Five Things

About nine years ago, I was in a meeting at work and the executive in charge declared:

“Five things. I can only remember five things at one time.” 

He said it with a smile, but I understood the larger theme that he was communicating – keep the presentations brief and our recommendations/solutions as clear and concise as possible.

Five things. His words still echo in my thoughts today but for vastly different reasons than what he had originally intended.

I’ve written a lot about the impacts multiple sclerosis has on my physical health. Impaired vision.  Extreme fatigue. The shooting pains, constant tingling sensations and limits on my mobility.

But the fall-out from MS stretches beyond just the physical – it also touches upon the mental.

To be clear, this isn’t about having a brain lapse here and there (as getting “older” tends to do).

It’s about going from rivaling Lewis & Clark in my sense of direction, and being told repeatedly by friends that I should have my own show on ESPN showcasing my sports trivia knowledge, to not being able to even remember where I was sitting in a restaurant.

Yep, that happened. Numerous times, actually.

While enjoying a nice meal with my wife, Imake a quick trip to the rest room. As I exit the bathroom to head back to our table, my mind goes blank.

I try to focus on landmarks, people, anything that might give a clue to where I was sitting. Near the entrance? The bar? A cold sweat forms. I start imagining everyone is looking…staring…laughing, this guy can’t remember where he was sitting!

It hasn’t happened in a while, but on a few occasions I’ve actually called my wife and she’s helped navigate me back to our table.

In the car, I probably drive her crazy as my mind routinely short circuits trying to remember how to find places that we regularly visit, like a grocery store or a friend’s house. Her concern is apparent when she routinely asks, “Do you know where you are?”

Recently, I met a good friend for lunch. It was a destination we used to frequent when we worked together. I arrived early and was stunned that the restaurant was no longer in business and had been replaced by a new one!

I texted my friend the news and he immediately called me – there is no way the restaurant is closed down, Mike…I’m parked in front of it right now. The cold sweat started to form again, a nervous feeling overtook my body as I wondered, where am I?

I eventually found the restaurant (with the help of Google Maps) but in the process was reminded once again of how expansive the reach of MS can be.

The “brain fog” that MS causes didn’t happen overnight.  It has been a slow and, at times, painful process. The fog impacts more than just my sense of direction…and I’ve adapted the best that I can. 

When I worked, I blind-copied myself on every email. Every. Single. Email. My co-workers, unaware of my mental struggles, were often surprised that I had a seemingly endless database of our communiques; inadvertently, I was presenting myself as focused and meticulous. Lemon, meet lemonade!

I haven’t been as lucky in other parts of my life.

I’ve failed repeatedly to return calls or reply to emails from family and friends. Even as my home office is littered with sticky notes and electronic reminders, I struggle to maintain these communications that are so important to me.

Often, I have a difficult time finding the right words to say. For example, I know a dog is called a dog but I’ll probably stumble and bumble my way through describing how the dog looks or how fast it was running. 

While conversing with others, I’ll forget the story I’m telling while I’m in the process of telling it…as a result, I’ve probably told the same story or anecdote to the same person on several occasions (if I have, my apologies!)

I worry that I come across as aloof, uncaring or worse, not a true friend.

Before meeting up with others, I’ll frequently ask my wife to remind me of certain particulars: names of children, any important recent news – those five things – except, I’m not living the hectic life of an executive that has thousands of employees and meets with hundreds of people each day. When they request brevity for the sake of efficiency (and their sanity,) you can understand why. 

Me? I’m just a guy with MS that sometimes can’t even remember the name of some of his closest friends.

I’m not backing down from the challenge of the MS “brain fog.” I’m routinely working on puzzles or playing games that help stimulate my mind.

I constantly use the aforementioned reminders and my wife serves as my teammate and biggest cheerleader.

And I always go back to the mantra of Five Things. For me, it’s more of a mindset than a policy.

Life is too precious to worry about things you can’t control. Sometimes, while stressing over the minor potholes that life throws our way, we lose sight of the five things that truly should matter. What are those five things for you?
Tags Symptoms      16 Appreciate this
| Reply
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.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    28 Comments

  • Avatar
    silverfeather31  Jun 1, 2016 12:43 PM
    Thank you! For several years now, I've had to turn to my son and say "Where were we going?" Because it is lost to me. Words vanish and sometimes even the descriptors are gone. This really touched me and my experience. Thank you so much for sharing it!
  • Diana Mackie   Jun 2, 2016 4:26 PM
    I wanted to cry when when I read your post, it resonated so strongly with me...until I read your brief bio. I am 67 I was diagnosed when I was 32. I realize I have much to be thankful for. I have done very well the past 35 years. However a trip to the Apple store to buy an updated phone (i did not really want) left me feeling like a total idiot. It's ok I realize that it comes with the territory. Thank you for sharing your journey.
    .
  • beka   Jun 3, 2016 5:26 AM
    hi from beka in austin! my ms effects mobility & dexterity/coordination. i often do not leave the house without a wheelchair. haven't driven for nearly 5 years. i am 62 & always wonder if my forgetful moments are age or ms. thanks for writing 5 Things.
  • Sherrie   Jun 4, 2016 10:35 AM
    You are singing to the choir! Thank you so much for this as I thought my mind was playing tricks. I suffer almost everyday now from brain fog. It used to only be once a week. Even after I drink coffee still a fog remains. I was diagnosed in 2003.
  • Kelly   Jun 4, 2016 12:24 PM
    Thank you for sharing this aspect of your life with MS. I've recently and really for the first time have experienced cognitive issues with my MS. It's frustrating, scary, and almost bizarre. I spent a morning last week writing a 'c' instead of a 's' in simple words. I knew it was a 's' but yet wrote the 'c'. It was short lived but it really was difficult to comprehend why it was happening. I'm 38 and was diagnosed at 22. This is a new area of the disease that I know I'm going to have to learn to cope with.
  • Jennifer   Jun 4, 2016 12:54 PM
    My sister and I both have MS. I did not have the cognitive side affects nearly as much as she did (she also was forced to retire before 40 due to "MS Brain", incredible fatigue and actually being fired for not being able come in to the office after her work from home offer was rescinded. I never completely understood until this year when I was 'promoted' into management, was faced with large amounts of stress, multiple competing tasks, and have found myself not being able to remember anything from minute to minute, much less day-to-day. The stress makes it worse, but I find myself fearing for my job. I appreciate your blog and hope to learn some tips to balance life, family, health and work. The added stress has surely exacerbated my MS and is not worth it.
  • Jennifer   Jun 4, 2016 1:26 PM
    I hear you! Great to know that someone else is in the same boat. Sometimes you feel like such a numpty! 😠
  • Suzi Chaplin   Jun 4, 2016 3:03 PM
    Thank you for sharing. This sums it up for me as well. I forgot where my children's school was and its only 7 mins down the road. At 10 and 12 it was weird for them they were nervous I would get home.
  • Valerie   Jun 4, 2016 4:40 PM
    I taught for 25 years and was diagnosed in 2006, which was 5 years before I retired! I retired in 2011 through disability. I explained this "brain fog", to my teacher parter as being in a forest and couldn't make my way out because there were too many trees! It got to be the big joke between us, (our own little secret), so to speak. On days when I was in denial of how exhausted I was or forgetting the subject matter for a particular lesson, she would say, "Hey! Are you in your forest today?" I would smile as my eyes filled with tears, and laugh and say,"Yes, I'm lost! Can you find me?" Then she would say to my class, "Okay kiddos, today we are doing things together with my class!" The kids, who never suspected a thing would gather their stuff and we'd all go across the hall to her room. We team taught a great deal of the time so we were constantly swapping kids back and forth anyway!
    I don't think she truly knew how much I appreciated her just being there and helping me out of the forest!
    But I think I like brain fog better. It truly expresses how you feel!
  • Ann Lindstrom   Jun 4, 2016 5:29 PM
    Brain fog was the major cause of leaving the working world when I was 51. I had to look at my email to remember the name of the company. I could explain the technology I was working on, but couldn't remember the term for it. I am now 66 and things are definitely taking a turn for the worse. The other day I said to my husband "I used to be so smart!" His reply was perfect - "You are still smart, it just takes longer."
  • Annette King   Jun 4, 2016 5:48 PM
    I manage on Face Book Metamorphosis =MS. I opened the page a few years ago with the intention of blogging my own journey with MS. However several acute bouts of exacerbation's have left me less than enthusiastic on a daily basis. I am 64 yrs old was diagnosed finally 10 years ago but retrospectively now know I have had RRMS since my early 20's. In the past ten years I have participated in the Menzies Institute for Medical Research; AusLong 2 Study into Multiple Sclerosis.
    Initially I was considered to be atypical RRMS and so was valuable to the study for that reason, but in the space of four years have deteriorated spectacularly, to the point where it is a daily struggle to attend to my ADL's/activities of daily living. Grief over the loss of functioning has me struggling with my symptoms and depression. I am at a point now where I am attempting to teach myself to reach back and teach my mind and body to be normal again.
  • Tess Robertson   Jun 4, 2016 9:14 PM
    Dearest Michael, thank you for sharing this part of your life with us. You are so amazing to me, please don' t ever stop sharing. You do so much with your family that is so important. That was so touching your day with Vincent and GiGi. What a blessing!!! You all are a very special family, full of so much love and togetherness.
  • janmarie55  Jun 4, 2016 10:15 PM
    Oh yes, thank you for this article. Hits home. I have even gotten in the car and totally gone black and forgotten how to drive! MS is not pretty, and what it does to our brains is the saddest, most heart-wrenching thing it does.
  • Karen   Jun 5, 2016 3:37 AM
    Thank you for sharing. I was diagnosed this time last year and have started to experience brain fog. A couple of days ago, for example, I drove past a road sign close to home. It had a village name on it that I had known all my life, but I just couldn't recall where it was or what it looked like! I thought about asking my friends, when I reached my destination, but felt a fool. Luckily, a few hours later I drove through that village on my way home. I was so relieved. I guess I can look forward to more of the same! Good that there are people out there in the same situation blogging about it. I am not alone.
  • Longhaulpaul   Jun 5, 2016 11:04 AM
    100% spot on.
    My Column in June's ABILITY Magazine titled, Name Dropping, deals with the same cognitive deficits. A hidden side of MS that can bring seconds of sheer terror or embarrassment that other people think they understand because they lose their keys.
    Assistive technology such as smartphones and GPS units alongside lists and keeping routines are what get me through each day.
    Great post!
  • Bahareh   Jun 5, 2016 6:43 PM
    Sometimes it rather funny how other people find themselves so smart infront of me ! Or sometimes so much irotating
  • Bahareh   Jun 5, 2016 6:43 PM
    Sometimes it rather funny how other people find themselves so smart infront of me ! Or sometimes so much irotating
  • Bahareh   Jun 5, 2016 6:43 PM
    Sometimes it rather funny how other people find themselves so smart infront of me ! Or sometimes so much irotating
  • Jeanne Lee   Jun 6, 2016 5:29 PM
    I, too, was diagnosed at age 31, but that was in 1973, after many, many trips to the hospital. I am 74 now and still not letting MS control me. I also have the brain fog, which can be very frustrating, but we just have to laugh it off. I enjoyed your blog very much. I have been lost in a restaurant before but had not associated it with my MS. Good to know. I wish you as many plus more years as I have had. Just remember to say "no" when you are tired, which was the hardest thing for me to learn. Take care.
  • Avatar
    teeter1122  Jun 8, 2016 10:50 AM
    I know what this is like. I have just been diagnosed with MS but been suffering from the symptoms for about eight years now. Certain things stick but I forget more than I can remember. I am grateful for my wife who does not get upset with me when I ask the same question twice or more. Michael, I am going down the same journey as you. 2008 is when I started with symptoms. I too live in San Antonio and I am right there with you bro!
  • suZ   Jun 13, 2016 7:49 PM
    I have had brain fog for a long time, but never had a name for it. I have always just said "it is a tough day today". I am so lucky and blessed to have an understanding and supportive family, that we can come up with alternatives that may solve a new challenge. The thing that has helped me the most and may help others is very simple. When you start getting ready for the day, do it exactly the same way each day. It may require a list in order to be done. The things I'm talking about are brushing your teeth, talking a shower (soap up the same way, and rinse off the same way), dry off, brush hair (style it), etc. Whatever your routine is, KEEP IT SIMPLE, AND KEEP IT THE SAME.
  • NordicMA  Jun 22, 2016 2:12 PM
    Appreciated the story of Michael Wentink's life with multiple sclerosis. I was diagnosed with relapsing-remitting MS 40 years ago. That was after I got my MBA in Finance. Started with facial numbness. In time I had to leave my job in customer service for a financial service company. The pressure of working with products in different currencies with customers around the world was my tipping point. My life is more isolated now and I had to stop driving because my reaction time was too slow. The important thing is ATTITUDE! People are surprised how positive I am. My thinking is "at least it's not fatal!" Try to stay positive, socialize with positive people and find the fun in life. Life is really a gift.
  • Lizel Diloy   Jun 28, 2016 9:53 AM
    Michael, I was so touched by your story. I don't have MS and Just really start reading about this disease. I happen to be a volunteer for the upcoming MS Walk in Sugarland this coming November and now part of the committee. I know I landed on this position by fate, not sure the reasoning behind it but I'm sure it's for a good cause. As I start understanding more and more about MS thru people like you, I felt so compelled to really help out, the fear of not knowing where this MS would take you and how to prevent it and living with MS is a real journey, that's worth sharing.

    Thanks for sharing your story, this made me realize on how fortunate and blessed I am and not to worry about the lil' things that life throws at me because there's more out there to be thankful for. Thank you from the bottom of my heart.
  • Excadet  Jul 28, 2016 9:03 AM
    You are such a wonderful writer! I enjoyed reading your post so very much, that I almost feel guilty about it (because of the topic). I am quite a bit older than you, at 56, and most of my symptoms have resulted in a loss of mobility. So far, I think I have been lucky enough to not have "brain fog," but after reading this, I have a new awareness of the many cruelties that MS can inflict. Your description is very good and helps me understand better. Keep writing. You have a gift. 😎
  • joygun  Aug 16, 2016 1:48 PM
    I enjoyed your straight forward presentation of MS problems and your ability to cope and unique methods of handling a MS hiccup. Keep it up!!!!!!joy
  • joygun  Aug 16, 2016 1:48 PM
    I enjoyed your straight forward presentation of MS problems and your ability to cope and unique methods of handling a MS hiccup. Keep it up!!!!!!joy
  • joygun  Aug 16, 2016 1:48 PM
    I enjoyed your straight forward presentation of MS problems and your ability to cope and unique methods of handling a MS hiccup. Keep it up!!!!!!joy
  • joygun  Aug 16, 2016 1:48 PM
    I enjoyed your straight forward presentation of MS problems and your ability to cope and unique methods of handling a MS hiccup. Keep it up!!!!!!joy