“It could be worse.”
I was standing in line to see Santa Claus in the family lounge of my pediatric hospital in a sweatshirt trying to hide my IV under the sleeves. It was a week out from Christmas and my best friend was living in my hospital room with me to pass the time. She, of course, looked just as horrified by the comment as I was and immediately looked away, trying to find a cute child to take a sudden interest in to mask her horror. I furrowed my brow and turned to look the man directly. I wanted to punch him, but I wanted to see Santa more. Sigh.
“Well,” he added, shifting uncomfortably. “It always could be. Some of these kids — they have cancer, you know. Been here for longer.”
I glanced around the room at the children,“Yes. I really suppose it could. Everything can always be worse.”
Part of me wanted to stop him in that moment and say something — like how, while I do not have cancer, I have a disease that’s practically the same. A disease that I’ve had longer than most of the children in the room have been alive, and likely a longer admission too. But then again, I still had my hair then. I wasn’t on chemotherapy yet. How dare I complain? And so, I sucked it in. I am not one that believes in the suffering olympics — especially with a white, middle aged volunteer man in a children’s hospital that clearly needed more sensitivity training. I was there to see Santa & suffer through Christmas in the hospital like everyone else. I simply added the interaction to the long list of uncomfortable things that people have said to me in Children’s hospitals.
I do not consider myself a positive thinker, despite the onslaught of people who regularly give me this compliment whenever they get the chance. People that know me well often call me cynical too, which is an odd juxtaposition that I haven’t quite figured out yet. I’m not offended by either of these — I agree with them both in certain ways. I think that I’m a realist with cynical tendencies who likes to think that sometimes things turn out okay. Call it what you want.
As a woman with a chronic illness, I find myself wary of optimism and positivity — I have trust issues with positive vibes. I hate inspirational posters and those cute wooden blocks they sell at Target that read things like “Choose Happy” in scrawling font. I am not one that believes in “it could be worse” or “finding the bright side of a situation.” If something is bad, then it is. Accepting that is a vital skill. Things suck in life. Children are dying. The Earth is on fire. Dogs get hit by cars. Donald Trump is President. I do not believe in labeling negatives positives or trying to make them so. A storm is a storm, regardless of the sunshine coming the next day. You have to get through the storm first. The storm deserves recognition and validation too.
This does not mean that I do not believe in positive energy or live in a constant middle school girl sized pile of negativity. I don’t bother with that mojo either. I have great faith in people and their efforts. I have trust in the intentions of others and a belief that we bring into the world what we present and attract. I am firm believer in love and the power of hope; something that has never failed me. Yet, I am also a young woman who has been deathly ill for a fourth of her life and repeatedly almost lost it. I understand that there are things that cannot be healed. There are bad things — very unfair, painful things — that happen to us in the course of our lives that we simply have to sit in that have no explanations. I understand that things that we love take time to happen — that the results of hope are a long expanse of a series of things over a lifetime and not an immediate product. Good hope, the useful kind, takes lots of time, cultivation, and patience. We must know what to hope for, and how to hope for it, before hoping for things becomes useful and not ignorant. Useful hope is strategic. In my life, I’ve seen this play out in a variety of ways. From the way people used to tell me “I hope you get better,” to when people realized that I never would, to now, when a cure for an uncureable disease is a sudden possibly. In all of those moments, there was denial, acceptance, and a secret little bit of hope that the circumstances might change. I’m not sure which one of them propelled me forward, they each did at certain times. It’s the balance of them that got me here.
Simply: bad things happen to people. Not inherently good people, but people. Period. Lots and lots and lots of bad things. There’s not a reason for them — they are not here to make you better or teach you a universal lesson of truth. Life is the action of things happening — whatever that thing is or becomes in the future is dependent on lots of other things. Thinking positively about all of them isn’t going to change your life. Perhaps some situations will improve and you’ll be a less miserable person. Understanding that not everything is the end of the world is an important life skill. Complaining every time something doesn’t go your way in life is a great way get yourself kicked out of the group chat and uninvited to parties. But there does becomes a point when positive thinking is harmful; when we’re no longer creating solutions through optimism. Whether it’s accepting the death of a loved one, an illness, or even financial burden — positive thinking isn’t going to make the pain go away or solve the problem. Positive thinking did not get me to the right doctors or provide me with a bone marrow transplant. Those things happened through luck, privilege, circumstances, kindness, and appreciation for others.
& being grateful.
I’m not going to tell you that my life circumstances are awesome, because they’re not. I’ve spent years of my life in pain. I have lost friends, relationships, opportunities, dreams, and possibilities. I have spent more time laying on the floor in the bathroom unable to move, asking myself “why me” to know exactly how much I have lost. These are not good things and refuse to label them as that. I will not tell you that these things are all in God’s plan or that I am better for them.
What I will tell you is that being a grateful thinker is how I have survived life. Because while I am not better for those awful things, I am me because of them — someone I am very proud to be. I am satisfied and content with myself & my life and accept that things suck. I am grateful for my privilege as an upper middle class white woman with financial stability and home security. I am grateful to go to a University that has worked well with me and given me the opportunity to learn. I’ve been given the ability to write well and communicate my feelings. I am thankful and blessed to be in the hospital that I am. I appreciate my doctors and nurses, who are trying their very best and recognize that very few people are able to say that with full confidence. I am thankful that I have found supportive friends and a boyfriend who are willing to come support me selflessly. & even though I am stuck in this BMT room, filled with chemotherapy and who knows what else, I am also young. I am being given a second chance at life that others do not get.
I can find joy in the small graces I have & faith that others might come (and acceptance that they might not too). That must be okay.
That is how it is.
Interested in learning more about my story? You can follow my Journey through BMT & beyond on Instagram @poements_ or at poements.com. You can also shoot me a DM! I don’t bite!
Interested in being a bone marrow donor?
Go to Bethematch.com to Learn More.
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