Lupus Gifts

The best gift I ever received is one that I never wanted and would still return if given the option. Confused? Yeah, me too.

November 26—my 42^nd birthday—marks the 20 anniversary of my diagnosis with Systemic Lupus Erythematosus. Lupus has been a nasty, conniving cruel present that taught me things that I couldn’t have learned otherwise.

Let me be clear: I hate this disease. I hate the joint pain, the hair loss, the skin rashes, the kidney complications, the central nervous system attacks and the overwhelming fatigue that Lupus brings. I hate that so many people have died from this disease and so many more have had to live with it.

But as cruel a teacher as Lupus has been, it has been a masterful teacher. There have been little lessons. Before Lupus, I would freak out if I had to get a shot. Now I hardly notice them. But there have been much bigger lessons as well.

I remember being handed a box of tissues by my then-doctor as he told me that Lupus was attacking my kidneys. I felt patronized. “At least wait for me to cry,” I thought. He then told me that I “had” to begin to take massive doses of prednisone that, in his words, would have “minor side effects.” Those minor side effects ended up with me gaining 30 pounds in three weeks, causing my skin to create ridge marks like a stretched balloon. Maybe that was “minor” for my 50-year-old-plus doctor but it was pretty major for my then-25-year-old self. But I learned a lot from the experience. I learned that I needed to be in charge of every aspect of my disease. I learned that doctors hold the knowledge, but I held the answers. Only I knew what was right for me.

Then came my first kidney biopsy. I had been so afraid of the procedure. I asked everyone I knew to pray for me. As I was being wheeled down the hall towards the procedure room, I experienced for the first time in my life a peace that passes all understanding. I knew with all my heart that God had answered those prayers. And boy was I going to need that peace. I chose not to be given “something to relax”—the standard euphemism for drugs—before the procedure. So I was wide awake to see a nephrology intern perform what was clearly his first kidney biopsy.

The nephrologist-in-training inserted the long needle into my kidney, pushed the lever to take the sample (a process akin to pushing a straw through an apple), and then placed the sample under the microscope. Nope, didn’t get a clean sample. Again he tried. Again, nope. And again. Nope. By now he was becoming increasingly rattled. He started to apologize to me. I told him “It’s okay. We’re going to get it. Don’t worry about me; I’m fine. Let’s just keep going.” It was at that moment that I learned that I had a gift to give under even the most trying circumstances—the gift of encouragement. I felt empowered in a situation that could have made me feel defeated. A Lupus gift.

If I ever wondered if I was strong, Lupus has answered that for me. I get up many mornings in pain and nearly every morning fatigued. I take medication as I have every day for two decades. I catch every cold known to man because of my messed up immune system. I have coughed so hard for so long that I actually cracked a rib. I’ve been in more hospitals than I can count—many of whom I’m still paying—and gone through five of the above-described kidney biopsies. But I go to work at a career I love, I hug my nieces and nephews, I play with my sweet dog and I live my life. And I’m still here!

People often say to me that they don’t know how I do it. I generally respond, “I didn’t know I had a choice.” The truth is that, as bad as Lupus can be, there are so many people who have it so much worse. And there are people who go through trials alone. I am surrounded by an amazing family who loves me and encourages me. The truth is that Lupus is harder on my parents than it is on me. Of all the reasons I hate this disease, the pain that it has caused my parents tops the list.

Last December, we—my parents and I—faced a new Lupus challenge. In the middle of a flare that was attacking my joints, I suffered a Lupus-related stroke. I will never forget the look on my mother’s face as the doctor told us the results of my MRI. For all the cruel things Lupus has done, I think that was the deepest cut of all.

But even in that terrifying moment of hearing the word “stroke,” Lupus still didn’t have the upper hand. You see, I had been fighting this battle too long to fall apart at the mention of “stroke.” Is that all you got, Lupus? I am not going to be defeated by this or anything else you throw at me.

And once again, thanks to the support of my family, the skill of my doctors and, most of all, the grace of God, Lupus didn’t win. I have come through the stroke without any permanent damage. My speech, motor skills and thinking are as sharp as they ever were.

I don’t know what is coming next from this “gift that keeps on giving.” But I do know this: Lupus lessons have helped to shape the person I am today.

Growing up, I was the kid for whom everything came easily. As an adult, I’ve learned the joy of working hard for small victories.

As a middle class white girl from the suburbs, I didn’t have a real understanding of suffering. As a person living with Lupus, I now do.

Before Lupus, God’s personal love for me was abstract. Now, it is as real and tangible as the rash-covered nose on my face.

A few years ago, I was riding up in a hospital elevator with a young woman and her mother. Just looking at her I knew she had Lupus. The tell-tale prednisone moon face seemed out of place on her skinny body. I asked her if she was a patient of my doctor. She looked surprised but said that she was. I could tell from her demeanor that she was angry. I said to her, “I’ve been living with Lupus for 17 years. I’m here for my fifth kidney biopsy. There isn’t much about Lupus that I haven’t experienced. But I’m still kicking. If there is anything you want to ask me or just talk about, feel free to come on by my room.” She never came by. I felt so sorry for her. Not because she has Lupus but because she didn’t seem to have hope.

Everyone on earth has their own Lupus—that thing that challenges us and hands us the option to become pitiful or purposeful. That gives us the choice to see the joys in life or obsess about the trials. That thing that shakes us from our middle-of-the-road life and says “choose a side.” I choose LIFE in all caps. I choose hope. I choose joy.

I choose gratitude for the worst gift I ever received.