To my friends here in the States, and to my American friends residing around the world, I hope your Memorial Day weekend was a beautiful, thoughtful time. I spent most of yesterday feeling a bit weepy, thinking about those who have given so much so that I can live the way I choose. It is something I will never take lightly.
I also spent most of the weekend down for the count with a strange stomach bug and a general sense of malaise, while my husband enjoyed his favorite war movies and some precious time away from his job. He works so hard to support our family and to ensure that I can stay home to rest, feel better and do the things I enjoy. At least the simple things that are not limited by my health.
I truly am grateful for his willingness to take on that responsibility, and all on his own. The truth is I have been too ill to work for a year and a half, and the outlook isn’t a bright one. I worry a lot about the ramifications of that; how it holds us back, prevents us from embracing life, and how it impacts every aspect of our future. He doesn’t really understand the depth of my feelings. In his view, the situation is what it is. He doesn’t see the point in losing sleep over it. And to him, what he does is simply what you do for those you love, and it is done without question. Even if I was healthy and vibrant, like I used to be, if staying home makes me happy it is exactly where he would want me to be.
All of this brings me to something that has been weighing heavily on my heart. I never thought things would be this way. I planned diligently for one life, and in the end got something very different. I know most people can say this. Things rarely turn out exactly as planned. There are people in this world suffering in unspeakable ways, enduring much worse than I could ever imagine. But this still hurts. It still drives me crazy. And lately I just don’t know what I’m going to do and how I am going to cope.
Last week started off rocky, with a late morning doctor’s appointment. To be clear, this meeting wasn’t with my regular doctor, an amazing lady who I love and trust completely. Instead I met with one of the many specialists I have seen over the past three years, to treat the various issues lupus has stirred up inside me. I have seen this woman three times before, to address my hormone levels, thyroid health, and the severe swelling that sometimes happens in my body. For some reason I always feel empowered immediately prior to these meetings. I see opportunities to accomplish something and solve the puzzle. I gather my journals, eager to share the details of what I have been feeling. My hopes are high, always expecting an improvement in my test results. I expect effort on the part of whatever doctor I am seeing; I want them to take responsibility, and I want them to care. But the slightest indication they do or feel otherwise can suck the empowerment right out of me and leave me feeling unsettled.
And that is what happened here. My prior visits with her were decent ones. She seemed motivated, caring and enthusiastic. Complete opposite this time around. She was rushed and impatient the second she walked in the door. And it was Monday. At 10:30 AM. Not a good sign for the rest of her day, let alone the rest of her week. I handed her my journal entries so she could see how I was functioning and what I was experiencing from day to day. She was disinterested and wouldn’t read them. Instead she barely gave me eye contact, rattling off my latest lab results and sighing loudly here and there as she read all her mumbo jumbo on the computer screen.
All of my lab results were awry. My ANA results were dangerously high. Thyroid hormones all over the place, and my three nodules are slightly bigger, nodules she insists we continue to “watch” and not take out unless they continue to grow. Lots of protein and blood in my urine. And fluid, lots of fluid, in my chest cavity and in my legs, making it difficult for me to breathe and move comfortably.
She shook her head, still refusing to look at me. I grew angry as I looked down at my hands, still holding my journal. “Are you taking your meds?” she asked, incredulously.
“Of course,” I answered, growing angrier, my sarcastic tone surpassing hers. But she went on to question my diet, sleep and exercise, and questioned my medication taking again. This coming from a doctor who should know how serious this is, who should know this goes way beyond what I eat, how I sleep and how much I move; who should know I am motivated to be well. I have lived with lupus, chronic pain and fatigue for a very long time. This is my life, and I take it very seriously. For those reasons and for many others, I am not one to falter easily. At that moment I took a deep breath, held up my hand and interrupted her because she just wouldn’t shut up.
“Please stop,” I said. “And please stop making this about something I am doing wrong. I am doing what I am supposed to do. This has less to do with my failures and everything to do with yours.”
She looked at me like I grew another head. Apparently she’s not accustomed to paying customers who actually stand up for themselves. It is worth noting this woman’s practice bills my insurance company over $600 for twenty minutes of her time, with most of it being my responsibility. I happen to be a customer who pays her very well, and for that reason I expect more from her.
I left. And not long after that I was on the phone with my regular doctor, mostly because I needed her to talk me off the ledge after that horrid experience, and because I needed guidance from her on where I go from here. We talked at length about the next round of tests I needed, how we need to get this fluid out of my body and the next brave step in getting my immune system under control. It really can’t go on like this much longer. Things are getting dangerous. So we went there, talking about the merits of more aggressive treatment, such as chemotherapy. I’m not sure where this is going to go. It mostly depends on if my insurance company will cover it or at the very least meet me halfway. We shall see.
I spent the following days at home, sometimes depressed, but mostly spent in contemplation. Anthony Douglas Williams once said “If you want to see God, just open your eyes.” This year so far has been painful, and the fear has had me longing for that place of spirit and gratitude I used to know so intimately. I want it back. So I began by stepping out into the sunshine and really paying attention to what is right in front of me.
I have a young King Sago palm in my backyard. The other morning I noticed new branches emerging from the center; dozens of leaves growing up and outward, on their tips hundreds of soft, tiny spirals reaching out so elegantly in their curious dance of life. This was the first time I had stopped to actually notice, and it made me think. I have always been drawn to spirals, their unique beauty, but most of all their greater meaning.
The deliberation of nature, always expanding.
The soul reaching toward outer consciousness.
Connection with the Divine.
Illness creates a special kind of loneliness, a different kind of despair. But as long as I can bear witness to life’s meaning and miracles in the simple, unexpected and unassuming, I am going to be alright.
Because the message and simplicity of life has a way of healing us if we let it.
Today’s pain fuels tomorrow’s strength.
And with that sentiment held firmly within my heart, I move forward with my new mantra.
Carry on, warrior.
Have an amazing, beautiful week.
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