Marriage and MS

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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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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.

Writing Into an Identity

Flowergirlink

Susan’s story is an inspiration. When I discovered her blog, I was immediately struck by her poetry that is beautiful and moving. While I never considered myself a huge poetry fan, I’ve long admired poets because they paint pictures and elicit emotions with an economy of words that is impressive. I was also intrigued, amazed actually, by the presumption that she was totally blind, and could craft such wonderful art. I soon learned that Susan in not completely sightless, but that that doesn’t make what she does any less impressive. I admire her perseverance and tenacity.

If you enjoy poetry, please visit https://floweringink.wordpress.com 

And if you don’t, visit the site anyway. If you’re like me you will be instantly converted.

Thank you Susan.

I discovered Steve’s blog through another blogger, and when I began to read Steve’s posts, I felt through his words a succinct determination, gentle honesty and a real desire to help others.  I find all of this incredibly admirable, and as I read more, I found his humor and strength and an atmosphere of camaraderie.  It was an incredible honor to me when he started to read my blog and then invited me to write a guest post for his.

I can’t deny I am a bit nervous to be a guest here, but more than that I am excited to have been asked.

I am a poet and a writer.  I am married to an Irishman, and we have 2 pugs and 2 cats.  We live in Hollywood, surrounded by an array of interesting characters that often appear in my poems and stories.  I also have a degenerative retinal disease called Retinitis Pigmentosa.  I am going blind.

I grappled with what to write about for this post.  RP seemed an obvious thing, but it doesn’t stand alone.  It isn’t something I hold at arms-length and look at objectively.  It doesn’t define me, but it is part of me. It has become a constant pattern in the fabric of my life, one I didn’t choose and never would have chosen, but one that is indelibly tattooed on my existence.

On the day of my diagnosis, my life changed. RP crept beneath my skin. I couldn’t deny it or shrug it off; it was here to stay and I had a choice to either let it destroy me, or to accept the reality of it and figure out how blindness was going to mesh with my life. It was to be a long and harrowing path littered with obstacles, both literal and figurative.  I felt like my identity had been shattered and I was tasked with finding the pieces and creating something new from them.  I began the journey of learning to become a blind person. Or at least that’s what I thought at the time.

The first 7 years after my diagnosis, I continued to work as a Human Resources Manager, struggling to cope with my disease, while keeping it a secret.  During those 7 years, I came home almost every day, exhausted from over use of my eyes and unable to do anything but lie on the couch, in the dark, because I was in so much pain.  At the time of my diagnosis, I had 50 degrees of peripheral vision (This diagram is a good example of the human visual field), at the end of those 7 years, I had 25 degrees; I had lost half of my remaining vision.  I decided to stop working.

At the time of my retirement (as my husband calls it), I had the grandiose idea that I was going to write full time.  From a very early age, I had a dream of being a writer.  I had always felt like a writer, even declared myself a writer, but the writing itself was inconsistent, at best. I had a few poems published in my early 20’s, but life pulled me under its wheels and my writing voice turned into a whisper. I was a writer who didn’t write. That would remain the case for some years.

When I stopped working, it became clear that I hadn’t really dealt with my RP.  I hadn’t allowed myself the time, and suddenly, I had nothing but time.  I decided I was going to write a book, that writing would be the best way to figure out how to piece together the identity of a visually impaired woman.  Day after day, I sat down at the computer and nothing happened.  I couldn’t feel my voice.  I had no idea who I was.   It was as if everything I had been before RP had gotten demolished by the looming presence of a disease I couldn’t face.

In an attempt to get motivated about the book, I started my blog.  My posts were few and very far between.  I wasn’t looking at myself from a writer’s perspective, I was looking at myself from a blind perspective. I was no longer a writer, I was a blind woman trying to write because I felt I had no purpose; I became weighed down by feeling empty and lost myself in the process. I felt like a failure and a fraud. Then, an old friend of mine made a suggestion that changed my life.  She told me to step away from the blog and go back to what first made me fall in love with writing.  I followed her advice and fell back into the arms of poetry.

I felt my voice return and my passion for language resurface.  I remembered why I had always dreamed of a writing life, why I had fallen in love with words.  I felt my pulse flow onto the page.  I was able to write about RP, to face the reality of it with what felt like a brutally beautiful honesty. I wrote about blindness.  I wrote about my family and my neighborhood and the world around me.  In the return to writing poetry, I rediscovered my passion and it made me feel braver.  I returned to the blog and started posting regularly. I found a writing community that is generous and inspiring. I started sending my poems to journals and magazines and I started getting published again.  It was a true awakening.

It turned out the journey wasn’t one of becoming a blind person, it was one of becoming myself, but I can’t deny that RP played a significant role in leading me back to writing and helping me write into an identity that had been lost.  RP isn’t something that I have and it isn’t something that has me.  Like being a writer, it is simply a part of who I am.

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

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.

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.

 

 

 

 

Advice from Tom … Get it Checked

Steve invited me on the show to talk a bit about health. I don’t really know anything about health. But my wife owns a stethoscope and I found a mask under the bathroom sink. Let’s get started. Tom. On Health.

Steve and I discovered each other, recently, through a mutual blogger. As these things go, he and I were impressed with each other’s content, each other’s body of work. I dug into his stuff about the same time as he dug into mine. I admire his writing style. Descriptive, informative, never dry. I love the way he subtly discovers his own path back to balance when he feels off course. I can relate to that. A good example was in November, when recent posts of his own prompted him to get back to the upside of down things in “Sunshine and Rainbows.” No matter what life throws at us, we have a choice on how we react. Life threw MS at Steve, but it never beat him down. Not once. In fact, just two days ago he plowed the snow. Really? Steve, we do have limits. Someday you’ll learn yours. Maybe. 😁

Last week, out of the blue, Steve asked if I’d be interested in doing a guest blog for his site. I love to write, and have always sought balance in the number of posts I do in a week on my own site, so I said “sure!” Of course, Steve founded his site as a means to share his journey with MS with “candor, humor, and brutal honesty,” so I said “you know I don’t have MS, right?”

In fact, I have had only two light brushes with the world of MS. A few years ago, when I signed up to Facebook, I reconnected with all my old high school/church group friends. One of them, a little sister to a close pal, whom I helped recruit into the group, had been diagnosed some years earlier. On Facebook, she would tell peripheral stories of days with it – of transfusions and immobility – but I never knew the depth of her ordeal. I only know it never seemed to break her kind and giving spirit.

The only other encounter I’ve had with MS was when President Bartlett revealed his struggle with it to the nation. I was aghast. He was the only president I ever really liked.

Steve said, “of course, I know that. Doesn’t matter, Tom. Be Tom. Do what you do.

“But keep it to the matter of health, if you can, in some way. That is the central theme.”

That created a challenge for me. As I’ve stated recently on my own site, I’ve visited the doctor twice (for checkups) in the last decade. And then back in high school, 30 years ago. Except for the occasional walk-in clinic visit to make sure rib or back pain wasn’t too serious, or to get something prescription-strength for a bad cold, I just don’t have any health-related experiences of my own. That’s a blessing, I realize, so not a complaint. Nonetheless I have opinions. I’m bigly in favor universal healthcare, the kind we see in what I call the “better countries” around the world. I also want to believe in the science of longevity, the likes of which Ray Kurzweil speaks about. I want to live forever, as impossible as that will be.

If invited back for subsequent visits maybe I’ll talk about those things.

But it hit me yesterday, while in the shower (don’t all breakthroughs come from there?), that I had a health-related story from last year, and maybe a lesson to teach. It isn’t about me. It’s about a friend. A co-worker. We lost him in 2017.

He didn’t die. I should point that out right away. But we haven’t seen him since the week after Memorial Day. And it was for the smallest of reasons. Well, it started small, but it damn near killed him, and it certainly changed him. We fear forever.

I’m in appliance sales, and this man was our delivery chief. Just as amicable a guy as you could imagine. And incredibly competent. I don’t believe he missed a day of work in 7 years. Strong, both physically and emotionally. Smart. Funny as hell.

The last day I saw him was the second day of a toothache. Not a normal toothache, but the kind of toothache that swells one entire side of your face. I never saw a toothache do that. For the second day in a row I warned him that he had to get that tooth looked at, or it could be really, really bad. He worked through.

The next day was my day off. The others at my workplace said he showed up, more swollen than the day before, and was sent home. “See a doctor, or don’t come back,” the boss told him. He saw a doctor. The doctor told him he’d never seen a tooth condition, swelling, or infection that bad. They gave him medicine, told him not to return to work right away, and wanted to see him again after the weekend.

Over the weekend, he nearly died.

Someone found him in his living room, looking like he’d already passed. They broke in through a bathroom window to get to him, because he hadn’t answered his calls. His face was so swollen he was unrecognizable.

Over the course of the next few weeks, the doctors induced coma and put him through 6 surgeries to go after the infection. He spent weeks in the hospital. The last I heard they were still waiting for the infection to go down enough to go after the tooth, and that was a further few weeks after his release.

I’ve tried to call him. We’ve spoken to his mother, whom we all know at work. She tells us that she passes along our thoughts and prayers to him, but no, he doesn’t want to see anybody right now. We ask that he stops by sometime, to see us. She says that he says he will. Sometime.

I have mutual friends who have run into him, about town, so I know he gets out. I know he’s recovered (or is recovering) physically. They all tell me the same thing: “he’s not the same person we knew.”

He doesn’t want to interact. To talk. To quip jokes as he does. As he did. His mother says that he suffers from a form of PTSD from the experience. Depression. Anxiety. Nightmares and stuff. It broke him.

I did some reading up on PTSD after that and learned that 80% of all sufferers are only afflicted for a short time. I’m hoping this is one of those 8 out of 10 situations. I hope my friend returns someday.

I told you earlier that I’ve only seen a doctor twice in ten years. The last time was last week. I have a clean bill of health, so far, but there are still blood tests to run, and that colon thing to do this summer when I turn 50. Who knows. I may yet be a man of perfect health. But this thing, with my friend, was a reminder, and I’ve learned a lesson.

He’s a good dozen years younger than me. He never had to go to doctors. He was smiling and happy and ready for whatever life threw his way. And then a bad tooth upended his world.

It can happen in an instant, we all know that. But when it’s happening over time, when there is something that we can do about it, our body will tell us. His body told him about his pain for months, and he ignored it. My body said nothing for decades so I’ve ignored it. But I will ignore it no more. Annual checkups. Taking heed of the pains. Exercise. Cutting back on the red meat. Less beer.

I’ll do most of those. 😉

But I beseech you, out there, do the same. Don’t let it go. Get it checked. The smallest thing can be the biggest thing. Don’t be afraid to know. The worst thing that can happen is you can find out you have something. If you do, you’ll find a way to deal with it. Steve has. He found out he had something. He’s learned to live with it. Learn from his example.

Our lives may change. Our lives will change as we get older. Guaranteed. But when we know what ails us we can have more control over that change. If we don’t, that change can upend us. Sometimes, when we are upended, we never come back.

So, that’s my health-related story. I want to thank Steve for letting me tell it. For inviting me on. I hope I’ve entertained a tad, educated a bit, and didn’t make a fool of Tom. I hope to be invited back.

Honestly, I haven’t even attacked the pharmaceutical companies yet. 😎