Monday, December 22, 2014

It's Not Supposed To Be This Way


“The future lies sparkling ahead... and we thought we'd know each other forever.”
-Sleepers (1996)
 
Of all my friends, Adam Wight always reminded me most of my Mom.
He was almost a foot and a half taller than her and probably weighed twice as much but there was something about his personality and the conversations that we had, that always struck me as so Fran Wentinkish.
In school, at work - really, anything I did – to Adam - I had the Midas touch.  He was always so proud of my life and much like my Mom, the praise he heaped on me was almost to the point of happy embarrassment. 
I don’t think I ever deserved that kind of adulation from Adam but it never made me uncomfortable because with Adam (as with my Mom), I knew it was real.  There was no ulterior motive, or feign praise; just love and true friendship.

When I was in high school, I got Adam one of his first jobs at Cosmo Cleaners, where I was also working at the time.  On his first day of work, our manager Mr. Kim, with his strong Korean accent, was unable to accurately pronounce Adam’s name.  He called Adam, “Adams”. 
I still clearly remember the moment Mr. Kim said “Adams”.  Adam gave me this look, like he knew I had just won the lottery with a new nickname to tease him with, as high school friends only do so well. 

Over the years, he earned many other nicknames, including Honest Adam (because he was - Adam could not tell a lie) and Tiny (although he wasn’t - standing 6’4”, a former college football player and body builder) but I always remained most fond of “Adams”.  In birthday/Christmas cards, I’d address him as “Adams” and he finally gave him and started signing his name as “Adams” back. 

It was a way of reliving the days of Cosmo Cleaners and the fun we had there.  We created games out of circular rolls of tape, playing “kick hockey”, whenever the store was free of customers. 
There was no air conditioning at Cosmo’s, so on some days, I couldn’t wait for the moment I’d get into my Dad’s car to head home.  But Adam being Adam, he’d kindly decline the ride and would run home instead.  It was only a mile away but after standing on your feet for eight straight hours in a humid store, listening to customers complain about random stains on their clothes or the level of starchiness in their shirts…well, I think most 14 year olds would look forward to some rest.  Not Adam.

When he was younger, Adam was very shy, especially around other girls.  He was so shy, in fact, that he came to me for advice on how to talk to the opposite sex.  I helped coach Adam through the Homecomings and the Proms, even outlining – in bullet point fashion – his exact words when he asked his date to Senior Prom. 
Adam certainly blossomed in later years and when he met his beautiful wife Jill, no Mike Wentink talking points were required. 

I also taught him the art of not arriving on time for school.  Adam didn’t drive until he went to college so during our Senior year in high school I was his main ride to school.  Most mornings were spent in my family’s station wagon, beautifully adorned with wood paneling, screeching into the parking lot and then racing against the morning bell (a contest we usually lost) to make it into our first class on time. 
Upon graduation, we attended different universities and saw each other sporadically, during random visits or at home in Springfield during break.  After college, I settled into a corporate job in Northern Virginia while Adam, a captain in the Army, lived in Upstate New York. 

This was before the dawn of social media but Adam and I still kept in close touch…and in his sincere way he heaped praise on my achievements at Capital One.   He enjoyed the stories I shared with him about the girl of my dreams that I had met at work – my future wife, Angela.
In a tribute to how special our friendship was, Adam – unannounced – took the microphone at my wedding and spoke to how proud he was of me and my life. 

I think Adam took my diagnosis of multiple sclerosis harder than I did.  I rarely saw or heard bitterness from him, but the day I told him about MS, what it is, how I found out, what the future may or may not hold – he just seemed to be upset at the world.   His words still echo in my ears, “This doesn’t make sense, Mike Wentink doesn’t get MS.  It’s not supposed to be this way”.  Towards me, though, he directed warmth and encouragement, promising support from any end of the world.  From Adam, I knew he meant it.
As the years passed and I started writing about life with my disease, Adam would call to check in, to praise my latest post or just to say hi.  His new career in real estate brought him to San Antonio periodically  and the Wentink house was often blessed with a visit from Adam.  Our children dubbed him “The Thing”, of superhero fame, because of how big and strong he was.  

This past summer, my family took a vacation back to Virginia.  Part of our trip was spent in Williamsburg.  Adam and his family drove, from their home in nearby Virginia Beach, to see us one night.
It was like old times for Adam(s) and me.  We joked, talked about life, marriage and the beauty/chaos of parenthood.  Our families ate dinner, visited a candy shop for dessert, and then we found an open field in front of the Wren Building on the campus of William & Mary where our kiddos could run around together.  Our children became fast friends, much like Adam and I did many years before.  His daughter and my son even held a mock wedding ceremony with each other.  The children coaxed us into participating, Adam as the father of the bride and I “officiated” their nuptials.

While our children continued to entertain each other and our wives chatted, I marveled with Adam how far we had come.  Just two Springfield boys, who married (way) up, both blessed with two amazing children – it was a surreal moment, as both of us basked in the glory of truly “living the dream”.
We had come a long way from kicking tape around the floor at Cosmo Cleaners.  And the future lay sparkling on the horizon, full of endless possibilities.

137 days later, on November 22, 2014, my dear friend Adam died of a massive heart attack.  He was 38.
Early the next morning, as I was leaving on a family trip for Thanksgiving week, I learned about what happened to Adam.  As I told my wife, I went numb, lost balance in our room and went to the ground as tears streamed out of my eyes.

Our children came wandering into the room, so exciting to be getting on a plane in just a few short hours.  Concerned, they asked if Daddy was alright.  I had no response as I tried to smile and hide my sorrow from their quizzical, yet so innocent, eyes.
It was a cruel irony – the primary reason for flying out to San Diego for Thanksgiving week was a feeble attempt to overcome the sadness from the recent passing of my Mother.  We have no family in San Diego, it’s not a Wentink tradition; we were just hoping for a peaceful getaway.

While in California I learned the last few minutes of Adam's life were spent reading my previous story, “A Tale of Two Treatments”.  As I type those words, they are still no easier to digest, or understand, than they were when his wife, Jill, shared his final moments with me.  She said Adam handed her his phone, told her she needed to check out my latest post and remarked on how I’m such an inspiration to him.  A few minutes later, Adam collapsed to the ground and did not survive. 
As we spent the week on vacation, I found myself reflecting, much as Adam did, when he learned about my MS.  It didn’t make sense.  Adam Wight is larger than life, he can’t be hurt.  He doesn’t die at 38.  It’s not supposed to be this way.

Adam James Wight leaves behind Jill, his amazing wife of eight years, two beautiful children, Allison (6) and Mitchell (3) and countless heartbroken family, friends or acquaintances that had the pleasure of knowing Adam, seeing Adam smile or hearing him laugh. 
Adam gave more than he ever expected in return; a selfless lifestyle to emulate.  Even in his final act, he was bringing grace and love into our world, as he showered a friend with high praise from afar.  

I will miss you, my friend – you are the one that we can all inspire to be.

In loving memory of Adam James Wight (1976-2014)

Friday, November 21, 2014

A Tale of Two Treatments


“It was the best of times, it was the worst of times…it was the season of Light, it was the season of Darkness, it was the spring of hope…”
A Tale of Two Cities, Charles Dickens

Even watching our wedding video, over 13 years later, I still feel a little sheepish hearing the speech my best man gave.  It was entertaining, to be sure, but he also relished the opportunity to share with everyone in attendance – most notably my parents – some “stories” about my high school and college experience.
Nothing outlandish, just typical “kids will be kids” references but certainly none that, upon reflection, I’m particularly proud of.  He’d finish each colloquial snippet with “but I’m not going to talk about that right now…” – causing my Dad to tartly remark at one point during the speech, “...but I would like to talk about that!”

The following day, my wife and I stopped by my parents’ home to say our goodbyes before we headed off to our honeymoon.  It was then that my Dad got that moment he wanted, to “talk” about things with me.  Obviously, I was years past being “grounded” or otherwise punished so I wasn’t quite sure what to expect. 

But there were no outward displays of disappointment; instead, whether intentional or not, my father gave me my first introduction to parenting when he told me with an ironic smile, “One day, when you have kids, you’ll be paid back.”  I was 24 and on my way to Aruba, with my dream bride and any reference to children was mostly lost on me at that point in my life.

SEASON OF LIGHT
I definitely understand what my Dad meant now.  Sure, my children are still youngins’ in elementary school and many years away from their own adolescent experiences.  But even at their current age, I’m often reminded so much of myself when I was younger; fighting with my older brothers, never stopping to take a breath, and thinking I had it all figured out at the tender age of 7 (or 5).

One of the less discussed, thus underrated rewards of parenting are these “a-ha” moments when you figure out why your parents made some of the decisions they did.  Or perhaps you even reflect in awe on how they did much more with much less.  Either way, you finally get it. 
And that’s a beautiful avenue to bond further with your parents; you all are part of the same club now.  For me, anyway, I feel like starting a family has made the relationship I have with my parents stronger and richer on many different levels.


SEASON OF DARKNESS
I still remember the day my Mom told me she had ovarian cancer.  It was a devastating moment but the truth is she had already prepared me for that news.  She knew before all of us did – including her doctors.

Ovarian cancer took her Mom and oldest sister, both before I was even born.  She recalled the red flags that signaled their diagnosis, including the pain and swelling of the abdomen and feet.  It feels like it was just yesterday, my Mom sitting on our couch, taking off her shoes, her sock fitted snug over her enlarged foot as she described the various reasons how she knew something was wrong.
Deep down I feared she was right.  I wore my skeptical hat and mixed in a heavy dose of positive thoughts, the former to give me hope and the latter to (hopefully) provide her comfort.

In the summer of 2011, my Mom underwent a hysterectomy – a 3 ½ hour surgery – in attempt to remove the cancer from her body.  Three days in the ICU and over a week in the hospital was spent recovering from this invasive procedure. 
In truth, my Mom never fully recovered. 

Over the following three years there were good days, but sprinkled in with several rounds of chemotherapy treatments, ER visits, additional surgeries, hospital stays and prolonged rehabilitations – in short, Frances Mary Basile Wentink never got close to returning to the same quality of life she had pre-summer of 2011.

Each time my Mom had chemo, it was broken into six different treatments, three weeks apart.   Throughout this process – she had three separate chemo rounds – my own IVIG therapy would sometimes coincide with hers.  In fact, on some days, we’d both be spending our mornings at our own infusion suite – at the same time - sitting back, watching the medicine drip, drip, drip as the clock slowly ticked, ticked, ticked.
Chemotherapy battles cancer in an effort to keep that person alive; in my situation, the IVIG infusions I receive are used to try and slow the progression of my MS.  I would never compare the strength my Mom mustered after each of her chemo treatments…the awful pain she endured, the damage to her mind and body versus any of the milder side effects that I might face after my treatment.

But that didn’t stop my Mom from comparing them.  I’d feel embarrassed whenever she did; my automatic reaction would be to remind her how much harder chemo was than IVIG.   But slowly, I started to understand what she truly meant.
For both of us, sitting in that chair, dreaming of the moment that needle comes out and you can go home…unsure of what your future might hold or, short-term, how many more treatments will there be?  Truth is, that can be a lonely world.  Very lonely.  I joke with my wife that I feel like I’m off on my own island sometimes during the week I have IVIG.

But suddenly my Mom and I were able to share stories that were very similar.  I learned I get my uncooperative, catch-them-if-you-can veins, from her.  Or, sometimes after a treatment, I let my pride sparkle just a little too bright and I fall into a mindset of – I don’t want anyone to view me as weak – and I end up doing too much, too soon.  So I shouldn’t have been surprised that I found myself on the phone with my Mom after one of her chemo treatments, chiding her for vacuuming around the house!  As I pleaded with her to rest and stop pushing herself so hard, it was almost as if I was hearing an echo in our house, of my wife pleading with me to rest after my treatment.

SPRING OF HOPE
It truly was the best of times and the worst of times.  Never had I felt so close to my Mom.  I was a parent like her, applying so many of those lessons she had taught me as a boy.  Realizing many of those same fears and worries she had for us.  And we both had so many stories to share about our own health experiences and treatments. 

But there was also a dark cloud that never went away.  It brought guilt that I didn’t appreciate her more when I was growing up.  And persistent sadness that one day soon she would be leaving us.  Even on the brightest of days, I still felt the black cloud hovering nearby.
I hope my Mom cherished those final three years.  They were very difficult on her.  But with the struggles came three more birthdays with her grandchildren.  Three more Christmas mornings opening presents with her family.  And countless opportunities for all of us, to tell us her how much we loved her, talk about our family or even just share silly stories about our day (and with our kiddos, there are a lot of those kinds of stories!).

Another silver lining I discovered by having MS - I loved that my Mom and I could connect and share stories about our treatments, the elaborate schedule of doctor’s appointments and medical tests we both dreaded throughout the month...and, of course, the considerable amount of daily meds that we never got vacation from.  I’d counsel her on the importance to listening to her doctors - the good and the bad - but it wasn’t just coming from her son, it was coming from somebody that felt a lot of the same feelings, worries and concerns that she had, too. 
Much like the magical world of parenting, our lives had come full circle .  But unlike with parenting, no quantum leap into the future was required for me before I finally could understand and relate.  We both got it and I dream that was as special for her as it was for me.

Tuesday, September 16, 2014

Mom


On Friday, September 12th, 2014, one of God's beautiful angels returned home.

Selfishly, I wanted you to stay with us forever but I find great comfort knowing you are no longer in pain...no more chemo, Mom....no more surgeries.  You are free.  Reunited with your parents and two sisters (including your twin, Aunt Virgie), I know you are already up there in Heaven shopping, talking, laughing, more talking (probably asking St. Peter about his family) and, of course, putting ice cubes in your wine.

Three children, six grandchildren, three daughter-in-laws, two granddogs and a husband of exactly 44 years.  I miss you so much already, Mom.

For those of you that never met my Mom, the worst thing that could be said about Frances Mary Basile Wentink is that, given the chance, she would talk your ear off.  But not in the "listen to me about my life" sort of way...she truly cared, stranger or friend, about who you were, where you were from, and of course if you had any Italian in your heritage. 

She was an old-school Italian Mom and made the best homemade pizza I'll ever have.  She didn't drive but that never slowed her down, even while raising three not-so-angelic boys with my father.  She grew up in Chicago – not a suburb, the city – and public transportation was the way of life.  After marrying, it didn’t matter where the Army moved her and my Dad (Korea, Germany  or the Washington D.C. area), she continued (and loved to) work, shop and run our household; in fact, she probably knew the Springfield, Virginia bus schedule better than anyone.

Very protective of her sons but also strong enough to support/encourage us to fly away to chase our own dreams, even if that meant moving all around the East Coast, out to Texas or even another continent.

Why cancer would feel the need to take someone like that, I'll never understand.  But it serves as a reminder as to how precious each new day is and an opportunity to reflect on whether I'm living my life the way it should be lived, the Fran Wentink way.

My passion for writing has been sidetracked recently.  It’s been a very difficult time for me and my family but the strength my Mom showed in her final months is what I’ll always remember…it’s unlikely she knew what day it was when she passed, but I can’t help but believe that she somehow did know.  Doctors thought various times she was in her final hours but she fought to live and see September 12th – my parents 44th wedding anniversary – so she could spend one more with my Dad by her side.
I look forward to telling stories about my MS again, so please keep visiting my page.

Tuesday, July 22, 2014

Happy Summer!

My apologies for the lack of posting...hope everyone had a wonderful 4th of July and enjoying their summer so far.

We had a family vacation so I've gotten behind on my writing.  What a treat it wasi to see so many friends on our trip while also creating so many beautiful memories with our children.

In 2014, traveling is not easy for anyone...add in two active kiddos (5 and 7 years old), connecting flights, rental cars, side trips and some pretty intense heat and well, let's just say my body needed a couple weeks of nothing after we returned.

And by "needed", I mean demanded.  Just moving around the house takes additional effort, sleep has been difficult and shooting pains are a lot more common.

I'm typing as I receive my last IVIG infusion, needle in arm, counting the hours until it's over.

I look forward to sharing more stories and updates soon and hope you will keep checking back!

Thursday, June 19, 2014

Chackies in the Wind

One ruler.

One hand sanitizer.

One blue toothbrush.

About a dozen finance and management books.
 Various key chains.

91 cents…

It’s not often you stop to truly take stock of your current job, but that’s what happened in the Fall of 2011 when multiple sclerosis unceremoniously ended my career. There were no retirement parties, goodbye emails or farewell meetings. It’s almost as if I disappeared mysteriously into the night.

Not long after my title shifted from “Director” to “Long-Term Disabled” I received two large boxes in the mail from my former employer. In each was an assortment of odds and ends that had been in my work space. Day after day, I was surrounded by these things... family pictures, a variety of medications and enough trinkets to open a chachkies store.

This isn’t to devalue the importance of these items or my employer. “Flexible” is an understatement to how my company accommodated my condition. Not long after my diagnosis, my management team agreed to my request to work from home three days a week – even though my position necessitated a lot of face-to-face contact with people across the company.

I appreciate how blessed I was to work with so many caring and understanding individuals. It’s a tribute to the company culture that even after my diagnosis, my career continued to flourish.

EASY TO NOD – HARD TO DO

An old adage suggests that, while lying on their death beds, no one ever wishes they’d spent more time at the office. It’s important to not lose sight of what really matters in life; faith, family and friends.

I don’t disagree with this sentiment but who does? It’s easy to nod in agreement to these kinds of statements but then life comes along with its routine…bills to pay, children to raise, companies to start (and grow) and bosses to please.

Nobody strives to have regrets in their final days, but in the short-term, what’s more tangible? Life’s big questions or not getting fired?

It’s human nature to fall back into old habits that accompany most careers. The daily grind where, a week might pass, and you ask yourself, did you even accomplish anything?

Or do your days just resemble the act of the little Dutch Boy, hoping you don’t run out of fingers to plug all the holes?

Perhaps you get lost in your own evil version of “Groundhog Day”, not fully engaged but able to, churn out the same tasks, create the same presentations, conduct the same meetings that were done by so many that came before you that will still be performed well after you are no longer there?

The band Kansas has a famous song that goes “Dust in the wind, all we are is dust in the wind….nothing lasts forever but the earth and the sky…it slips away, and all your money won’t another minute buy”.

Three years ago, when I received those two large boxes that contained all of my work belongings, a version of that song echoed in my head. “Chachkies in the wind….all we are is chachkies in the wind”.

…a corporate polo shirt (w/tags still on).
Financial calculator.
A book on 24/7 Innovation.
A box of Kleenex.


And so the list goes…

Two pages long, equal parts amusing and educational.

LEAVE YOUR MARK

Not everyone gets diagnosed with a chronic disease. And not everyone diagnosed with a chronic disease is forced to leave the workforce early. Your “Kansas” moment may not come until much later in life when you realize that so many of your prime years were devoted to being lost in a quasi-purgatory of endless, repetitive to-dos, which mostly resulted in kicking the corporate koozie down the hall.

Stop.

Instead of doing what’s always been done, make it better. Make it yours. Otherwise, why bother showing up?

Unfulfilled? Don’t wait for life to force you to make changes. Find your happiness.

I’m not advocating rash decisions; rather, an honest re-evaluation of where you are versus where you want to be.

I often joke with my wife that I’m going to write a management book titled “Everything I learned about being an executive, I learned after MS”. The title’s a work in progress but not the core message.

I didn’t change the world in my former career but I’m content knowing I didn’t just follow the script to only get by.

Every day I wore a smile and pushed to leave my mark. To make a diference.

To do it differently.

And now I hope to pass that practice down to my children or inspire others to do the same.


Originally published at msconnect.org

Thursday, June 12, 2014

The Parenting Puzzle

I was recently interviewed by "Momentum Magazine" (the magazine of The National Multiple Sclerosis Society) about parenting with multiple sclerosis....and that interview is in their latest issue! You can check out the electronic version by clicking HERE.

Please check it out and let me know what you think.  I plan do write further on this topic more (parenting and MS) in the next week.

Hope you come back and check it out!
 

Sunday, June 8, 2014

76 Things: #6 - Follow-up

Regarding my handicap placard and my reluctance to use it....here is a story from California:

http://www.fresnobee.com/2014/06/06/3965323/marine-alleges-he-was-injured.html?sp=/99/406/263/


There might have been other extenuating circumstances involved, but the overall theme is what I point to...this individual didn't "look" like he was disabled and this caused suspicion on the part of the park employee.

Please note - I've never experienced anything like this, but this certainly is a worry that goes through my head every time we do park in a handicap space.  Ok, not to the extreme of getting arrested but certainly to the point of others casting doubt on my use of the handicap space.

We don't have a handicap license plate, only the placard (like the individual in this story).  On good days (for example, when I don't go out with my cane), to the casual observer I don't appear disabled.

So, thought I'd pass the link along.  Check it out if you'd like and hope everyone is having a great weekend!



Saturday, May 24, 2014

76 Things: #7

As the days of monthly business reports, creating “decks”for the Board of Directors, etc. become a distant memory, I’ve found great importance in continuing to intellectually challenge myself.
One way, in particular, is doing jigsaw puzzles.
My memory…and thought process…aren’t what they used to be, courtesy of MS (that in itself deserves – and will get - its own story). I fear further cognitive impairment and hope that regularly doing puzzles will help.
I’ve lost count of how many puzzles I’ve done over the past few years. Most have been around 1,000-2,000 pieces...although one year my parents got me a 3,000er that, when I opened the box and poured out all the pieces, it took up most of our dining room table!
I’ve done sports, scenic pictures, beer bottles, old school candy wrappers…really, anything and everything. I usually try to pair the puzzle with the season. I just completed two seasonal puzzles in honor of Spring and soon I’ll probably get one that signifies Summer. Mostly, though, I just look for something interesting.
I’ve covered quite a bit of Vincent Van Gogh’s work; in fact, two of those puzzles are hanging in my wife’s home office!
During Lent, I did “The Last Supper”, then rolled it up and sent it to Angela’s parents as a surprise (yes, mailing a puzzle can be done).
Are they helping?  Not sure, but they’ve helped fill part of that intellectual vacuum that was created when I left the world of Product Management, Finance and Powerpoint presentations. 
Best of all, both Vincent and Gigi have become little puzzle aficionados themselves.  They always get excited when I’m working on a new puzzle….and they’ve spent a few Saturday and Sunday mornings doing *all* the jigsaws they own (which is a lot).  It covers up our entire family room and they’ve created their own “Puzzle Shop”, with marketing, sales pitches, etc. 
Another special moment is when Gianna likes to say she is “Daddy’s Girl” when she is working on one of her puzzles.
Most kids like puzzles and Vincent and Gianna are always spending time in make believe worlds, so I’m not sure how much is really influenced by watching their Father doing so many of them.  But it’s nice to think that I’ve found another silver lining in my life less traveled with MS.
Vincent approving of "The Last Supper" (he helped me finish it up, too..)

The 3,000 piece puzzle from my parents!
 


Tuesday, April 29, 2014

I've Got The Chills

Last week, my right shoulder area starting feeling a little off.  It's difficult to describe the exact issue...it wasn’t numb or tingly, two common (and almost daily) symptoms of my MS.  I could sense that area being touched; it just didn’t feel like my shoulder.  The best way to describe it would be to say that it felt desensitized to my touch.
 
If I felt an itch in that area, I could scratch for hours and still find no relief.  Slowly, this (lack of) sensation has spread to the rest of my arm, all the way to my fingertips.  Over the past week, I’ve had  this hard to explain “force field” around my arm.
 
My hand and arm are still operational but they're irritant to the touch, whether it be my own, my children or even my clothes.  You ever touch the surface of something...perhaps something stainless steel (like a refrigerator) or your fingers rub against the chalkboard the wrong way...and it sends a chill through your body?  My arm is that chalkboard and the chills are a persistent melody played throughout the day.
 
There is little control in the world of MS.  But that doesn’t mean I don’t try.  All week, I’ve constantly been opening and closing my right hand, trying to keep the circulation open.  Yes, it’s silly but that’s my way of telling my right arm to keep fighting the good fight.  Don’t give in to this disease; my competitive spirit refuses anything less.
 
So as I sit her in the infusion suite, getting my latest IVIG treatment, I’m worried my neurologist will recommend another steroid treatment….maybe this is the start of another relapse?  Or maybe it will just go away.  I’m hopeful for the latter.

Wednesday, March 19, 2014

Law & Order: MS Victims Unit


This isn’t the original entry I was planning on sharing this week but it wrote itself after life was interrupted on Sunday.  Below is an annotated summary of my Sunday interlude. 


In the multiple sclerosis system, a chronic disease affects two separate yet equally important groups; the brain and the spinal cord.  Because of this, often it’s hard to tell the difference between MS and non-MS related events.  This is one of those stories.  Dun dun.

When is being tired not just being tired?  Often, in the world of MS, it’s hard to exactly know where the tired ends and the MS begins.  Am I exhausted from MS Fatigue or did I just not get enough rest the night before? Did I not sleep well because of some environmental factor (room too warm, kiddos waking up during the night) or because one of my regular MS ailments (pain, spasticity) kept me up? 

Which brings us to Sunday morning.  I woke up around 6 and knew instantly something was wrong.  The entire room was spinning (and no, I didn’t have any J├Ąger shots the night before!)…vertigo, or some form of it is pretty common in my world.  But this was different. 

I began to sit up and instantly felt like I was going to pass out.  Literally.  Everything was going dark.  I fell back to the bed in shock and tried again to move and was hit with the same terrifying feeling of blacking out.

Angela heard me struggling and asked if something was wrong.  With everything spinning, a cold sweat beginning and feeling like the world was coming to an end, I couldn’t form a coherent response.  But, I knew I had to get up to use the restroom.

And before you stop reading, I won’t be going into any details because honestly, there are none.  I just had to go but I couldn’t *get* there.  Angela basically had to carry me…and all that motion caused me to feel even more seasick.

Was this a bad case of food poisoning?  Or was this MS paying me yet another visit? (Chung chung)  My stomach felt like it was at civil war, my head felt like it was rolling around on a boat and I couldn’t stop feeling like I was going to hit the ground and pass out.

After returning to our bed, I asked Angela to bring me a trashcan nearby.  Over the next two hours, I unceremoniously dry-heaved at a rather constant pace.  Blood vessels on my nose popped from the intensity and frequency of dry-heaving.  I couldn’t even hold up my head up...I’d rest my head against Angela and then she’d help prop it up above the trashcan, when needed.

And so the day went.  Yes, day.  I spent an entire day in bed even though it was impossible for me to find any comfortable position.  I had no strength and couldn’t even sit up.

By noon, I requested my Kindle to try and research online whether this was food poisoning or something worse.  Bad idea.  By this point, I had gone delirious and ended up diagnosing myself with some “exotic” condition.  I believe it’s called “fainting”.  Did you know there is a long, scientific term for fainting?  Well, I found it.  I was out of my mind, thinking this was some new affliction that was hitting poor saps like me.  I’m not sure if Angela shut off my internet access or if I just eventually gave up.

Angela fed me in bed.  Thankfully, it wasn’t from a bottle but I’m pretty sure there might have been a baby spoon involved.  I couldn’t lift my head to eat, the movement was too much, so Angela literally had to feed me by the spoonful.

She made me rice, I tried to stomach cereal and even half a waffle.  That was about all I ate for most of the day.  My nightstand was littered with bottles of water, Gatorade and Diet 7-up, each adorned with its own straw that Angela held for me so I could manage a few sips every so often.

It was a long day, I was in that bed for almost 12 hours.  When I finally managed to get up, I felt like I was floating on air.  But I couldn’t handle another minute just lying there, away from my family, so I forced myself to head downstairs to rejoin the living and let the kiddos know that Daddy was going to be ok. (They just knew Daddy was “not feeling well”, which unfortunately is a refrain they hear much more than I’d prefer).

So what happened to me on Sunday - was it food poisoning, MS….or both?

Meanwhile, life goes on.  But, will it happen again?  Next Sunday...next month…or was it just some awful luck related to something bad I ate the night before?  If only I had a few  “Law & Order” detectives to help solve this mystery.



Monday, March 3, 2014

76 Things: #6


I’ve had and used a handicap parking placard over the past few years….but I have a love/loathe relationship with it.
I don’t use it every time.  I’m rarely out driving on my own (see 76 things, #2) and I don’t particularly go looking for the handicap spot.  If there are any nearby spots I defer to those…and my wife has a placard to use in her car when I’m travelling with her, too. 
Some days are better than others with my MS.  But maybe it’s a “cane day” (i.e., I need help walking around with my cane) and that makes the decision pretty easy.  Or, during the Summer, finding a handicap parking space is almost required.  After just a few steps in the San Antonio sun, I feel like I might pass out, so the shorter the distance to where I am going, the better.
But sometimes I simply just can’t stomach taking the spot so, even if it means parking far away, that’s what I’m going to prefer (or, if Angela is driving, plead with her to do J ).
I freely admit it’s mental.  I’m not perfect and this is certainly a part of me that needs to grow and/or just get over it.  But the moment we pull into a handicap space the cold sweat begins.  Are people looking at me? 
They are probably thinking “that guy looks fine”.   In my head, there are looks of disgust or disapproval at my usage of the handicap space.  I want to reassure them that I am worthy…maybe show them a membership card to the “Chronic Diseases Society” or put a bumper sticker on my car that says, “Yes, I have MS”.
And this imaginary projection of other people starts to grow on me.  I worry that I’m taking the space from somebody else that might need it more.
If I’m out on a date with my wife, I feel weak.  If I’m with my children, I’m worried for the inevitable questions to come about the blue placard or the special sign over the parking space we are in.


I wish it was easier…maybe if I was less stubborn on this issue?  Or didn’t view everything as a competition to show that I’m stronger than I really am?  Or didn’t let my imagination run wild, creating this parallel universe where the parking space one chooses somehow defines who you are?
These kind of mental challenges aside, my handicap parking permit has been a tremendous help and I thank my wife for pushing me to get it.  Multiple sclerosis is a battle on many fronts (physical, emotional and mental to name a few) and I need to adapt (and be more open to solutions) to endure.
 


Sunday, February 2, 2014

76 Things: #5

An essay of mine will be published in "Something On Our Minds", the 2nd volume of an eclectic anthology of prose and poetry, written and composed by people with MS.

No poetry (this time) but I did re-purpose an entry that I had written last year to be included in the book, which will be released sometime in the Spring of 2014.

In the Fall of 2013, the originator of the 1st volume had reached out to me (via this blog), thanking and commending me on my writing and querying my desire to contribute a piece to their 2nd volume.

Flattered and honored are obvious adjectives to insert here...but most of all, I'm ecstatic for the opportunity to extend my reach for raising awareness and understanding of multiple sclerosis.

I'll be sure to provide more details on the book as they are available!



Wednesday, January 15, 2014

76 Things: #4


Most of the new shoes I own don’t have laces.

Back when I’d wake up, get dressed and go into work, I found myself having great difficulty tying my shoes in the morning.

You know how you wake up and sometimes your arm or hand is asleep?  That is most mornings for me but instead of just feeling asleep, my hands feel like they went twelve rounds in a championship level boxing match (which I clearly lost).  They are sore, noticeably swollen and discolored (red and splotchy) and – worst of all – feel like hundreds of sharp little needles are dancing all over them (an acupuncturist gone wild).

I try everything to mask the discomfort, but the most effective remedy has been time.  Just waiting it out…usually within a few hours the pain subsides and my hands and fingers are once again functionable.

But for that first hour or so, extra precaution is required and something as simple as holding my coffee mug turns into a bad sitcom bit (awesomely bad, of course) with plenty of stumbling and bumbling…the only thing missing is the laugh track to this recurring episode (I’ll work on the title, too).

Buttoning my dress shirts for work was no easy feat, either (the cuffs were rather problematic and my wife would help with those)….but the worst was trying to tie my shoes.  So, our solution was to avoid the laces all together and a lot of my new dress and more casual shoes – much to the chagrin of GQ I’m sure - are laceless. 
 
Did you see the latest episode of "Mike With MS"?  Hilarious!
 

Tuesday, January 14, 2014

Here's to 2014


Happy New Year to everyone!!

I'm just now coming out from under my Decemberfest/New Year's rock...each year, right after Thanksgiving, our family enters a very active period we joyfully call "Decemberfest" (my wife even makes annual shirts to commemorate it).

As with most people, December can be a busy time…visiting family, celebrating the holidays, parties, travelling, Christmas, New Years, etc. and at the Wentink house, we throw three birthdays into that mix.  My wife’s birthday is in early December, I’m five days before Christmas and then our son Vincent was born on Christmas day.

As it (thankfully) works out, my IVIG treatment is the week after my wife’s birthday and the week right before mine.  The week in between I spend two days at the infusion center and then the following 3-4 days after I’m at home recovering.

MS isn’t quite the cherry on top of all of these festivities but it can’t be ignored.  There are many variables I can’t control about the progression of my disease…and it can be frustrating that so much can be out of my control.

But where we can manage my health, we do.  So, although it is Decemberfest, getting rest is still important.  So is eating well, trying to keep the stress to a minimum, etc.  Pretty standard goals that most of us strive for but I feel almost compelled to achieve. 

I don’t have to attend every party or go all Clark Griswold with the Christmas lights.  Most shopping (for birthdays and Christmas) is done from the comfort of my home office (thank you, Amazon.com!)  I feel there is a thin line I’m walking each day, trying to keep my balance and not slip into “Relapseville”…and during the holidays or other busy times in our lives, that line is even thinner but the consequences remain just the same. 

Please check back tomorrow for the #4 Thing You Didn’t Know About (My) MS – and again, happy 2014!


My wife does it all....even make shirts!

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