For the next three days, in between her business obligations, we laughed as often as we could; cried together when we couldn’t hold back the tears; and prayed together that this trip would mark the return of her sight. We even took one of those architectural river cruises through the city, hoping that a Hollywood moment would occur and her sight would miraculously return as the sun began to set in the western sky. It did not, and she returned to Los Angeles as she’d left, unable to see from her left eye and not knowing why.
By week three, the sight in her right eye was starting to fade as well, but test results showed that her eyes were not diseased. Based on her symptoms, she was advised to see a neurologist. After Shani researched potential physicians on the internet, she made an appointment with one of the highest rated. After undergoing a series of tests and a MRI, she learned that what she was experiencing had a name—multiple sclerosis.
MS? My first thought was that it couldn’t possibly be MS. Wes’s wife, Dawn, had been diagnosed with it years before, so lightning couldn’t possibly strike the same family twice! Dawn first presented with double vision and loss of taste. Shortly after that, her balance was affected, so it couldn’t be the same thing. Or could it?
Shani once again searched on the internet and found a specialist who was given high marks in MS treatments. This doctor prescribed a course of action: Shani was to give herself shots, rotating around her body every other day with Betaseron, a drug designed to reduce the number of MS-induced relapses. The doctor then said this particular medication might cause depression, so she prescribed Prozac. Then she said it might also cause insomnia so she gave Shani a script for Ambien. No further directions or cautions about dealing with the side effects of combining these drugs were given. This was a completely different course of action than Dawn’s (who injected herself once a week with an entirely different drug), which is why I suspected Shani’s case might be a little more progressive but hopefully as manageable as Dawn’s seemed to be.
Almost all of Shani’s eyesight returned by the following June, but prior to that she experienced a growing numbness on her left side, which she compensated for by increasing her exercise schedule to keep her muscles as strong and agile as possible. She pushed through her every-other-day drug regimen while continuing to go to work every day, trying to keep up with the required billable hours and even joining voluntary office committees. We continued our weekly family check-ins so all of us could keep track of how Shani was feeling and how Jamaar was coping. Both of them reassured us each week that Shani was making progress; her vision, while not back, didn’t seem to be getting worse; and Jamaar was able to work uninterrupted but still be responsive to anything Shani needed. We didn’t see them that Christmas because it was their turn to visit his dad’s family in Wisconsin. Not hearing otherwise, we entered the New Year thinking Shani was living with MS relatively well. We suspended the family’s weekly check-ins.
Near the end of January, however, Jamaar called and said that Shani hadn’t slept in three days and she was hallucinating. He had called the doctor but was told she was on vacation. No other contact information was given. I tried calling, to at least speak with someone who was filling in for the doctor, but got no response at all to my messages. I was pissed, panicked, and prayerful all at the same time. My journalism training reminded me that HIPAA laws prevented the doctor’s office from disclosing any information to anyone other than the patient. The lioness in me, furious, thought, How the hell are people supposed to know what to do with a patient in crisis if we can’t get any directions or referrals? My instinct told me this couldn’t wait so the next day I was on a plane to California, lifting up a silent prayer that I would know what to do once I got there.
When I arrived, there was no “Hi Mamacita.” No hug. No warm smile. There was an uncharacteristic, first-time-ever mistrust in Shani’s eyes. She was agitated and combative, acting paranoid and answering questions with short, curt responses. But as alarming as this was at first blush, I no longer felt panicked, just anxious to figure out what was going on. I knew my child and had faith that no matter how loudly she snapped at me or glared while I was speaking, I hadn’t lost the real Shani forever. I thought back to an incident from my college days when my mom, who has been asthmatic since childhood, was prescribed prednisone to treat an asthma attack. She followed the instructions listed on her bottle, taking three pills three times a day. By day three she’d become incredibly paranoid, even mean, not wanting to speak with anyone on the phone or see anyone except my dad. Knowing that the only new variable in my mom’s life was the medication, he called the doctor, reported what was happening, and read the dosage indicated on the bottle. The doctor was horrified: The correct dose was one pill three times a day. She swore up and down that the mistake was on the pharmacist’s end. She told my dad how to safely wean my mom from the overdose, and within a few days her state of mind returned to normal.
I never lost faith that what was wrong with Shani was something we could fix. I believed every moment, deep in my heart, that we just needed to work hard and we would find a solution. My anxiety was tempered by my faith that, as with my mom, somehow everything would be okay in the end. But oh, did I wish I had a trusted doctor to talk with! Turning to our family network once again, I called a neurologist friend of my brother’s in New York. She said if I could get Shani to New York, she would do a full evaluation. The challenge was getting Shani there.
She started sleeping on and off, so Jamaar and I tossed around the idea of driving her cross-country. He was exhausted, however, after working and staying up with Shani at night over the past few days. Even if we were both fully rested, driving the three thousand miles would probably take three to four days, us taking turns without stopping overnight. The fastest way was flying, but airline security was at an all-time high; given Shani’s agitated state, we feared that if she got nervous on board, air marshals might overreact. The only other option was the train. It would take three days to get back east, but that seemed to be the safest option. At first Shani agreed, but then at the last minute she refused to go.
It was a phone call with my mother that finally achieved the impossible. My mom told Shani that she had a dream the night before that my dad, who had died four years earlier, was walking into the room Shani usually stayed in when she visited their home in New York. She asked him why. “You know Shani’s coming and she needs to sleep there.” I heard Shani reply, “That wasn’t a dream. Papa Jim wants me to come.” They got off the phone and Shani calmly said, “I’ll go.”
The next morning, without any resistance from Shani, Jamaar drove us to the airport and we boarded a Southwest plane back east.
The next morning we had an appointment with Carolyn Britton, MD, an extraordinary neurologist who became Shani’s lifeline to normalcy. With the demeanor of a grandmother, the gentleness of a spiritual counselor, and the knowledge of a renowned practitioner, Dr. Britton explained that test results would have to confirm her diagnosis but in all probability the combination of drugs Shani had taken had created a toxic cocktail that caused her insomnia and psychosis. Shani and I stayed in New York almost two months while she underwent the initial weaning process with both neurologists and psychiatrists. Jamaar flew in every other week to see Shani, and when the doctors determined that she could return home to continue her treatments, he flew in to escort her back. It was a relief to see my daughter had a partner she could rely on unconditionally to help her recover. Jamaar was indeed a part of our pride, and I was so grateful to have him standing by Shani’s side while we were all figuring out the next steps.
It was by no means easy, and it would be months more before Shani could rid herself of the drugs that had gripped every fiber of her being. But when her mood was no longer being dimmed by the drugs, Shani came back with a vengeance, determined to take control of her own care and well-being.
Advances in modern medicine are getting closer to a cure that will allow Shani and the estimated 250,000 to 350,000 people c
urrently diagnosed with MS in the United States to live mobile and pain-free lives. Until then, Shani continues to keep up with the latest research, following what years ago became one of our family mantras: All you can do is the best you can do, and the rest you have to leave to faith. It’s not a blind faith, but faith grounded in informed decision making, constant vigilance, and an active pursuit of wanting more, of wanting better.
As a family we embrace the Presence of Faith, grounded in the teachings and examples of my parents and bolstered by many acts of kindness from friends, mentors, and good people who walk with us. Thank God, Shani is thriving and an inspiration to anyone who meets her. With her deep faith and spirituality, she’s determined to live her best life, no matter what direction it takes.
LESSON FROM A LIONESS: Faith and medicine work, but it won’t hurt to give them a boost.
Physicist Edward Teller said, “Faith is knowing that one of two things shall happen: either you will be given something solid to stand on, or you will be taught how to fly.” Once Shani was able to focus on her faith, she could return to the prayers that buoyed her in her youth. For her, prayer was a personal and spiritual conversation with her God. But not everyone has this faith connection or feels comfortable with the classic definition of prayer. The reality is that prayer can come in many different forms, and over time Shani added meditation to her daily spiritual regimen.
She, like millions of others who have embraced meditation, found that it provides a way to calm the mind, identify her greatest need—in her case wellness—and visualize the best possible future. Emma Seppala, PhD, director of Stanford’s Center for Compassion and Altruism Research and Education, says that there are twenty scientifically proven reasons to consider meditation, including these: It increases immune function and decreases inflammation and pain; it increases positive emotion and decreases depression, anxiety, and stress; it boosts self-control, improves productivity, and changes the brain by increasing cortical thickness in areas related to paying attention.
There are many different approaches to starting a meditation practice. One that inspired me is by Wendy Koreyva, a certified instructor in meditation and yoga, who advances an easy six-step approach to getting started:
1. Choose your mantra. A mantra is a word or phrase that you silently repeat to focus your attention on something other than your thoughts. It can be any word, but Dr. Koreyva suggests using a Sanskrit mantra, So Hum, because it is not English and will not trigger additional thoughts.
2. Find a comfortable place to sit. You need a place that is quiet and where you will not be disturbed.
3. Gently close your eyes and begin taking deep breaths. These first few breaths are called cleansing breaths. After a few deep ins and outs, continue to breathe at a normal relaxed pace through your nose.
4. Begin repeating the mantra in your head. The repetition of the mantra should become almost effortless. Sometimes it is helpful to imagine that rather than repeating the mantra to yourself, you are actually listening to it being whispered in your ear.
5. Do not try to stop your thoughts or empty your mind. As you continue with this process, Dr. Koreyva says you will inevitably drift away from the mantra. It is human nature for the mind to wander, so she advises not trying to stop your thoughts or empty your mind. If you find that your thoughts are drifting, simply return to silently repeating the mantra.
6. Stop repeating the mantra. After approximately twenty to thirty minutes, you can stop repeating your mantra and continue sitting with your eyes closed. Spend a few minutes relaxing with closed eyes before resuming normal activity. (You can use a kitchen timer; there are also smartphone apps available that provide a gentle tone to mark the end of a meditation session.)
If a walking meditation regimen is preferable, health psychologist Dr. Kelly McGonigal suggests a ten-minute walking meditation involving one minute of paying attention to each of these: (1) the feeling of your body walking, (2) the feeling of your breath, (3) the sensations of air or wind on your skin, (4) what you can hear, and (5) what you can see.
Follow this with five minutes of open awareness in which you allow anything you can observe or sense to rise up into your awareness. Don’t go looking for things to hear, see, or feel. Just let whatever rises up into your awareness do so and be naturally replaced by something else whenever that happens.
In the Spirit
Seeds of faith are always within us; sometimes it takes a crisis to nourish and encourage their growth.
—Susan L. Taylor
It was a steamy July in 1984 when the kids and I moved back to New York. Feeling for the first time in a long time that I had control of my schedule, I began the process of mapping out our next couple of months: get us all settled in our new, albeit cramped, space within my childhood home; research schools in the Bronx or nearby Westchester and get the kids enrolled; go shopping for school clothes; and finally, around September, start my job hunt. After Wes’s death, instead of going back to work full-time, I did freelance writing for publications in Washington so I could be more available to the kids. Writing radio or brochure copy is what I had been trained to do, so one day my girlfriend from college, Mary Braxton, called and said Essence magazine was developing a weekly television show—Essence: The Television Program—and needed a writer. Immediately, my insecurities got the best of me. I had written and produced for radio, not television, and news was my thing, not the lifestyle content the magazine was known for. I figured I wouldn’t even have a chance at getting the job. But Mary convinced me to at least check it out.
After meeting with the director, Alexis Revis, whom I learned during the interview had also graduated from my alma mater American University, I submitted my writing samples. I was called back to interview with Susan L. Taylor, the editor in chief of Essence magazine and the show’s host. If you are not familiar with Susan, she had joined Essence the year it was founded and was instrumental in not only its growth and success but developing its unique brand. She is what Dame Anna Wintour is to Vogue—iconic and extremely influential. I was terrified to meet her because back then for a writer, it was like having an appointment with the queen, except this queen had been called “the most influential black woman in journalism today.” The job I was applying for was not just important but actually groundbreaking in television. It was my chance to stretch out of my comfort zone and contribute to the beautiful booming voices the magazine was already sharing.
After all this buildup in my mind, of course my stomach was in knots when I walked in to meet Susan. I was so afraid that my clothes weren’t right, that she’d notice my worn shoes, or that I’d sound like I had no idea what I was talking about. I tightened my stomach to keep it from growling. But Susan couldn’t have been nicer nor our meeting any more cordial. We talked about the show and its needs, but we also talked about our West Indian backgrounds, our children and our hopes for them, and the country as a whole. I walked out with the job and into one of the most exciting chapters in my expanding career. But what I didn’t know then and would learn over the next five years as the show’s head writer is that Susan’s dominance in publishing and everything else she conquers stems from a deep spiritual place that she unearthed when leaving an abusive marriage.
The path to single motherhood for me had to do with infidelity, disrespect, and disregard. The night it descended into physical violence, I fled. I’m not a woman to take beating. I was twenty-three, and knew I would be in one of those prisons that I often visit women in—women serving life sentences because they murdered their abuser. That could have been me.
I am just grateful that I had the good sense to pick up my Shana and leave when she was six weeks old. Mommy welcomed us back into the home I had left at seventeen. The challenges of living with my mother—I inherited her bossiness—made me vulnerable to my ex begging his way back into my life. The following year, for a short period of time, I gave the marriage another chance. But again, there was infidelity. It didn’t weigh on me this time bec
ause the magic was gone, the trust was gone, and it was just a matter of time before I left for good and became a single mother for good. I went from being a middle-class, well-supported wife to a poor single mother overnight.
Susan faced her single motherhood head-on, often calling her daughter Shana “my anchor,” who provided her the power to keep pushing through poverty, loneliness, and an unrealized career. She tried to keep up with her growing cosmetics company, which she started years before, but the products were in her husband’s beauty salon. Susan hadn’t yet gone to college, but her knowledge of cosmetology led to work as a part-time beauty editor for Essence magazine. Her salary at the new magazine was $350 a month, and her rent alone was $368!
I was so stressed. I had a pain in my chest and difficulty breathing. I thought I was having a heart attack and went to Columbia Presbyterian Hospital in New York City, where the emergency room doctor said, “You’re not having a heart attack. It’s an anxiety attack, and you need to relax.” I left the hospital and started walking up Broadway thinking, “How can I relax, with the world shifting beneath me?” It was a gray October day, and misty. I was now twenty-four, relieved I wasn’t having a heart attack but so fearful of what was going to happen to Shana and me. My mother was struggling too. And Daddy had passed away. I kept asking myself, “How am I going to keep the roof over our head? How am I going to feed Shana?” My car was broken down. I had no money. I literally had $5 in my pocket that day!
The Power of Presence Page 11