Change Perceptions

By Lisa Scroggins

“In this world, nothing can be said to be certain, except death and taxes.” – Benjamin Franklin

Death and TaxesI would argue with Mr. Franklin that his famous aphorism should be amended to include the word “CHANGE.” Change happens whether we want it or not, and this is true for all people. However, for people with MS, change, generally, tends to be unwelcome.

Maybe I need to change my perceptions of change.

Maybe, since change is going to occur, I need to change.

You probably know some older people who frustrate you with their rigid approach to life. Those people whose most common complaint is something to the effect of this:

Young people today are shallow and don’t know how to work!

Or this…..

She is such a malcontent. Always complaining about MS symptom this, and MS symptom that. She should just DEAL with it! I’m not even sure that’s a “real” thing.

For me, change in regards to my MS has generally been negative. Changes, especially in the past few years, have meant less mobility. For others, it may mean cognitive difficulties or the loss of another ability. Given the vast array of symptoms presented by MS, there is almost no limit to the loss (DISability) that might be sustained. It’s exhausting, dealing with MS, or as I have written in the past, “I’m fatigued and I’m tired of it!” (Pun is definitely intentional.) I am one of those people who have been dragged into my new normal, kicking and screaming and protesting loudly all the while! Inexplicably, I have recently changed my resistance to change in one small way. For the most part, I get annoyed with the way that many people seem to prefer watching a video for everything. It’s probably related to my learning style, but I much prefer to read about something. For example, when I Googled “multiple sclerosis symptoms,” I got a huge list of links, and many of them were to recordings, a great deal of which were on YouTube, with some to news broadcasting stations and to WebMD. Typically, I would ignore those and look for the links with lists.

But I stumbled upon a new link and a lot of the information there is in recorded videos. The information is new to me, and I find it very helpful. I have actually listened to and watched several of the videos. This particular website was created by a person with MS, and I have found information there that was new: http://www.msviews.org/msviewsandnews4/ I have to fess up: I only listen to some of the videos there and don’t always watch, so I guess I remain stubborn. The website was previously known as Stu’s MS Views and News, but Stu has managed to get a lot of help on his side and his website has grown a lot. There are partnership links there, and you may or may not be impressed by those, but in any event, there is probably something there for you to take in. I really enjoy Dr. Ben Thrower, who is a neurologist and offers a lot of information in a form that people without a science background can understand.

I was diagnosed a long time ago, and have seen many headlines that read as though the misery that is MS was about to end! HUGE breakthrough! Promising treatment! All the excitement has worn thin for me, and I view such headlines nowadays with skepticism. Remembering the time when I was diagnosed means telling you kids a story. It was the early nineties. My resources were limited: the public library, my doctor, and any local support groups. Email was nonexistent, as was the World Wide Web. There were a few national organizations, and they had 800 numbers, and mailed out written publications. I don’t remember when or how I learned about the MSAA, but it was not the first organization devoted to MS that I knew about, even though it was founded in 1970!

The truth is that a lot of change in the field of MS has vastly improved:

  • The availability of information
  • Treatments: there are more than a dozen treatments available
  • Organizations that help patients dealing with MS
  • Research into the etiology of MS

Now, there are many organizations specifically formed for us, the MS patients, and information is overwhelming. It can be difficult to navigate and even to discern which information is reliable. The pace of change is brisk, indeed, which I believe is positive for us.

Dealing with change can be done with grace and likely will benefit you. I have changed my perception of videos about MS.

What change in dealing with change will you undertake?

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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