My Marriage Was a 'Lupus Machine': It Broke Down, but It Empowered Me

Sinclair Ceasar III’s heartfelt question about what inspires us to take charge of our health appeared in my Instagram feed as soon as I looked at my phone while eating breakfast at a local café, and it made me examine my heart and my life.

It occurred to me that I haven’t written for The Mighty for quite a long time. It’s not because my lupus went into remission for about two years but instead because I have been avoiding talking about my health due to the very question Sinclair put out into the world.

I am not criticizing his question. On the contrary, it’s an excellent question I would have answered in an entirely different way a few years ago. I would have given thanks for those who have done so much to sustain and lift me up during the darkest times I faced while battling my lupus.

One person in particular I would have given abundant praise and gratitude to is the person who gave so much to me during the years that dragged on and on. For years, we held on tightly, prayed and prayed, and somehow persevered through. He was there for me in the years when my body was falling apart. He took control of all aspects of our life together: work, housekeeping, groceries, organizing doctors’ appointments and medication refills, and paying medical bills. That person is my husband. Our marriage was a lupus machine, but he was there for me no matter what.

I lavished praise on my husband. I loved him deeply, and I still do love him. I appreciated his many sacrifices. He was my rock and my fortress.

The problem with our marriage being a “lupus machine” is that machines break down when they are not cared for properly. Engines need proper maintenance. They need mechanics to come in and check the oil and the spark plugs. They need people to make sure the individual parts are still in good shape and to keep the engine running smoothly.

We didn’t have an adequate mechanic — not for lack of trying. There was none to be had. We were on our own.

There is a reason why divorce rates in the disability community are so high. Frankly, there are not nearly enough resources for caregivers, which is a major societal flaw. Therapists, counselors, churches, hospitals, insurance companies, and the people around us may not do enough to support those who support us. In fact, some even add on extra barriers.

Who empowers me, Sinclair? Well, without a doubt, my husband did back then. Completely. Entirely.

Now, I am back to active lupus, blood disorders, and fibromyalgia. So who empowers me now? I do. God does. And my husband. Yes, that same husband.

Now that I am battling these diseases on my own, I have learned a few new things. I’ve learned that God doesn’t dole out troubles evenly like cards in a poker game. Some of us have more struggles than others. I know that the only person truly in this fight is me, my body, my immune system, and my God. I believe that no matter the outcome, I am going to be just fine. I also know I can choose love each day — no matter what happens.

If you haven’t gleaned it already, my husband and I are not together anymore. Just as I was entering remission and feeling like the world was my oyster again, he walked out the door. I was crushed. I was ground down to such a fine powder that not even lupus was able to grind me down that fine. Yet, my past husband still empowers me. How?

He taught me I am much stronger than either he or I believed me to be. He taught me that I can be my own best advocate — when he left, I found my long-lost voice. He reminded me that I can continue to love him for what he did. He cared, he did battle alongside me, and he saved my life more than once. He taught me that forgiveness is for me. I have forgiven, I still love, and I stand all the stronger because of it. I also now truly understand that love is a choice and an action.

This entire process is my journey. It belongs to me and my God — but no one else, no matter how close we are. It’s mine to claim and nurture, and it’s a journey I am proud to take. Whoever wants to take a few steps with me is welcome so long as they don’t deliberately do things to trip me up.

Empowerment can come from many sources and can arrive in the most unexpected ways. The best power comes from deep within by knowing who we are and what we are worth. Thank you, Sinclair Ceasar III, for asking such a profound question. And thank you to my husband, wherever he is.