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Holding on to Hope and Managing Fear

Posted Oct 04 2010 1:07am

Anyone who has MS and claims they haven’t felt gut-wrenching fear about how they’ll end up is either flat-out lying or in total denial. (Personally, I think denial is highly underrated.) Presumably we’re all reasonably intelligent people, and reasonably intelligent people do occasionally think about what their future will look like. So unpredictable is this condition that MS-ers have no way of knowing what that future will be, so our thoughts tend to meander all over the map. Some points on the map are okay, some not so much.

It’s natural to occasionally go to the dark place in our thoughts. The trick is not to get too comfortable there.

For some people, anticipating the worst is an effective coping mechanism. A comment I sometimes hear is, “If I think the worst will happen, and plan for it, then it’s I know I can handle anything less than that.” Then they let go of the worry.

But a lot of folks find it hard to get out of that place once they’ve let their minds go there. For some reason many of us find it easier to think negative thoughts than positive ones. Let he (or she) who hasn’t stumbled in our shoes (or sat in our wheelchair) pass judgment. But for our own sake, it’s important to think positively and stay in the moment as much as possible. And to hold on to hope in the process.

Michael J. Fox, with whom I am officially in love, was interviewed on CNN a couple of days ago. Sanjay Gupta asked him a question along the lines of, “Do you have any morose conversations with your doctor about life span?” To which Fox replied, “I don’t have morose conversations with anybody about anything.” I love that!—and wish I could say the same, but that would be far from the truth.

Gupta then asked, “What keeps you so optimistic?”

Fox replied, “Being in the moment.…There’s no more important moment than right now…. If you get caught up in the worst-case scenario and it doesn’t happen you’ve wasted your time, and if you’re caught up in a worst-case scenario and it does happen, you’ve lived it twice…. It’s important to know what the future may bring but it’s also important to celebrate what you can do right now.”

As Fox also observed, acceptance brings peace. We can’t change the fact that we have this disease, but we can choose how to deal with it. We don’t have to be Pollyannas to choose to enjoy life, to experience joy, and to be filled with gratitude for everything we do have, even in the face of MS.

All of us know people who have mastered this art. I belong to an informal support group of the most amazing, inspiring women with MS. They are sober about the disease, but when we get together we laugh more than I could have thought possible. There is an art to being in that place of joy, support and community, and they have mastered it. So to the MS Sisters, my hat is, as always, off to you.

It’s no news that one of the best techniques for choosing to enjoy life is staying in the moment, being fully present for whatever the day brings. Not reliving the past, not worrying about things that may or may not come to pass, but appreciating what we have right now. This doesn’t come naturally to most of us, and to achieve it we have to change the way we think. Mindfulness meditation is a great way to do that. I highly recommend taking a workshop or course if one is available in your area. Neurolinguistic programming (NLP) is another option. You can find NLP practitioners by googling NLP and your city.

Allowing ourselves to wallow in fear carries another price. With fear often comes a feeling of helplessness, which can morph into depression. Volumes have been written about this, but I’ll keep it short and to the point: If you are depressed, get professional help. If you can’t afford a private therapist, get counseling through your community services or a nearby church. If necessary, get on an antidepressant. You don’t have to struggle through this by yourself. MS is hard enough. Get all the support you possibly can.

Having said all that, here’s another important point: When you’re feeling afraid, let yourself be afraid, at least for a while. You don’t need to pile self-recrimination on top of your fear. Let’s face it, this is a very scary disease. Some would argue that it’s healthy to face our darkest thoughts head-on and not try to repress them but rather to move through them and on to the other side. In fact, I’ve heard a therapist say that one technique for overcoming chronic fear or worry is to let your thoughts take you even beyond most extreme, terrible place you can imagine—to a place where you are writhing with the horribleness of it all, where nothing could be worse, where you are in Dante’s inferno—until you finally can’t help but laugh at the absurdity of it all.

Okay, so that may not work for everyone. But the point is that some of us don’t have the support from friends, family and community that helps keep apprehension at bay and our situations in perspective. So when you’re giving in to fear and depression, cut yourself the same slack you would for any friend in the same situation. And while you’re doing that, please get help.

I’d like to quote some good advice from my friend John Steiner, who has written a blog in this space and can on occasion be a fountain of wisdom: “Hope, and when you can’t hope, just hope a little, and when you can’t hope even a little, then get a good friend to hope for you until you can. And if you have no hope, and no one to hope for you, try to endure until help comes. Be well.”

Fortunately, most of us will not have to simply endure. And while fear and depression are natural reactions to having MS, hopefully we can find it in ourselves to live our lives to the fullest, within our physical limitations, every day that we can make choices for ourselves. Granted, it can be an effort. But once we can start looking at the glass as half full, it becomes a habit. And isn’t it worth it?

Do you go through periods of fear and depression? If so, how do you cope? Are you hopeful and optimistic? Tell us about it. Your fellow MS-ers can benefit from your experience.

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