The Multiple Sclerosis Society of America

Summer Edit | Surviving Summer

Summer Edit | Surviving Summer

I have been working on challenging myself to find my “new” flow, and I must say I’m finding some things that may work. I’ve been collecting—amping up for these summer months in Florida’s heat, from gold-toned sandals, midis, and good reads to skincare tools—exploring interests to stimulate my workaholic mind through this horrific season.

Bottom line: I OFFICIALLY HATE SUMMER.

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F--- It All.

F--- It All.

Since January 1, I’ve been in MS hell.

Along with MS fatigued to celebrate the new year I sustained second and third-degree burns to my left leg due to the lovely symptom of MS fatigue. At his point, a month later with four-inch deep busing, nerve damage and the ugly scarring that may ensue, I’m just in one of those moments of “f—- it all.”

If you could only understand…

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Merry Christmas to the Permit

Merry Christmas to the Permit

“What disability?!”

I find it insultingly hilarious that little did Ms. Attendant know this week has been fire and brimstone for my lower back, legs, and nerves. A relapse that started Sunday has continued its teeth-gritting pain on my lower back and legs, and for that small run to the tax collector’s office, I planned to muster up courage and walk in without a cane not be judged by a disease, a disability you can’t see.

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Confession time

I knew I had a severe condition when I started to care about healthcare insurance over five-inch or higher heel sales.  I’ve never been one to care about health insurance; my thoughts were “it’s there, I’m covered, whatever." Being called into a doctor’s office in August of 2017 and being told I have Multiple Sclerosis (MS), an autoimmune disease that is dismantling my central nervous system scared the hell out of me. Through this journey, I want to share with you what I’ve learned so far:

1. I could not continue to live with this disease without paying attention to healthcare policies for persons with disabilities and pre-existing conditions. I now see the importance for me and all of us to be aware of old and new processes to these forsaken healthcare guidelines—one wrong move and we’re all screwed;

2. I am not alone. An estimated 2.5 million people in the world alone have MS, and even better I have come to accept the fantastic support of my family, new and old friends, and do you want to know what’s even more liberating?  Seeing and knowing of other women who suffer like me, but continue to blaze their trails to successfully thriving with a chronic disease; and

3. I ain’t go time for this shit, Big Sean voice.

I graduated from Florida A&M University (FAMU) in the spring of 2015, and as of a couple of weeks ago, I found pride in "Ashley the Workhorse” I’ve been that as long as I can remember. In my vestal career, I have run a racially charged political campaign, suffocated myself in endless projects, and as a result, lost my passion and focus, resulting in a mental, physical and emotional check out for all of 2017.

In a mix of emotions, I see now my diagnosis of MS humbled me. I have small to medium lesions on my brain and massive lesions on my spine causing miscommunication, and a gratitude for life like you can't believe. Until you have symptoms that keep you up for 127 hours (five days) and some two odd minutes, you cherish sleep, a sane mind and eight hours I may never see again.

Nine months later, I believe I am at the “reconstruction and working through phase" of the grief scale. I promised myself after my pity party…of seven months…yes, sip the tea; I vowed not to let this disease control me. Today, on World MS Day I pledge to help improve the education and awareness because we will find a cure to end MS. 

Get Up.

MS is a demyelinating disease that eats away at your myelin, the fatty protective covering over your nerve fibers. What (to me) seemed like a quick fix of “what rehabilitation program do I need to start?,” “or medicine do I need to take?,” quickly became learning experiences on permanent steps I needed and continue to need to start enacting in my life--medical opinions, specialist appointments, and necessary precautions to implement in my life. I felt relieved that I was not crazy, that my symptoms were real; confused to what MS is, and angry that I was going to war-again, but this one bigger than any I’ve had before. 

A walk to my office turned into a blur as I walked up a hill and tripped on an uneven, concrete slab causing me to meet the pavement face first. After falling in front of morning rush-hour traffic, the immediate concern after feeling my teeth uneven were

“MY TEETH!”

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They were shattered, tiny pieces in my mouth, a blooded knee and a lightly scrap chin. “I give up,” was moments away from slipping from my mouth. But that’s not Ashley, that’s not who I am, so I sat frozen for a minute on the ground and started to think “get up and figure out how you’re going to fix this.

And fix it I did. Giving up is a not a luxury I can afford. Cheers to starting over and reminding myself to keep it moving.