How My Husband Helps in My Fight Against Chronic Illness

The bell rang; I knew what that meant. The recess bell was the announcement for my least favorite time of the day. Normally ten year olds love recess; it is their favorite part of the school day. I wasn’t one of those ten year olds… I was the disabled outcast, sitting by the benches in my wheelchair or having seizures in the nurse’s office while my friends ran and played. Some days a girl from my class would come and play connect four with me, but on other days she wanted to play soccer. I spent many days alone, sitting on the sidelines watching the other kids play. I would get home and cry because I knew I would never be like them.

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Then it was the pretty lights and pretty dresses. Middle school boys and girls experiencing the awkward nature of adolescence at the holiday dance. I was at home with a spinal leak; I wondered if anyone would notice I wasn’t there, but then again I was absent so often they probably didn’t think anything of it. I dreamed of a dress and wearing pretty makeup, of doing my hair and dancing with my crush, but there I was on the couch unable to stand. I never got to experience the awkward middle school holiday dance.

Then it was the Washington Monument and the cherry trees — the school trip to Washington DC. I had been looking forward to this trip for years, but my body had different plans. My throat was closing and I shot an EpiPen into my leg. It was the end of the line, and I had to leave; I packed my bags and left DC.

The pattern of missing out continued into high school and my first year of college. I would miss parties, get togethers, school; I often felt like an outsider. In college I would disappear into my room for days. The only time I left room 129 was when I had to go pick up my food delivery outside.

The reality was (and still is) that being sick changes what I can and cannot do; I cannot act like a healthy person all the time, I cannot avoid the emergency room or hospitals, I cannot be “normal,” and because of this I felt alone for a long time. The other reality is that nobody can really understand what I go through or what I have experienced. My 27 surgeries and multiple chronic illnesses have deeply affected how I live my life. Besides my mom, I never had anyone who could truly understand what I have been through. This is the truth that has made me feel out of place for my entire life.

My life is a battlefield, a never ending war between my health conditions and me. I fight every day to stay alive. I have undergone 27 surgeries and been hospitalized a countless number of times. Every day I take so many medications I choke on them and then have to do the Heimlich (thank god it’s easier than it sounds), I have used so many EpiPens I’ve lost count, I have been in a coma and on a ventilator and I have suffered more than imaginable.

Life with chronic illness is unpredictability; it is fighting for the good days by overcoming the bad. My life is inconsistent and crazy, always one crisis after the other. I believed that my life was way too complicated to ever be in a serious relationship with someone. I also believed nobody could ever begin to understand the right way to be there for me. I believed that my illness had sentenced me to a life that nobody else could ever possibly understand.

This all changed when I met my husband. I never imagined someone could make me feel like I wasn’t an outsider, but he did. My husband can never understand what I have been through or what I go through, but he is right there by my side every step of the way, and he experiences my chronic illness with me. It takes strength to see someone you love suffer and then still be there for them in your fullest capacity. I see this strength in him.

I realized that I would never again be alone during my last surgery. On the way home from our wedding we were rear-ended on the highway and my neck was severely injured. Four days later my mom, my husband and myself were packing our things and driving to Washington, DC where my neurosurgeon is. Once we got there it was late, so my mom went back to the hotel while my husband and I sat in the emergency room until the early hours of the morning. I was then admitted and stayed in the hospital for two weeks.

Whenever he didn’t have work, my husband was by my side. Finally, after two weeks in the hospital, I had my surgery. When I was still on a ventilator and intubated I woke up. I remember seeing my husband in the corner and I remember thinking “he’s here, everything will be OK.” For the first time in my life, I had found someone who made me feel OK even when there was a tube going through my nose and down into my lungs, and it was then I knew I would never be alone again.

When I was a child I felt alone, and when I grew up I felt alone; now I feel cherished, loved and supported. It is amazing how you can one day meet a person who you don’t know and then they can become your everything. Having a chronic illness doesn’t make you unlovable; this is the lesson my husband taught me. He showed me what it is like not to fight the many battles alone, but instead fight with an ally by my side.

Everyone feels alone sometimes. We miss out, things fall apart unexpectedly due to illness or something else completely out of our control, but that doesn’t mean you should give up. I never loved myself for who I was and always saw myself as a burden. I was jealous of everyone who wasn’t sick and was so busy being jealous I didn’t have time to appreciate myself. My husband supported me, stood by me and showed me I am worthy of being loved — changing my life.