When Is It Okay to Give Up?

Many people have complimented me on my courage and persistence lately, as I continue to struggle with my MS. The question though, really, is what is the alternative? Is it some great virtue that I refuse to cop an attitude and grow whiny and ask “why me” every five minutes? In the face of a huge challenge like this disease, when exactly is it okay to give up? Is there a point where that could ever be rational?

Let’s start with the facts. I have a disease for which there is no cure. Everything happening in my body right now is completely beyond my control, which is to say there is nothing that I can directly do about it. Even nutrition and my daily injections will do nothing at all to modify the outcome of this current flareup. This adds up to one thing: powerlessness. My chosen coping methods (praying, meditating, and staying in the present moment) make a huge difference in my attitude, but are not treatments for the disease itself.

Given this basic state of powerlessness, the question is whether hanging in there, or giving up, is the best thing to do. I think, frankly, the situation calls for both.

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Sick — No New Posts for a While

I have been sick for several weeks, and am still sick. For those who don’t know, I was diagnosed with multiple sclerosis in December, 1990. I usually do fine, but it tends to flare up in the fall and spring. Two weeks ago I came down with an infection that the first course of antibiotics didn’t touch. Today I started another one. People with MS are more vulnerable to infections, and infections tend to worsen the MS.

I will start getting new posts up as soon as I can. The fatigue and brain-haze I experience with these flare-ups just make it impossible to post. I am sorry.

Walking for MS

Most of my readers probably know I have multiple sclerosis.  In fact, I was diagnosed with MS 20 years ago, December 5, 1990.  1991 was the scariest year of my life and [in my best Forrest Gump voice], that’s all I have to say about that.

But here I am 20 years later doing better than I ever imagined.  I have run in a 5k recently with my teenage daughter.  I carried my three babies up the stairs to bed every night, and played on the floor with them, and have been at all their events, and rode roller coasters with them at Cedar Point.  I trained for the Crim with my wife.  I bought a cane 10 years ago but have only had to use it a couple of times.  I have lived a productive life, largely free from MS, with the exception of some significant and scary flare-ups here and there.

This morning I was reading the blog of another person who, like me, was diagnosed with MS 20 years ago and who, like me, has had very few problems.  But lately she has noticed that she is having increasing difficulty walking.  I must admit this tapped into very deep fears, and I found myself looking back over the last few months to see if I too have had problems.  So far, so good.  I mean, I have definitely noticed some extremely annoying symptoms, but nothing I can’t ignore, and nothing that is obvious to anyone but  me.  So far, so good.

As I was reading this woman’s blog, I scrolled down to the comments section and read where one of her friends was encouraging her by saying, “I’ll continue to walk in the MS walk with you to help you raise money to treat your disease.”  I got to thinking about how intentionally uninvolved I have been with MS-related causes.  The course of my MS has been mild enough to allow me to live months at a time without hardly thinking about it at all.  Given that in 1990 and ‘91 I figured that by now I’d have been in a wheelchair for years, I have determined to simply not think about MS as long as it is possible to not think about MS.

Isn’t that in some ways what separates people who have chronic illnesses from people who don’t?  People who don’t have chronic illnesses are free to take their health for granted in most ways.  They are free of the burden of wondering what will happen next, and whether their current flare-up will get worse or stay the same, and how far this one is going to spiral down, and whether and how much functioning they will recover if it does get better.  I got to wondering what I’d do if tomorrow a flare-up started that got worse and worse until I did end up in a wheelchair, or maybe blind, or suffered some other type of permanent disability.  I realized the first thing I’d do is start trying to raise money for MS.  It’s no wonder that people without MS don’t get involved in finding a cure for it.  I’ve had MS for 20 years and I’ve never been involved, nor have I ever given a single dollar to fight the very disease that one day just might start to catch up with me.

This has to change.  Now is the time I can do the MS-Walk to raise money to cure the disease.  Now is the time I can do this simply because I am part of a unique group of people – people with multiple sclerosis – many of whom can no longer walk, much less run, exercise aggressively, and work three jobs like I do.  I have focused so long on the blessing of not having to think about MS that I have not enjoyed the blessing of being in a position to help do something about it while I still can.

There are many diseases and they all suck.  But MS is my disease.  It’s a natural way I can reach out and do a little good for other people who are suffering.  My MS may never get any worse, and I hope it doesn’t, but we all need to find a group of people to serve.

So I’m going to walk in the MS walk this year.  I’m thinking of the one in Traverse City in June.  As a pastor I’m weary of coming across like I am using my position to raise money for my pet cause, so I will probably not talk much about it in public.  On the other hand, if you think you might be interested in supporting me in any way, keep an eye on this blog and I will be posting more definite information once I get signed up.  Heck, even if you only give $1, it’s $1 more than I’ve given in 20 years of actually having MS!

That’s about to change.

Twelve suggestions for talking to people with chronic illness

Disclaimer: This post is in no way intended as a rebuke of anyone in my life. I am blessed to be surrounded by caring, compassionate people and have no complaints about how my friends and family treat me when I am sick. But I do hope this post can help and encourage even those with the best “bedside manners” to feel more confident and comfortable when talking to someone who is sick.

If there is anything that having MS for 20 years has taught me, it’s that there is almost nothing that creates more awkwardness for people than when they have to deal with a loved one who has a chronic illness. For it is there that we come to the end of ourselves. It is there that we discover how “useless” we are, how unable we are to fix what is broken, and how insufficient words can be. In this post I hope to help my readers learn how to deal with friends and family who are dealing with chronic illness.

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