The Day Death Was Near

Wave

This is a story about allowing your mind to write checks your body can’t cash.

I don’t think I’ve even shared this with K, primarily because I know what she would say, and I’ve done enough self-flagellation. The long and short of it is that when you have any kind of disability, there are things you know you probably can’t do anymore, and it’s never smart to test that theory. I wasn’t smart one summer afternoon almost four years ago, and my consequence could easily have been tragic.

We were vacationing at Martha’s Vineyard, and Shodan and I were at Lucy Vincent beach while K and her girlfriend were out and about. The surf was rough, as it had been during our entire stay. There is a color coded display as you walk on the beach that describes the water conditions and what they represent in terms of surf, undertow and things of that nature. If the color of the day is red, the beach is closed. If it happens to turn red during the day, lifeguards do their best to get everyone out of the water.

On this particular day, about half-way into our trip, the color on display was one or two levels below the “do not go in” threshold. In fact, it had been that color for our entire stay. I don’t remember the exact color, but you get the point. Any fool could see that the waves were impressive, and the sound they made crashing into the beach was loud. The conditions were perfect for anyone who was into body surfing or had a boogie board. If I remember correctly, there had been a handful of people on surfboards during the previous days.

Shodan had been living in the water and was having a blast. He’d periodically call out to me to join him, but Smart Steve had resisted the call. He had ventured into ankle-deep water on a handful of occasions, and needed the cane to stay upright because the undertow was strong and the waves would occasionally crash on his legs. Smart Steve knew that if he was having a hard time in ankle deep water, going out any further would be a fools errand, particularly when he considered the fact that the tide was high and a handful of very large rocks scattered about the ocean floor, easily visible during low tide, were currently underwater.

But Foolish Steve wanted in. He hadn’t frolicked with his son all week, and knew that once he got out to about chest level, and beyond the crashing waves, the buoyancy of the water would mitigate his symptoms. Once in, he could maneuver around easily in the zero-gravity like environment, bob like a cork on the water, and enjoy the experience. The more he thought about it, the more sense it made, so Foolish Steve plotted his strategy.

Limping back to his blanket, and almost stumbling as his foot caught in the fine sand, he ditched his cane, trudged out to the surf, and waded in. Spying a large oncoming wave, he half-dove half-fell directly into it, and swam out to sea. Feeling his body rise and fall with the incoming surf, he stopped shortly thereafter, when it became obvious he had cleared the worst of the waves. Standing up in neck deep water, he surveyed the scene, saw he was well beyond the danger zone, moved closer to the shore until the water was chest deep, and stood upright.

So there I was, basking in the bright sunlight, enjoying the feel of the cool water on a warm summer day, watching the gulls fly overhead, and the mist of the surf that had crashed upon the beach drift into the cliffs. I could move freely and not feel clumsy, which allowed me to rough-house with Shodan for an extended period of time.

When it became time to return to my blanket, I had to plot an exit strategy. The smartest thing to do would have simply been to have Shodan guide me to the shore, and once it was shallow enough, walk toward the sandy beach with him leading the way, my hands on his shoulders. But, I was feeling my oats, let my bravado overtake common sense, and decided to body surf my way into shore.

This strategy worked temporarily. The first wave didn’t get me very far, so I emerged and tried to stand upright to prepare myself for the next one. I only managed to get one foot planted, and hadn’t yet taken a full breath, when the next wave slammed me from behind, and plunged me into the cauldron.

Since I was off balance to begin with when the wave hit, my feet were nowhere near the ocean floor as I was being rolled around like I was in a washer’s spin cycle. I thrashed around, trying to get my body upright, but not having the use of two good legs was a detriment. I became disoriented, but the bottom of my foot luckily scraped against the ocean floor, and I was able to dig one heel into the sand. To say my adrenaline was pumping is an understatement. That temporarily brought the spin cycle to a stop.

I tried to get both feet planted and lift my torso out of the water so I could take a breath, but another wave crashed and spun me around some more. Somehow, I remain calmed and held my breath. I think subconsciously knew I was close to shore, and that if I could hang in there, something would touch the ocean floor again. I’d be even closer to shore, which might allow me to get on my hands and knees, and at get my head out of the water.

If I had I panicked, I would have inhaled water and, with the boiling ocean tossing me around like a rag doll, drowned less than twenty feet from shore. The problem was that this particular spin cycle lasted longer than the previous one. My lungs were burning, and I realized that if I did not get air soon I’d be in serious trouble.

Fortunately, my back and butt scraped the ocean floor. I instinctively managed to get on my hands and knees, knelt upright, and poked my head out of the water. My eyes, which had been closed tight throughout the ordeal, popped open as I gratefully took a deep breath. I was still a little disoriented, but once things came into focus I could see I was facing out torwards the open sea and was immediately greeted by another wave, which hit me in the face and threw me backwards a few feet. Fortunately, my mouth was closed, and it was shallow enough by that point where I could extend my arms and push myself back onto my knees.

Shodan was in deeper water looking around to see where I was. I wasn’t sure if he had noticed what happened or recognized the trouble I was in, but his eyes locked onto mine and he smiled. I called to him and he free-styled over. When he arrived I placed him in front of me, stood up, placed my hands on his shoulders and had him lead me towards the safety of the beach. As we approached the shore, my legs, which were trembling slightly, could feel the strength of the incoming waves and the force of the undertow. I also noticed that the large rocks I had mentioned earlier were a short distance from where I finally emerged from the angry sea. If I had crashed upon those as I was being tossed around, it would have been game, set, match.

Arriving at our blanket, I sunk into the beach chair and grabbed a towel while Shodan ran back into the water. The gravity of what had just occurred hadn’t fully registered, but I knew that I was very fortunate to be breathing.

Looking back at this, I don’t remember how long I was submerged and helpless. I think it was somewhere between half a minute and a minute, but it felt much longer. The experience was harrowing, to say the least. Had I been able to fill my lungs with air before the first wave hit, the situation might not as felt as desperate, but I didn’t have that luxury. I couldn’t see anything, felt like a tumbleweed in a tornado, and was trying to stay focused so I wouldn’t do something to compound my stupidity, like inhale. Fortunately, I didn’t run out of time.

It’s funny what you think about when confronted with something like that. I remember being embarrassed that I might die on vacation in less than six feet of water, and the scene that would cause. I worried terribly about K, Shodan, my parents, and what this would do to them. I also remember thinking K would want to strangle me if she knew what was going on.

The surf did not subside during the remainder of our stay. Needless to say, other than walking along the beach, I did not step foot in the Atlantic again.

That day taught me are there are certain lines you don’t cross. I already knew that, but did not think of myself as a disabled person. I thought my symptoms might have progressed, because walking was a little harder, my limp was more pronounced, and my balance seemed more tenuous. But my progression was so incrementally slow, I wasn’t sure if this was real or my imagination. But walking in the fluffy sand was much more difficult compared to our visit the previous year. That should have been all the confirmation I needed to understand the progression was real, yet I still ventured out into that tempest. Maybe I though I was bullet-proof. Whatever the reason, it was a foolish, arrogant and reckless act.

I was lucky to survive it.

 

 

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 ( https://waltswritingsonlife.wordpress.com )   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.

Marriage and MS

IMG_0277

Steve has asked me to guest write for his blog. So here it is, from the spouse’s perspective. As I write this, we are spending the day at Yale Smilow Cancer Hospital, where Steve receives his infusions. Walking around this facility, it’s difficult not to be humbled. I found myself strolling behind a preteen girl riding a motorized wheelchair sporting a Make-a-Wish back pack. I ached for the young woman, perhaps in her early twenties, laboriously shuffling along with her walker, determined to make it to the infusion chair on her own, as well as the brave young boy, no more than eight years old, hooked to the apheresis apparatus.

Once the nurse found Steve’s vein on both arms, and the process began, I sat with him to chat. It’s a boring procedure, as he must stay awake while squeezing a rubber ball to facilitate blood flow. I’m not good with blood, but I’ve become accustomed to bearing witness to such things. I’m thankful that I wasn’t there for the visit where the machine malfunctioned, spilling blood all over the place.

Steve and I have been married thirty years, and during that time we’ve gone through many happy moments as well as more than enough difficult times, thank you very much. I am also well aware that we are blessed, and many people have been dealt an even tougher hand.

I often joke that one man is quite enough, but in reality, I believe that marriage is sacred. Marriage is tough, and many nuptials succumb to real-world pressures. As young couples, we bask in the joy of a wedding, never really thinking about the actual wording of those vows. Few of us realize the importance of “through good times and bad, in sickness and in health.” If you stay together long enough, none will escape the bad times, and rarely will a couple avoid the sickness part. It’s not easy.

In our case, I was the partner with the chronic ailments – migraines and stomach woes were part of the deal. Steve was supportive and steady, plodding through whatever came our way. While I had more endurance for pushing myself through exhaustion and icky days, Steve was hardier. He went about his day, living on little sleep (I can’t even argue about it anymore), and enjoying good health.

So, when he first described his initial symptoms, I urged him to see a doctor. And when the initial diagnosis came back as “tight hamstrings,” I said bullshit, and sent him to another. When he was formally diagnosed with MS, my initial feeling was shock. My friends acted like it was the end of the world, and yet, a part of me knew that Steve would take this on as he had everything, strong and steadfast, placing one foot in front of the other. Little did I know, that this would become a metaphor for his life, as he struggled to simply get around.

Having said that, my husband can be a pain-in-the-ass, and MS has made him even more so. He refuses to get enough sleep, he pushes himself when he shouldn’t, and he argues with me every time I urge him to pass on the heavy lifting to our son. “I can do it!” he’ll say. He reminds me of a stubborn toddler. I try to understand that it’s a matter of pride and independence, but really, we all have to let go of those twenty-year-old capabilities.

Speaking of arguing, my once easy-going, go-with-the-flow man, isn’t flowing anywhere. I swear what Steve has lost in physical ability he has gained in debating acuity. I say black he says white, my apple, his orange. You get the point.

After knee surgery, I hobbled around with a cane. My shoulder ached, my back felt out of whack, and I couldn’t imagine dealing with this, Every. Single. Day. It gave me a brief glimpse into what he must endure, dragging that leg around, and yet, try as I might to be patient, I sometimes find myself annoyed when he blocks me into a corner, or walks right in front of me, necessitating a quick pivot around him. All in the name of balance. Or his lack of it. Secretly, I think there are times he uses his MS, perhaps not even consciously. “Honey, why don’t you just throw the cat food can in the garage bin?” “I want to conserve my walking.” I don’t always understand how six more steps could make a difference, but then if every step is a feat of balance, and he’s tired on top of it, I suppose it does.

And then there is the worry and angst. Worry about his health, worry about my ability to take care of him and our family, worry that this horrible illness might break his spirit; and angst from watching him struggle. Sometimes it actually hurts to watch him walk up the stairs. Other days, I want to scream out loud when I see him schlepping around the yard, dragging a garden hose or carrying something cumbersome. Sometimes I do. “Let Shodan carry it,” I yell out the screen door. “I can do it myself,” the toddler screams back.

And then, when I find myself exhausted and frustrated, and even a bit pissed, taking care of the house, my mother, my son, meals, laundry, house maintenance, I try to remember to take a breath and count my blessings. Steve is still able to work, and this affords us a nice standard of living. His MS has progressed, but not as quickly as it could have and may still. When I find myself panicking about the future, I try to embrace his idea that whatever may come will come. Most important, I know that we are in this together.

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