I'm the guy sometimes referred to as "Hubby"; maybe you've seen me mentioned once or twice in @LAlupusLady's Twitter timeline. I have the honor of writing a Guest Post in honor of Lupus Awareness Month and my wife, the "super hero" you know as "LA Lupus Lady." I am writing this post because "I love someone with Lupus."
Lupus has been a part of my life for almost nine years; the anniversary of our first date is coming up. One night not long after that amazing night, while enjoying one of the perks of our new relationship -- my satellite TV--, Amanda seemed a bit distant. She looked at me with pouty eyes and said, " I have something to tell you -- I have lupus." My heart skipped a beat. What little I knew about it at the time wasn't very good--a few years earlier, a business colleague died from it. She then told me a bit more about her specific case. It was mild. She was diagnosed in her teens and she had the best possible medical care and doctors one could hope for. She then said for the first time a phrase that has become a life mantra -- "I may have Lupus, but Lupus doesn't have me!" She knew that she has dropped a bombshell on me, so as she left that night she looked at me sadly and said "If you don't want to continue seeing me, I will understand, but let me know."
She had encouraged me to go online to learn more. After she went home, I read all I could find for hours. I learned more about the symptoms, the flares, but most of all, the fact that Lupus can be fought, if only for one day at a time. I read some patient testimonials on WebMD and I saw their spirit and they mirrored hers. I knew at that moment that I was blessed to have Lupus in my life -- for in Amanda I saw true perseverance, strength and resillience. It gave perspective to my own life struggles, where the stakes were far less dramatic. It helped make me realize that not only was Amanda the most uniquely intelligent, savvy and beautiful woman i had ever known, but those qualities came in large part out of her indomitable determination to not let Lupus have her. Instead, we have each other.
In our seven and half years of marriage, I've shared many passions with Amanda -- for example, against her instincts, she not only became a baseball fan but indeed got to share my last-ever game at my boyhood shrine, Shea Stadium, the former home of the New York Mets.
None of the journeys through the worlds that I have invited her into can compare to the daily journey of the world of living with Lupus. The fact that she has become so prolific in sharing her experience, strength and hope with so many others make me exceptionally proud and love her that much more. I am glad that you, dear reader, have come on board as well.
Here's to health and happiness, yours and ours.
aka Mr. @LAlupusLady