The first time I was diagnosed the doctor handed me a book and told me to read it. He then told me I had to return it within a week...
I don't remember what it was called but all I remember was how negative it was and how much it scared me. It talked about wheelchairs and unemployment and needing a caregiver plus a bunch of other frightening things.
Once I returned the book I decided that I should see what our local bookstore had to offer. I picked up "The Multiple Sclerosis Manifesto: Action to Take, Principles to Live By" by Julie Stachowiak. I flipped through it, went to chapters of things that pertained to me and put it to the side. I absolutely hated it!! She too talked about wheelchairs and caregivers plus injections and changes in diet. This was also when I was convinced the doctor was wrong and I'd be fine and I didn't actually have MS.
Three neurologists and a relapse later, I finally believed them. Being a little more welcoming to my disease, I decided to pick this book up once more. Except this time, I LOVED it!! Julie has a PhD in Epidemiology from Johns Hopkins and is a person living with Multiple Sclerosis. I further researched her and found out she writes articles and blogs on about.com for MS where I found even more educating information.
Every Wednesday I get an email newsletter from that website including 4 articles which are almost always spot on to something going on with me that week. She talks about it all!
There was one really interesting article she sent out last week and I just wanted to post it on here because I thought it was brilliant.
Here it is:
"I was recently asked to give a talk to “team captains” for the MS15, the 150-mile bicycle tour between cities all over the United States that raises money for the National Multiple Sclerosis Society. I don’t think any of the people in the audience actually had multiple sclerosis (MS), and only a few had loved ones with MS. These people take on an enormous amount of responsibility planning logistics for their company team and knowing a great deal about distance cycling, but not necessarily MS.
I wanted to let them know that their work was appreciated. I also wanted to let them know that “we” are everywhere. I wanted to let them know that just because I marched (rather than rolled) up to the podium, that I, and people like me, still hurt in ways that were difficult to see or understand.
My Visualization Experiment
Here is what I told them:
I want to explain a little about what MS feels like. Words like "tired" or "confused" really are inadequate, so I thought I’d try a little exercise with you, if you wouldn’t mind indulging me.
First, please raise your hand if you’ve ever traveled internationally. [Most of them did.] Okay, good, that is helpful.
Please close your eyes. I want you to really try and come along with me on this trip.
You’ve been asked to take a business trip to a country you’ve never been to — let’s say somewhere in Asia [to make it really far]. It was a last minute request by your boss, so you really don’t feel prepared. Things were rushed and hectic, so you’re not sure if you packed the right stuff (you end up with a carry-on bag that is heavy and bulky), and you were late getting to the airport, so you worried the whole time that you stood in the long security lines that you would miss your flight.
You run to your gate in uncomfortable shoes and a heavy coat with your bags and are the last person to board. You are seated in a middle seat, and there is no room for your bag, so you stuff it under the seat in front of you, meaning you have no place to put your feet except on top of your bag. You are hot from running. (By the way, anyone who has seated themselves in business class, get up and move to the back of the plane for this flight.)
The captain comes on and welcomes the passengers aboard, informing them that flying time is 14 hours.
Fast forward ahead to the end of the flight. Your neighbor kept poking you with his elbow, then fell asleep leaning on you, so you couldn’t sleep. You couldn’t really eat, as your knees prevented your tray table from being level. The person in front of you had their seat reclined anyway, so it was pressing on your knees the whole time.
There is a little turbulence, but the plane finally lands. The person next to you drops their bags on your head trying to get them out of the overhead bin. People are taking their time getting in to the aisle, leaving you in an awkward position while you wait. You stuff your swollen feet in to your shoes and grab your bag, which seems to have gotten heavier.
You finally get off the plane. Nothing is in English (or any other language you may understand). It is 2:00 in the afternoon and everyone seems to know where they are going except you. You have not slept for 36 hours. The sun is streaming in, and everything is very bright and very loud.
So let’s have a look at how you feel at this moment:
· You are so exhausted that you feel slightly nauseous and dizzy.
· You’re confused: you don’t know exactly where you are or where you need to go. You know you will figure it out eventually, but right now, the lights are too bright and the sounds are too loud.
· Your legs are stiff, and your feet are both tingly from falling asleep and painful from your shoes being too tight.
· You need to urinate badly but don’t know where the bathrooms are.
· You are too hot from the coat that you are wearing, because you don’t want to carry it too.
· Your bag is heavy and awkward and you feel too weak to carry it. Then the strap breaks and you want to cry.
Okay, open your eyes. That moment is it. That is MS.
Final Thoughts
I got a little teary at the end of this presentation. To my surprise, however, so did a majority of my audience. I think everyone could relate to how ill you can feel at the end of an international flight when you still have to navigate through unfamiliar territory. I wasn’t asking them to imagine life in a wheelchair or having to give themselves injections every day. I also wasn’t up there to give them a speech about how MS has made me grateful for every day or talk about my “can-do” attitude. I just wanted to give a little glimpse into how I felt every day.
The experience, symptoms and feelings about having MS are different for everyone. If you have MS, you can probably add uncomfortable details in to my “visualization” or create your own that is more appropriate to your situation. If you don’t have MS, but a loved one does, ask them how they feel — really feel — most of the time. Their answer may surprise you.
Again, the point of this exercise was not to get sympathy from my audience (or anyone reading this now). It was to communicate about something that is very central to my life. It was to make a connection with other human beings around this thing called "MS," even if it was just for a moment."
As I post this, I read it for the third time and got a little teary eyed yet again. What an awesome way to explain how we feel!! I can't wait to try this example on friends, family and colleagues.
PS as an update from my last post, I’ve decided to leave my disease to an “ask and I shall tell” basis. Unless someone is nosey enough to bring it up, I won’t talk about it.
