Category: Family

The Saddest Day of the Year

Pool

I covered the pool on Sunday, which is always a somber occasion. This episode was particularly weird, because the temps were in the mid-eighties, the humidity was high, and I was sweating profusely.

When to cover the pool is always a tricky proposition, because there are years where you could easily enjoy the water in mid to late September. Yesterday was such a day, in fact, but the reality is it was a hectic day and nobody had time for a leisurly swim. The other reality is we get far less daylight than we did even a month ago, and the evening temps will soon dip into the fifties, all of which will conspire to drop the water temperature precipitously.

There have been occasions where I’ve waited until late September or early October before completing this task. But after I froze my cojones by immersing myself into mid-sixty degree water to help remove the ladder many years ago, I vowed never to repeat that fool’s errand. It was not a pleasant experience, and I have since erred on the side of closing it too soon instead of too late, to avoid repeating it.

We call it the saddest day of the year because it represents summer’s symbolic end, and the beginning of the inexorable march to winter. The best time of the year is coming to a close, and the worst one is on its way. Plus, the pool is depressing to look at when the cover is on. During the spring and summer, looking at the sparkling blue water and colorful pool liner leaves you with a good feeling. All we have to look forward to now is the drab cover that will soon have rain and rotting leaves floating on its surface.

What makes this year’s closure particularly sad is the fact that this may be the last time we enjoy the pool. Normally, when the pool is closed you know it will eventually be reopened, and you take solace in that reality. The difference this year is that there are no gurantees that will happen next year.

We should be breaking ground on the new house soon, and if things go well, we will be living there, our current homestead will be sold, and the pool will become someone else’s property before the real heat of next summer hits. A pool at the new place will not be a priority. We certainly won’t consider it in year one, and the truth is we may never install another one.

That thought brings a bittwesweet nostalgia, because that is not only the house that Shodan grew up in, but he lived in that pool for a long time after we bought it. Conversely, so did I, and we both had a of fun in those ten thousand gallons of water over a long period of time.

Even though Shodan doesn’t go in the pool much now unless his little cousins or other company visits, not seeing that sparkling blue pool every day will represent a lost chapter of our lives. The new chapter that awaits means he has grown into a fine young adult whose journey is just starting. It represents a new chapter for me too, but my journey has a lot of uncertainties and is also a lot closer to the final chapter of my story than it was when we installed the pool.

I’m not planning on moving again unless it is in a hearse, and I will be visiting a new decade when my birthday arrives in March, so not only am I feeling my mortality. I’m also feeling a tsunami of sentimentality at the passing of such an innocent period of time.

So the saddest day of the year was more melancholy than most. Change is coming, which is not always a bad thing. But when you open the door to change, another door closes as you walk through it. Memories of birthday parties, and Santa Clause, and frog ponds, butterfly bushes, and that pool will be all that remain when that door clicks shut.

It’s part of life, I know, but in covering the pool, we also wrapped that part of our lives in a burial shroud. I’ve never given that much thought because I try not to waste energy and emotion dwelling on stuff that hasn’t happend yet. But putting the pool to bed for the winter was more than symbolic. For me, it made everything we are planning feel very real for the first time.

The sense of loss is palpable and lingers, but I know that will fade once we start seeing the new homestead rise from the ground and feel the anticipation of something new. For now, there is nothing new, we haven’t broken ground, and a large part of our life is under cover, perhaps permanentaly.

It’s a sobering feeling.

 

 

The Three Magic Words

Happy

“I love you,” are not the three words men most yearn to hear. This may have been the case early in our courtship when we were drunk with love and romance, and the mere mention of these words would make our hearts flutter and groins stir. No, as the relationship matures and the question of love is no longer debatable, those three words are supplanted by a new trio. These words always turn our heads away from the television, the I-Pad, or otherwise remove our focus from whatever world we currently inhabit.

These words have the same effect as a cold shower, but in a positive, refreshing way. Instead of pretending to pay attention but only hearing wah wah, wah wah wah when our wives or girlfriends are talking, and our attention is divided between whatever it is they are saying and the sports page, we snap out of our stupor in a nanosecond and focus like a laser beam on the conversation we were mostly ignoring. What are these magic words? You….are….right!

Now don’t get me wrong, I’m not minimizing the significance of “I love you.” I never want the day to end without saying those words to K or Shodan. Even though we sometimes say them with the same gusto as “honey I’m taking out the trash,” they are nonetheless meaningful, and shame on the poor fool that takes them for granted.

But to hear, “you are right”… is almost orgasmic because it’s so rare. Not winning the Powerball rare, but more akin to witnessing the perfect sunset, observing an underground lake, or discovering crop circles, where an intrinsic feeling of wonderment and awe overwhelms the senses. It puts a spring in our step, gives us reason to have faith, and otherwise makes us feel that perhaps we not as obtuse are we are led to believe.

Most women I know would derisively scoff at this premise, flatly stating that the reason we don’t hear this very often is not because they are loathe to admitting this. No, the reason we don’t hear these words very often is simply because we are right about as often as you’ll see polka-dots on a zebra.

I don’t remember that last time I had to choose between being right and being happy, primarily because I don’t keep score. If I’m rational, I will choose happiness, be satisfied in knowing that I’m right, and not belabor the point. I’d much rather concede the issue and keep the peace because I know that if I let my stubbornness get the best of me, and it’s usually over really stupid inconsequential shit, I may win the battle but lose the war. You see, the thrill of victory is fleeting and once the narcotic wears off, the hangover sets in. I’ll realize I’m deep in the doghouse, and for what?

K will still think I’m not only wrong, but an insensitive flaming asshole to boot, and is now doubly pissed that I disputed her omnipotence. I’ll cower like a scolded pup, wonder how the hell I did this to myself (again), apologize after an appropriate cooling off period, and swear upon everything I hold sacred that I won’t put myself in that position again.

Later on when the dust has settled and I’m alone I’ll replay the events, be my own judge and jury and render an unbiased verdict on the matter. More than half of the time I’ll concede I was wrong, but the ratio is a lot closer to 50% than 0%.

In the end it doesn’t matter, and all I can do is wait for the next time those three magic words are offered without prompting or hesitation, and bathe in the warm glow of redemption.

 

I’m not sick…I’m healthy impaired

I don’t recall exactly how I came across Billy Mac. It was either through a fellow blogger (probably Grace) or he happened to stumble across one of my posts and liked it, which prompted me to peek at his blog, Superman Can’t Find a Phone, where I read this.  https://goodtobealivetoday.wordpress.com/2018/02/08/hell-what-do-i-know/

I was hooked and have been following him ever since. Billy is a hell of a writer. He’s insightful, brutally honest, self-depreciating, and laugh out loud funny. I love his perspective on people and life, so much so that I extended an invitation to him to grace the pages of my blog with his candor and wit. While I have never met him, although I hope to some day since we both live in New England, I consider him a friend who is among the band of brothers and sisters I have met through the blogging community.

If you have never read his stuff before, please take the time to visit his site and take a look. You will be glad you did.

Thanks for sharing Billy.

 

My name is Billy Mac and I am honored to have been asked by Steve to guest post on his blog. Steve is an excellent writer and a supportive member of our blogosphere and I am happy to have discovered his little corner of the internet. We faithfully read each other’s work, share experiences and there is always a positive takeaway from our back and forth. Although it tends to break convention, I think of him as a friend though we have never met in person. He’s a good guy with a great story.

As with most connections, the question may be asked: “How did you and Steve find each other?” The answer is simple, we have a common connection, and that is Chronic Illness. Steve has MS, did I mention that? Steve’s blog is about the trials and travails of living with MS, it’s right there in the title. I didn’t lead with it because it’s only a part of who and what he is.

As a relative newcomer to the Chronic Illness community (I’ve actually had Kidney Disease for decades, but I only just accepted it on, what time is it? Yea, not that long ago) I am drawn to, and consequently follow many Chronic Illness bloggers. Many of these blogs were initiated by people like Steve and I, who have a condition that has affected our lives so profoundly that we want to share it, to inform others of it, or just reap the cathartic benefits of “putting it out there” to a world of anonymous, faceless strangers to read. Many bloggers with Chronic Illness are considered fine resources for their respective conditions with personal expertise in symptom management, links to journals, studies, and news updates. But if one were to bypass reading a blog because it is tagged “Chronic Illness” you would be passing on a great opportunity. I liken it to watching the evening news, seeing a teaser about a positive, uplifting human interest story and then changing the channel. You’re missing out. They tell a great story.

Sure, we write about our illnesses. But not exclusively. We write about our lives in all of its mundane details. We have jobs, we have families, we have social lives and we write about them just like everyone else. The twist of lemon, the ingredient that makes these blogs special is how our conditions impact, shape and affect us as we live our lives.  For example, Steve recently posted about the Blizzard that he (and I) had to clean up after last week. He told us about the ordeal of shoveling all of the snow. No big deal, right? Not really, until you remember that Steve has MS and that not only is he prone to fatigue but he has recently dealt with the minor nuisance of one of his legs simply giving out unexpectedly. It’s just another symptom to Steve, one more challenge in his daily life. But to the reader, his shoveling of snow just graduated from an ordinary chore to a goddamn human interest story. You will find such examples of illness permeating the everyday lives of normal people in all of these blogs. It’s easy to call them inspirational. They are, but at the end of the day, they are just regular people living their lives and not giving in to the challenges their illness throws at them. The resilience of the human spirit simply leaps off of the pages as they write.They are defining their situation before it defines them.

I am the author of Superman can’t find a phone booth and I”m a great story. I’m a great story only because I’m looking down at the dirt and not up. You may wonder where the Moniker of Superman came from. I assure you that it’s not born of inflated self-image. It is instead a very unflattering nickname sarcastically bestowed upon me by a loved one in recognition of my Superhuman ability to deny my illness. I was sick for decades but I didn’t take it seriously. I put on a good face for my family (to not worry my kids) and I dealt with my symptoms. My doctors said that I was in denial, they would later say that it worked for me. On the verge of dialysis, I received the best gift anyone could ever give, the gift of an organ donation. I had a kidney transplant and went on with my life. Then, out of the blue, the new kidney began to fail. And here I am, at the end of a long, downward spiral. I named my blog Superman can’t find a phone booth because I see myself as a strong person on the inside but without an outlet to express and release my inner self. With no phone booths in sight, I turned to the blog. Despite losing my house, my family and my career to my disease, I now find myself in a good place. With nowhere to go but up, I have a whole new outlook that I am sharing with anyone who visits my blog. I have accepted my illness and I am embracing the changes that I and my fellow bloggers with an illness are experiencing. I am part of a community. One that understands me, supports me and has watched me grow. I, in turn, support my peers and monitor their growth.

What are the takeaways from immersing yourself in the daily life of one with a chronic illness?

Here are some of mine:
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“You either get busy living, or get busy dying”
Andy Dufresne, The Shawshank Redemption

Be grateful.A dear friend of mine, who also has MS once told me that having MS was a blessing of sorts. I initially rejected this notion but I have come around. It has taught her, and myself, to be among other things grateful. Grateful to be alive, to be in a position to be a resource or maybe even an inspiration to another, grateful to understand the value of things that others take for granted.

Every day of your life matters. My doctor recently told me that I, with the help of modern medicine, may live 20 more years. The clock is ticking. This makes sitting around doing nothing a massive waste of precious time. No matter what I am capable of doing today, it is unacceptable to do nothing. Set goals, try to reach them. Better to reach for the stars and drag your feet on the rooftop than to reach for the ceiling and drag your feet on the floor.

Do something with your life. I would rather live 60 fulfilling years than live to 92 and have done shit with my life. Imagine yourself as a fly on the wall of your own funeral. What will people say about you? How many people will show up? Will you be remembered as a burden or an inspiration? Did you die the friend, husband, wife, son, daughter, co-worker and citizen you envisioned yourself to be? Write your own eulogy daily by cementing your legacy in every transaction.
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Leave nothing on the table. This is not just for the chronically ill. Some of us have a fast-moving Chevy meant for us. Don’t wait for tomorrow to do what you can do today. Make that call, take that road trip, pretend that “rainy day” is today. Tell people how you feel and leave them as if you’re never going to see them again. Talking to their stones simply sucks, granite can’t talk back. Everyone in my life knows what they mean to me.

Enjoy the moment. When you have your own mortality on your mind, even shoveling snow can be a moment. While I was shoveling snow last week I stopped to take a break. My heart was racing and my back hurt. As I collected myself I looked around and took a deep breath and truly absorbed my surroundings. It was a beautiful day, I wasn’t cold and it occurred to me that I didn’t have an unlimited amount of these moments, so I breathed it in and savored it.

Be your own advocate, but believe in hope. With advances in modern medicine, there is a potential cure for every disease, and I really hope for one for everybody involved. Steve has written extensively about being your own advocate, knowing your condition and learn all that you can about your condition. Sometimes doctors get it wrong. When I had my transplant, I was given a lot of information of what to expect. I was not told that my disease could potentially attack my new kidney and put me back to square one. Well, that is exactly what happened a mere 5 years after my surgery. I was furious at first, I felt like I was given false hope. But then I reflected on what I accomplished after my transplant. I attacked life. I rode a mountain bike and crashed it gloriously time and time again, every time I got up and kept riding. I hiked, I worked out, I treated my body like I wanted to live forever. If my doctors had told me about the potential to lost it all, I may not have done any of it.

Don’t focus on the “used to’s”. The “used to’s” are a major downer for the chronically ill. It is tough to reflect on what you used to be able to do before that you can’t do now. It is a reality we have to contend with. But at the end of the day, it’s dangerous thinking. Focus on what you can do today and do it well. When you can’t, you will deal with it.

Deal with it. At the end of the day, it comes down to one thing, how well you deal with what life throws at you. Some people out there clear some pretty major hurdles in street shoes just to get through a Tuesday afternoon. When I wake up and I only have brain fog, nausea, leg cramps and fatigue from waking up 10 times the night before it’s a good day. And that is nothing compared to the struggles of some.

Chronic illness has changed who I am. I am not only a different person, I am a better person. I listen more than I talk. I appreciate more than I criticize. I do more and procrastinate less. In the time since I started blogging, I have grown from a state of despondency to one of purpose. I think I am where I belong. I am working less and volunteering more. Wanting less and receiving greater rewards. In the process of downsizing I have achieved the real, the quality I have been searching for in my life. The prospect of death has improved my mortal campaign. I don’t fear death anymore. But I am simply terrified of the prospect of not living a full life.

One of my favorite quotes is “Be kind, for everyone you meet is fighting a hard battle.”
As a firm believer in this and an avid people watcher, I always look at a person and wonder what their life is like. But like most, I can’t always tell who is struggling and who isn’t. That’s why you’re encouraged to be nice in the first place…you don’t know. But if you had a way of finding out wouldn’t you want to know their story, maybe find a little inspiration? Something to make your own problems a little more ordinary? You can. Just by going to WP reader and punching in “Chronic illness”. You will have at your disposal as many “human interest stories” that you can handle.

We don’t want pity or sympathy, we just want our stories to be heard. What you take away from them….well, that’s up to you.

The Guilt of Living with a Chronic Disease

guilt

The most unexpected emotion I’ve encountered living with MS is feeling guilty about it. It’s infuriating because I obviously didn’t sign up for this. And I know the cliches: it isn’t your fault, you can’t blame yourself for this, shit happens, blah blah, blah blah blah. I get it, but that still doesn’t negate the fact that guilt is one symptom of MS I never expected, and it pisses me off.

I don’t want to give the impression I’m consumed by this, because I’m not. I also understand this sentiment is irrational. After all, I still work and “provide” in that sense.  I’m not an invalid by any stretch of the imagination, and I contribute to running and maintaining the house any way I can. An argument can actually be made that I too often push myself more than I should. So from an intellectual perspective, I understand that there is absolutely nothing to feel guilty about.

Unfortunately, the emotional reality keeps getting in the way, and often strikes like a lightning bolt.  First of all, I’m obviously not the guy I was ten years ago, and no matter how you rationalize, I can’t escape the truth that I can’t do a lot of the things with my loved ones I once took for granted. Simple things, like going for walks and riding a bike, are difficult to do and in some cases are impossible. Even holding hands while waking is hard because I trudge very slowly, and it throws my balance off.

I need more physical space than the average bear to maneuver, and people in the know  often step aside or give me the right of way in tight quarters because they know I don’t walk in a straight line, can’t stop on a dime, and they don’t want to bump into me and potentially cause a fall. Add that to the list of things to feel guilty about.

I’d wager that watching the freak show of me doing anything that requires physical dexterity is painful for anyone who looks. I know K worries about me constantly, and I suspect my son does as well, although he never broaches the subject. So I feel guilty about that too.

Maybe I’m projecting subconscious insecurities about my present and future onto others. Maybe this is a subconscious way of feeling sorry for myself, but I sure as hell hope not because I swore I would never to do that.

As I’ve grown older, I’ve discovered that my father and I are two peas in a pod, and this is a perfect example.  He never wanted to be in a position where people had to cater to him because of failing health. He’d tell us more times than I care to remember that if we ever found him unresponsive, to make sure he didn’t have a pulse before calling 911. Of course, Dad was in his 90’s by then, and never thought he’d make it that far. He had been blessed with good health all his life and was sharp as a tack until he passed away at the age of 96, but the chinks in his armor started appearing several years earlier, and that concerned him.

The bottom line was he never wanted to have anyone disrupt their lives because of his health. I thought he was being ridiculous at the time, but I certainly get it now. He didn’t want to deal with the guilt of being a burden, and that is the crux of the issue for me.

I don’t care what anyone says, when you live with a chronic illness like MS, you become a burden, because people in your life have to pick up the slack for the things you can no longer do. They might not think of it that way, but I do.

Guilt comes with the territory. I don’t believe I’m the only person living with a chronic condition who feels that way, but would love to know if I’m in the minority.

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