The Privilege of Knowing
Updated: Feb 22, 2019
You are reading my thoughts in raw form. Just how I feel and have felt over the course of the last 7 months. With consent, my mom told me to share somethings, she said "maybe it will help someone who is going through the same thing."
Short Version: On Monday, December 26, 2016 my mother was diagnosed with cancer. She had not been feeling well for about 5-6 months. She had regular visits to the doctors office and shared the symptoms she was having, over and o v e r. She thought maybe she was allergic to something she had eaten because over the years she had become allergic to certain foods. Maybe she accidentally had eaten something that upset her stomach. We could only hold on to that idea for so long.
Month after month her symptoms had not dissolved, if anything they had progressed and were more frequent. Late October hit and my father sent a photo of my mom for one of the theme days she was having for the kids at her school. Visibly she had lost weight. Over the last 3 years my mother had lost weight on her own. She was feeling GREAT! She was exercising regularly and eating a well. But when I saw this picture, she didn't look the same to me, I was concerned. Living in a different state made it difficult to gauge how sick my mother was, "not feeling well" turned into an every day thing. I started researching different holistic doctors that she could consult, made some calls, made a list and sent them to my parents. My mom had already been seeing a Gastrointestinal (GI) Specialists and she didn't want to start the process all over again. I remember checking in with my dad one day early November. I felt overwhelmed. Having heard that he had to take her to the hospital and all she got was medicine pissed me off. The hospital couldn't do much because she had been receiving care from a specialist already. My reaction was WHAT THE FUCK?! At this point it was the first time I couldn't hold back my emotions. I broke down at work after one of my colleagues asked how I was doing. I'm not a good fake it till you make it person. I just...broke down. I bought a flight home that week.
She had been seeing a GI specialist and had appointments lined up, test after test...Test after test she was diagnosed with a chronic gastrointestinal disease. My family all felt there was more to know. Life did not seem sustainable with this diagnosis. She wasn't getting any nutrients as no food was digesting properly. All the medicine she was taking wasn't working. Nothing was changing the symptoms she was having continued. NOTHING was working. My mother's GI specialist conducted a stomach exam to find out if her food was digesting normally. This exam should have been done before she was diagnosed.
At this point and in true fashion, Mrs. Rochon demanded that she have an MRI (or MIR as she calls it LOL). The specialists was resistant to ordering the MRI because he didn't think her health insurance would approved it because my mom was "relatively healthy". This was so upsetting to me. JOHN Q was about to make a come back because they were going to give my mother and MRI, if I had to conduct it my damn self. My mother's specialists went to a conference and shared information about what she was experiencing. ANOTHER Doctor told him that he NEEDED to order the MRI. The stomach test results I mentioned earlier were positive. My moms food, when it stayed down, was fully digesting through her stomach. The issue was not her stomach, the first diagnosis was incorrect.
The results of the MRI showed that there was blockage in the jejunum, which is the middle portion of her small intestine. It's primary function is to absorb the nutrients from broken down food. My mothers food would digest through her stomach and to the first part of her intestine, the duodenum but due to the blockage it could not travel to the rest of the intestine. This explained her excessive vomiting, the weight loss, and just overall discomfort. After the blockage was discovered the GI Specialists conducted another endoscopy to get a biopsy of the tumor.
Making Meaning: Life circumstances and experiences have the ability to change you. This experience has certainly assisted in my personal reflection and being vulnerable with my family. To be frank there's just some shit that doesn't matter to me anymore. For an example, going back and forth with #45 peoplesplainers and or anymore who has a part time or full time job in being willfully ignorant. Nah. There is no time to waste...
At this point I had a better understanding of the persistence of why my mother was experiencing these symptoms. I was concerned. It took what felt like forever for her to get appointments for her exams and the time in between for the next ones felt even l o n g e r. I had to be mindful of my thoughts. I had to do my best to control them. Hearing the diagnosis was painful. You know cancer is insidious and has impacted many people inside and out of my life. Your mind automatically travels to terminal illness. It's difficult to see a loved one suffer. I knew I had to do research. I read about coping with the diagnosis, supporting my mother and making sure that we continued to talk about life.
My dear friend told me her father used to say,"Life is for the living... while you are alive act like it."
I would always ask her how she was feeling, today. I visualized her being physically strong again. I visualized her full health being restored. Her faith is strong, emotionally she has her days but her positivity has been through the roof. I checked on my dad often because I knew that emotionally and psychologically observing my mother being sick and caring for her the best he could also impacted him. My father loss both of his parents to cancer by the time he was 18. I was reminded that our minds travel places based on our experiences. I knew this was a lot for him. I checked on my sister because while we are twins she's still the baby and well, she is her mother's child and she loves our mama. Knowing she wasn't well impacted all of us.
I acknowledged by frustrations and I tried to checked my impatience. I checked my privilege. I am grateful that my mother has access to the health care benefits that she needs. I am grateful that my family and I all have the Family Medical Leave Act (FMLA) through our employers. This is a federal law that requires employers to provide employees job protected and paid/unpaid leave for qualified medical and family situations.
I acknowledge being grateful, recognizing the privilege my family has with receiving these benefits, and I am enraged that in the United States it's a privilege and not a right to have access to affordable and equitable healthcare. I don't feel lucky. I don't feel blessed.
I shared with my mother that there are so many people who do not get the care they need and it's an access issue. I do not feel "luckier" or more "blessed" then the next person. I am grateful that there was a procedure for this cancer to be removed...and I do not believe that my family deserves access more than the next family. I believe everyone deserves equitable access to healthcare. I asked my mom if she understood what I was saying and she verbalized, "yes, yes I do."
On December 28, 2016 I had to fly back to Tampa. Every time I had been home in the fall/winter it was difficult to leave, leaving this time felt extra hard and so emotional. I reached out to a couple of friends and of course one of my close cousins. While at the airport one of my friends shared this message with me. She summed up everything that I was feeling and gave me permission to feel every single one of them. I shared the message with my family and kept it as a reminder on the harder moments.
My immediate and extended family knew that we had to keep her in good spirits we had to uplift her and validate that we knew (not only felt) she would feel strong in mind and body again. I had to and still have to remind myself of that. Reminders from people I am connected to have helped me so much. All of your thoughts, energy, positive vibes, meditation, prayers, etc have assisted my family and for that I am forever grateful. On December 28, 2016 I had to fly back to Tampa. Every time I had been home in the fall and winter it was difficult to leave. Leaving this time felt extra hard, heavy, and so emotional. I reached out to a couple of friends and of course one of my close cousins. While at the airport one of my friends shared the message above:
"Stay strong. But also know it's okay to feel pain and cry and scream and be angry and sad and be whatever else you may feel. Let yourself feel and be. But stay hopeful and joyful, even in sadness find peace."
She summed up everything I was feeling and gave me permission to feel every single emotion. I shared the message with my family and kept it as a reminder for the harder moments.
"She's going to be alright, she is going to be good, she will make it through and her health will be restored" I used to tell myself over and over. I continue to tell her, over and over.
My mother's surgery date was February 7th. The surgical team was phenomenal and the health care professionals that we encountered were excellent. The surgery was successful there we no complications. The road to recovery, treatment, and healing began. My family slept in the hospital each night with my mom. The nurses and surgical team cracked jokes about us because we stayed in the hospital all day, everyday. We took turns during the day time but at least one of us was always there with her. The nurses would say ""yall really travel in a pack" one said "I'd have to pay my son to be in the hospital with me." When my mom had to get test done, she had to travel to different parts of the hospital and we would go with her even when the nurses told us we didn't have to. Thanks homie, but we're going wherever she's going so you can see me, see you.. At night my sister slept on the sofa, my dad slept in the reclining chair, and I slept in a sleeping bag on the floor. For my own sanity I would go in the waiting room and stretch, listen to music, and do pushups...So. Many. Pushups.
This almost goes with out saying we must know our bodies best. We must learn our bodies, we must listen to our bodies, and we must become experts around our own personal wellbeing and survival. When something doesn't feel or seem right we have to be persistent and resistance about our health. My mother had to demand an MRI. Without that MRI the blockage would not have been discovered. Without that MRI we would not be in the know. We would not have the privilege of knowing. Trusting the healthcare system has been a challenge for me. I made the choice to trust the surgeon's, to trust the nurses. That the presence of my family, the verbal reminders " please take care of my mother" as she went into surgery, as they aided her post surgery, as we learn what her chemo treatment will entail...the choice to trust a system that you know historically hasn't served your community morally or ethically...makes my damn head hurt. While cautious, yet I imagine the consequences of not allowing myself to trust. There's this constant negotiation I work through over and over.
Working through this has stretched my families ability to be vulnerable with one another. I feel compelled to share things with my parents that I once would have kept to myself. Over the last 4 years I have witnessed my parents have a loving relationship. The other day I shared with my mom that it makes me emotional because growing up my sister and I didn't always observe a loving relationship. I would argue that it's hard to remember a time when it existed, I just don't remember it. But now, being able to observe them loving one another has truly been a beautiful experience. In the picture below my mom is going on her daily walk in the hospital, accompanied by my father. It's the first day she had all her drains and tubes removed.
I think it's important that I illustrate who my mother is to us. My parents grew up in Louisiana. In the US that is where many of our family roots are. Mama is the roux of the gumbo. Without solid roux the okra, shrimp, chicken, crab legs, sausage, rice, and EVERYTHING else in that gumbo pot will not have reached it's rich flavorful potential. Without the roux, there is no gumbo, or at least no gumbo that I want to be connected to. Without my mom, "us" doesn't exist. I am grateful that my parents are getting to know love again with one another, they both deserve it. And I am forever grateful that we all have each other to rely on. My mom told me how lucky she felt to have children who would come to look after her. I told her that she was a great role model in how she cares for us. That it wasn't luck. That it was really just the impact she has had on us and honestly everyone that is in her life.
I sincerely thank each person for meditating over my mother's name, for your thoughts, prayers, vibes, calls, text messages, every person who has lifted my mother up. Thank you. She is making progress and is healing each day. Her chemo will begin in March and will go for 6 months or so. There's much more to learn and questions to ask...
Today was 60 something degrees outside in New England, in February. My mom wanted to get some sun. She rejuvenated one of her plants by removing the weeds, and chopping up the soil. The symbolism of that action breathes tenderness, love, and life. We love you, Ma. Part 1 is over, lets stay rooted, recover and heal your full strength in mind and body.