Down the Rabbit Hole


Devona Jefferson, frustrated with the toxic work environment that was wreaking havoc on her lupus, reached her wit’s end and jumped down the rabbit hole.

But such jumps are never simple. Devona was already doing fine art photography when she left her job, and knew she wanted to expand that into a business. The problem was she had no business plan beyond a vague idea that she should approach galleries to display and sell her art.

To complicate matters, Devona’s husband was in the midst of a major job transition. But, there was the Affordable Care Act for health insurance, and the life insurance that was portable from a previous job. They broke into their pension plans to cover the basics – mortgage, food, tuition for their young son’s school. Yanking him out of a Montessori school was not an option.

She couldn’t even take cherished former colleagues with her on her new adventure; the conversation would always turn to the ever-worsening environment. Every phone call or chat over coffee brought her right back to where she did not want to be. Afterward, she would talk worthless, look worthless, feel worthless. It broke her heart to cut off her colleagues, but Devona could not afford to bring that baggage with her.

Starting from scratch can be stressful, but Devona was not going to let herself be stymied by the devils that live in the details. She knew she wanted to go into fine art portraiture, but high-end non-studio portraiture is a niche market, with a clientele that has to be nurtured carefully. Until she has established herself, waiting on income will continue to hover over her lupus.

While she strives to build her presence in those markets, she hired a business mentor who is now a business partner, but still a mentor, and who literally pushed her into New York Fashion Week (NYFW). She took Devona up to New York with her a few years ago. Devona had never thought about fashion photography before, but because of her lack of experience in the fashion genre, she was able to provide a unique perspective and one of the designers chose one of her pieces for his promotional materials.

It was so exciting to be validated that way – who goes up with no experience and no intention of shooting, and comes away with exposure on that level??? She didn’t even know what to call this new niche until a year later, but she promoted the heck out of it and knew she wanted to go back.

That first time, the environment was a bit of a shock to her lupus, but she has been to every NYFW since. Devona says that her rheumatologist absolutely hates when she goes, but has resigned himself to the fact that that is what she wants to do, and works with her to minimize her flare-ups, prescribing Prednisone just for that week. She also carefully plans which shows she attends, as well as regularly scheduled times to eat and rest.  If she does not stick to the boundaries she has set for herself, she knows she will be in big trouble.

When she’s up there, the adrenaline and her routine keep her going for the week, but when she comes home, she’s out for two days, like many of us would be, just with a deeper and more dangerous kind of tired. She bounces back pretty well after that. Sometimes she has to push herself through getting back to her routine, but it’s nothing she can’t deal with.

As Devona builds out her business plan and expands her portfolio, she reflects on how far she has come.  Her diagnosis came relatively early – she was only 18. Back then, her only frame of reference was a soap opera scene, where the lupus patient melodramatically dies from complications of lupus, so the diagnosis brought a flood of tears as soon as she got to the safety of her car.

She hears horror stories of other lupus patients and she feels lucky.

As with many of us, the more she learned, the more she understood she was relatively healthy, and the less scary her condition got. She can feel it coming now, in the quality of exhaustion, which helps her to properly accommodate her flare-ups. She had an uncomplicated (but high risk) pregnancy, and her son shows no signs of any health issues. Her symptoms manifest in her joints and extreme exhaustion as opposed to hair loss or rashes or anything that could cause her death. She has her kidneys checked regularly, and has her son periodically checked for heart disease, but the truth is, sometimes she forgets she has it.

It’s been a scary, exciting, energizing, tumultuous time, but still better than the job she had left behind. She has no regrets leaving the structure and security she had. Since she left, no one has told her she doesn’t look sick like they did a thousand times, or condescendingly remarked that she looked too good to have been sick the day before. She still has limitations, but she accommodates them on her terms, not someone else’s.

There’s still a long way to go before she reaches where she wants to be, but she’s well on her way, her lupus exactly where it should be – in the sidecar, not the driver’s seat.