The last time I posted on here was at the end of February, discussing the fact that motility issues were creeping back into my life once more. At that time, that issue was concerning and overwhelming. I had no clue what was to come in the following months- none of us did.
I will never forget sitting in my dorm room with my friends, watching the news as they discussed COVID-19, and the fact it was starting to spread. We watched in shock as colleges on the east coast began to shut down. I remember seeing that, and realizing, “I think this is it. I think we are about to shut down”. We were told to prepare to come back to campus after spring break and to not travel, and days later we got the news we all needed to leave our dorms by the following weekend. Mass panic erupted. It felt as if the world was coming to a pause. And it was.
The entire world truly went on a pause. We all panicked as we realized that the pandemic was officially here in America. I have not been able to hug friends, be in crowded places, or step fully into the real world since March. I have lived in this bubble within our home, just like the rest of our family. Constantly trying to process what it means to be high-risk, immunosuppressed, and medically complex amidst a pandemic. Watching the news every night, feeling my heart break. Watching the death toll rise, seeing healthy people losing their lives to this virus, sick people losing their lives, watching with extreme confusion and hurt at the fact some people believe this virus is not real- or that wearing a mask is a foolish idea. Realizing that the mentality of not taking this seriously means I must stay inside of our home for even longer.
I thought that was stressful and challenging- but I did not know what was about to happen. I had planned on making a post about chronic illness and the impact of a pandemic, and people gave me their valuable time to give their stories. But things changed and it did not feel right to post that. As children you grow up stacking pebbles on top of one another, creating a tall pile, as a game or a way to pass time. However, as you stack higher, suddenly it takes the pressure of one more pebble and they all tumble over. The murder of George Floyd was another name added to a list that was far too long, and the pain and agony of systemic racism burst in America. Protests erupted, and they spread across the world. It was as if our country finally woke up. Woke up and realized our country- a country built on the back of slavery- has another crisis besides COVID: systemic racism.
I have watched with intense upset as people feel threatened by the phrase “Black Lives Matter”, refuting it with “All Lives Matter”. The irony in that statement is intense. You cannot say All Lives Matter, when the disgusting truth is that Blacks are not treated fairly. We will continue to peacefully shout Black Lives Matter until people realize the reality of white privilege and the crisis that exists in the world. I have had messages asking me why I post about this on my public pages, and am left confused by that. I am a human- first and foremost. And when I see fellow humans being hurt and faced with injustices daily, I refuse to be silent.
My youngest sister’s friend and herself had a peaceful protest in our hometown. The next week they had another one on Simone’s 14th birthday. I put on my mask, and joined. It was one that was safe enough as we were spaced out. I knew I had to do something, knowing that if people were being killed because of the color of their skin, it was time to take action. My Mom wrote an incredibly eloquent post describing the experience, that explains the state of the world so well:
“Diary of a protest.
A week ago, my youngest daughter asked me if we could go protest on Main Street. She and a fellow soon-to-be 8th grader decided they wanted to take a stand and make their voices heard. It was a small group. Just five of us. Standing at the railroad tracks in our small town. Holding signs for two hours as some cars honked and some cars sped away. At the end of the two hours, the girls were invigorated. They saw that most in the community cheered them on, as they stood on the side of the road holding their little signs high in the air, so proudly. They decided they wanted to do it the following week. As we walked back to the car, my daughter was beaming, and said proudly, “I can’t imagine a better way to spend my birthday than to protest”. I hadn’t realized she chose her birthday the following week to organize a bigger group of friends to protest, and she was so excited.
During the next week, we gathered more cardboard. Made more signs. Reached out to friends to come join us. My daughter in high school reached out to her friends to come. And the numbers grew. Friday came and we drove down to Main Street, walking out to hold up our signs and show that we cared about those whose voices have not been heard. We also wanted to show that our town cared. That as a community, we would stand up for everyone in pain right now. And to acknowledge that we have so much work to do to make the world a better place for the Black Community.
Recently, our town has been in the news for all of the wrong reasons. Young people have made very bad choices. And unfortunately, their choices have been broadcast for the whole world to see. Filled with hate and disregard for others. This community is our family and we wanted to show it as a place of acceptance and tolerance. Standing up and protesting for the rights of others was just one way to show that our community is better than what a few have shown.
Our small group of five grew to over 50 people. Everyone standing along our little Main Street, holding signs saying “Black Lives Matter”, “I understand that I will never understand, so I stand”, “Justice and Equality”, and so many more. Many cars honked. Cheered us on. Some yelled at the kids. One driver told everyone to “go the f*ck home”, screaming it loudly at the kids, so angry that we were there. Drivers shook their heads in shame at us. Or did a thumbs down. But most were enthusiastic in their support. Truck drivers pulling their horns. Families waving and cheering through the windows. People holding their fist in the air. We were proud to see their support. We were proud to feel that sense of community.
As we walked back to the car, my youngest said it was the best birthday ever. She said that she was so proud to stand up for what is right. She also commented that it was likely the only birthday where she would be flipped off three times. And she was grinning from ear to ear.
We have been talking as a family about what we can do to make the world a better place. My girls have seen progress made in the last two weeks because of people standing together after the tragic murder of George Floyd. Protests have brought to the surface the disparity. The racism. The injustice. The white privilege. The chance to make our world better for everyone. And change is coming.
In the last two weeks, Minneapolis, D.C., Chicago, Denver, and NY have all banned choke holds. All four officers involved in George Floyd’s murder have been charged. The FBI has launched an investigation into the death of Breonna Taylor. Confederate monuments are being taken down. Wal-mart has stopped selling guns in certain locations and is no longer locking up Black hair care products. Physicians groups including the AMA and American Academy of Pediatrics have declared racism to be a public health crisis and called for an end of police brutality of Black Americans. Juneteenth is now a paid holiday in several companies. NASCAR has banned the confederate flag.
Change is happening. And it is long overdue. I love this small town that we live in. And am proud of the support we received yesterday. Protesting was one small way to make a change. We will be looking for other ways to continue to make the world a better place for everyone, as we raise our girls to be aware of their privilege and the suffering of those around us. Change is happening. One day at a time.”
I have been spending this period of time doing some intense learning. Working to become aware of existing microaggressions, how to be an ally, how to make this a lifelong mission versus a one month trend on social media. I believe in the power of being a lifelong learner. This is no exception. I want this page, this community, to be a safe place. I want everyone here to feel accepted, loved, and treasured. That is important to me. I will always stand firm in my beliefs. I have zero tolerance for racism.
It has been hard for me to think of what to say. How can it be okay to post about my own health, when there are far more massive issues going on? I do not know how to find that balance. I give you an update while saying this first: I firmly believe the COVID-19 crisis and the Black Lives Matter movement are things that take top priority in importance.
Since this fall my health has gradually become more challenging. I went from needing cleanouts once a month, to twice a month, to weekly. I can no longer have an unassisted bowel movement. Needing two bottles of magnesium citrate every week. Then dealing with the absolute chaos and upset that causes the rest of my body. For three days my autonomic system is then incredibly out of whack: headaches, very dizzy, fatigued. I feel fine for about two days then, and once again my belly gets distended, sore, and nauseous. My saving grace is that as this got worse, it was the same time I moved back home and my classes were online.
I need a minimum of two liters of IV fluids daily, three during cleanouts and the day after. I feel very stuck to say the least. It is insane with chronic illness, I appear very healthy and well on the outside.
We consulted with an adult motility doctor who told us that my sitz marker scan showed my colon does not work, which we know, especially considering all of the meds I was taking during the scan. He said the standard treatment for this on the adult side is to remove my colon and leave me with an ostomy. I do not want that.
Now we are working, hoping, and praying I can get a cecostomy tube surgery this summer. I did not envision that a year after getting my ileostomy reversed, I would be desperately needing yet another surgery. I need a better alternative for my quality of life. I do not want to be once more struggling because of my motility disorder. CIPO finds ways to always creep back into your life.
I spent my 21st birthday, June 15th, at the hospital after feeling sick all weekend with a port that drained pus. We are still unsure of what happened. A day later, once I felt better, we celebrated the gift of another birthday. I think that turn around, that transition from the hospital to celebrating, perfectly summarizes the chaos of chronic illness.
I am ready to start feeling better, and not feel as sick. I am ready to not have my life be scheduled and dictated by my health. It is hard to manage these things. What is even harder, however, is to see the world hurting so much. There is so much learning, healing, and growth that must occur. We cannot be silent, especially about the things that matter the most.
I never know the right words to say when the world is hurting… all that comes to my mind is that: you are loved. You are so loved. You are cared for. You are seen. You are heard. You are not alone.
We are in this together. We will get through this together.
I stand with the Black community, I lift up those impacted by COVID-19, and I am grateful for everyone that has followed my journey. We will heal, and until then- I am here for you.
I also feel it is important to clarify what today is, Juneteenth. An article from NPR states that “this year marks the 155th anniversary of Juneteenth, also known as Freedom Day or Emancipation Day. It marks the day in 1865 when Union soldiers arrived in Galveston, Texas, and brought news that slavery had been abolished more than two years earlier”. This day was when the news of emancipation finally reached the last, massive group of slaves in Texas. We must acknowledge this day and its meaning. The only day we can move forward, is by learning the past.
Inserted below are images of the art on State Street. Their images and messages are profound, and they deserve attention and reflection on their meaning.