Selena Gomez, Nick Cannon and my wife Marilyn
I didn’t know what LUPUS was. I didn’t know that LUPUS can kill you.
My my wife took ill, twenty-five years ago after my son’s birth. Marilyn’s energy slowed, arthritic pain set in and a rash appeared on the bridge over her nose and cheeks. Red deep purplish spots would appear out of know where. Here was a woman who always worked a full-time job. Raised our children and put up with my demanding work schedule as a journalist. Like clockwork, upon my arrival home late at night the children would have done their homework, been fed dinner and put in bed.
Marilyn would be up when I arrived home. Marilyn would watch the news or the highly popular at the time, Larry King’s Show on CNN. Marilyn was an avid news junkie when I first met her. I remember sitting in her mothers’ kitchen with everyone watching the news. If her family members were not watching the news, they were sitting there with a newspaper in their hands. Being informed was a mandatory tradition for her family.
But, then a tendency developed. I noticed that as soon as Marilyn returned home from work she would be in the bed. I would check-in throughout the day to see what was going on. I found Marilyn already in bed to be unusual. She was the parent that took our children to their practices along with their friends and made mall trips to purchase shoes that she always hid in her closet away from me. When asked what’s wrong she normally said:
“I guess I am coming down with the flu.”
Marilyn would smother herself with Ben Gay ointment to relieve her joint pain. This ointment as far as I was concerned was a remedy for grandmothers, mothers and every elderly person. Growing up, Ben Gay was so commonly used in the African American community, it seemed like African Americans were stock holders of Ben Gay. Personally, I could not stand the odor and I found myself sleeping on the couch in the living room when Marilyn would put Ben Gay on. Ben Gay reminded me of old people and here we were a young married couple with a lot of living to do.
My children are adventurous like me and we would all go out as a family to do activities. Marilyn always had to be prodded into going with us. However, one time she put her foot down and said “I do not feel good.” My daughter and I winked at each other. We wrongly thought home body mom just wanted to stay home again. We had the impression that mom was doing her usual of not wanting to go. Finally, after making an appointment with a rheumatologist Marilyn was diagnosed with (SLE) systematic lupus erythematosus. An inflammatory disease which causes the immune system to attack its own tissue. This would be the same disease that plagued her mother who was seventy years old when she was diagnosed. In addition, this disease attacked a friend of Marilyn’s in college long before doctors knew what it was. She had to leave school until her doctors could diagnose her and find the right treatment. Today, this person has her law degree and is a partner with her husband in their law firm. Another childhood friend that she kept in touch with succumbed to the disease and died in her thirties.
Was death through my wife’s health, staring me in the face, and I didn’t say it.
I’m guilty as charged, to completely not know what was going on. This was a wake-up call for me. I knew nothing about this disease. Compounding the problem I always shield away from bad news. I’m a half full, as compared to a half empty type of guy. I have always been an optimist by nature. Even when there are impossible odds against me, I always see the positive. Dealing with health issues were not my strong point. I hated hospitals and preferred to send flowers or call the person on the phone. I would often tell them that my work schedule kept me from visiting.
Marilyn had suspected Lupus but kept it to herself hoping that she did not have the same disease as her mother. I can recall the days when “Mrs. Stevens,” (that’s what I always called my mother in law who I absolutely adored) used to fumble for her keys as her fingers turned purple and I would say “let me help.” I remember how she would for hours scratch her scalp as her hair became thinner and thinner. Psoriasis and eczema are common among people with this disease. My wife does the same thing especially during the winter months when the temperature drops.
Just like my mother-in-law years ago, I see that my wife’s hands and feet are often ice cold and purple. At times, it would be so hot in the house to accommodate Marilyn. My son and I would say let’s turn down the heat but she would be sitting next to us shivering.
It took me a while to “get” it. But ultimately I had to explain to my son that mom’s body temperature is different from ours.
After being placed on multiple medications such as prednisone and plaquenil and a hospitalization to combat her flares, Marilyn’s worst attack took place once as we traveled. Our first stop was San Diego on vacation. After a few days she started to complain about how the heat was making her tired. She had been careful about wearing plenty of sunscreen and a hat. Photo sensitivity is common in lupus patients. A skin rash appears and normally becomes worst and turn into lupus lesions.
After San Diego, I was broadcasting live in 2008 from the Republican Convention in Saint Paul Minnesota. Arizona Senator John McCain was accepting the GOP nomination, with Sarah Palin on his ticket. The convention ended on a Thursday night, and the next night I was giving a speech in Erie Pennsylvania before the Greater Erie Community Action Committee, a group known as GECAC, fighting poverty. Marilyn was driving to Erie, about an eight hour drive from NYC, with our beloved niece Sharelle Mitchell, our daughter Courtney and my son Dominic. With three drivers going to Erie, the trip was supposed to be a breeze. It was the complete opposite.
Marilyn moaned the whole time, drank cough syrup to try and knock herself out because of the pain and constantly switched seats in the SUV hoping that one of the seats would be magical and she could find the comfort of sleep. Finally, after I didn’t complete work in Saint Paul at the RNC convention until about 1 am in the morning, and I caught a 6 AM flight to Erie, upon my arrival I received a call that Marilyn had to go to the emergency room in Pennsylvania and that she would be on a morphine drip for the rest of the night.
What was I supposed to do? Cancel my engagement or be with my wife? My daughter and niece delivered Marilyn’s message to me, “the show must go on.” Making matters worse, the airline lost my luggage, and I had to wear the same suit. My daughter and niece ran to Macy’s, and picked up a new tie for me.
The speech went great, but I was so torn on an emotional level. I was delivering a speech to about one thousand people, and my wife was very sick back at the hotel. Whether I was ready or not, I was about to start learning a lot more about Lupus.
We left the next morning as Marilyn slept the whole time back to New York. She still has those flares but they are not as severe as they were in the beginning.
I have learned that Lupus does not discriminate as Selena Gomez, Toni Braxton and Nick Cannon have come forward with their lupus diagnosis. According to the Lupus Foundation” Approximately 1.5 million people in the United States have lupus. People of African, Asian and Native American descent are more likely to develop lupus than are Caucasians. Although it can occur in both men and women, 90% of people diagnosed with the disease are women.”
As I sit here today I can now tell when Marilyn does not feel well. Lupus has forced her to slow down. Stress is a precursor of this disease. We were planning Courtney’s 30th birthday party and instead of catering the affair, Marilyn as usual, prefers to do all of the planning, cooking and running around to make this event run smoothly. Marilyn like myself grew up poor, and believes in saving whenever she can. Marilyn always says to me “why should I pay someone else to do what I can do’? This time of year, Marilyn becomes melancholy and sits quiet and as she makes out her list of things needed to do for the party. I know deep in her thoughts she wished Ron was here to help her. I see her smile and I know she is thinking of him and asking herself what would Ron do? Ron was her protector and would often sit with her when she was not able to move about so freely.
I watch Marilyn as she goes about her day much slower then she has been in the past. A flare is upon the horizon. Besides slowing down I see that the butterfly on her cheeks are much more pronounced and marks appear on her body. She has had her flu shot as we sit and listen to the number of deaths that have already taken so many especially the young. I must watch her carefully for signs of her flare and now the flu. For her to get the flu will mean a long recovery. People with lupus often do not recover as fast as the average person. Their immune system constantly works against them. Marilyn finds a warm bath and a glass of wine as a de-stressor at times.
Lupus is not only a physical disease, but it is also an emotional disease. Over the years as she tried to explain to me “I do not feel well.” In frustration, I would continue to ask what is wrong? Marilyn’s outer self generally would look fine to me.
These days I read everything that I can about Lupus. I have learned not to push Marilyn to join us in activities like I used to. I had to learn how to make dinner myself or pull out a menu from several of my restaurants I like to indulge in. Instead of always being on the go (if you have not figured it out I am an extrovert and Marilyn is an introvert) I have learned to slow my weekends down and sometimes stay home and watch a movie with Marilyn.
Lord, do women love the Lifetime cable channel, and love stories. Marilyn is an avid reader.
Truth be told, as I have matured over the years I know that I cannot hide myself away from unpleasantness. One never knows what curves life is going to hand you. To help me deal with this unpleasantness I have always compartmentalize my life. The psychiatric community explains this by stating that “compartmentalization is a subconscious psychological defense mechanism used to avoid cognitive dissonance, or the mental discomfort and anxiety caused by a person’s having conflicting values, cognitions, emotions, beliefs etc. within themselves.”
I recognize this truth. My wife’s diagnosis of Lupus does not allow me to hide from the truth. The reality is that I can no longer view her as the superwoman I have had in my head all these years. I cannot expect her to hold down a full time job and to deal with family issues because I am too busy to deal with them. I can’t expect Marilyn will have the solution at the drop of a hat. Lupus patients have what is deemed a lupus fog. A fog is classified as “Cognitive impairments that often appear with lupus, including concentration and memory problems, confusion, and difficulty expressing yourself. These cognitive problems are often worse during flares”. Through all of this what I have learned is that I have to change.
I have to change in understanding this disease. I consider myself lucky because Lupus has a way of attacking organs particularly the kidneys and dialysis follows thereafter. I am blessed at this point in life that her organs are healthy. I have learned to count my blessing and to live each day based on how my wife is feeling and not always based on what I want to do.