“Growing up in the Central Valley is something I’ve always been proud of; summers were filled with fresh picked fruit and countless hours in the pool. Winters were filled with snowy mountain drives, cranberry wreaths and pomegranates galore. I had a gaggle of friends who were over every weekend; playing doctor, roller skating and being outside until the street lights came on. I had a perfect childhood. I didn’t really notice I didn’t have the stamina that my friends did, being unable to participate in sports, or anything physically demanding. Even ballet became an issue when I was en pointe, as minor cuts would turn into severe staph infections.
I can’t give you an exact date that I can pinpoint when I ‘became sick’ it just kind of started and has gotten worse. On the other hand, my mother can give an exact moment when she knew. She can tell you what I was wearing, what the weather was like and how she felt. It took twenty years to remember this exact moment, but it replays vividly in her mind. My whole world didn’t really change until my senior year of high school when I noticed my vision was becoming something of an issue.
What started as a simple eye exam, turned into two MRI’s, an EEG and numerous neurology visits. I had a diagnosis but still didn’t feel ‘normal.’ I started college, started dating, and felt like things were starting to fall into place. Oh boy was I wrong. I think in those moments, God looked at me and said, ‘hold my beer and watch this.’ That’s the only way I can possibly process the events of the last ten years, particularly the last five.
A couple weeks into my new relationship, I was diagnosed with non-hpv cervical cancer for the third time and made the decision to undergo a total hysterectomy at the ripe age of twenty-four. Deep down I knew it was my only choice at finally slaying the beast I had fought on and off for five years. January 21st, 2014 became my second birthday; it was and has been a day of celebration every year since. Of course, I faced the disappointment of never carrying a child but knew my body wouldn’t ever be able to, It wasn’t in the cards for me and I was at peace with that. As the years progressed, I became ill in ways my parents couldn’t comprehend, which isn’t usual as my dad is a Pediatrician and my mom has spent her entire life practicing holistic medicine.
Common colds turned into three to four-month illnesses, bruises would stick around for months, not weeks or days, and we all started to notice I was sleeping, a lot. Blood tests, body scans and follow ups became the norm. In the midst of being a full-time patient, I got married, graduated with my second master’s degree and stood next to my husband while he fought for his life. Nothing humbles you more than dealing with your own illness and then watching your spouse of less than thirty days wind up in the hospital with Deep Vein Thrombosis and Multiple Pulmonary Embolis. I’m glad to report after 16 months of blood thinners, weekly lab tests and countless scans he is now blood clot free!
Throughout the last five years I have found myself in ways I didn’t know possible. I’ve become content knowing I won’t have children. Although adoption is always an option, I just couldn’t imagine ever bringing a child into an environment where they will eventually have to mourn their mother, again. I answer the age-old question of ‘when are you going to have babies?’ With a smile on my face and a reply of ‘Oh no babies, I have dogs.’ I see the answer disappoints the person, but the truth is so much more depressing. Answering with, ‘Oh, I’ve battled cancer and had a hysterectomy’ or ‘well I’m living with a terminal illness and don’t find bringing a child into my world fair for them’ is not something they would want to hear, so I keep it short. Truth is, of course it bothers me. As much as I’ve accepted my life and illnesses, it saddens me to know I won’t ever have that love.
With sadness and loneliness, I have created a beautiful hobby/business. Besides being a full-time patient, I also work 40 hours a week dealing with high risk patients who need an advocate. I have patients who absolutely adore me and rely on me to take care of their medical needs. I make miracles happen for patients, understanding first hand that advocacy for the terminally ill is such an underappreciated job. I fight for those who cannot fight for themselves. On top of my full-time job, I started a floral business that has allowed me to find peace in everyday life. It’s allowed me to cover medical expenses that would otherwise go unpaid and end up in collections. Because being sick and dying costs A LOT OF MONEY.
I’ve lost friends, given up on certain dreams and have come to terms with it all, but one thing will always pain me. What will happen with my parents and husband after I’m gone? Will they be okay? Will they know I love them? Dying doesn’t scare me anymore, because with death comes freedom. Free of medications, free of pain, and free of everything that consumes me medically. I haven’t been free, ever. The pain I deal with on a daily basis is excruciating, making me unhappy at times. The medications I take make me sick, causing terrible nausea that requires a scop patch and zofran, if needed. Falls, bumps and cuts are now life threatening since finding out I’m a hemophiliac. I recently fell off of a five-foot ledge and wound up with a fractured foot, a large hematoma on my shin and a bruised ischium.
Each day brings a new challenge with this sickly body of mine. My body hurts in ways it didn’t before and at times I feel myself slipping away. I try to explain this to my parents, my husband and my doctors but how can I explain something like death? This isn’t how life is supposed to go. This isn’t what I pictured my life to be. I wouldn’t choose this. God has other plans for me, and I do my best at everything that’s thrown my way. Music helps me, as do tattoos. Silly, I know. I have a touch of music ADD that requires me to change the song after thirty seconds, which drives my husband insane. Besides my morning alarm being Hustlin’ by Rick Ross, Andra Day is on repeat for my drive to work. Her words hitting me right in the feels, so much so that I have them tattooed on my arm as a reminder that ‘I’ll rise up, in spite of the ache.’ And that’s what I do and will continue to do. I will rise.”
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