Entries by Penelope Conway

Things people say to someone with Multiple Sclerosis that make you go Hmm…

Those of us living with Multiple Sclerosis get interesting responses from people when they find out we have been diagnosed with MS. I actually think most people mean well, they just don’t think before they speak.  It can be frustrating, I know. Hopefully the more we talk about these things the more people will learn that we need care, understanding and support more than anything else. People really do say some on the darndest things…

How embarrassing…

Some of my most embarrassing moments with multiple sclerosis have been bathroom related. It’s not always easy to talk about the challenges I face on a daily basis when it comes to toilets, toilet paper, and accessibility. It’s not like I can just start a conversation, “You wouldn’t believe the mess I made in less than 10 seconds flat yesterday.”

Dizzy…my head is spinning

I have always wanted to go on an ocean cruise to Alaska; to see the glaciers, whales and amazing skies. Someday that dream will happen, but until then at least I already know what the waves feel like since I experience those daily in my head. That’s the best way for me to describe to people the dizziness and vertigo I experience. Either that or sometimes I will tell people my head feels like it’s stuck in a shaken snow globe that’s waiting for the flakes to settle…only the flakes never do…

We are warriors fighting in a battle that many will never see

I looked up the word discourage in the dictionary this morning. I know that may sound silly, but I wanted to know exactly what it meant. My brain doesn’t let me remember things like that any more. According to Webster’s Dictionary, discourage means to deprive of courage, hope, or confidence. Wow…lately I guess you could say I have been deprived of courage, hope and confidence.

When people stare

My dream is to one day walk down the street and be greeted as me rather than my disability. To be approached with a hello and a handshake rather than head turns and stares. For those with questions about my disability to actually ask them rather than assuming and then whispering to their friends. For people to realize that I’m really not the one with the disability….people with a lack of empathy, understanding and love, those are the real disabled in the world.

Dear Weary One…

Dear Weary One,
I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple Sclerosis is your reality. It’s real and you feel it deep…

Today, we fight…

How can anyone live with a chronic illness and still smile? How is it that I am able to find happiness after a disease has stolen away a flourishing career, ended friendships, isolated me from much of the world, and many times confined me to my house?  How is it that I am not falling apart along with the rest of my world?