Someone Like Me

*The following post is one I wrote this past May when I decided to go public (thru the help of social media) about my (then) pending diagnosis of MS.

a·ware·ness
əˈwernəs/
noun
     knowledge or perception of a situation or fact

So, here it goes…This Wednesday, May 27th is World MS Day. As a woman living with the reality of this disease, MS awareness is now something I realize I need to help be a part of. My diagnosis began nearly 2 years ago, and it has been the most terrifying, uplifting, isolating, exciting ride of my life. Each day I grow stronger, making the days when I do falter have less of a lasting impact. I am constantly learning everything I need to know about MS, and THAT is my power.

I have many people to thank for this opportunity who have encouraged me to share my story. One in particular, who is helping me express my journey through photos.  If you, your family member, your spouse, your friend is undergoing a life-changing disease, talk about it. Educate yourself. Because no one should be left to fight on their own.

By: Andrea, guest blogger

con·ver·sa·tion
känvərˈsāSH(ə)n/
noun
       the informal exchange of ideas by spoken words

Talk, discuss, rant, laugh, question, reflect, release, connect, bond, support. Imagine living for a year or a two without speaking to another human being. Imagine finding out the best news ever, and having no one to share that with. Now imagine finding out you have a life-changing condition, and never having the opportunity to share your thoughts, your fears, your hopes, your questions with a person who shares the same. Loneliness and isolation, waiting to be consoled by simple conversation. Talk, discuss, rant, laugh, question, reflect, release, connect, bond, support.

During a conversation one night with a good friend, it suddenly dawned on me that I have never had a conversation with someone who has MS. How bizarre, really. I mean, I have endless conversations with neurologists and MS nurses, but never a conversation with a fellow MSer. Well, once I did have a brief conversation with an older woman with MS who lives in my community. However, that conversation was merely to discover “no, there are no MS support groups in our community at this time.” How is it possible that I, myself, have never noticed that I have not had a moment to talk with and listen to someone fighting the same kind of battle as I am? Not yet had a moment of connection?

I have so many questions and thoughts at this exact moment that are brewing inside of me. Some lean towards fear, some are just plain wonder. I couldn’t imagine having the opportunity to talk with someone who perhaps shares the same thoughts, or not.  Someone whose words have a little more authentic validity than the words of support I hear from the non-MSers who create my wonderful support network. For the record, all of who have a direct impact on the amazing and positive path I am taking with my MS, and none of whom I would ever give up. I hope you know who you are…

So, my question is, who do you talk to? And who wants to talk?

By: Andrea, guest blogger

strug·gle
ˈstrəɡəl/
verb
make one’s way with difficulty.

Sometimes, to struggle is to feel the universe reminding us that we need to slow down, realign ourselves, and be more self-aware before we move forward.  Through self-awareness comes balance and endurance.  So, stay positive.  Stay strong.  Ask for help when you need it.  Remember that, you will find your way through this.

At this very moment, I’m struggling.  Struggling to keep my head above water.  Struggling to maintain positivity.  Struggling to ignore the signs my body is giving me, telling me to slow down.  Struggling to live life the way I always lived it before; life and work first, mind and body last.  And this scares me, because I know if I let myself hit that wall at the end of this finish line, it’s going to look different than ever before.  And so, I remind myself that MS or no MS, I need to let myself heal and breathe.  I will not hit that wall.  I will not subject myself to the possibility of another exasperation of symptoms by unintentionally neglecting myself.  It feels like I’m failing, when really, I’m failing to see this is an opportunity to become stronger.  I’ve got you MS.  I own you.  You do not own me.

And now, what a moment ago was struggle, is simply a reminder that I need to stop, and take care of myself.  I may not feel like I am able to do as much as I was able to do before, but in reality, maybe I was doing too much, too poorly.  Now I am choosing to do less, and to do less well.

So, stay positive.  Stay strong.  Ask for help when you need it.  Remember that, you will find your way through this.  And you will feel better than ever before.