The Road Ahead

“Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.”
- Michael J. Fox

 
It’s a punch in the gut to hear “your disease is progressing.”

My neurologist used those exact words at my most recent appointment. It wasn’t a surprise for either of us. He knew I had been struggling with flare-ups over the past year, and the results of my latest MRI confirmed that. So, honestly, I would have been stunned to learn otherwise.

But, still….

Punch.

Gut.

I’m not even sure what I did the rest of the day. I wasn’t depressed or even sad–just deflated.
I find that optimism is valuable therapy in my battle against MS. But sometimes, I need a break to allow myself to think, “this really sucks.”

In this somber moment, I remember that I’m a guy living with a chronic disease... and this particular type of disease tends to get worse over time, not better.

A dark cloud will hang over me, maybe for just a few seconds, minutes; or even a couple of days.
And honestly, I think that’s ok.

The reality is, we all face something and carry around our own bag of rocks that weigh us down.
Maybe it’s not as heavy as multiple sclerosis… perhaps it’s even worse.

Punches in the gut are fine–they happen–but how do I respond?

I resist venturing too far into the darkness by reminding myself of how far the medical community has come with MS treatments. And although MS isn’t a household word, I believe awareness and understanding of this disease, within the general population and even among medical professionals, has greatly improved within the past few decades. I also realize how fortunate I am to be surrounded by a loving family, wonderful friends and an excellent medical team.

Those truths provide me soft cover from the repeated blows of to my health.

In its own way, MS serves as a perpetual reminder of how blessed I am: Every step I take. Every day I have clear vision. Every time I find the energy to hang out with my children. Every moment that I don’t feel pain, a spasm or tingling sensation.

These thoughts echoed in my head during my latest doctor’s appointment. And, after my neurologist confirmed the progression of my MS, we decided I should start a new treatment.

On the one hand, it is good news. I’ll be replacing shots with a pill. I can’t complain about that!
But there’s uneasiness that comes with it, too. What if my body doesn’t respond well to this new medication?  What if my disease progresses even more?

All these worries are out of my hands, so I will focus on what I can control.

And really, that’s all any of us can do. Why should I waste a moment of my day wondering if new lesions are forming, or if old ones are intensifying? What I can do is make healthy choices each day. Being active as best as I can, eating well and resting when needed (which can be quite often). 
I stay informed about MS and regularly meet with my doctors.

I know there will be more punches to come, but I’m prepared. No jab hurt worse than when I was first diagnosed in May 2008.

I choose not to imagine the worst-case scenarios on my journey with multiple sclerosis. Sometimes, I pause to reflect how difficult it can be on my Life Less Traveled, but I know the road ahead always sparkles with beautiful potential.

Tags Healthy Living      5 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.

    5 Comments

  • Avatar
    14771100  Sep 12, 2018 2:48 PM
    Tuhanks. It only took me about 30 years to get there. Lol Hope others move there faster. There’s a lot to this life.
  • David G Maskalick   Sep 12, 2018 4:18 PM
    I've dealt with the my progressive MS in much the same way as Michael Wentink. I was diagnosed in shortly after completing my PhD in chemistry and starting work at a pharmaceutical company researching and developing new recombinant protein purification processes. I was able to work 16 years until I was asked to take disability leave/retirement eighteen years ago. In the last 18 years I've tried to start a business and I continue to try to write, but, mostly I try to stay socially active and aware of the needs of others. For example I've volunteered for events to support our symphony orchestra. I'm secretary for my alumni chapter and a save our symphony group. Life goes on. Even with progressive MS one doesn't need to just fade away.
  • Avatar
    phillyirish75  Sep 30, 2018 5:53 AM
    Michael,
    I really appreciate your blog, especially when you stated you just need a break sometimes to allow yourself to say this really sucks. I can relate to this blog very well because I have had one of those appointments recently. I'm on my third MS Therapy now I started Orcevus this year the infusion. When your neurologist tells you once again you have acquired a new lesion again and your MS is progressing, it literally is a punch in the gut. Especially when you have new symptoms and go to other physicians to see if it may not be your MS, just to be told again that what you are experiencing has to be your MS. I truly try to live an active life, eat well, and stay as positive as I can, but it is so hard some days. I've had MS over 10 years now and still struggle with the frustration of something that is beyond my control. Thank you so much for this blog!
  • Lisa   Oct 31, 2018 10:19 PM
    I am in the diagnosis process. Has anyone heard of Gluten Ataxia?
  • Tonja K.   Nov 1, 2018 3:35 PM
    I don't have MS, but I have been with my children's father for 16 years, and he just found out about 3 years ago that he had MS. At first, I know it scared him half to death. But as these couple of years have flown by, he has progressed mentally. Which makes and made a difference in both our lives. MS mentally changes a person. But if you are strong with a strong support system, You will survive!