Not Holding Them Back

In her second interview with the newly appointed Cabinet secretary, Yolanda Deines, Martinez-Gonzalez decided to put her cards on the table. “I’ve got a medical condition that I have to deal with every day,” she told Deines. “I have MS.”

Diana Martinez-Gonzalez

Deines, a 62-year-old therapist from El Paso who had just taken the job, reached across the table, squeezed Martinez-Gonzalez’s hand and said, “So do I.”

When I talked to the two women recently, I asked each of them what they felt in that moment of disclosure. It was surprise, obviously, but mostly relief.

“Nobody really understands what it feels like to be in my body unless you’re dealing with the disease yourself,” Martinez-Gonzalez said.

Deines (rhymes with minus) had her own moment of disclosure around Christmas 2010 when Gov.-elect Martinez called her to ask whether she might be interested in the CYFD position. The women had known each other for years and worked together on child-welfare issues, but Deines had never mentioned her illness.

“I told her one of the considerations was that I had MS and I didn’t know if that was something that would interfere with how she felt about having me do the job,” Deines said. Gov. Martinez asked Deines whether she thought it would. “And I said, ‘It hasn’t limited me yet.’ ”

Multiple sclerosis is an autoimmune disease that involves the central nervous system. The central nervous system sends its messages through nerve fibers that are protected by a fatty sheath. When the immune system attacks it, the connections are interrupted or distorted, leading to a range of symptoms that can include numbness, dizziness, imbalance, forgetfulness, slurred speech, spasms and fatigue.

Yolanda Deines

Deines, who had her first MS attack in 1998 and was diagnosed in 2003, has had all those symptoms, along with blurred vision and a fiery itching that feels like ants crawling under her skin.

“You aren’t really in control of your body” is how she explains MS. “Your brain sends a message but your body won’t respond.”

Martinez-Gonzalez, diagnosed in 2007, had her first episode five years before that. She accepted the job as division director, and her main symptoms today are fatigue and imbalance.

MS isn’t rare; about 400,000 Americans have the disease. But sharing the diagnosis with your boss or with a member of your executive staff builds a rare bond.

Deines and Martinez-Gonzalez remind each other to eat regularly, to drink water and when they’re pushing too hard to take a short break and recharge.

“Neither Diana nor I stop working at 5,” Deines told me. “But our rule is we don’t go home later than 6. Go home and take a break and then maybe pick up work again.”

Both Deines and Martinez-Gonzalez told me separately that having MS has taught them lessons about the limits of perfection.

Martinez-Gonzalez, a 45-year-old mother of two sons, is the matriarch of a large extended family, and she is learning that it’s OK to not take charge of every holiday meal. Deines has learned to shift her management style more toward delegation, especially when she’s having especially strong symptoms.

“I tell my staff I’m MS-ing. … Everybody knows what that means. I’ll be slurring. I’ll be stumbling,” Deines told me. “It is just being humble enough to say, this is my reality and I need some help to manage it.”

During this year’s legislative session, Deines was slurring her words and having vision problems and was extremely tired. She tripped and fell recently, too, while climbing up bleachers with the governor at an event at a school in Los Lunas.

Deines jokes that she has become very good at falling — and at reassuring the concerned people around her that she’s OK.

Deines has never hidden her MS, but she hasn’t advertised it. Martinez-Gonzalez said she made a point of hiding hers for years because she was worried colleagues would pity her, think less of her or shy away from giving her responsibility. Now they are both opening up to put strong, capable faces to the illness.

“MS doesn’t have to hold you back,” Martinez-Gonzalez said. “Yes, I have this condition, but it doesn’t have me. I can do anything I want to do.”

Deines said she reached out to tell her MS story, because “I want folks to understand. There’s so many people who are embarrassed by it, who feel they are less than or damaged or that it’s a life sentence of incapacity. It’s a message to slow down. You can be anything you want to be. You simply have to pace yourself.”

The co-workers will be doing just that on Saturday morning as they lace up their tennis shoes and take part in the annual MS fundraising walk in Santa Fe. It starts at 9 a.m. at the Railyard Park.

UpFront is a daily front-page news and opinion column. Comment directly to Leslie at 823-3914 or llinthicum@abqjournal.com. Go to www.abqjournal.com/letters/new to submit a letter to the editor.
— This article appeared on page A1 of the Albuquerque Journal