Chachkies 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 raging wind. 

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.  

 

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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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    16 Comments

  • Avatar
    refusetoquit  Jun 17, 2014 10:52 AM
    Huh...............STILL ending my career and house I lived in...............I understand the abruptness of 'the end', like I was never there. Was able to, just last week package up a painting from my business I truely loved but have no place for it.............the GOOD news, it's going to a fellow MS'er that has a French Room where it can hang.

    Today, just before finding this blog, my mother, my caregiver asked what to do with two other pics, as she's loading the remainder of 'me' to take to the church Rummage Sale. TAKE THEM! 2011 was my abrupt end to work, and 'today', the last of it is cleared out. ...............Been enjoying re-inventing 'me', There's more time for 'thought', something work left little time for.

    Makes me think of , when working, there's always someone to take your place..............no one said 'how fast' it happens...........LIFE IS WHAT HAPPENS WHILE YOU'RE MAKING OTHER PLANS.......I understand now.
  • Elaine Quinones   Jun 17, 2014 8:34 PM
    In May 2007, I purchased my very own apartment in a rather upscale area in Queens, NY, known as mini-Manhattan. I had a doorman, a terrace, a huge selection of stores to shop, all within walking distance, and was no more than a half hour train ride into Manhattan and my job where I am a Legal Assistant at a very prestigious international law firm, working for a very well known partner in the corporate financing group! Life didn't get better than this. I finally made it , I " moved on up".

    Then five month's later, I began getting terrible pains in my legs and as the months moved on, my legs began getting weaker to the point where I had to stop at a pharmacy on my way into work one morning to buy myself a cane because there was no other way for me to walk another half a block to get to work without falling! I knew there was something terribly wrong here. I left work that night and didn't return back to work for about a year and a half.

    At first the doctors couldn't figure out what was wrong with me -- they thought it was my back. They gave me cortisone shots, to no avail, then they sent me to pain management doctors, also to no avail. Then I began to suffer from numbness in my legs and feet; I felt as if I was walking on tennis balls; and then developed terrible vertigo which lasted for about 2-3 months. Within six months I developed all these symptoms, was admitted into three different hospitals and then finally, went to my current neurologist who diagnosed me with MS within a week, put me in the hospital for steroid infusions for a week and started me on Betaseron injections.

    I went back to work a year and a half later, worked for six months and had another exacerbation; got better, went back to work a year later, had another exacerbation; stayed home again for eight months and then again, returned to work for six months and have been home again for a little over a year and am hoping to return back to work yet again, within a month or so.

    I have absolutely no complaints about my law firm. They have taken me back so many times that I am extremely grateful. However, I have been an exceptional employee of their's for about 28 years now, so that had a lot to do with it. My only disappointment was that after the first two exacerbations, I became so tired that I couldn't find the "push/drive" (my favorite words when people are trying to encourage you to get back into the working life!) to get into the office anymore and I found myself calling in sick often. One day, the partner who I had worked for over eight years, called me into his office and told me that he was having difficulty keeping up his practice because of the "inconsistency" that my absences were causing him. I was, of course, devastated; not only was this man my boss; I was also his friend and confidante. He went to my father's memorial, we knew each other for many years since we both worked at another law firm together and I was invited to both of his son's bar mitzvahs! He went on to say that both he and Human Resources felt that it would be "better for both he and I" if I floated as an assistant to the firm! I never floated within the firm for more than a week and that was only because I had just begun working there and that was the agreement under their terms of employment at that time. Floating was looked upon as a "loser" position; a spot for the assistants (then known as "secretaries") who really weren't at the top of their game!

    So, I also had to pack up my eight years of chackies and pictures (four banker's boxes worth) and begin what to me felt like a new career as a loser. The partners of the firm knew me and who I worked for, so the first question that I was always asked as I floated to different assignments (still being sent to partners) was "what happened with you and Joe". As if we had gotten a divorce, which was truly what it felt like. It was degrading.

    Today, I'm still employed by the same law firm, am now 55 and am extremely grateful that they kept me, especially when I hear so many stories of so many people with debilitating diseases losing their jobs basically because of illnesses that cannot by controlled. Of course, it's never discussed that an individual is being let go or asked to resign because of health reasons; that would be illegal! It's always for another reason, like "inconsistency"; that which translated into "sick days" for me.

    It's a hard, cruel world out there and I'm not sure what to think. My "professional" side tells me, of course he let you go, it's just good business"; the "human" side of me says: "WTF! I showed them that I could handle any and every situation that came my way, they put it in writing on all my evaluations, every big named partner in the firm wanted me to work for them when I was available and now, because I can't be "consistent", I must lose it all?" That just doesn't seem fair! And now, when my MS acts up "inconsistently" and I feel exhausted and depressed and numb and dizzy and suffer from pains and hearing loss, and my doctor says "stress is the worst thing in the world for you" and "you must try to rest during the day, even if it's a ten minute cat nap, who can I fire or ask to step down? It truly is a conundrum. But I'm happy to be alive and sill kicking!
  • Avatar
    refusetoquit  Jun 18, 2014 10:13 AM
    Wow, Elaine, you're a fighter, lasting longer than any I've heard. Stress IS against you...........I fought until my feet wouldn't lift anymore, maybe for the best. My type A personality didn't allow taking care of myself. Looking back, if I would have taken time for ME, maybe I'd still be walking. A 'floater' sounds like 'the silver lining'. You're still active.........use the time between floating to your advantage. I know, a lot of swallowing your pride but sometimes it's for the best. You HAVE 'made it'......show those at work you can work through anything that comes your way as you take time for yourself.
  • Carrie   Jun 18, 2014 10:32 AM
    This was a fantastic post. My father has had MS for over three decades and refuses to leave his job. We understand how hard this transition will be for him but for many ethical, financial, and personal reasons he has to stop. Do you have any suggestions to make the transition easier especially for someone that is refusing to stop?
  • Elie  Jun 18, 2014 11:09 AM
    To "Refuse to Quit": Thanks for your support. At least you're looking to reinvent yourself and moving on. I'm not there yet. I feel like I'm just going through the motions. Good luck to you and keep fighting!
  • Avatar
    refusetoquit  Jun 18, 2014 12:59 PM
    Carrie, wish there was help in that decision. When I was diagnosed EVERYONE said 'quit'. Thirteen yrs later I did..............a persons identity is wrapped up in their job they love. The harder you push, the more the claws hang on......haven't thought of an answer to that one yet. I remember wishing people would just let me forget I had MS. Head in the sand? Maybe, but it was my head I was dealing with...........all those supposedly 'new' ideas people had for me angered me more........like, I didn't have the brains to think of it! WE DO, WE HAVE, WE CHOOSE IN OUR OWN TIME. Sorry, maybe it's just me.

    Eiilie, 'motions' come first.......at some point the 'letting go' happens with no alternatives to be had. At some point 'my clients' I loved, were'nt as important as me, and as Miichel says..........DO IT DIFFERENT.......you're capable.
  • Stella A   Jun 18, 2014 1:43 PM
    I really connect with this Aha moment, and "Dust in the wind" by Kansas. Mine happened 6 months after I was married and bought a house. One day I woke up numb from my ribcage down, May 30, 2012. Nothing has been the same since. I was one of the typical type "A" personalities until MS reared it's ugly head. Now, my house is gone, my husband is gone, and without God I would be lost. Took me 2 years to come to terms with my predicament. Thankfully, I had the support of my true friends and family. Without faith, family and friends, I would be just another statistic.
  • Tony   Jun 18, 2014 8:33 PM
    I have lived my life with difficulty, and no answers. I've worked since I was 16 at a regular job, before that I worked for my grandfathers business......at a very early age. I had a heat stroke at 12, depression, and the list goes one: Afib, fatigue, numbness, muscle twitching, dizziness, burning feet, vertigo, etc... . . Diagnosed by an Ear/Nose/Throat Doc. due to tinnitus, then four confirmations: Nero docs, MRI nurses, and a Brain Surgeon two years ago. I havent seen the Nero doc in two years, but I have an appointment soon. My list is long, and lots of questions.
    I knew I needed to see him when my knees started giving out, I hardly can bend, so I use my bad back..........dropping things constantly..,,,,standing on hard floors all day, and stress of making a living.......after getting an MRI on my knee the Orthopedic Doc said "find an office job!".......O, and your knee inside looks "interesting" what did that mean??? I didn't ask. Maybe because I didn't want to hear the word wheelchair.......my biggest nightmare! I've thought out my options, and being alone in this world, the only answer I can come up with is Disability................$1,500 a month..........how sad, and the fight to actually get the disability.......a year without work, can't draw unemployment (that's for people who are looking for work).
    All I do is stress out about the day when I can't stand, hear, focus, keep my train of thought, drive to work or drive at night........ MS was my answer to "What has been, and what is wrong with me". and now I'm left with the question.....How will I survive MS?
  • lori   Jun 18, 2014 9:10 PM
    I worked since I was 15. Sometimes two jobs. I worked at switchboard and
    Receptionist since 1990. My last job was at receptionist at a convention
    Center. I got dx feb 2012. I was very otimistic I wasn't gonna give up.
    But 2013. It hit me the fatigue the memory loss. Then my speech. I went
    Part time applied for ssd was denied.

    Then went back full time. Causes a relapse going to hospital. . Then after 2nd
    Relaspse and my co workers still tsking me to hospital agsin. I resigned. Filed
    Again denied again. Waiting for a court date have a lawyrr now.
    MS Is so hard Ive had no money since 09/12/2013.

    Good luck my friend keep blogging. .

    Lori
  • Samantha   Jun 18, 2014 9:24 PM
    Thank you so much for sharing. I a 3 months newly diagnosed at th age of 39 with RRMS. I am terrified often of the unknown. My oldest sister has had the same for 11 years. The lack of answers is frustrating! As there are so many

    unknowns about MS. My sis has had to

    quit nursing and live on $700 a month from Disability due to blindness in her left eye,not able to lift patients nor drive very well...She is all of 90 lbs. And it saddened me to see her this way,As well as a divorce from a 16 year marriage! I currently am on Copaxone 40 M
  • Teri   Jun 18, 2014 9:26 PM
    Oh yes I can relate to all the comments too. Its been almost 1yr since I had to leave my job as well, never thought it would happen but when I started to fall, and I mean falling from simply bending over to pick something up and not being able to recover from losing balance and knocking out a whole display (more than once) safety became an issue especially when I often worked alone in the store which required alot of physical work. I managed the store for 17 yrs and 2yrs after my diagnosis I was giving my 2wk notice and seems like that" dust in the wind" no thanks or even a phone call, so I realize your only responsible for yourself, and most important is you're family...they need you the most!!
  • Samantha   Jun 18, 2014 9:36 PM
    Hello again! I do apologize. I am typing on a phone that is not much good anymore! I would be on the PC, However my 5 yr old daughter "Bean " is on NickJr playing games! She is my sun,my moon,my stars. I am terrified for her too. Not only does she have to see me do shots(& I'm not talkin' about whiskey!) 3x's a week, her dad is Diabetic and takes insulin shots twice daily! Not much hope for her healthwise? My MS started with numbness in feet and eventually numb from waist down and my hands too. Of course several symptoms in the past...Vertigo,Ben told pinched nerve in back causing numbness. Lost vision in left eye temporarily,told I had carpal tunnel in hands! All signs of/symptoms of MS within twi year period! Talk about pissed off & wanting to sue somebody!! Again thanks for everything you share and any words of wisdom and/or comfort are truly appreciated/needed.
  • Liza   Jun 19, 2014 11:14 AM
    Thank you for your insightful comments and thoughts in "Chachkies in the Wind."
    My mother was diagnosed with MS in her early forties, and I was too--in my late twenties. Althought I was able to wonk into my mid forties, annoying limitations and stress caused my doctors to place me on long term disabiloity in my mid forties. What? Yes, it happens/happened.

    Over the years, I am reminded, each day, that dealing with MS is more than a seminar or counseling appointment--it is accepting constant and, many times, uncontrolable change.

    Try to:
    * Surround yourself with understanding people;
    * Live in a comfortable/adaptable environment;
    * Accept that each situation can be a challenge; and,
    * Maybe, get a pet (not ours--we have a premadana dog, but looks good in pictures).

    Each day, I try to SLAM MS...fair is fair.

    P.S. Keep writing! You have a true talent.
  • Avatar
    refusetoquit  Jun 20, 2014 3:13 PM
    It's so nice hearing other's stories.........a group like this in lending an understanding ear is great! We ALL were 'hit with a brick'.............we all have found, or 'working on' surviving after MS. It feels strange making it out of 'the dark unknown tunnel being content (for lack of a better word). Not giving up, just understanding I'm NOT in controll outside of my doing everything I can to help. THE FRUSTRATIONS HAVE BECOME A WASTE OF MY TIME. Just know there IS a peaceful place you can get to.............we all have different timing.
    Kathy
  • darcher06  Jul 7, 2014 5:04 AM
    I am a Desert Storm Veteran, which I attribute my diagnosis to, unfortunately the military did not agree. I did not get service linked for medical, which would come in handy these days. I didn't start college until I was 27 and a single mom, but was able to obtain my Business degree before I turned 30 with a 3yr old by my side. A few months after I landed a Catering Director job with Jason's Deli I started to experience what was to become a new lifestyle for me. One morning after delivering a large order to a business, I went to the restroom and the seat felt cold on one cheek and hot on the other. I thought I might have damaged something during the delivery...I was wrong. I was lucky enough to have family who worked with a hospital and got in for an MRI within a week. The scans showed lesions on my brain and spinal chord. A few weeks later I went blind with Optic Neuritis and was diagnosed with Relapsing Remitting MS. I had to stop working at Jason's Deli(a VERY supportive business) and was basically home bound for many months. I always had the outlook that if I could keep my independence, that I would be fine. I took the humorous approach to the whole disease. I made a t-shirt that said "I am not drunk, I have MS" and tried to laugh at my clumsiness, frequent falls, and slurred speech. Twelve years later after being re-educated as an ESL Teacher, I don't find things as humorous anymore. I have had to recently quit my teaching job due to cognitive impairments. I can hardly walk due to the left side of my body steadily deteriorating in strength. I have suffered severe depression because I have lost my sense of self and have been unable to contribute to society. My daughter has suffered because I was not there for her the last two years of her high school. I have failed her miserably, as well as, in my job at teaching. I have worked and have been self sustaining since I was 17, and now at 43, I am unable to support myself. I am looking for my "peaceful place" and the fulfillment I received being a parent and teacher. I had a knack for taking care of kids, and now I have a hard time taking care of myself. I have lost friends, a husband, the respect of my daughter and the ability to see a light at the end of the tunnel. I truly admire those of you that have kicked this disease in its butt and keep on keeping on. Kudos to you, hopefully I will find that peace in my life, as well.
  • Janine   Apr 18, 2016 4:30 PM
    I enjoyed this note. The words summarize it all. Spend your time with what is important to you...with or without MS. I am with Michael, I became more appreciative and more engaged with people after the news. I am so fortunate...actually :}