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Cecelia Johnson: Life in Light

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By Meghan Hendley

Photos of Cecelia drawing by Andy McWilliams
Photos of artwork courtesy of the artist

During a time when our city should have been experiencing the typical heat and humidity of spring, I was grateful for an unexpected cold front and the day it allowed me to spend with Cecelia Johnson.  Cecelia and I have been friends without knowing it for years, running in the same circles and sharing a love for the Houston arts community. Bubbling with joyful banter, wide-eyed and passionate, Cecelia embraced our day together by soaking in the beauty of a clear blue sky and the inspiration that comes from every stroke of charcoal.

We debated a number of topics such as the next choice of color on rice paper and the musical offerings of chillwave.  We took great pleasure in explaining our artistic influences, took advantage of the joy of chocolate milkshakes, and shared stories about our experiences in the local art scene. Our ideas bounced off each other and leapt from the pages of the paper strewn across the floor of Felipe Lopez’s space at Winter Street Studios.

Watercolors, charcoal,  and acrylics were engaged for hours as we laughed until our legs went numb. The day remained chilly and we used scarves to keep ourselves warm. The unseasonably cool weather provided not only an opportunity to indulge in a favorite fashion accessory but it also allowed Cecelia to be out and about for an entire day. Lower temperatures offer relief from the symptoms of the neurological battle that she endures. Rest breaks and guided steps were scattered throughout the day but they did not detract from the pure happiness found in the hours we spent together. Cecelia is not only a beacon of artistic light but also of personal strength.

After we finished our art, we hung out and talked about life. The conversation touched on several topics including what it’s like for Cecelia to be living with multiple sclerosis (MS). Despite the weight of contemplating this neurological disease, we found joy in the fact that art still remained as she pulled out page after page and piece after piece of her creations. These pieces revealed the story of joy, pain, intuition, and imagination.

Visual Discovery

Cecelia’s artistic influences include Leonardo da Vinci, Robert Rauschenberg, Hans Hofmann, and Commander Mark and the Secret City (a PBS program that taught children how to draw through a cosmic journey of the imagination). This show triggered something in Cecelia as characters such as Moonbot, Furbles, Violet the Dragon, Unibear, Pigasus, and guest artists demonstrated how to draw, along with displaying various art forms. Cecelia can say she drew her first oil painting while she watched Bob Ross, the puffy-haired PBS icon, create one of his legendary pieces.

With an array of art at her fingertips, Cecelia fostered her imaginative creativity at quite an early age.  Dance, music, and visual arts paved the way for her to embrace the passion of the beautiful through these various art forms. Gravitating towards visual arts, Cecelia chose to study studio art at Lamar University in Beaumont, Texas. Through this experience, Cecelia crafted her style of intuitive visuals combined with a subtle boldness of lines and subjects. Her greatest body of work includes massive Byzantine-inspired pieces depicting her interpretation of saints and religious icons. Grand in size, opulent in texture, and striking in appearance, these figures illuminate the talent Cecelia possesses and the ability to portray a stirring subject. The late abstract expressionist painter Dick Wray mentored Cecelia and helped her progress in her talent, aiding her with her imaginative processes. Not long after entering college, Cecelia discovered the physical component of her life that would change her personal landscape.

Ability Altered

Starting at the age of 12, this budding artist experienced signs of something that appeared to be neurological stirring inside of her. When Cecelia was in college, doctors diagnosed her with multiple sclerosis. She was 22. Multiple sclerosis, affecting more than 2.1 million individuals worldwide, is an inflammatory disease that affects the ability of nerve cells in the spinal cord and brain to communicate with each other proficiently.

Multiple sclerosis is unpredictable. One’s immune system attacks and damages the myelin causing the axons to struggle when conducting signals. The actual name of the disease refers to scars, better known as lesions, in the white matter of the spinal cord and brain where the most myelin is stored. The cause? Unknown. A cure? Not yet. A mystery? In many cases, yes. Those living with MS face a daily battle with the disease at the helm.

Shortly after her diagnosis, this elusive disease worsened, significantly altering Cecelia’s ability to perform even the most basic of tasks at times. Her abilities, including her great talent in art, became an indefinite struggle. Many individuals living with MS see the disease progress to not only a physical but also a cognitive disability. With acceptance of this fate, Cecelia chose to move forward instead of remaining stagnant in her condition. Despite the imminent struggle that would mark her daily life, she committed herself to her deep passion for art. One of the most difficult realizations for this artist was the fact that large-scale work, such as in her Byzantine series, was now near impossible to consistently create due to pain and limited basic mobility. She shifted her focus to smaller works, anything feasible that could work well as a canvas lying on a bed during the times when she faced limited mobility. Cecelia’s talent and her fervor for both art and life give her a unique voice-one that can help educate and increase awareness of multiple sclerosis.

Stem Cells and Pastels

There has been a great debate in this country about the use of stem cells. Dramatic discoveries have been made in the use of adult stem cells. The risk of stem cell use has been found to be the highest when the source changes. More and more documentation has pointed out that the safest cells are your own adult stem cells in comparison with embryonic stem cells (which bring up both a scientific and moral debate). There is also research and experimentation with new artificially-induced pluripotent stem cells that are still being investigated for their benefits and subsequent risks. Some would say that the great stem cell debate is fueled by money. Much of the stem cell shouting match has been sponsored by vested financial interests in order to protect markets. Many patients are going overseas or finding ways to access their own stem cells for therapy, which means bad business for companies trying to produce patented FDA stem cell drugs.

Stem cells can help regenerate, lessen symptoms, and aid someone in daily life as in Cecelia’s case. Desperate for therapy to help slow down the rapid progression of her disease, Cecelia turned to stem cells in 2007, traveling with her mother to Mexico for experimental treatments. They continued this medical pilgrimage for four years, a decision that allowed Cecelia to continue to function and create. In 2010, these trips across the border ceased due to the high expense of the treatments.

Desperate for another solution closer to home, Cecelia began to look to the state of Texas as an ally. Early in 2012, the Texas Medical Board approved new rules and procedures for stem cell therapies. Cecelia turned to Celltex, a lab right here in Houston that would help her with therapy from her own stem cells. This saving grace came with a hefty price tag of $30,000 but, thanks to the support of family and friends, Cecelia was able to raise the funds she needed. In August of 2012, Cecelia had several hundred thousand cells harvested from abdominal fat. It wasn’t long before the FDA got involved and started a full-blown investigation of Celltex, thus halting their efforts to aid those in need like Cecelia Johnson. Her story and that of others involved with Celltex was featured in a huge article for Bloomberg Businessweek. Cecelia was left to seek medical refuge overseas and faced a most difficult struggle for the rest of 2012.

So far, this new year has proven to be a better time for Cecelia but with the degenerating disease there comes good days and bad days. Her life and the evolution of her disease has been captured on film in a brief documentary revealing her hopes of improving the state of her health with stem cell therapy. Cecelia greatly wishes to have a more in-depth and widely-released documentary with the goals of shedding light on this complicated disease, aiding others who struggle with multiple sclerosis, and educating those who are researching MS on a daily basis.

Cecelia’s current work utilizes charcoal, pastels, and anything else she can find during the times she must remain indoors due to the heat that worsens her symptoms. The work she creates in these moments is a melding of the primitive and imaginative, augmenting her eye for otherworldly ideas. Despite the loss of dexterity and mobility with each passing day, Cecelia still creates an abundance of artistic treasures that truly speak to this artist’s commitment to her craft. She is a beacon of light to those who struggle with MS, and this light will not go out as long as she has the passion paired with the growing help of those around her.

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For more information on the artist and her work, visit www.ceceliajohnson.com.