Daughter, sister, aunt, mother, wife, fighter, survivor, slayer of dragons
Okay, so the first seven titles are commonplace. But slayer of dragons? Yes, slayer of dragons. I have an autoinflammatory disease, Adult Onset Stills Disease. This invisible, mythical, mighty beast. This beast that, for years, nobody believed existed but me. The beast that was there with me with every painful step, each fake smile plastered on my face but not reaching the eyes. Wondering why it seemed that everyone else could get through life, only set back by the occasional cold, maybe a sprain, a stitch or two while each step that I took or each task completed put an almost impossible strain on my body. The only answer that I could come up with rounds and rounds of tests over years was that I was a wimp. My body hated me. I got sick at the drop of a hat, and at times, even when I was in so much pain that I was doubled over, the doctors would tell me that they couldn’t find out what was wrong.
So as time passed, I believed that I was not strong enough to get through this life, that one day I would get this respiratory infection that would not go away. I could almost feel the sleep.
And I was so self-centered. My sister was suffering through her own illness, and I admit that I did not take it seriously. She looked healthy (does this sound familiar?). So time passed, I met the man who would become my husband, my sister’s daughters grew into young women, and I had my first child. My sister was so happy. She said she didn’t think that I would ever have kids. For perspective, I’m the youngest of 10. In 1976, the year that I was born, 2 nieces and 2 nephews were born. At 44, I have great-grand nephews and nieces. Quite literally, my brother’s sons are named Ronald and Ricky. Mine are Richie and Ronald. I also have another Richie as a nephew. At some point, we just ran out of names, and if you just yell “Ronnie” into the backyard, there is bound to be at least one person that answers.
But my sister, Mary, who didn’t look sick, was integral in my diagnosis. She had an autoinflammatory disease. I still remember that I was in line at the Dollar Tree when my mom called, saying my nieces found my sister Mary on the floor and the ambulance was “working on her.” To a degree, I was not really worried. At many times in the past, she had needed to be hospitalized to help balance or adjust her medication. But I did not like the “working on her” phrase.
I had planned on stopping to get groceries, but I decided not to. The hospital was 45 minutes away, and it really felt like this was different. I did a quick stop by Burger King, grabbed lunch for the family and headed home to drop it off, then turn around and go.
The first hint came at my door. My husband (fiance at the time) met me at the door. I was still in denial. He told me my sister had just called. Referring to the number of siblings I have, he really needed to be more specific, but I automatically thought Mary. I asked him if she had said what was wrong with her. He told me it wasn’t Mary, but another sister. I called her cell and her husband answered. It had to be bad. I told Rich (hubby) that I was going, but he made me stop and eat. I was notoriously horrible at eating breakfast, even lunch, and he said he wanted me to have something.
So I took 2 bites of a burger, grabbed a diet coke and headed off to take simultaneously the longest and shortest drive of my life. Longest because I needed to figure out how Mary was and shortest because, even though not spoken by anyone, I knew that once I entered the hospital, my life would never be the same.
I parked, got out, walked to the ER entrance. Mary’s husband and one of my brothers passed me and didn’t say a word. I was waiting in line as 2 or 3 other people were in front of me. My phone rang. It was another brother-in-law asking where I was. I told him I was in line waiting. The woman at the desk leaned to look at me and asked who I was there for, while at the same time a man started to walk towards me. I gave my sister’s name and he started to walk be back to another room. He told me he was waiting for us, and asked me how many more siblings were coming. I was perplexed. I told him one lived in Florida, another in a different state that I couldn’t remember, but I really couldn’t tell him because I didn’t know how many of us were there yet, just the one sister who had spoken with my husband and the brother who I had passed.
And yes, she was gone. Sort of. I never asked why, but I think that the staff was trying to keep her “alive” until the sibling got there. My mom took my arm and said I needed to say goodbye. A brother told me I had to stay strong for dad. So I went to say goodbye, on a Sunday the week before Mother’s Day, only about a month before Mary’s older daughter would graduate High School, preparing to say goodbye to the sibling closest to my age, who I fought with and idolized.
And depending on who you ask, a miracle took place. As my mother held my hand, a nurse said “We got one.” The people started to move. They had a heartbeat. But a heartbeat after so long of no oxygen to the brain.
They got her body back, but not her. So began 3 days of sitting in the ICU waiting room, with my whole family basically taking up, well, everywhere. We laughed, told stories, saw nephews and nieces that travelled to say goodbye. All the while, I was having some similar symptoms, some of them I suffered from for years. Mary had worked at that hospital until she had to stop working. Her old colleagues came up to talk to us, reminisce, and when they described her symptoms, I would think, “Oh, that’s happened to me too.”
So on Wednesday, after discussing with her husband, the decision was made to take her off life support. She was not living. I could see her body failing more and more. The breathing tube was wearing away her skin already, but I knew that the nurses were doing their best to move it around so it did not lay against the same part of her lip or cheek, but it would migrate back.
I listened to her husband in vast denial. He had been saying she would be home for Mother’s Day and her daughter’s graduation. But no. So on a day that I was to actually visit another specialist, I called to let them know I would not be in as I just said goodbye to my sister.
More to come….