Wednesday, December 26, 2012

Wishing for normal

Michael Wentink 
Blogger, A Road Less Traveled... 

When you find out where someone went to college, the small talk that ensues is usually about one of its athletic teams, whether it was a good “party” school or perhaps if he or she chose it for its academics. For Virginia Tech alumni, the discussion usually includes a question about our school mascot: “So, what is a Hokie, anyway??”

I always had a difficult time explaining it. The more specific and detailed I was, the less success I had in answering the etymology behind the word, “Hokie,” and I’d usually be greeted with blank or confused stares. Eventually, I decided to go with the shorter—and catchier—explanation that a “Hokie” is a castrated turkey, or if I was in more polite company, a Hokie is just a really angry turkey.

(For the record, although our football stadium says, “Home of the Fighting Gobblers,” and our mascot certainly resembles the traditional Thanksgiving dinner, a Hokie has nothing to do with turkeys (or any animal). Here is a link to the actual legend behind the name, but be warned, it’s a bit underwhelming.)

In the months following my diagnosis of multiple sclerosis, I spent a lot of time reading books, researching and conferring with medical professionals about what MS is. I quickly learned there are no easy answers to the question, “What is MS?” Yes, there are concise clinical explanations, but I was stunned to learn that what isn’t known about MS far outweighs what is known.

“Why did I get it?” Not sure. “How did I get it?” Again, not sure. “What will my life be like in three years? 10? 30?” I asked my neurologist at the Mayo Clinic these questions and his answer was honest and straightforward: He had no idea. I could wake up the next day and be symptom free for the rest of my life, or in two years I could be in a wheelchair.

So how do I answer when I’m asked, “What is MS?” or “How is your MS?”  It’s actually surprisingly similar to my failed attempts at explaining what a Hokie is. The more details I give, the harder it is for me to communicate a clear answer. But, unlike the Hokie, there is no catchy explanation that gives justice to life with MS.  

Google "multiple sclerosis" and you’ll see what I mean. The list of symptoms range from muscle spasms to paralysis, not to mention it’s different for everyone. Some might have a little bit of this, others a lot of that. With so much individual variability of the disease and ambiguity of the how and why of MS, it’s difficult to find the right words to describe it.

To me, rattling off a list of ailments and the accompanying limitations really doesn’t strike at the true essence of my life with MS. I’ve learned to live with the constant pain and the tingling. Days are planned around my lack of energy and other physical limitations, and I give thanks for the vision I still have. But what does MS really mean to my life?

I’m frustrated that…
… I can’t start or end my day without a glass of water to wash down medication
… my feet are always cold although I’m in socks for most of the day  
… any light hurts my eyes
… sounds that shouldn’t irritate me, do

I miss…
… life before constant doctor appointments and medical treatment and tests
… being able to enjoy the sun
… running
… working
… warm feet

I worry what others think…
… when my wife stands while I sit in a crowded room
… when my wife is carrying the bags while I walk freely
… when I’m the “normal” looking Dad who isn’t out there, helping coach his kid’s little league team

I wish…
 … I never had to wonder about the day I tell my son and daughter I have MS, how old they will be, what I will say, how they will react
… I could walk into store and not be overcome with vertigo, fearful that others are looking, wondering what is wrong with me
… I didn’t get nausea looking through the chain-link fence at my son’s baseball games
… my child’s birthday party, or other social gatherings were occasions I looked forward to, rather than feared, wondering if I will have the energy, if there will be a lot of standing, whether I can handle what MS throws my way

That’s a snapshot of what my life with MS is like but really, I just want to feel normal again. Just give me 30 minutes. No tingling, numbness or pain. Clear vision, full energy and let me spend it with my wife and children; I want to know what that feels like. Just 30 minutes.


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.
 

13 comments:

  1. I hear what you are saying but I have learned that there is no such thing as normal...anywhere! I was diagnosed with MS in 2003 and whether it be MS or something else, everyone is dealing with something that is not normal.

    I enjoyed your post. Keep living and remember that which does not kill us, only makes us stronger!

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  2. I loved the end of this. It is so true that listing the symptoms just doesn't explain MS the way it needs to be. I love what you wrote and I understand. I have often had the same thoughts. Being thankful gets me through. I pray it does for you too.

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  3. Dear Michael,

    I was diagnosed with MS May 11, 1995 at the age of 30. I then had a three year old daughter and an 11 year old son. I spent ten years in human research for MS at UCLA MS research from 1995-2005. I was a high level executive in an industry that I loved for over two decades. Then in 2010 I got the news that non of us wants to hear. "You have to retire you can no longer function in your executive capacity." That was an earth shattering moment for me even though I had planned for this possibility it was still incomprehensible to me.

    My MS is now relapsing progressive but I am still walking and doing everything I can to live each day as if it where my last. I found your post interesting just two comments. First there is no such thing as "normal" and second you do not want 30 minutes free of your MS symptoms, why? you might ask. Because you would be watching the clock tick down knowing with each passing second you are going to be rebound by the pain that you have become accustomed to. I live with many of the same symptoms that you describe but I would not want to be given a temporary reprieve. It would only make my suffering that much more unbearable.

    One of the things I have always wished is that I could share what I am feeling with all those who say, "You look so good." I would like to allow them to live in my body and feel what I feel for just 5 minutes. I have often spoke of this with my wife and we both agree that any person who would suddenly be placed in the kind of pain that I am in all of a sudden would most likely die from the sheer shock of the pain.

    So keep a positive attitude and enjoy the little victories. I too had a frank conversation with my neurologist at UCLA when I was first diagnosed and I asked him flat out, "Larry you have been in MS research for 40 years will we ever find a cure?" he paused only for a moment and said, "No...we might find better treatments for symptoms and progression but I do not think that we will ever find a cure." I thanked him for his honesty and never looked back.

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  4. My wife has had Ms since 1992. She decided to stop taking her copaxone shots 4 months ago. She had faithfully taken all the abc shot's and rebif never missing a day. Her last attempt was a 4 year relationship with copaxone. Her eyesight is bad. Vertigo is a problem. Her hands ache so bad she can't use them correctly some days. She can't take the cold. Memory is always a problem and pain in her hips, arm & legs. She said she notices no different anything since she stopped her shots. She still takes 16 pills a day. She had to stop working 12-10-10. Since then she has added new diseases and conditions to her life. She feels she is a burden to her family. Like the first persons comment about 30 minutes of being normal wouldn't be for me. Then I remember other people who have life worse than myself and I am ok for awhile. It's like a yo yo. I think talking about it helps. As you can tell by now I am the wife and have been talking all along. I would have never of said this as myself so I am amazed what I wrote as if my husband were writing it. I was to ashamed to say I felt bad because so many have it worse. Thanks for my husband bringing this to my attention. Take it day by day people. Act as though you don't mentally have it. Your family loves and needs you. Thanks for listening.

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  5. Hey there, I was diagnosed a year ago though I think that I've had it for MUCH longer and didn't know it. I had Bell's Palsy when I was 24 and that may just have been the defining moment (I am now 41). I hear you LOUD AND CLEAR on trying to define the new normal; it's been quite a year of adaptation for me and my family.

    I too wish you the best in this upcoming year, and hope for the best for myself as well!

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  6. Recent vision changes Rt eye(gray fog, worse at night) & sudden UA freq & incontinence at night has prompted me to do some research. Begining to wonder if I have MS? I am 47. Add that to hx severe restless leg syndrome for years, constant tense muscles, chest pain & SOB(neg stress tests & cardiac caths), 2 episodes of severe vertigo, fatigue, weird unexplained itching, & constant cold feet. Noticed memory issues lately Had always been able to multi-task, but no longer. Family & Dr say it is just stress. Having trouble getting physician to take my concerns seriously. She wants to treat each symptom individually. Any suggestions?

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    Replies
    1. Tish,

      You need a neurologist to take a look at you, you should also request a brain and spine MRI with and without contrast. If there are lesions in your brain or spine they will show up there. You could also request a lumbar puncture however, even if your spinal fluid has the protein commonly found in MS it doesn't mean you have this disease.

      Good luck,

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  7. I had symptoms similar to MS and went to see a naturopathic doctor. She told me that I had 2 viruses destroying my nerves and gave me anti-viral liquid supplements. They have worked great so far! My hands and feet stopped hurting within just a few days. Also, she told me that once the viruses were gone, she could give me supplements to heal the nerves.

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  9. Thanks for this. I've been longing for a day where I was symptom free and the weight of the "third wheel" in my life with my wife wasn't tagging along. Your frustrations and misses echo mine almost too closely and I hope that we both have one of those days sooner rather than later.

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  10. I also wish I could have even 30 minutes of normal. Please don't worry too much about what others think, because others usually don't care. And REALLY don't worry about telling your kids! My daughter, at age 10, took in all the info very calmly, then asked "Why do teenagers get pregnant?"( in response to my question if she had a concern). And my husband told me when we had young children,"Don't worry too much, because you may miss enjoying these years

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  11. MS is a part of your life, so they will happy to help who they love. Don't think burden to someone and don't let everything in life become stressful, make everything is simple and easy although know that you feel pain, numbeness.

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