While my disease is doing better each day and I am feeling better with every treatment, there are some things that will never go away. I will never be “cured” in the traditional sense. I’ve tried so many things and so many doctors, and have been poked and prodded. Second opinions? Yeah, I’ve got 20.
After denial came anger …
… because being a single mom wasn’t hard enough? Having two teenage boys that are like emotional tornadoes wasn’t hard enough? Having a career and moving to the mountains wasn’t hard enough? The fact that those were all “choices” I’ve made, and lupus wasn’t? Yeah, that realization really pissed me off. I didn’t want to be known as the lupus girl.
I own the mistakes I’ve made. In fact, I don’t just own them, I reference them in times of despair to remind myself of how far I’ve come, and yet still have to go. I’ve managed to turn those moments into the best times of my life. Every one of those choices, mentioned above, that made my life hard made me cry and laugh sometimes in the same breath, made me who I am today. Strong, independent, intelligent, seeking new adventures and doing the things people said couldn’t be done!
But lupus didn’t make me feel any of those things.
It made me feel weak. Needy. Incapable of taking care of myself and poorly educated on the needs of my own body … my own mind … and my own heart.
I was annoyed with myself really, for the one thing I didn’t have any control over. I refused to ask for help or admit that I needed help. I didn’t want to be “that lupus girl.”
Finally, last week I had the meltdown that had been building up for years — building up since that day I was diagnosed. I realized that I did, in fact, need help, that I couldn’t do this, couldn’t be all that I am and aspire to be, on my own. I didn’t know the whats or the whos, I just knew it was finally OK to say it out loud. I have lupus. And dammit, if I couldn’t change it, I would own it.
Now I am not a religious person, but I do believe in the power of suggestion, of positive and negative energy, and that we all have a path we are on in this life and we learn through our own suffering and that of those around us. We become humbled. We seek and, in return, give love and comfort to those who ask for it.
I looked up at the stars, then I closed my eyes to meditate and asked for strength
Then I got on my community SLV Buy Nothing Facebook page and I posted: “In search of: a wheelchair.” To say I was overwhelmed would be an understatement. Speechless doesn’t even do it justice. Offers of wheelchairs, places to go for used ones, lupus support groups, offers to pay the co-pay by complete strangers! It turned out someone I already knew had one in her garage, of which I am graciously and humbly accepting. But I didn’t know because I never even asked.
The next weekend the boys and I went to San Francisco and I was invited to speak to budding songwriters. We went to dinner, and I went outside to get some fresh air. I was greeted by sounds of a saxophone player and it took me back to a time, October 2007, I believe, when I had been standing in the same spot, listening to a saxophone player.
On this corner
So I asked him “How long have you been here, on this corner?” And he said, “Well, it’s been about 20 years. I play here here every night but Wednesdays. Gotta let the younger guys have a turn.” “I was here almost 10 years ago, and you played Miles Davis for me and I gave you a $50 bill,” I said. To which he replied, “And then we sat down right there and shared a smoke. I never forget a 50.”
I never laughed so hard. He asked how my boys were, and he commented on my cane. Then, and I don’t know why, but we hugged like old friends. We talked for another 20 minutes and when I turned to leave, he grabbed my head, kissed the top and began to pray. He asked that the boys and I be given strength. Which is when, of course, I completely lost it. I began to sob, almost hysterically. But he held me tighter, and prayed harder. And I accepted it. Not because my faith was the same as his, very far from it in fact, but because our spirituality was.
We are all human …
We all have to ask for help. And if we are any good at being human, we will all give someone help at some point, too.
I don’t know who I thought “that girl” was, but I know who she is now. She’s a lupus girl. And she’s OK with that. You see, finally, after anger came acceptance. Acceptance that while, yes, I do have this disease, I am not alone in this fight. Having lupus has made me realize that the person I truly aim to be is not one that is jaded and made hard by something completely out of my control. It is to accept that maybe “out of control” is OK. Maybe being someone who treasures receiving love as much as I love giving it, is even better. Being a lupus girl, just like being a mother, will never be easy.
And maybe that’s what I really have to be thankful for.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.