It was Saturday night and I had walked the equivalent of several miles that day. My brother dropped me off at Aladdin Café and went to park his car. When my right foot hit the curb the left one did not respond and I fell flat on my face. How humiliating!
Having lived with multiple sclerosis (MS) for five years, my daily ritual has been to live ABOVE the disease, max out my boundaries, and focus on living life to its fullest. Only recently have I been able to feel even a little comfortable allowing a stranger to open a door for me, or carry a package that was cumbersome. I’ve been proud, vain and done everything possible to be “normal” (whatever that means).
Two precious friends inspired me to step up to the plate, share my experience with you, and face the elephant in the room—living with MS. Kylie Doak and Debbie Stevens shared very powerful examples of facing their fears. They gave me the inspiration to tackle MS head on and show you some of the struggle of being “different”.
Walking! What a simple, involuntary act—unless you have lost the ability to do so gracefully. It means using a cane, walker, or (God forbid) a wheel chair. It means relying on others when the terrain isn’t flat. It means pacing yourself throughout the day so your legs don’t fatigue. It means using a handicap sticker and parking close to an event. It means having people look at you differently … It is often cumbersome and awkward. I find myself trying to make other people feel comfortable in my presence. When I walk into a crowd of people, it often feels like the parting of the Red Sea. People stand back and give you a wide path to walk through.
If I focused on this aspect of my daily life, it would be difficult to accomplish anything short of a Pity Party! While there is nothing special or particularly unique about me, I HAVE chosen to learn from MS and enjoy life’s beauty. I call it living above MS.
Time is of the essence! There is so much to accomplish and so little time to do so! Focusing on fear would only squelch that precious time! So I felt compelled to take you on a journey with me where I dissected the reality of living with a disease for which there is no known cure.
My challenge to you is to get outside of yourself, walk through that mountain, and follow Marie Curie’s lead: “Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”
Onward in Fearless Motion,
P.S. One of my dearest friends just wrote the following poem for me. I really had to share it with you:
A poem from my heart to yours…
YOU WILL WALK
You will walk!
You will walk strong and firm.
You will walk everyday to keep your legs strong.
You will sometimes walk over to your walker…and take it for a walk
You will do whatever is necessary to keep yourself safe….
…to ensure that you will walk again the next day.
You will walk by my side until we are so senile that we don’t even remember who we are.
You will walk because you say you are going to walk.
And because you are a strong and brave spirit,
my friend Darlene…
YOU WILL WALK!
March 31st, 2010 at 4:54 am
Great inspiration Darlene. I have a good friend with MS and she is just as determined as you to face this MS head on. My prayers are with you. Fears can hold you back. Thanks for this post.
Let’s talk soon.
March 31st, 2010 at 7:35 am
Thank you Darlene! I appreciate you sharing with the world how you’re living a life with MS. I was diagnosed with Multiple Sclerosis 15 years ago, this post brought tears to my eyes. Everyone has a story, and our stories are very similar! You have the gift of writing what you’re experiencing! I’ll follow your example!
Love and laughter,
~Linda
Linda G Cox´s last blog ..Power of Thoughts and the Written Word
April 1st, 2010 at 8:04 am
Linda, YOU are a constant inspiration to me—a friend, a sister, a mentor!
March 31st, 2010 at 9:15 am
Darlene,
You are so very right about so much. I have tears streaming down my face right now. You are one courageous woman.
But you are very wrong about one thing: There are a tremendous amount of things that are very special about you and you are very unique. I’m glad you have come into my life.
Debbie Stevens´s last undefined ..Response cached until Thu 1 @ 17:40 GMT (Refreshes in 23.46 Hours)
April 1st, 2010 at 8:07 am
Debbie, It is an honor to call you my friend. You have taught me a lot in the little time I’ve known you. And this is just the beginning …
April 1st, 2010 at 6:04 pm
My precious cousin, my HERO!!!
April 2nd, 2010 at 2:22 am
Darlene, you are beautiful no matter what. My neighbor who is getting up in age and has some health challenges fell a few weeks back and has TWO black eyes right now. She felt the same way at first, but you’re so right about the fact that it’s what’s on the inside and not the outside that matters.
The problem with worrying about what people think is that you give away your power. Big Mistake!
Always keep you power lady, you deserve it. I had no idea you were living with MS. I applaud you for your courage in making this video and letting people know that it’s ok if you have the right attitude. You will help a lot of people.
Debbie Wood´s last blog ..It’s Crush It Time!
April 2nd, 2010 at 3:55 pm
Hi Darlene
You really are an inspiration. I love how you live above MS. I also use the quote, living above the line meaning you live with integrity, passion and taking responsibility for everything in life rather than blaming others. I am very grateful for my health and its people like you that enhance that. Thanks Darlene
Matt Jones´s last blog ..Do Your Beliefs Serve You Anymore?
April 3rd, 2010 at 6:27 am
Hi Darlene,
Thanks so much for sharing your life with us here.
You are such an amazing woman that so many people can be encouraged and uplifted by.
I believe that God gives us the opportunity to take all of our experiences in this world to share with others in order to help them be strong in theirs.
I have a grandmother that had MS. She got it when she was about 35 years old just after having her 3rd child and lived with it for about 40 years. By the time I had met her she was in her sixties and confined to a wheel chair to get around. She was such an inspiration through her spirit and how she shared with us all. I am grateful to have known her in my life.
Thanks again for opening your heart and sharing with us all.
Make it a great day!
God Bless,
-ed
April 3rd, 2010 at 11:03 am
You truly are one of a kind and a great inspiration. You are open and honest, willing to share teach and guide. You always have a positive attitude and words of wisdom!
With great admiration!
Julianna Brower´s last blog ..The Empowered Tribe- Social Proof
April 4th, 2010 at 5:24 am
This is a great post. I was recently diagnosed and I am finding it strange to have to adjust to it. It’s true – even the simple things like walking or just going down the stairs is a daily challenge. Always having to hold onto the railings; feeling yourself suddenly sway to one side as you walk. Sitting still and not only feeling but seeing your muscles suddenly flutter under your skin.
It’s hard take it all in without the added pressure of proving that just because I have MS, I’m suddenly incapable of living my life. That somehow having it makes me less of a person than I was before. I even had to explain to one friend that it’s not contagious. LOL
I wish you many blessings and may you stay strong in the face of having this.
Michelle´s last blog ..My Article List for March 2010
April 5th, 2010 at 1:12 am
Darlene, you are such a courageous woman to share with the world what its REALLY like.
I had juvenile rheumatoid arthritis at about age 8 set in, and a genetic ligament issue. This duo (actually mostly the affects of the RA which I no longer have an active case of, coupled with the ligament stability issues) make my mobility vary greatly from day to day.
I don’t know how long I’ll keep what I do have, but I’m grateful for it. In some ways my body is stronger every year and in others persistent wear is starting to take its toll.
I’ve had handicap plates and tags from the time I got my first vehicle. I know first hand how intimidating, segregated and isolated it can feel.
You are an incredibly beautiful and unique woman that has so much to share. I’m blessed to call you a friend
Kimberly
Kimberly Castleberry´s last blog ..Affiliate Link Management and Cloaking for the Affiliate Blogger (Part 1)
April 7th, 2010 at 4:54 am
Hi Darlene! What a beautiful post! And how timely that I would find this right now. I had a conversation with a lovely woman at my Bible Study last night who is living with an auto immune disease and has put on a considerable amount of weight since she’s been diagnosed.
One of the other women had shared her struggle with weight loss, and we were all encouraging her to start exercising.
This sweet woman turned to me and said “But what if you can’t exercise”? She briefly shared with me her struggle with medical issues over the past few years, and showed me a picture she had on her phone when she was a model.
I immediately thought of a woman who is a fellow Team Beachbody coach named Cammie Lusk. Cammie was diagnosed with MS, and it quickly progressed to the point where she couldn’t walk and needed to use a wheelchair. She sunk into a deep depression, and thought that her family would be better off without her.
But with the help of her husband, she turned things around. I hope you don’t mind if I share a link to my blog post about Cammie.
Please watch the video in this post. Cammie’s story is so beautiful…and hopeful!
http://healthylivingforbusypeople.com/blog/cammie-manages-her-ms-with-p90x-and-shakeology/
Thank you for opening up to us in this post!
Judy Zavislak´s last blog ..Miracle Grow for your Brain
April 7th, 2010 at 6:08 am
Hi Darlene, thank you for sharing this personal segment of your life. My respect for you has only increased to hear of the trials that you have to deal with in every day life. Your courage & attitude is admirable & may I say that you do stand out in a crowd Darlene….in a way that sets you apart in a beautiful & positive way. I wish you a speedy recovery from your injuries. ((hugs)) Toni
May 4th, 2010 at 12:45 pm
You still look totally hot even with a black eye. You are one beautiful lady in all of the ways that count most! Love and Kisses xoxoxoxo