revisions I lost count (at least twenty of them), I figured the hard part was over. Little did I know.

I assumed all that needed to be done was to send the manuscript out to hundreds of publishers, who would see how brilliantly I write, and fall all over themselves trying to sign me. My literary agent, who has been in the business forever and whom I trust, quickly disabused me of that idea. In today’s competitive environment, you need more than talent. You need a social media presence.

Oh shit!

Just hearing the term “social media” makes me cringe, primarily because I never believed in it, didn’t have time for it, and didn’t want to be bothered with it. E-mail and texting was more than enough for me. Unfortunately, social media numbers are necessary because the assumption is you have a built-in network to market the book to. So whether I liked it or not, I had to jump on the bandwagon. And until a few days ago, I thought I did.

The laundry list of things I needed to accomplish when this odious chore was first presented made my sphincter pucker. I needed to max out the number of friends allowed on Facebook, which is 5,000. At the time I had less than 100. This took me the better part of three months to accomplish.

But that wasn’t enough. More was required, the list of options long, and starting a blog was the least objectionable of the choices. That, dear followers, is how this blog got started. Not that I have any regrets. I enjoy doing this and have met some fun and interesting people along the way.

I also needed at least five endorsements from published authors, which took as long as it did to achieve 5,000 friends.

Those three accomplishments got me to the point where I could sit down with my agent and hopefully move forward on the publishing front. That meeting occurred on Wednesday, and the good news is that we are going to actually start the process. YAY! 

The not so good news is getting started means I also have to create a web site (ka-ching!), and get my Linkedin presence more robust than Facebook. By the way, Linkedin does not have a follower limit, so I presume I’m looking at having to get in the 10,000 range. I currently have 103. And while all that is going on, I need to get started with Instagram.

In addition to this, a marketing plan that can be sent to publishers along with the manuscript needs to be developed, which demonstrates how wonderfully connected I am, shows all the writing groups I am affiliated with, and lists more endorsements than I currently have. That presumably will occur once the web-site, Linkedin and Instagram are in full gear, along with Facebook. Getting the blog numbers up would also be helpful.

I walked out of that meeting with mixed feelings. I was happy that we are going to actually move forward with this, but all the other stuff? It’s completely foreign to me. I think I will become enthusiastic and have fun once I get into it, but right now it feels like I’m sitting in the dentist’s office waiting for a root canal.

I know my agent is right, because once it does (hopefully) get published, the foundation to market, sell and get the word out will be in place, and the news hopefully spreads like a virus.

Still, all of this for a freaking book? If I’m going to go invest all this time, money and aggravation to get the platform up and going, it sure as hell means I’m going to have to write more stories. Otherwise, what’s the point?

Wish me luck.