Eighteen years ago today my mother turned 41. She wouldn’t live to see the sun rise the following St. Patrick’s Day or to see me turn 15 a week later. She never helped me get ready for prom, nor asked me how my first real date went, or handed me condoms when I went to college, or saw me hand-fasted or married, she never saw me divorce, she never lived see me achieve my dreams or to see them ripped away by my illnesses. But in the 14 years and 51 weeks she was my living, breathing, fiery, sick, feminist, dream chasing, deeply loving mother she taught me so much about how to live.
In my late teens and early twenties I often wondered if she would be proud of me. I struggled watching friends, or even strangers, with their mothers; the pain ran so deep sometimes I wanted a cigarette and a hard drink to make it fade to tolerable. I cried and pondered and asked aloud, “what the hell am I supposed to do?” having no mother to show the pathway into adulthood. So I struggled, learning and failing and fighting to find my own path, my own way to be a woman from what guidance my mother had left me and what I wanted for my future.
“Family is the most important thing in life” she wrote in a journal she kept when we were small, a love letter to and about her children in case anything ever happened to her. It is a lesson I have sought to follow, though some would disagree. When she was writing this my brother and I were small, our health was difficult, and her family struggled. She would make my brother and I hug after a fight and “say ‘I love you’ because one day you will mean it.” Mom was right, of course; my brother and I love each other deeply, in a way I could never find words for but those who have seen us together or my words to him, can feel it is deep, even unto the dark places in each others souls. And despite my issues with my father & step-mother, I love my father too, even if it mingles deeply with disappointment and pain, I would be there for him in any way I could. And my beautiful younger sister & brother I love as if they were blood, though I was only there to grow up beside them and desperately try to avoid having to “be the example for your sister and brothers.”
“If you have nothing nice to say then say nothing at all,” taught me to never gossip. It is a trait I find abhorrent, not only because I do no do it but because the consequences of not doing so are ridiculous and often painful. Other people are not as kind with their words.
“Be thankful” taught me how to handle illness, the cruelty of others, and gave me the strength to hold on hard to life’s good things even in times of deep despair. I wake grateful for the ability to breathe, to feel most of my body, and to have another day to live.
“Leave things better then you found them” was engrained in her, and me, through Girl Scouts but she tried to apply it to all things in life, not just campsites. Friends, communities, the world – she sought in small, real ways to make the world better then she found it and looking back she did much of that as a parent. My singular goal in life is to make the world a better place then I found it – a goal I am told I achieve.
“Be prepared” was also deeply drilled into me. “You never know which question might be on the test” is a deeper truth then most people realize… the test is how we handle life. I don’t have all the answers but I have about a dozen back up plans for everything. She taught me “nothing is guaranteed” and that to succeed in life we must simply accept that, find peace with it, and be as ready for it as we can be.
She nearly forced independence on us, not simply encouraged it. “Go outside and play,” set with clear boundaries, was a common refrain. When her pain would flare – migraines, lupus, issues from undiagnosed Ehlers-Danlos – she would close her door, sometimes lock it, and we were told that “unless someone is bleeding, dying or the house is on fire, don’t bother me.” I remember being broken hearted by plans changed due to her illness and I wish so deeply I could tell her now that I know it hurt her so much more then it did us.
She instilled in us, by example as much as teaching, a deep love of learning and independent growth. She was a chemist, a childbirth educator, a pregnancy prevention & sex educator, an EMT, a nurse, an aspiring midwife. I remember clear as day her teaching me basic calculus on the front porch, with a yellow legal pad, when I was 8 and bored with math in school. I could have taught Lamaze classes by age 6. I was home schooled due to my allergies during the years she was in nursing school, I learned so much during those years – more then A&P or pharmaceutical knowledge, but also how to be a full person, teaching, learning, living – all at once despite her underlying health issues. They are lessons that have not only kept me alive but taught me how to fight for my space as an individual despite life’s demands.
Today, more then 17 years after her death, her choices still teach me things – some I agree with and some I don’t – but useful lessons all the same. I give as deeply, or more so, then I get; I work to find peace in my soul in hard times; I demand a lot – not only of others – but of myself; I have learned how to ask for, and give, help. I am a good, though not perfect, woman.
I look at myself in the mirror and know she would be proud. I am proud. I decided 12 years ago I wanted to be someone who enabled others to be happy by cultivating a supportive community. The ways I have done this have changed over the years, but I know I have helped, loved, and supported many others to know they are not alone.
In March I was faced with the harsh reality that without answers, progress, anything really, I would likely die sooner then anyone would have liked. I don’t know if the autoimmune hepatitis is the final answer to the problem of what’s trying to kill me this time? But I do know I approached the chance of death with calmness and preparation, peaceful in the knowledge that on the balance I have left the world a better place then I found it but unwilling to just give up.
Now, moving into a winter prepared for the possibilities, I am ready for not only the pain and struggle winter always brings, but also to start some new things. I am still fighting for SSI, but I am also doing occasional ghostwriting on medical topics, and in the new year will start collaborating on a site that will openly discuss sexuality and disability, a topic that is dear to my heart because disability doesn’t take away your humanness, it just changes how you handle it. I am coming out of the past few years of seeming fallowness in my life preparing to pass on the lessons my mother taught, in a way that is empowering for others and feels right for me.
Each year, on her birthday I look back at what I know of my mother’s life, which also makes me reflect on mine, as I am the filter and I am her legacy. I am honored others trust me with their questions about health, faith, sexuality, life choices and that I have the tools to help others – even when I’m not trying. A friend, who I love and respect, that speaks and literally changes people’s lives in a conversation or a speech, tells me that I make him want to be a better person – an honor I bear with humbleness. A man, who is amazing and wonderful loves me because I am “awesome,” a gift I return because I know how to love deeply and recognize a good person and true love.
I know I would make her proud. I make myself proud. I am also proud of her, in ways that possibly no one but my brother could understand, but I tried to explain in these words. We are the products of her choices, and our own choices, and the balance is for the good.
I still celebrate her life, this day and all the others. She helped me grow so much into the woman that I am. I am excited to move into this new project that coincides with the work she did when I was a child and I know I will draw deeply on her lessons.
I could be no prouder than to be my mother’s daughter, to continue her work, to be a part of her legacy.
Tonight I shall raise a glass in her honor and be proud of and for her, for my mother was a beautiful woman who loved deeply, was fiercely loyal, and amazingly strong.
Momma, I still miss you every day but I wouldn’t trade a day of those 14 years and 51 weeks; you made me so much of the woman I am today. Thank you. I love you.