*In case you are unaware of the musical Hamilton, it tells the powerful story of founding father Alexander Hamilton as he rises from an orphan living in poverty to a man who gains great political power during the American Revolution. I highly recommend watching the musical on Disney +, seeing the show on Broadway when it reopens, or at the very least listen to the soundtrack.*
Since the release of Hamilton on Disney + last month, I have spent an obscene amount of hours belting out the lyrics to my favorite songs word for word while watching the play. Some might say it is a slight obsession. To me, it is a welcomed pleasure to no longer listen to the soundtrack alone. While repetitively watching the play I noticed an emphasis on the death and grief that surrounded Hamilton. The plot includes a heavy conversation on the hardship and grief Hamilton had to overcome in his early life as he suffered a great number of losses from those who were close to him. These losses forced Hamilton to question his own mortality thus changing his perspective of the world. This portrayal of grief was shown in a way I could closely relate to as I too have experienced a number of losses in my early life due to my chronic health conditions.
Unfortunately, my grief as a young person with a chronic illness is enormous. I grieve for the life I wanted to live and the life I thought I would be living. I grieve for all the things I miss out on due to my illness. I grieve for the anticipation of my own mortality. And I grieve for the friends who have died as a result of diagnoses similar to my own. Since my health deteriorated in 2012, I was introduced to a community of adolescents and young adults with serious health issues. This group of people quickly became more than friends and now I consider so many of them to be my family. I have witnessed more than 60 young adults die as a result of their illness. They were my family. I have watched my family die. It never gets easier. My heart shatters upon hearing the news of each loss. In the months since the pandemic began (mid-March 2020) seven of my friends have died due to their illnesses. Seven. The oldest was 30 years old, while the youngest was just 17. Their names so easily fall off my tongue— Jill, Ansley O, Ansley M, Carly, Nicole, Tasha, and Charley. Jill always lifted others up. Ansley O had a bubbly personality. Ansley M loved giraffes. Carly was the oldest of six and was the best big sister. Nicole always brightened up any room she walked into. Tasha cared for others amidst her own suffering. Charley aspired to do big things. Their deaths have sucked the air out of my lungs. They were so young, so important, and deeply loved not only by their families but also by our chronic illness community. I will always grieve these sixty-plus losses so heavily.
At a young age, Hamilton watched as everyone he was close to died all while Hamilton survived the worst. For him, it is almost as though death became a commonplace. Death surrounded Hamilton so much that it became his truth. A truth he had witnessed often. Death went from being an acquaintance to an unwanted house guest that would never leave. It was no longer a question of whether or not he would die young but rather a statement. It appears that Hamilton saw so many people die at a young age he felt it to be a kind of normal because of this he expected he would die at a young age like everyone else in his life. Death was always there and death was always looming despite it having been uninvited. Death has become an uninvited primary fixture in my life too. My illness has meant death is a frequent topic of conversation. It is not a question of whether or not my disease will take my life but when my disease will take my life. I watched as people who I considered to be part of my family die as a result of their conditions— many who had the same health condition(s) as myself. Like Hamilton, I never thought I’d live past twenty because most with my diagnosis won’t make it to their teenage years. The fact that Hamilton and I are alive is a miracle. Both of us question when our time will come because for so many years we have anticipated our deaths while watching those we love die. I not only anticipate my death but I also anticipate the possibility of my friends dying.
I no longer try to pretend death is not around. It is not a taboo topic of conversation. We must learn how to incorporate it into our lives in a healthy manner. I have developed a cycle of emotions I undergo when my friends die. This cycle is how I have learned to incorporate my grief into my life. It is one of the few ways I have been able to explain to myself why I feel the way I feel and how I cope with loss. First comes the devastating news. I am shaken. I begin to talk amongst friends within our community. If I did not closely know the person then I speak with those who did. I want them to get the news firsthand if they had not already received it and I wanted to know what that person was like from the perspective of others. We exchange a couple memories. Next, I briefly collect myself in order to share the news on social media about our loss. I want to honor the beautiful person who died. I try my best to support the community by promising if someone needs to talk then I am here. A handful of those in the community reach out wanting to talk, so I listen. I want them to feel heard. I want them to voice their feelings as they come to terms with the death of another young person within our community. I push aside my feelings because at that point in time they do not matter. My sole purpose is to help others cope. Once things have quieted down I let myself feel what I feel. I find myself upset as the hurt hits me hard. I wonder why they had to die. I question why I made it to 22 when they never had the chance. I question my future. And then I pull myself out of that state of anger and devastation. I know I can’t feel that way forever. I have a community that looks up to me and needs me just as much as I look up to and need them. While this does not work every time I find it has given me the ability to take control as my emotions flow from one side of the spectrum to the next. I remember while I was boarding a plane home from New Zealand my Mom told me one of my friends who I was super close to died. I cried. I felt so helpless and alone. I couldn’t help others and I was unable to reach that community of support I so desperately craved. I couldn’t share her death with our community until almost a day later. I couldn’t help anyone. Instead, I was stuck on a plane with my own emotions. I was broken. Today I know that friend is gone but I still don’t fully grasp the idea that she is gone. It was a sudden and traumatic death that still clings to me today. It was not a healthy way to grieve and it is still a loss I am trying to come to terms with that loss in order to find a healthy way to grieve that friend.
A painted Hamilton rock made August 2020
The hardest part of my grief has been questioning my own mortality. The musical asks, ‘why am I still alive while all my friends have died.’ I wonder if there’s a reason for me to have lived as long as I have. I still think I should be the one who died not my friends. Survivor’s guilt is too real. It is an angry kind of pain. The kind of pain that makes you so angry that you want to throw something and scream. It is not fair I get to keep living life while their lives ended so abruptly. I graduated from high school. I studied in New Zealand. I spoke in front of 32,000 people. I made it through college. I met the love of my life and got engaged. Many of my friends can’t say they were able to do all of the things I have. I compare my circumstances to that of those who have died— Maybe I am older, sicker, we have the same diagnosis, or I survived the medical procedure that they did not. It doesn’t sit well with me to know there are babies much younger than me with my diagnosis who died from this disease while I am here at 22. They never had a chance. I know it is not possible to trade my life for theirs but that doesn’t mean I don’t want to. Why the hell am I alive? I ask myself that question a lot. It does not make sense as to why I have lived. I don’t think I am more deserving of living a long and good life as compared to the lives of my friends who have died.
But who is to say next time it won’t be me who dies? Which leads to me to my next question when will it be me? I don’t want it to ever be me. It can’t be me, can it? There are so many things I haven’t done. I haven’t traveled to Europe or Australia as I have wanted. I haven’t had a TikTok go viral. I haven’t finished writing my book. I haven’t been swimming with sharks. There are so many books I haven’t read and movies I haven’t watched. And I haven’t done enough for the community I advocate for. I haven’t left a meaningful legacy. I have not finished my narrative. I want more time. But I also know I might not have more time because of my circumstances. It seems like Hamilton felt that way too. He did what he could while he was there. He kept writing and fighting because he wanted his legacy to help teach others and to help them grow through the systems he put into practice. To him, the impact he would make in the future by finishing his own narrative is what mattered. I only hope I can manage to make such an impact.
I recognize many of the feelings I shared above are universal. What the chronic illness community goes through after each loss is unimaginable. Nobody outside of our circle will be able to comprehend what we go through nor do they want to. I don’t want anyone to feel how I feel but my grief is shared amongst a community of people— knowing that is the one thing that makes this pain easier. At least I am not alone in all this. I have friends with me through this chapter of my life. We have the opportunity to help one another. We often help each other until the very end, until our death. Our tiny community struggles to grieve our losses together. I don’t have answers to many of the questions I asked above. The only thing I do is know is that while this is horrific, painful, and gut-wrenching I would rather love these friends knowing I would lose them rather than never having loved them at all. These friends have changed my life by making this fight feel not so terrible after all. As said in Yorktown, “If this is the end of me, then at least I have a friend with me.”
I am so thankful Hamilton has brought me great solace while processing and understanding my own losses and grief. I have needed a sense of direction and healing over the last few months. While I know Hamilton will not be able to heal me I know it has been a good place to start.
