Grin and bear it
Sometimes I feel undead.
I often liken myself to a vampire. It’s one of the ways that I make light of my health situation. Living with an ultra-rare blood disease that requires me to get frequent blood transfusions is no joke, but it helps to find humor in the challenges that I face.
Today, I am extremely anemic, my head is pounding, and when I look in the mirror, I see someone who is gray in color. My hair lacks luster and my eyes are white, drained of all vascularity. My hemoglobin is 6.9 and it is time for me to get another blood transfusion, but the risks of being transfusion dependent have now caught up with me and the transfused blood is starting to damage my organs. This new development is frightening. I fear the worst and that there will be no end to this suffering.
Every simple task feels daunting — but I am a mom, and my job doesn’t stop.
I am short of breath as I help my three-year-old get dressed in the morning. I feel lightheaded when I pick her up to put her in her car seat. I dread getting down on the ground to clean up the trail of crumbs my she’s left behind, because I know how hard it will be to get myself back up again. I even find doing the dishes challenging because I can barely lift a heavy pan these days. Just keep breathing, I tell myself. You can do this. That is my constant mantra.
I try not to think too much about my limitations and just breathe through it all with grace. I remind myself how lucky I am. I have an amazing child and family. I’m living my best life with my soul mate. We live in beautiful Berkeley, California surrounded by natural beauty, culture, diversity, and the best community of friends a person could ask for. My life is rewarding and special and I have a lot to be grateful for.
But those things don’t negate the fact that I carry around this intense baggage that has followed me for the past 15 years: my chronic illness. Things have been particularly bad over the past year, my disease manifesting in new and more dangerous ways. I am constantly navigating my complex medical lifestyle: doctor appointments, blood transfusions, specialty pharmacy coordination, insurance management, chemo infusion treatments, blood work, clinical trials, not to mention the symptoms of my illness … the list is endless.
Just keep breathing. You can do this.
Somehow, no matter how exhausted I am or how crappy I feel, I muster the ability to take care of my family with a smile on my face. They are usually none-the-wiser — they don’t always need to know when I don’t feel well. They need me to show them that I am strong and that no matter what I am going through, that their love and happiness is everything to me.
The truth is they give me strength. My daughter gives me life: her laughter and energy, her sweet sense of compassion, her affection, her need for me and only me to do all the things that feel hard these days like put her to bed, give her a bath or carry her. She makes me stronger and helps me forget my own discomfort. I use my mantra so that I can push through the most challenging moments and endure.
Something I have learned since I became a mom is that I really have an endless amount of endurance and determination, both as a woman and as a mother. I can push through anything, especially for my family. I have to be strong and stoic for my husband. I have to be patient and silly and capable for my kid. I should not have to do those things all the time, but I know that that is what they need, so I will do it.
Like so many other moms that I know, we push through our own discomfort to ensure our families are thriving, happy, healthy, fed and loved. Woman are built to be strong and endure. It must be coded in our genetics to have grit and determination, or maybe it is borne out of the centuries of oppression we have faced and continue to face. I see it in the women all around me: women who grin and bear it through physical pain, emotional trauma, childbirth, sleep deprivation, sickness, care-taking of children with special needs, anxiety/depression, loss — major life obstacles. Still, we hold it together. We are the lynchpins of our families, finding balance between having rewarding careers while managing familial expectations.
We don’t bat an eye or complain, we just grin and bear it and find new depths to our endurance with each new challenge that comes our way. We do it all for the love of our families.
