In January 2002, my mother learned her transplanted kidney had begun to fail. She began dialysis. We spoke on the phone each night, and I visited her as often as I could. The mother I had known, the jubilant mother, grew depressed and fearful.
I offered to undergo a test that would determine whether one of my kidneys could be transplanted into her body. I was 20-years-old. She begged me not to have this test. She didn’t want to do anything that could compromise my chances of becoming a mother.
That is how much motherhood meant to her. She was willing to die in order to prevent me from making this decision. And she had hope. She hoped someone else in her family would come forward.
To my knowledge, no one did.
I write those words with tremendous anxiety of how they will be read: No one did.
My mother’s story is complicated. Perhaps someone came forward and she never told me?
Even so, she could not survive another transplant. Her death was inevitable, and within months of undergoing dialysis my mother began to accept this reality. For the first time in her life, she rejected the false narratives of cure and recovery so often projected on the seriously ill.
But I still harbored delusions. I called delusion hope. I pleaded with members of her family to understand the seriousness of her situation. I wasn’t ready to give up, to let her go. I believed she could recover, as she had recovered so many other times before. Others did not believe my mother was actually sick.
A relative told me my mother was exaggerating.
She said, “Your mother is a drama queen.”
She said, “Your mother likes attention.”
My mother was not a drama queen. She lived with a debilitating chronic autoimmune disease from adolescence through middle age. She was beautiful. She was sick. Because she was beautiful and sick and female, she fell prey to cultural biases that fail to acknowledge serious illness in young women. When people looked at her they saw pretty. They saw young. They saw stylish.
As my mother’s health deteriorated, I ignored her pleas. I had the test done. It was a simple blood draw – I barely remember the needle prick. In the blur of her multiple hospitalizations, and my struggle to perform normalcy as our lives collapsed, the test was not a big deal. Just one more errand.
My results came back after she died: I was not a good match. My kidney would not have saved her.
I was off the hook. I’d tried. She’d known I’d had the test. She’d known I was willing to give her a vital organ, even if that choice compromised my ability to become a mother. She knew I believed her. I had not abandoned her.
I’ve been remembering this time in our lives recently because of my own experiences of not being believed about illness in the past few years. I have also felt abandoned by friends and family who do not communicate with me in meaningful ways about Lyme disease, for which I am still being treated — and this treatment takes a physical and emotional toll. To many, it is as if I am not sick at all, as if my illness does not exist because I present as able-bodied.
Is my illness easy to erase because I am young and female? Or because I am capable of holding down a job and publishing writing, so I cannot have a serious illness at the same time? Or is it because I typically do not perform a sick identity on social media?
Or maybe, I’ve just needed too much, and my needs are exhausting. Autoimmune disease. A miscarriage. A broken foot. And then, out of nowhere, Lyme disease?
Maybe I am now perceived as the attention seeking, drama queen.
But I am not an attention seeking drama queen. Attention gives me anxiety. And drama? Who has time for that?
Fatigue from Lyme disease and my current treatment plan means a lot is changing in my life. I cannot engage in relationships in ways that are expected of young women. No late nights. No long drives. I have to say, “No” a lot. Perhaps my “No” is heard as disinterest and not as self protection. Perhaps people think I don’t like them.
My mother gave me tools I would need to navigate chronic illness in my own young life. She taught me I could say the word ill and the word did not have to be a negative, a reduction, something to resist or erase. Even now, she is present. She is parenting me when I need her the most, showing me the way.
Long ago, she told me illness would distill my relationships.
“You will know who your friends are,” she said. And she was right. I am figuring out who I can depend on and who I should let go. I am asking myself new questions.
Who will I become? How will illness change me?
That’s the keyword. Change. Lyme disease has remapped my body. I have no delusions of cure, of going back to who I was before. Healing is a complicated idea, not a portal to our past selves.
As Cheryl Strayed has written, “Healing is a small and ordinary and very burnt thing. And it’s one thing and one thing only: it’s doing what you have to do.”
What I have to do now is be honest. Be real. Set boundaries and hold tight to them.
Rearrange a life where I’d once felt comfortable. Advocate for what I need. And then, let go of stories, people, goals, relationships, identities, and expectations that no longer support the person I am becoming because I am ill.
This is not about needing attention or being a drama queen or even pessimism. It’s about surviving and reclaiming and persisting.