Tuesday, December 29, 2015

Time to Change the Wallpaper



I hope everyone had a wonderful holiday season...I can't believe it is almost the start of 2016!

I'll admit my lack of energy has really won out over my writing the past few months.

There is a lot of guilt that comes with having a disease like MS...am I giving enough to my family?  Am I being the best husband and best father that I can be?  Am I being the kind of friend that my friend's deserve?

It doesn't feel great when my MS causes me to miss an event...or our daily plans change in response to my disease.

It puts incredible stress on my wife and introduces our children to ideas (chronic pain, IV treatment centers, daily medication) that, as I look into their pure and innocent eyes, I'm not always prepared to talk about. 

In my dream world, I would relegate MS to the background of our family.  The loud, obnoxious and outdated wallpaper that needs to be changed but, in the meantime, we are able to live with it.

Unfortunately, dream worlds are just that -- dreams -- and MS has too often interfered with my health and as a result, finding a regular writing schedule has been problematic.

It bothers me that I've faltered in this area of my life.  I'm competitive and I don't want MS to beat me but, to be clear, it's much larger than that.

Writing about my MS...communicating to the world how it is to live with a chronic disease...giving a voice to others who might have similar struggles has become a mission to me.  So a large part of me feels unfinished.  This needs to change -- and it will!


Did you know I have an eye patch that I used to routinely wear while working from home?  I even snuck it into to the office at USAA a few times and would quickly wear it when nobody was around or looking (or at least I hope they weren't!)

In addition to sharing more of the "76 Things" (like about my eye patch above), I also look forward to sharing with you more stories, including when and how I was diagnosed at The Mayo Clinic in Rochester, Minnesota.

I look forward to 2016 and hope you visit often to read about my journey with MS. 

Happy New Year!














Thursday, November 26, 2015

Thanks-grieving



 
The other week when my children found out that the Wednesday before Thanksgiving was going to be a “Daddy Day,” they erupted in cheers, giggles and lots of dancing.

No school, no day camps – just Daddy time. 

Over the past few years during their Thanksgiving, Christmas or Summer Break from school, we’ve been lucky enough to share a few days like these together.

There’s nothing magical that I do during these “Daddy Days” but perhaps that’s part of the charm.  I find plans and schedules a bit tedious; rather, I prefer to just let the day “speak to us.”

Whatever strikes in the moment is usually the inspiration for the day.  Sometimes, it’s been a day-long adventure to new locations and other times it’s just a casual day at home, playing cards or various board games.

To be clear, I’m a parent of two young kiddos – so some planning is involved.  But I’d prefer to call it research.  I’ll read about a new town, museum or attraction and make mental notes about possible ideas or destinations.  I’ll consider the weather, my health, energy level and/or any other logistical considerations.

And then when the morning of “Daddy Day” arrives, I just go with what feels right.

My children’s moment of jubilation was what originally inspired me to write this story.  I wanted to talk about how blessed I am – yes, having MS sucks – but it has also opened doors to magical moments in my life that probably wouldn’t have existed otherwise.

It seemed easy enough to write.  I’ve had similar “Silver Linings of Having MS” themes in others stories I’ve written, too.

The only problem is, something just didn’t feel right.  And, much like my “Daddy Days,” I’m going to let the day – or in this case, my story – “speak to me.”

It’s hard for me to write about what I’m thankful for this holiday season when all I really want is to see my Mom again. 

The final few years of her life was filled with chemo treatments, surgeries and trips to the emergency room.  It was hard watching all that she endured so when she died last September – as heartbroken as I was – I was also relieved that she was no longer in pain.

But her passing also created an emptiness that’s impossible to fill.  I miss my Mom.

Last November, the world lost another angel, when my good friend Adam Wight died suddenly at the age of 38.

Like me, he married way up to his beautiful bride, Jill, and also like me was blessed to be raising two young kiddos.

It’s hard for me to write about what I’m thankful for this holiday season when I’m still struggling to understand how somebody like Adam could be taken so suddenly from us, his wife and his two young children.

This past year, it’s been difficult for me to write.  My struggles with MS just seem so miniscule compared to the emptiness created by my Mom’s passing and the heartbreak of Adam’s sudden death.

Something feels off writing about my struggles with blurred vision or vertigo when I won’t have my Mom to read or comment on my story.  Or explaining the daily pain associated with MS seems trite when I think about the kind of pain that Adam’s wife, children, family and friends have endured since last November.

This holiday season I’m thankful to have been the son of Frances Mary Basile Wentink and good friend of Adam James Wight.

I’m thankful for every moment I shared with them.  I just wish I had more.


Tuesday, November 3, 2015

Backing In - Part II

As a result of my uninspired performance in high school, I had very few exemplary academic achievements.  In my sophomore year, I did take a standardized Accounting test and scored among the highest in our school district.  It was as much a surprise to my teacher as it was to me!

Performing so well on that test was a pivotal moment in my life because it is what prompted me to study Accounting at Virginia Tech.   

My undergraduate degree led me into the world of Corporate Tax at Capital One – where, after meeting my wife - the next chapter of my life began. 

However, not long ago, a memory of my senior year of high school popped into my head.  No, not of sleeping in class or frantically finishing a book report the night before it was due; but rather, I recalled another surprising moment from Government class.

It was during one of our first writing assignments:  “What Does Government Mean to You?”  Can’t say I remember what I wrote – although I do recall having a great time doing it – but it was the reaction of my teacher that shocked me.

He asked to speak with me as class was ending…I still remember the snickers from my classmates who thought I had gotten into trouble (I figured I was, too!)  Instead, my teacher told me he thought my paper was one of the best things he’s read in a really long time and that I should be in his Advanced Placement (AP) class – all just based on what I had written.

Although I was surprised and grateful, I was also just 16 years old – so it mostly went in one ear and out the other….and nothing more came of this moment.

During this past summer, a good high school friend of mine asked if he could share my writing with his students.  He was inspired by my work and wanted to incorporate some of my stories into his lesson plans on how to write with meaning and passion.

Flattered, I agreed.  We communicated through text but eventually this graduated to the lost art of talking on the phone.  It was wonderful to hear from my friend and catch-up about both of our lives. 

During our conversation he referenced our high school days and told me that he was always in awe of my writing.  This was back before cell phones and social media, when writing was a more significant part of our communication.  Whether it was just silly notes between friends or working on a class project together, there were frequent written interactions between us.

My friend, who teaches children every day, including a job at the Kahn Academy, and has also spent time on stage as a comedian, is an extremely talented communicator himself.  So I was stunned to learn that my writing motivated him to become a better writer.

We all have our dream jobs and not many of us get to actually live them.  The examples are numerous:  An aspiring musician who works an office job because he has a young family and bills to pay or the lawyer who’d rather own a bakery but doesn’t want to risk trading a stable job for a failed business.

Working in an office or arguing before a judge isn’t who they are, but for whatever reason, it is the road they’ve found themselves on.  Choices made when they are barely 18 – the college they study at or what field they major in – sends them in a direction that’s opposite of their passion.  But if a genie came along tomorrow and granted them the opportunity to change paths, they would instantly take it.

Everyone understands these types of scenarios, and perhaps a few of you are currently living one. 

But what if I told you there might be something out there for you – a passion or talent - and you don’t even know what it is, yet?

For me, the reality is I wouldn’t have become a writer if I wasn’t diagnosed with multiple sclerosis.  I would have never discovered this other part of me that prior teachers had alluded to or friends had admired me for.   It would still be hidden away, lost in the perpetual motion of everyday life.

Living with MS isn’t easy – there isn’t a day that goes by where I don’t encounter blurred vision, shooting pains, tingling sensations, numbness, fatigue, etc.  How can something so devastating to my health and personal life also be the inspiration behind who I’ve become today?

To be clear, my writing hasn’t won any Pulitzer’s and I don’t have any books on the New York Times best-seller list.  And I’m my own worst critic so the last thing you’d ever see me doing is overstating the impact or reach of the words that I type.

But I still wonder – is my situation unique?  Or are many of us living our daily lives unaware that we are only scratching the surface of our potential, an undeveloped talent or unknown passion?  

I don’t have the answer to these questions but I think it’s worth it to take a few moments to pause and reflect on it.  While you are taking a moment to smell the proverbial roses, close your eyes and remember who you were…while dreaming about who you can become. 

Let your internal compass lead the way.

Monday, October 26, 2015

Backing In - Part I

In high school, I didn’t get bad grades but I also wasn’t going to be mistaken for class Valedictorian. 

You need to apply yourself is common feedback for teenage students.  However, this maxim didn’t fully encompass my academic shortcomings.  What held me back wasn’t a lack of effort but actually a lack of desire.

I still remember day-dreaming in Biology when I heard my teacher remark, “this will be on the test tomorrow”.  I felt the tension in the air rise as most of my fellow students were frantically writing every word that was coming out of my teacher’s mouth. 

What, me worry?  I knew I wasn’t going to get a 100 on the test but I also knew I’d do fine without much effort.  Unfortunately, these poor study habits (or, more specifically, lack of study habits) followed me to college at Virginia Tech, where I was introduced to something called reality.

Entering my senior year, I knew that as an Accounting major with an unimpressive GPA I had little to no chance of any firm giving me an opportunity. 

Although it was the dark ages of the late 90s, Virginia Tech had a pretty advanced electronic application system and it was then, in the Fall of my final year, that I was quickly (and routinely) rejected by the Deloitte’s and E&Y’s of the world.  My finger was still clicking “send” as I was getting their “Thanks, but no thanks” replies.

As luck would have it, fate intervened, in the form of a small – but growing – financial company named Capital One.  This was well before the Viking commercials, “What’s in Your Wallet?” catchphrases or celebrity spokesmen.

Given my mediocre marks, I was stunned when Capital One invited me to an on-campus
“pre-screening” that consisted primarily of standardized tests. 

Now, the disinterest I had for school was far outweighed by the passion I had for work; whether it was as a pre-teen delivering The Washington Post, or the jobs I had in high school at the local cleaners, a Chinese restaurant and the neighborhood video store.  In each instance, I thrived, even starring in a commercial for the Chinese restaurant.

So, instead of feeling dread, as I did before most of my college exams, I felt re-born as I diligently worked my way through Capital One’s large packet of questions.    

I remained in further disbelief when, as part of their college interview process, they invited me to stay overnight at an Embassy Suites in Richmond, Virginia (a city over 200 miles away from Virginia Tech).  After they bought a large group of us dinner, I headed back to my room to get a good night’s sleep.  The next morning, at 9 a.m. there was a knock on my door that started an all-day marathon of in-room interviews.

For some, this process might sound frightening, but I reveled in it.  I had nothing to hide.  Yes, my grades were terrible but they weren’t a reflection of who I was and what I could bring to their company and I knew I could prove it.

I was in my element during the interview process, providing financial solutions to their questions and speaking from my heart.  Thankfully, Capital One looked past my poor grades to see my potential and rewarded me with a job offer…they even intentionally timed the mailing so their letter would arrive on my 21st birthday.

Throughout my career, however, I always felt like I was trying to out-run my college GPA.  As each year ticked by, the farther away I was from being a college graduate.  A small bit of internal redemption came when I completed by MBA with honors (only one B preventing perfect scores).  In the process, I discovered the satisfaction that comes with truly applying oneself in school. 

But comparing graduate school to undergraduate work or even high school is similar to comparing apples to oranges.  So my true salvation came when I was working at USAA, and an executive remarked after a presentation of mine that I must have been one of those folks that got straight A’s in college because he couldn’t see me settling for anything less.  

I had created a new brand - Mike Wentink 2.0 – and I was finally free from my mediocre academic past.

What I didn’t see coming was the evolution to Mike Wentink 3.0.  Ironically, it would have never happened if I wasn’t diagnosed with multiple sclerosis.

To be continued……



Friday, October 2, 2015

76 Things #15: Driving Mr. Nauseous

Feeling nauseous is a pretty common part of my life.  It’s not a daily occurrence but it's close.  Unfortunately, it’s mostly a product of the recurring vertigo that comes with my MS.

And much like vertigo, nauseousness is bound to strike me at anytime…out on a date with my wife, at night while helping the kiddos with homework or just while talking to one of my friends.  

The focus of the #15 thing you might not know about (my) MS is how I frequently suffer from nausea while riding in a car.

It’s never a problem when I’m driving (which isn’t often – click here to read about that!) – but, when I’m in the passenger seat, it’s a completely different story.

When I’m behind the wheel, I’m focused on going from Point A to Point B.   But without that focus, my vertigo tends to creep into my world – one moment I’m fine, the next I’m spinning and I feel as if I’m on a small boat that is rocking back and forth.

I’ve attempted various solutions such as bringing along newspapers or magazines to read, focusing on objects off in the distance…anything that distracts my focus and keeps my vertigo from rearing its obnoxious head.  I’ve had success – although most often, I’ve had to just grin and bear it - but I’ve also had moments where Angela has had to pull over to the side of the road, hopeful that my nausea will pass.

It wasn’t easy at first but, as with most of the common ailments I face from MS, we’ve learned to manage and adapt as best we can.


Tuesday, September 29, 2015

Proud to be a MS Champion!

I'm honored to have my MS story highlighted at San Antonio's Bike MS event. Bike MS: Ride to the River is a two day bike ride on October 3-4 and stretches over 159 miles from San Antonio to New Braunfels, TX...although I won't be attending the event, I'm very excited that my story will be part of it!

Tuesday, September 8, 2015

76 Things #14: Keep S'meylin!



It hasn’t been easy talking to our children about MS.  Even just teaching the correct way to pronounce mul-ti-ple scler-os-is can be challenging!

They ask a lot of questions and while it’s important for me to be honest with them about my health, I’m also sensitive to the beautiful innocence that comes with their age.  It’s a very fine line to walk...

A resource that’s been helpful – an Introduction to the world of Multiple Sclerosis – has been the Keep S'myelin children’s newsletter, published by the National MS Society.

Our kids love to read but this newsletter isn’t part of their regular rotation…I think I’d feel uncomfortable if it was.  I have a stack of them in my office that I can pull out when the mood strikes or a specific question arises.

The term “S'myelin” is a play on words…it refers to the myelin sheath, the protective coating around the nerve endings in our central nervous system.  This “myelin” is damaged (scarred) on our brain and spinal cord, when our confused immune system attacks it.

Talking about MS is pretty heavy, even for adults, so I’m thankful that support like this children’s newsletter is available.  

If you’d like to see an example of one of their issues…or, if you have MS and haven’t heard of this below, please click on the link below:


 http://38.media.tumblr.com/b0f2a75b3235e73ef18ace03fb7df8ac/tumblr_inline_n5vskzftfv1sdxtqg.jpg

Tuesday, September 1, 2015

My Ode (Haiku) to August

Time to celebrate
Thirty-one days of cruel heat
Is finally done

So Goodbye August
Can’t Say I’ll Be Missing You
Time for a new month

Hello September
My MS hopes you are kind
And provides relief

I miss being outside
Hanging with my family
Under the blue sky

So lets celebrate
The start of a new season
YES! YES! YES! YES! YES!

Thursday, August 13, 2015

Wind Quest - my new story published by the National MS Society

"In that moment it dawned on me, the phrase 'second wind' describes pretty much every moment of every day for most of us living with multiple sclerosis."~ Michael Wentink, #MSblog

Posted by National Multiple Sclerosis Society on Thursday, August 13, 2015

Thursday, August 6, 2015

Bittersweet Symphony

'Cause it's a bittersweet symphony, this life..
-The Verve

 
Is it possible for a moment to be both uplifting and disheartening?

The other day my son’s friend came over to watch baseball together.  Talk about a “play date” - they didn’t have those back in the 80s!

I hung out with them downstairs, playing the role of TV channel changer during commercial breaks or whenever a game lost their interest.

For a pair of 8 year olds, you’d be impressed with their knowledge of baseball.  From the big picture of which teams are best positioned to challenge for the 2015 World Series to the smaller “inside baseball” intricacies that occur during a game, they had a blast chatting away and I enjoyed all the questions and comments they directed my way.

Soon they were re-enacting what they were seeing on the field, throwing around a nerf ball as if it were a baseball and they were on an actual baseball diamond.  One of them would squat down as the catcher giving signs for the next pitch that the other would then throw across our living room.

Before I knew it they were discussing basketball and the youth league team they had just played on together.  They started asking if we could shoot hoops on the basket in front of our house and after a bit of deliberation I agreed.

I reminded them the temperature was pushing 100 degrees outside so we couldn’t stay outside for too long.  I also mentioned that I’d probably spend most of the time in the shade but before I could finish my sentence, Vincent told his friend:

“My Dad has MS, so he can’t be outside too long”.

It was a surreal moment.  I’ve never heard Vincent talk about my disease with anyone and I really didn’t know quite how to respond.  His friend took the comment in stride and outside we went to shoot some hoops.

His tone…the way he said, it was so caring and very protective of me and my condition.  To see his empathy towards my limitation was a very tender moment…but I also felt sadness in my heart.

Fathers protect their families, not the other way around and in a perfect world “My Dad has MS…” would never be part of his vocabulary.

Later on in the afternoon, I told my wife I was going upstairs to lie down for a little bit.  While I was saying goodbye to Vincent and his friend, my son was once again reassuring his buddy that everything was ok and letting him know how important it was for me to get my rest.

And he was right.  He took good care of me that day.  Bittersweet moment or not, I’m proud of the kind and caring person he is growing into.

Wednesday, July 15, 2015

It's a socks world and I'm just living in it

I get regular updates from ms.about.com where Dr. Julie Stachowiak often writes/blogs about her life with MS and today she had an entry about "Hot Feet and Multiple Sclerosis". You can read about it here.

What I found most interesting is that I get the opposite sensations in my feet.

I believe I've mentioned my abundance of sock in the past - no matter how hard I try, it's nearly impossible to keep my feet feeling warm and dry. Not only is my sock drawer overflowing, but I also have a pair of slippers for the upstairs and for the downstairs.

If my clothed feet even come in the slightest contact with the cool tile in our kitchen, or upstairs Master Bathroom, then I can feel a chill overcoming my feet and usually have to change into a new pair of socks to overcome this uncomfortable feeling (thus I’m usually wearing socks and slippers around the house).

Also, I'm routinely befuddled by a sensation of wetness on my feet. It literally feels like I stepped in a puddle of water and my socks/feet are soaked...I can't resist checking to make sure they are dry (they are) and often I am required to change into a fresh pair of socks just to try and lose the sensation. Sometimes that works, sometimes not...

I rarely wear flip-flops anymore...if I do wear them for any extended period of time, then my feet end up freezing - even if it's in the middle of a Texas summer.

Dr. Julie also references a burning sensation and that is something I (unfortunately) do get in my feet and hands. As comical as it might sound, there are times when my feet are overwhelmed with sensations of cold, wet and burning pain.

My weekly usage of socks..





Thursday, July 2, 2015

Great news, I'm in the MS Connection magazine!

I'm honored to be included in the latest issue of "MS Connection". The magazine is full of wonderful information and I'm mentioned in the section where they write about some of the many MS Volunteers in our community. Please check it out! Click below to check out the entire issue or here to take you right to the page that I'm on.

Tuesday, June 30, 2015

76 Things: #13 - MS is a pain in the...


The twisties.  Lightning strikes.  The chronic.  Electric shock.  Boiling blood.  Open wounds.  Needle point.
Shift a few words around, or change a verb tense and the array of words above might be mistaken for names of heavy metal bands.

They are also some of the slangy descriptors I use with my wife to explain the various pains I experience from living with MS.

·       Twisties:  It is not the Chubby Checker song; the origin of the name is from the twist ties used to close up bags.  When I’m experiencing this, it’s as if somebody keeps twisting the tendons in my legs and arms as if they were twist ties.

·       Lightning strikes:  This intense pain primarily occurs around my head and face, sometimes in my abdominal area and occasionally in my hands and feet.

·       The chronic:  Continuous (thus the name chronic) soreness and general achiness, mostly in my legs and feet, particularly my left one.  Because of this, I’m usually unable to stand, without some type of aid (for example, my cane or leaning on my wife) for an extended period of time.  Busy days and weekends lead to even worse bouts of The Chronic and I’ll vary between icing the afflicted areas to enrolling my helpful wife as my own personal masseuse.

·       Electric shock:  Different from lightning, it is what it says…my body, usually my hands and feet, experience the sensation as if I just accidently stuck my finger or toe in an electric socket.

·       Boiling blood:  Sounds more ominous than it is; it’s a burning sensation, but to the point where it truly feels like my core temperature is being brought to a boil on stovetop.  This mostly occurs in my arms and legs.

·       Open wounds:  This is more about the discomfort than the pain.  Certain areas on my body (usually my arms, shoulders and legs), will develop a very raw sensation…the afflicted areas are very tender to the touch and remind me of when I was younger and used to skin my knees and elbows  while playing sports.

·       Needle point:  I actually just experienced this while writing right now.  It’s rather self-explanatory…I’ll have sudden and sharp pains, usually in my toes, but sometimes in my hands, that feel like somebody is repeatedly sticking a needle in my flesh.
I don’t like bringing attention to myself and I’m incredibly reluctant to dampen any moment with a complaint or reference to my ongoing battle with multiple sclerosis.  I much prefer the more subtle “grin and bear it” approach.

That method is nice in theory but the reality is I’m a husband, father of two, son, brother and friend.  And although there might appear to be a short-term benefit by keeping the struggles with pain I have to myself, ultimately, it doesn’t make me a stronger person; instead, it creates distance with those that matter most.

As a result, I’ve opened up more about the kinds of random pain I have on a daily basis.  But it has been a difficult process.  Even writing this has been a struggle, I feel like it comes across as equal parts weakness and Debbie Downer.

Maybe it’s because I’m a male, the man of my family, so I feel it’s almost my obligation to accept the pain and move on?  Blurred vision, problems walking around…well, that seems much more grandiose, so it’s much easier for me to talk about it.

But the pain …whether I’m getting dressed in the morning, reading a book, talking with my family or watching the Nationals win another game en route to their second straight division title…the pain is there.  And it never really goes away.
 Womp, womp..



©2008-2017 Michael J. Wentink, Jr., All Rights Reserved.