Representative Mo Brooks of Alabama, you’re essentially voting me off the island and dumping me into a bay of Great White sharks, where I will suffer and die in a sad and bloody fashion. Without medicine and treatment for a pre-existing condition called breast cancer, which I was “surprise!” diagnosed with at age thirty-nine, that’s what you’re doing. I won’t be alone as I gasp for air, since so many other folks with common health problems will be isolated, ignored and left out: from heart issues, to allergies, asthma, diabetes, other forms of cancer, as well as birth defects and strokes, we will not be able to pay our way to survival in America under your watch. When you allow these “pre-existing conditions” to be penalized, you’re making it become far too expensive for this lady.
I’ve had seven surgeries, 22 rounds of chemo, 8 infections and 69 blood draws. I wish my time in clinics, hospitals, and pharmacies did not have to be a part of my life, but realize there are so many fellow patients. We come in many colors, shapes, ages (including infants and children), sizes, and personalities and may share the same goal: to feel better.
By repealing the affordable healthcare act (ACA) and bringing in a medical system that you think favors “good” people over an often sick 43-year old like me, your vote essentially dictates how long I will live, and how I will live. Even if I will live.
Since you have the vote, power and TV time, I am listening to you. But I don’t like what you’re saying and doing, and am offering a perspective that may persuade you to consider other ideas. As well as people that do not look or talk like you, but deserve help and care just the same.
When you said on CNN yesterday that people who lead good lives don’t have to worry about getting and dealing with pre-existing conditions, you’re basically telling the world — and patients like me — that I got cancer because I must be bad. Who are you to judge what is good or bad? There is no morality pledge to being American. I’ve eaten some juicy cheeseburgers and kissed a lot of folks, but I continually work on myself to try and act as kind and friendly as I can to every being I encounter. If you want to paint folks as bad versus good, I’m not sure what other insights and data I can offer to affirm that I deserve to be able to stay in the city I was born in without plotting for a too-grim economic and health future that could happen tomorrow, next week or soon.
Your actions and words are a message that my life is not good and has not been good or worthy of help and consideration. It feels like you are putting the fault on me for getting a breast cancer diagnosis that happened to be the same day as “back to school night” for my young son. Tying my illness and pre-existing condition to a notion of goodness is frankly not fair and should not be a legitimate guiding principle for your vote.
My local breast cancer support group, for women diagnosed before age 41, welcomes an average of 30 new members a month. Are we all “bad” people destined for ginormous medical bills? Or no care at all? Do you genuinely think we have each done so many bad things that would cause us to have varying stages of a cancer that attacks our bodies and weakens us? Cancer causes us to cry and worry in the middle of the night over bills and symptoms. Along with the people we love, as we wonder, how many days/weeks/months/years do I have left?
How will I pay for it all?
Should we all really listen to the idea of having us move to whatever state to live, work, and seek treatment in? Please mansplain where this state is, because I have many pals who require constant and quality medical help, access, and information on the pills, chemo, radiation, hormone therapy, hot flashes, horrible reactions (better left imagined than described), and itchy skin. The awkward and embarrassing waffling between constipation and diarrhea in the same hour is a reality that is a visual and physical reminder of how precarious and crappy one’s health is. There’s also ongoing anxiety and exhaustion that comes from knowing you may need other costly treatments and surgeries. All to attempt to kill a disease that is attacking your body.
At 43, I’d like to think and hope that I will be able to watch my son graduate from high school. That would be a day that reflects hope, opportunity and hard work, and one that my own family celebrated with me when I graduated at age 17.
Other milestones tempt me daily to keep going. My mom just passed away, at age 75. She had a series of strokes. You would classify her as another one of your “she must not be a good person” pre-existing condition cases. I can’t imagine how (if?) the care in nursing homes, hospitals, therapy, clinics, and skilled/assisted living homes (as well as briefly at the home where my parents lived for 25 years) would have been managed under your desired system. She could not move or walk on her own. Getting her to move to another state for us pre-existing condition folks frankly would have been impossible.
I have clogged eye ducts, another ongoing issue from 22 rounds of chemo. It is often tough for me to type and look at my computer. This being modern times, I show up for work, loves (family), friends and community. My eyes atrophied from chemo, so I have dried up eye ducts that are similar to those of an 83-year old, according to one of the many doctors I see on a regular basis. That means I often have to apply a steroid cream (medicine) to my eye lids and take a lot of time to wash my eye lids daily. That and using warm compresses helps my eyes feel closer to normal, although I do always need to have artificial tears nearby.
This has all become routine, and involves me regularly going to a doctor and nearby pharmacy, where I sometimes sit on the ground because I am too tired and would not ask a senior or fellow ill person for their chair. A texting teen may get a meaningful gaze from me if I am especially zonked.
I have brittle bones from going through early menopause. My hysterectomy was tied to a tough decision related to learning through cancer treatment that I carry the BRCA1 gene — another unwanted (medical) surprise. There are many hours where I can barely stretch or move, because my joints are weak and stiff. That’s something I did not experience before I got that call from a lady doctor when I was 39. I am a good enough person, but instead got dealt a tough or less than ideal break genetically and medically speaking.
Again, why should my innate goodness matter?
Environmental factors are also at play when it comes to the causes of breast cancer, but my words here are meant to keep the focus on who deserves health care and why.
I have volunteered to help others since I could walk as a toddler. Although my younger brother would probably have called it “bossiness” over “help.” I am friendly and enthusiastic often. When I see someone that needs a hand — from getting donations for a fundraiser for science labs at my son’s school to carrying groceries or offering an ear or advice to a fellow patient or writer who may be younger or older than me, I give it. I will carry someone’s books or bags if they look like they are in worse shape than me. Even though I do tend to get winded or worn out often.
Senator, you have the power to make life healthy and good for many of us Americans. I will be watching through my sometimes-cloudy eyes to see what you say and do next. I hope you listen to your constituents, sisters and friends who may in fact be dealing with pre-existing conditions, extreme worry, serious illness and disease.
Mary Ladd’s writing has appeared in Healthline, Playboy, Time Magazine/Extra Crispy, KQED, & San Francisco Weekly. She is co-author of The Wig Report, a graphic novel on catastrophic illness.