Una vuelta completa 

Mi nombre es Nahomi Raquel Alvarado García; tengo 24 años; mis padres son de origen nicaragüense, y cuando tenía ocho años se divorciaron. Tengo un hermano mayor y una hermana menor: soy the “middle child”. And yes, I have middle child syndrome, but that’s not important right now for this story. Te contaré sobre mi enfermedad y cómo me afectó e hizo que mi vida diera una vuelta completa. Mi familia me creció en una iglesia cristiana pentecostal. Me recuerdo, desde los seises años íbamos a la iglesia cuatro o cinco veces por semana. A veces las oraciones eran muy tempranas y mis hermanos y yo nos quedábamos dormidos en las bancas o en el suelo debajo de las bancas. La religión me enseñó a no juzgar a las personas y que todos tenemos el derecho de amar o ser lo que nos hace feliz.  Al mismo tiempo, desarrollar mis propios principios, como buscar ayuda en un doctor, es más realista que solamente orar y confiar en que Dios me va a sanar, porque si Dios creó a todo, también creó a los doctores y ellos fueron creados para ayudarnos. También me di cuenta de que no tengo que ir a la iglesia todos los domingos para sentirme cerca de Dios o poderme conectar con él. Aunque ya no voy a la iglesia, todavía oro y celebro la Pascua y la resurrección de Dios. Algún día, si tengo hijos regresaré a la iglesia para criarlos como mis padres me criaron, pero también les inculcaré mis principios que aprendí al crecer y darme cuenta de lo que no estoy de acuerdo.  

I remember that night so vividly. It was December 2014, the week of New Year’s. I was 18 at the time. I woke up that morning feeling very sick and nauseous, so my mom took me to a walk-in clinic, as it was the holidays and our family doctor was on vacation. The walk-in clinic said I had bronchitis and they gave me antibiotics for 7 days. On the 7th day I woke up with a swollen neck and I couldn’t breathe properly. I went back to the walk-in and they said it was my asthma reacting to the antibiotics, so they sent me home to wait it out. The next day it was just me and my brother home, as we were still on winter break from university. When I went downstairs my brother was in shocking staring at me, I didn’t understand why but it makes sense since I went straight downstairs after waking for a glass of water. My brother was so scared because my entire face was really swollen so he took me to the hospital. We were waiting for over an hour until I began blacking out and my brother started fighting with the nurses. I spent a week in the hospital puking severely every day. They sent me home because I got better, and they couldn’t find anything they told me to follow up with my family doctor. After a week I went to see my family doctor and she noticed I was a bit jaundice. She did multiple tests and when she got the results 3 days later, she called me right away and told me to go directly to the hospital. My parents and siblings were freaking out, which was making me scared all. I could think of was the worst. What I found out was pretty much just as bad: I was diagnosed with an autoimmune disease.  

For someone who has always gotten good grades and known what I’ve wanted to be since I was little, it was like getting slapped in the face. I was in my first year of university. I managed to get by as I was considered disabled and was able to get extra time with assignments, and let me tell you I really needed it. I began to have insomnia, I couldn’t hold food down, I had no strength, my muscles and bones always hurt. I felt so limited I had to be careful not to get sick because having an autoimmune disease you feel 10 times worse than a healthy person would. My medication made me breakout and have a lot of water weight. I always looked swollen, I’m no barbie but I have always felt confident in my own skin and not being able to do anything to minimize the swelling was hard mentally.  

My mental health deteriorated, and I had to take a year off from university because of the lack of sleep I could barely function and keep up with readings, and I love to read. When I decided to go back, we had a strike at York, I am in the Honours BA English studies at Glendon campus. Having the strike really benefited me, as my health is constantly changing, I can be healthy for 6 months and then I get hit with all the side effects that stem from my illness and the medications. The strike helped me pass the year, after that I got really sick and my liver enzymes count was too high, I had to change medications which made me so nauseous and this time I lost a ton of weight, but I didn’t feel healthy.  

After getting sick, my relationship and my role with my family changed. Some relationships were strengthened while others went through a period of tension. I was always the “mom” of my siblings, I always did the chores, cooking and cleaning whenever my mom was working, but all that changed once I became sick. Everyone saw me as the “sickly one” and I absolutely hate the pity, but it was a relief not having to care for everyone and not take on all the load my mother gave me. My relationship with my mom became really strained. She went into full on nurse mode and would tell me to drink this, eat this, pray to God, have faith and honestly it didn’t help at all. It just made me angry and resentful, plus my medication made me irritated all the time. She didn’t want to accept that my disease was causing me not to hold food down no matter how little I ate. She thought it was me being stubborn and resisting eating because I was retaining water.  

I’ve always watched out for my sister, babied her and done everything for her like everyone else since she is the baby. Once I got sick, the dynamic changed and she began taking on more chores and helping out way more. She also became the older sister, always making sure I tried to eat, I was comfortable… She would attend to me like how I would attend to her before I got sick. My relationship with my brother was like any other brother-sister relationship. We would constantly fight but always have each other’s backs. Once I got sick, he became more observant, making sure I was okay. If I needed anything he would drive me to all my appointments without complaining. We became a lot closer, and he became my person. I didn’t become dependent on him, I would just go to him to talk, vent and release any anger or sadness I felt.  

My dad shut down and never really wanted to know the bad stuff. I live with my mom and go to my dad’s every other weekend, so he rarely saw the bad. The most he’d ask is if I was okay. If I wasn’t eating he would get mad and blame the doctors for miss diagnosing me, and blamed the medications they prescribed me, and that, that was what made me sick. An autoimmune disease does not work like that as my own body attacks itself, which he knew. He was just scared.  

I felt like I missed out on a lot. I couldn’t see my friends as often because just waking up and showering was exhausting. Whenever I decided to go out and have fun it would take my body anywhere from 3-7 days to recuperate itself. It was mentally so draining, especially because I loved going to events at Glendon, to clubs, I love dancing and all that felt like it was being ripped away from me.  

After living with my disease for three years, my doctor saw that my enzyme count fluctuated often but they were over all in normal range. And because sleeping pills no longer were working, she prescribed me medical marijuana and gave me a medical card. Viniendo de una familia de generaciones en la iglesia, fumar marijuana iba ser algo muy fuerte y problemático en mi familia. Los primeros 6 meses sólo mi hermano y hermana sabían que fumaba, pero decidí que no me sentía bien escondiendo este habito de mis padres. Primero le dije a mi mamá y ella no estaba de acuerdo en el comienzo, pero me dijo que lo hiciera un tiempo para ver como me sentía. Con mi papá aun no estaba lista para decirle porque él siempre ha sido más criticón. Después de un mes, mi mamá se dio cuenta de que, aunque no le gustaba, sí me estaba hacienda un efecto positivo. Dormía 8 horas, cuando antes de fumar lo mucho que dormía eran 2 horas. También la marijuana me abrió el apetito, y podía comer, aunque era poco lo que comía, pero era mejor eso que nada. Mi mamá se alegró al ver que me estaba mejorando un poco, y ella me dijo que estaba bien que fumara pero que lo hiciera afuera y no adentro de la casa.  

Nunca pude decirle a mi papá que fumo marijuana, pero mi mamá ya le dijo y él no está de acuerdo, pero mientras él no lo vea dice que está bien. Es muy fácil criticar a las personas que hacen cosas que la iglesia ve mal, como fumar, pero esas personas no están en mis zapatos y no saben cómo mi enfermedad me afecta actualmente. Cuando iba a la iglesia, todos los hermanos me decían ore a Dios, vas a ver que él te va a sanar. Tenga fe y ore mucho. Oraba todo los días y tenía mucha fe, y ahora también oro y creo en Dios, pero no voy a dejar que la religión limite mi acceso al medicamento que me puede hacer sentir mejor y hasta un día, quizás, sanar. 

Religion… Wow! That, in itself, is very complex. From a young age I was taught to believe and pray and have faith in someone I couldn’t see but that he was always watching out and protecting me from everything bad. So, I would ask myself, isn’t an autoimmune disease bad? What did I do to deserve this? I have always been a book worm, I got good grades, I was obedient, I prayed, I sang at church, I was faithful, so why did I feel like I was being punished? My relationship with God and faith changed a lot. I couldn’t understand why I was sick but after the first two years, I realized that I wouldn’t allow my sickness to hinder me and maybe in some way God was opening more doors than he was closing.  

I was still going to be a teacher, but with my TESL certificate I am going to be able to travel and teach English anywhere in the world, which is now my dream. I woke up one day and decided that only I can control my life and happiness, that being sick and disabled would not hold me back from being a better, stronger and happier version of myself. After realizing all this, I loved myself one hundred times more and even though some days are really bad, I wouldn’t change anything for the life I have. So, after being mad and angry, I am grateful and have come to terms with my sickness and realize that things happen for a reason and that my life is what I make it and I couldn’t be happier.