I wake up feeling pain and choking on the dryness in my throat. The nurses around me are talking and doing things with my iv lines. I could not understand what. One of them ask me, “Mika, what is your pain level?” I don’t respond, I just groan because I still am fighting the hoarseness and dryness in my throat. I try to swallow the saliva that isn’t there, and fall back asleep.
I wake again hearing someone ask me, “Mika, can you tell me what your pain level is?”
I clear my throat and say, “I feel pain. A lot of pain.”
The person replies, “Yes, what is the pain level? One to ten.”
I reply, “It is a 11.” I then feel someone touching my arm and I fall asleep once again.
The next thing I remember is people talking and being in a different room but I was not wearing a mask. Someone in the room was speaking but not towards me. I ask, but to no one in particular, “Water, I need water.”
At one moment of my consciousness before I was fully awake, I turned to my grandmother and weakly said, “No more dialysis.”
I am a bit more conscious and aware, I see that I am in a private patient room with family around. A nurse is trying to talk to me about the surgery, the morphine pump, only being allowed ice, and needing to get up to walk by 10:30pm.
Cystinosis has been a struggle. It has been a challenge for me and those who care about me. Yes, perhaps I’m a survivor. However, I’m living with it every day. There is no break and I have fallen apart from time to time because of it.
When I was a kid, I was always seen as different. Every day, I would got to the nurse’s office to take medications. Many days, I had bad breath and body odor from my medications, and I felt sick to my stomach. This usually ended in me vomiting.
Elementary and middle school were especially difficult for me because of this. Not to forget all of the doctor appointments and hospitalizations I had to go to which caused me to miss a lot of school. Growing up with cystinosis is difficult and quite the journey.
Cystinosis is not the only thing that defines me. I am more than my diagnosis. I am a progressive democrat, a feminist, a human rights activist, an organizer, and a student. Beyond all of this, I am a human being.
Cystinosis is part of everything. It is with me every day and intersects everything. Because I must take medications every day and I must make sure that I have health insurance no matter where I go to school or work. I even cannot leave for a weekend vacation without packing medications and it is not just a couple, it is twenty-three different medications. Because of them, I am reminded of the disease every several hours.
In 2010, my senior year in high school, I turned 19 and lost my health insurance. In Nebraska, a person becomes a legal adult at age 19 and according to Medicaid rules one must re-apply for insurance. I did just that and was denied. I was told that I was not eligible for coverage for having a pre-existing condition (cystinosis). I tired applying four times with the same results.
While attempting to be a regular high school student and completing my senior year, I needed to figure out how in the world I was going to get health insurance. I needed the insurance to cover all of my medications that kept me alive and keeps the disease at bay.
At this point, I was working at J.C. Penny, but not nearly making enough money to cover private health insurance. Not to forget, I was beginning my process of coming out. And finding my political affiliation as a Democratic Socialist. This caused several other issues or benefits. It really depends on how you look at it.
Many of my friends were talking and laughing about who they were dating, talking about what college they planned to attend, and what classes they would take. No, not me, listening to them talk of these things actually made me feel angry, hurt, and mat at the world and God.
Nonetheless, at some point, I understood that I was seeing the world more clearly. I guess they all may have helped made me stronger in a way. They may have helped make me into the person I am today.
Growing up, I have made sacrifices that I did not want to make. But, I knew that I needed to, so that they would protect me and get things done.
The year 2011 was even more difficult for me to attempt to put cystinosis in a box as just one detail of who I am because my kidneys failed. I would need a kidney transplant or start dialysis. Thus, my doctors put me on hemodialysis. At the time I did not have a kidney donor.
Hemodialysis is a form of kidney dialysis that can be done with a catheter (a plastic tube) placed in the chest into the superior vena cava (a very large vein right above the heart) that is used to cycle blood into a machine that cleans the blood and returns it. I was on this form of dialysis every other day for four hours of the day in a center for about ten months.
I knew that I would need to look for a kidney donor because I could not indefinitely live on dialysis. After a couple months of searching I found one, her name was Erika von Kampen. She was a match and we had the transplant scheduled at the University of Nebraska Medical Center (Nebraska Medicine). Unfortunately, the transplant was unable to happen there and I had to move on.
Therefore, in February 2012 I switched to peritoneal dialysis. This form of dialysis uses my own body, the peritoneal membrane in my abdomen as a filter to clear wastes and extra fluid from my body and returns electrolytes.
I was on peritoneal dialysis for fifteen months. This form can also be continuous, which I did go to when I had a cycler so that it could cycle the fluid at night while I slept. I was on it from 2012 to May 30, 2013 when I received a kidney transplant at the University of Iowa Hospitals and Clinics (UIHC).
As I’ve said, cystinosis is only a part of my life. Peritoneal dialysis changed my life to make cystinosis a smaller part of my life. It was like I had some of my freedom again. I was able to follow my passion and fight for what I believe in again. I was able to even become active in politics, I also met many wonderful people including Amber Bordolo a Field Organizer with Organizing for America (OFA).
I was going to college at Iowa Western Community College (IWCC), working on my Associate’s degree in psychology, when Amber invited me to a couple of her events. I finally attended one of them, became friends with her, and she recommended that I apply to become a Summer Fellow (intern) at OFA. Little did I know how big of an impact that was going to have on my life.
At the beginning, I worked to organize house parties and other events to get supporters together, fired up and ready to go to work to get the President re-elected. Soon, I moved into a different stage of the campaign where I made many calls to convince voters to support him. Additionally, on the campaign, I had the change to go to Des Moines, Iowa to see the President speak to a crowd of supporter at the Iowa State Fairgrounds where I was able to stand on stage behind President Barack Obama.
It was while I worked with OFA, that I looked into going to the UIHC to get on their transplant list and perhaps have a living donor transplant.
In September of 2012, I went to Iowa City, Iowa for medical tests and evaluations at UIHC Transplant Center to see about being placed on their list. I passed and was placed. Additionally, I went out to find a living donor. This included me sharing my story and health condition with people. Then I sent out packets of information and forms to eight people who were interested. However, only three were returned to the transplant center and one was a match, but had complications and could not donate. I had to make a choice, spend more time sending out packets or see if Erika was still willing to donate her kidney.
I was lucky because Erika was still interested in donating. Once she filled out the forms and they were returned to the transplant center, they immediately scheduled her for an appointment to be evaluated since we already knew she was a very good match. The transplant was scheduled for May 30, 2013, which I dubbed adoption of Serenity because I named the new kidney Serenity.
I am living with full kidney function thanks to Erika and the staff at UIHC. The transplant gave me my life back literally and figuratively. I started the journey to kidney transplant on November 22, 2010 to May 30, 2013. Those were three very long years of two types of dialysis, doctors’ visits, and hospital stays. All I must deal with now is immune-suppressants, cystinosis medications, and fighting to continue to have health insurance.
But, it is still hard. I don’t know what it is like to just live. To live without there being a struggle or some sort of challenge to overcome. Ever since I graduated high school, I have been living from one struggle or challenge to overcome to the next. No time to breath, no time to relax or get comfortable. Or at least the moment I start to relax something new happens, another challenge confronts me. I know how to survive but I do not know how to just live. That is what I am learning.
Nevertheless, cystinosis and most of the challenges did not halt my endeavors. I wanted to do more and give back to society. This is why I volunteered with Iowa Pride Network and volunteered to be on their College Leadership Team. On the team I organized and ran the Iowa Pride Network’s Southwest Regional Gay-Straight Alliance Coalition. This Coalition was a great way for LGBTQIA youth and students to come together and have a safe space. The Coalition consisted of one meeting a month and the meetings were educationally based to fill the education gap on LGBTQIA studies and issues.
While I was a member of the College Leadership Team, I was a college student at Iowa Western Community College and in the summer of 2012, I had my first taste of political campaigning.
As I spoke about before, I became a Summer Organizer for OFA or the Obama campaign. In that position, I had many responsibilities including working closely with volunteers and talking with Iowa voters. I recruited, managed, and trained volunteers to organize their communities and neighborhoods into teams that registered, persuaded, and motivated voters. I organized my turf (most of Iowa House District 16), I planned and successfully organized on of the largest Equality Nights in Iowa. During that event I lead a discussion on the accomplishments of President Barack Obama and the Democrats for the LGBTQIA community. In addition, I worked to grow neighborhood teams on a grassroots level and managed team leaders.
This was an awesome experience to grow as an adult, learn how to manage several tasks at once and be focused on completing goals. It was quite fun. I loved talking to voters and making connections with them about what is important in their lives and how Democrats can work with them to better their lives.
Ever since getting involved in politics in 2012, I stayed involved because I felt that it was an important endeavor. Therefore, I became more active within the local party and learned more about Iowa politics, my new home. I stayed involved in Nebraska as well, where several Nebraska citizens were interested in fighting for second parent adoption.
It was in the winter of 2012, I worked with these citizens who did not have the ability to secure their families through second parent adoption or join adoption in their own state. After we did extensive research, we began working with Nebraska State Senator Sara Howard (District 9) to introduce a bill in the state legislature.
Senator Howard introduced LB380 in February 2013 to correct Nebraska law. I then ran a grassroots campaign for the bill that consisted of an online petition, emails, and calls to State Senators. And I organized postcard making parties in several cities throughout eastern Nebraska, which was sponsored by MoveOn.org. Unfortunately, the bill did die that session, but Sen. Howard continues to fight for families in the state legislature.
While, I was working on the second parent adoption bill, I was the field director of Forward Equality. The organization was formed by several friends of mine including a former professor of mine, and myself. Forward Equality worked on progressive issues ranging from workers’ rights to civil rights (including LGBTQIA). I worked (non-paid) at Forward Equality from April 2010 to April 2014 when it dissolved.
Furthermore, as I said, I continued to be involved in the local Democratic Party. I was elected of the Iowa Democratic Party and severed on the Pottawattamie County Executive Committee as Affirmative Action Chair. I served as Affirmative Action Chair from February 2014 to October 2015.
As the Affirmative Action Chair, I organized the first Affirmative Action Committee in Pottawattamie county for the county Party, where we worked to ensure that our Party was following the Iowa Democratic Party’s rules and regulations on the Americans with Disabilities Act of 1990 and their diversity requirements. This included organizing our involvement in several Pottawattamie County events such as Celebrate Council Bluffs and Heartland Pride LGBTQIA Parade and Festival. I assisted in ensuring that the Pottawattamie County 2016 Caucus locations were ADA accessible to the best of our abilities, and we worked to bring those who historically felt unwelcome back into the Party.
Moving forward, I have been involved in the Presidential Democratic primary. I was a supporter of Sen. Bernie Sanders for president. I first met him back in September 2014 at an event he was speaking at in Des Moines. From that moment on I knew that he was a person that I was willing to fight for and put in long hours campaigning for. He was my candidate. But, at that time Sen. Sanders was not running for president, he was only considering it. I then decided that I had work to do. I volunteered with the Run Bernie Run campaign to get Sen. Sanders to run for president and as a Democrat and I did that for a couple of months by sharing word about Sen. Sanders and sharing a petition for him.
On May 26, 2015, Sen. Bernie Sanders surprised many people including myself by announcing that he was indeed running for president and that he was going to run as a Democrat. I knew at that moment that I had to find out how I can help him out in Council Bluffs. However, I was still the Affirmative Action chair for the Pottawattamie County Democrats and so it made my choice to throw my full public support behind Sen. Sanders.
The choice was thrust upon me the last week of June when I was called by the Bernie Sanders campaign asking me if I could introduce Sen. Sanders at their town hall in Council Bluffs on July 3, 2015. I felt overwhelmed with excitement and terror. I have never spoken publicly to over 2,000 people. Thus, my first response to the staffer who called me was give me some time to think about it. I said this even though in my heart it was screaming go and do this
On July 3, 2015, I gave one of the first speeches kicking off the Bernie Sanders campaign in Iowa. I introduced Sen. Sanders in Council Bluffs, Iowa. I was so nervous but I did my job and did it well for Bernie. That day forward, I began my volunteering for Sen. Sanders. I volunteered on his campaign for months until December when I was hired as an Organizing Fellow for the campaign. I was officially on the Bernie Sanders campaign payroll.
I was an Organizing Fellow for two months before I was promoted Field Organizer. In that position I recruited, managed and trained volunteers, and I built and managed several volunteer canvass and phone banks.
While on the campaign I worked in Nebraska on their caucus. There my turf included Lincoln but I also knew people in three other counties so I organized them as well. Two of the three counties went for Bernie. After the Nebraska caucuses, I was sent back to Iowa to work on our County Conventions making sure Bernie got a fair representation by having all of his delegates show up.
Between working on the Iowa Conventions, I was sent to Kansas to help organize the campaigns’ participation at their state’s District conventions. When I was finished in Kansas I went back Iowa to continue to work. Nonetheless, I was sent to Colorado to assist with organizing for their State Convention. There I called to invite people to the convention, organized carpools, and at the convention I helped in several ways including monitoring the official ballots and observing the counting of the ballots. I worked for Sen. Bernie Sanders as a Field Organizer from February of 2015 to May 3rd of this year.
Today, I am living my life, I am out and open about who I am. This is who I am, a human being who has a lot of passion to make this world a better place for all. I am a human being who lives with cystinosis and who is a transgender woman. I am a woman, a sexual assault survivor, a Democrat, a human rights activist, a feminist, a student, and a fighter.
This is my story and it continues. Cystinosis will not win.
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