Thumbs Up

One of the hidden blessings of living with multiple sclerosis is how much more time I’m able to spend at home with my family. There are no long hours at the office nor cross-country business trips that keep me away for days or weeks at a time.

But within that good fortune is a difficult paradox to navigate: I’m here, but technically, I’m not always *really* here.

Pain throughout my body and persistent fatigue interfere with many activities. Vertigo may strike at any time, leaving me feeling uneasy. But to my family, or even just a casual observer, I look like just another regular, 30-something male.

However, to borrow from the disclaimer on most automobile mirrors, “Individuals Living with MS May Appear Healthier Than They Are”.

What gets lost in this world of looking like a “regular Joe” (or Jane) is that the people close to you who know you have MS – including yourself – might sometimes forget that you actually have MS.

In my opinion, that’s not entirely a bad thing. I guess the Product Manager really never left me; I want to provide my family and friends a “seamless experience,” where MS complicates or hinders their lives to the smallest extent possible.

A few weeks ago, after a day-long IVIG treatment, I pushed myself to attend a play at my son’s school. He had been excited for months about this night and although I looked forward to his performance, I had very little energy to spare.

A parent sometimes missing an athletic event, or school play, isn’t an uncommon occurrence and I think it’s something that most kids grow to understand and even expect. But when my kids look out into the audience and don’t see me, it’s not because I had to work late, or couldn’t catch an early flight home. Rather, the last time they saw me, I was relaxing….in a chair…at home.

And that is where the beautiful Norman Rockwell painting of having more time to spend with the family clashes with the reality of living with multiple sclerosis. 

My children see me but must wonder why I don’t play more with them outside? Why, when I’m helping them with homework, do I just start grimacing when hit with sudden shots of pain?

To be clear – I’m not a perfectionist, far from it. 

Handyman, I am not. My singing can make a grown man cry. Don’t ask me for directions or you’ll likely end up in Siberia. Arts and crafts? My children’s skills exceeded my own by the time they could walk.

And I’m at peace with these and other similar examples. One has to know his strengths. It would be an inefficient use of my time to perfect my craftiness or how well I sing “Shine On Your Crazy Diamond.” 

That doesn’t mean I don’t enjoy drawing, cutting and pasting silly pictures with my kiddos on a Saturday afternoon while belting out a ballad by Pink Floyd. Sometimes it truly is the heart that really matters, and not everything I do needs to be classified as “Father of the Year” award material.

But needing to choose rest over just being a Dad? That stings. It’s a different category from the previous examples because supporting and inspiring my family define who I am.

As we drove to my son’s play that night, I wondered to myself, “Would it be easier to miss one of my children’s events if I was at the office or out of town?”? 

I’m not sure if satisfying answers exist to theoretical questions such as this…but, without any glamorous stories of closing deals or travel to a distant city to explain my absence, I worry my children might think I’m just not that interested.

As my son takes the stage, this internal debate in my head fades into the shadows. His unbridled enthusiasm lights up the room, he sees me in the audience and gives a thumbs up. In that moment, I forget I have MS…and I wish it could last forever.

Tags Parenting      15 Appreciate this
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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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    19 Comments

  • Teri George   Apr 7, 2015 11:25 AM
    And.... I'm crying. I can relate to this on almost every level, but from the view point of being a mother. I struggle with these very issues all the time and ask myself the same questions. I am still in pain from attending my youngest son's Easter egg hunt this past Friday at his school, where I thought they would walk me to death. But watching another student cry because her mother wasn't there as my son searched for eggs yelling "do you see any Mommy?!" with a huge grin on his face made it all worth it. It can be tough sometimes because there is judgment that comes with it. Like I use the MS as an excuse to be home and not have to work anymore. Which is hard, because I loved my job and took a lot of pride in my work.

    Thanks for sharing your experience with everyone! I hope it helps spread awareness!
  • Gerri Ballas   Apr 7, 2015 11:30 AM
    I was so touched by your experiences and have some similar - the fatigue. Yes, you are blessed that you have family and love to see you through this life-taking disease. You are an inspiration. God bless and keep you!
  • Nina5176  Apr 7, 2015 11:40 AM
    What an amazing story! Thank you so much for sharing.
  • Christi   Apr 7, 2015 11:57 AM
    Michael, I can understand your anxiety about this. But I can tell you, my own father, a Michael just like you, was diagnosed with MS before he even met my mother. I never knew a Dad that was "healthy" or "normal". I had a Dad who got tired easily, who couldn't do all the things he wanted to with me. But I can tell you that I had the best dad I could ever dream of knowing. He was patient with me; he talked with me about everything. He knew me better than anyone because all those times he needed to just sit in his big chair and relax...well, those were the perfect times for me to sit with him and talk about all the things that were on my mind. We talked about school, boys, politics - and yes, even his MS. He told me he felt bad that he couldn't teach me to ski (an activity he loved growing up) or do other physical activities that Dads often do with their kids. But I always felt like, "So what? You do so much for me already." Have faith in your kids to accept your limitations. They are probably more understanding than you think. And consider one more thing: as a kid, I had to learn so much about patience, and about what makes people different - more than most of my peers. As an adult, I have understanding, patience and empathy to spare. I value volunteering and giving to those in need because I know firsthand what simple kindness really means. I bet your kids will too. <3
  • Alex   Apr 7, 2015 12:04 PM
    As a child of someone with MS, I hope I can speak for most of us and say "Try not to worry, we know it's not your fault, and we'll understand some day." My mom was diagnosed at 34 when I was 6 months old. By the time I was in 4th grade she had to retire early, and by 7th grade she could no longer drive herself places. My dad was a restaurant manager, so between my mom's MS and my dad's crazy work schedule, neither of them could attend many of my concerts or plays. It wasn't always easy, but I understood. And then the times that they were able to come, it was very very special. I'm a parent now, and I hope that I'll be able to make it to everything I can. Just make sure you explain it as much as you can. Make sure your kids know what MS is. Use the Keep S'myelin resources to help teach them. If they understand, maybe it won't be so hard.
  • Yvonne   Apr 7, 2015 12:46 PM
    As a mother of one son (which I had at 49) I too understand every word you say. I was diagnosed 2 years after I had him. He will never know that I was once a business owner who did computer programing. He only knows the MS Mom I am now. Every day I hope it is enough.
  • Carla Maria   Apr 7, 2015 1:17 PM
    Hello
    I was diagnosed with MS in December 2009 I had 37 years and continues to be a struggle, but I know my limits but I still have a lot to give and want to do and can do many things. However I continue to search for a job which can make according to my limits. Force and we are strong to win the MS. I´m from Portugal.
  • Michelle   Apr 7, 2015 2:43 PM
    Hello, Thank you for sharing. It's good to know that we are not alone. My husband was diagnosed 18years ago, then against all odds.. I was diagnosed with ms also in 2010. We have two beautiful girls, 13 and 7. My youngest as always seen her dad in a wheelchair but my oldest remembers when he was walking. i'm still working and he is on disability as a stay at home dad. Most of the time he can't go to things since he can't drive. I have to do almost everything. It's nice being able to relate to each other but my husbands congnitive side is going now and I was explaining this to my oldest when she asked "Mom, is that going to happen to you too?". My heart dropped because I couldn't say no..even if I wanted to say no. I couldn't gaurantee that. All I told her is that there are great meds out now that I have been able to keep it under control with so that is what we are going to hope for. Hang in there. Thanks for sharing.
  • dide   Apr 7, 2015 6:04 PM
    Enjoyed your story, yes many people seem to forget that one has MS, we all look normal, well at least I wear a leg brace and use a walker, that way i notice that some people don't even notice I am there I call it being invisible.
    The last paragraph about when your son looked out and saw you there made me tear up. I subscribed to your blog and look forward to hearing more from you. I too was forced to retire in 08 but MS has been a good thing i had been a over worker, working 35 yrs in service to people with disabilities, then ironically got MS, but the good part is that i found my journals from the early eighties when i lived in the woods doing timber inventory in the Wallowa Mts in eastern Oregon, well i wrote three books. I never would have found the time to do them unless i would have gotten MS.
  • dide   Apr 7, 2015 6:04 PM
    Enjoyed your story, yes many people seem to forget that one has MS, we all look normal, well at least I wear a leg brace and use a walker, that way i notice that some people don't even notice I am there I call it being invisible.
    The last paragraph about when your son looked out and saw you there made me tear up. I subscribed to your blog and look forward to hearing more from you. I too was forced to retire in 08 but MS has been a good thing i had been a over worker, working 35 yrs in service to people with disabilities, then ironically got MS, but the good part is that i found my journals from the early eighties when i lived in the woods doing timber inventory in the Wallowa Mts in eastern Oregon, well i wrote three books. I never would have found the time to do them unless i would have gotten MS.
  • Patricia Mazon   Apr 7, 2015 9:32 PM
    I know how it is not being able to do things with your child. I have 3, with my youngest 9yrs. I was diagnosed in 92', 93'( don't remember the exact date). Had to quit my job after 19yrs and go on disability. I try to move around as much so I won't go crazy. The heat is coming, so for me it is hibernating time, which then puts a strain on my relationship because I don't go out around that time. I get really tired and at times, just don't know n what to do
  • Tamera phelps   Apr 7, 2015 10:54 PM
    A couple times a year like a drink. When my doctor disabled me I couldn't belive I had to quiet my job I was one of a few women maintenance a certified worked on ac,s stoves painted ect . I had known I had bad neck/back but never bothered me unless I pressure washed builders Dr sent me to see about neck/back problem because I was falling a lot null gest did blood work spinal tap brain scans said I had MS I was shocked so I walk like a drunk , can't ride a bike anymore Harley Davidson I was very shocked I'm trying to find out all I can about it
  • Tamera phelps   Apr 7, 2015 10:54 PM
    A couple times a year like a drink. When my doctor disabled me I couldn't belive I had to quiet my job I was one of a few women maintenance a certified worked on ac,s stoves painted ect . I had known I had bad neck/back but never bothered me unless I pressure washed builders Dr sent me to see about neck/back problem because I was falling a lot null gest did blood work spinal tap brain scans said I had MS I was shocked so I walk like a drunk , can't ride a bike anymore Harley Davidson I was very shocked I'm trying to find out all I can about it
  • Avatar
    FWilson  Apr 8, 2015 6:09 AM
    Yes I was the absentee dad fore most of my life being an over the road truck driver. I was almost never home, missed my kids growing up and lost connection with my wife ( whom is no longer my wife). I can't blame it on MS just bad judgment on my part. My kids are now grown and have there own lives and some time I am invited to the party.
    I am now remarried and have 13 year old little girl (women) who has become the center of my life and I do now have MS? Making the right choice at the right time is not always easy and some what you think is right may only be right for you and not the ones around you, as I have found out So cudos to you sorry it took MS find this out, I have excuses for my lake in judgment.
  • JoDee   Apr 8, 2015 7:37 AM
    I love your reference to automobile mirrors! That is so true. The only good thing about being diagnosed with MS for me was, diagnosed after my kids were grown. I had to quit work -cognitive issues,fatigue and pain.
  • Alana   Apr 9, 2015 1:15 AM
    Thank you for putting into words what my brain has been tolling over for the last few months. I totally relate to what you are saying. The struggle of being a parent with this disease is very trying. When you said "my kids just see me resting in a chair" it really hit home for me. Sometime I feel like they see too much of that and ask myself what do they think. While we have talked to them (my husband and I), they are still young and I dont know how much they really understand. Add that on top of what they hear people say to me and about me and I just feel like I am fighting a losing battle. Your post gives me a little boost to know that I am not alone in this struggle and maybe I won't necessarily win the award for worst mother ever.
  • Margaret Burris   Apr 11, 2015 10:14 AM
    Inspired by positive people

    MSrs have to look to the future.
    There will be a cure someday.
  • Avatar
    IraS  Apr 11, 2015 4:15 PM
    Really enjoyed what you had to say. It's true that a lot of people don't even know you have it. Those invisible symptoms....
  • Carolyn   Jul 6, 2017 9:25 AM
    My husband and I have adopted my cousins step son and his two children as our son. He is a sweet man who was diagnosed with MS a couple of years ago. We could see he needed someone in his life to help and support him through this difficult struggle. We decided to be those people. He is really struggling. He is very angry and I am quite sure very frightened. He is 34 and shares custody of his two children with his X-Wife.
    A little girl who is 10 and little boy who is eleven. He lives in Arizona. He also struggles with the discrimination of being his Hispanic. We are struggling with how to help him. We have never dealt with someone with such anger. The reason I am reaching out to you specifically is your age and and circumstances look similar. He quit his job and is making money by being a caregiver of some people in Sun City, As which is an over 55 retirement community. If you have any suggestions as to what we can do to help him with resources for him and us. How to connect with people his age and similar life situations. He is on Obama care insurance and having problems getting what he needs. Thank you so much for listening.