I recently had a chance to interview an author and fellow lupus patient, Marilyn Morris, who I thought would be a great addition to the wonderful writers we’ve had this month for our awareness event. As an accomplished writer and someone who entered a life with lupus on the later side than usual (at 50 years of age), she exemplifies a commitment to herself in staying true to her passion for storytelling in the face of her challenges with lupus.
Marilyn had already established herself as a talented writer before she began noticing some changes in her health. Like many, she didn’t have the traditional “butterfly rash” or any of the skin lesions often found with discoid lupus. She did, however, find herself with the other more common problems with being very tired and sore, particularly in her joints:
“I woke one morning with my hands so swollen I couldn’t make my morning cup of coffee. I noticed that all my joints were swollen, red and hurting. I began feeling extreme fatigue, too. It was a few days before I finally decided to go see my doctor, who guessed it was just rheumatoid arthritis (I was 50, after all) and prescribed arthritis meds. But they didn’t work. So I began searching for answers.“
Fortunately, Marilyn was persistent and committed to taking care of herself. She is also a writer and editor, which means she has a tendency towards researching topics thoroughly. I was interested to hear more about how her diagnostic experience went, knowing that this pursuit of a story may have influenced how she achieved her diagnosis:
“It took about three years and five doctors. All the time I was working, feeling awful, losing jobs due to my lack of concentration, calling in sick, etc. I was told repeatedly that it was “just” RA, and I knew it was not, since none of the meds were working. Finally, I was referred by my new, female PCP [Primary Care Physician] to a rheumatologist literally next door to her. He took one look at me, asked if I had any Native American in me, and I said yes. My grandmother was ¼ Indian. He had practiced at the Indian School in Lawton OK so he knew lupus when he saw it. The ANA test came back positive. I said, “Thank God. At least we know what it is and we can treat it.” He said my reaction was typical of lupus patients.”
Upon receiving a diagnosis, we all know that it takes a little while to sink in. We begin to worry about how much our lives will change and what this illness will mean for our futures - especially if this is the first time we have ever heard of lupus. For Marilyn, as a writer, this new pain in her hands and intense fatigue could have very well affected her ability to continue and I asked her to offer us little more about what her thoughts were regarding lupus, her writing and her future:
“Some of the older literature and old wives tales had me doomed in a very short time. I was told by my rheumatologist to ignore all that. It was serious, but treatable. My grown children were more concerned than I was, of course. They didn’t have the information that I had. I found a Lupus Support Group in the area and attended meetings regularly. I volunteered to help with the annual seminars, etc. and for a time became the co-facilitator of our local group. I also use the Internet a lot, and lupus support groups online.
I was a writer from the time I could make letters on Big Chief Tablets in kindergarten. As an army brat, raised all over the world in sometimes-isolated military compounds, I learned to entertain myself by writing stories. I always wanted to be a writer, but my “serious” writing was delayed until I quit working in 2000. Retired. Writing. Two sweet words!
I don’t think my lupus ever affected my writing, aside from a few physical problems, such as carpal tunnel syndrome, and wrist splints and a trackball mouse took care of that. I still drew on my imagination as I had in my childhood, for inspiration for my writing. My first book was a supernatural mystery, Sabbath’s Room, that I had had in the back of my mind for years. Next was my autobiography called Once a Brat. Then came my lupus book.”
Her book, Diagnosis Lupus: The Intimate Journal of a Lupus Patient (2005), stemmed from her journal writing as she began transitioning into chronic illness and she shares a great deal of her personal journey. It has been listed as one of the books the Lupus Foundation of America has recommended reading for all lupus patients. Her publisher comments:
“Far from being a litany of complaints, the author’s pages reveal her unexpected spiritual growth and gratitude for life itself, and she hopes she can be of help to others who suffer from this disease or other chronic illnesses.”
I asked her what led her to write about something as personal as illness and what her goals were for the book:
“Many of the books I had read on lupus were written by medical professionals, and bless their hearts, they were so dry and clinical I got nothing out of them. Or they talked down to me, as if I were a child. On the non-medical spectrum, too, I found a couple of books written by lupus patients who dwelt too long on their symptoms, with a “woe-is-me” approach, and one book angered me so much I threw it across the room. The author was a married woman of great financial means, who sobbed about little things, while I was struggling with the same disease, single, and most of the time, unemployed. Give me a break, I thought. That may have been one of the reasons I decided to share my journal. I hesitated to let other people know “the real me” warts and all, and about my self-doubts, anger at God and society, and particularly, the medical profession!
I wanted to share my experiences with others who might be going through the same search, having the same fears, doubts, anxieties and anger that I had written in my journals. Each day, I wrote my feelings in a series of journals, chronicling my progress, or lack of it. The good, the bad, and the ugly. I hesitated to tell others that I was angry with God, with others, and with myself, but I realized I probably wasn’t that unique, after all. So I chose pages that represented all those facets of lupus, and sent them to my publisher.”
I then asked her how the LFA came to know of her story, how she sees the level of awareness now as opposed to when she first wrote her book and what she would recommend to others who are thinking about writing their own stories:
“I noted in one of the Lupus Now editions that the Education Committee was looking for books about lupus to recommend to their readers. They wanted reviewers, so I reviewed one for them, and asked them about my book possibly being included. They asked me to send three copies; they would review it and get back to me. And then I got the endorsement as “Recommended Reading.” I was thrilled. Incidentally, half the royalties are donated to the LFA.”
Regarding awareness,
“No real progress, I think. Really. Any time I mentioned the fact that I have lupus, I heard, “What’s that? I’ve never heard of it.” And I’d tell them, briefly. Their eyes would glaze over and sometimes they’d say, ” But you don’t look sick!” Or, if they have some idea of lupus, they’d reply, ” That’s kind of like arthritis, isn’t it?”
And, it’s the same, some 20 years later. The same responses. That’s not good. So many diseases get so much attention, I feel like I have the Rodney Dangerfield of diseases: “I don’t get no respect.” Because I’m not in a wheelchair, or look thin and gaunt, or have any visible “differences” like a limp, or lack of motor control as in Parkinson’s, people look at me like I don’t have a “real” disease. And, because we’re mostly female, the perception still might be “it’s all in your head.” Public perception needs to change, for sure.
For people who feel a story within themselves, …
“At every book signing, I have someone who sidles up to me and confides, almost in a whisper, “I’ve always wanted to write a book.” I smile and then tell them, “Do it! Tell your own story. We’re all different, and there are no original plots.” They then look like a deer in the headlights, frozen at the thought of actually putting their dream into motion. But a best seller won’t sell if it’s in your desk drawer. Take a chance. You might be surprised.
I found writing to be therapeutic; I didn’t have time to think about what was happening inside my body. If you have a book inside you, let it out. I’ll be happy to help.”
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Marilyn offers her contact information at marilyncmorris@sbcglobal.net and through her blog, www.theladywithlupus.blogspot.com. Her lupus book can be found/purchased using our Powell’s and In Other Words links on our blog on the far right under ”Shopping” . Please check out her other books as well and let’s let her know how much we appreciate her story, her encouragement and her contributions to bring more lupus awareness, one word at a time, to our communities.
