Let’s Talk About Dying: Diary

If you’re still reading this (& the title hasn’t scared you), hello! It’s me. I’m not going anywhere soon (I don’t think, at least), but I think it’s important for me to have this conversation with myself, those I love, &, yes, people like you. Some of you reading this may be chronically ill; you might have a chronically ill child or relative. These things can be scary to talk about, but they don’t have to be. So, without further ado, here’s how I got super comfortable with how I want to die (if I have any say in it) & why it’s healthy for me to talk to myself & to those I love about my death.

Like so many other things that I’ve written on here, this was spawned by a late-night Twitter thread. I don’t get a lot of sleep; some nights I get no sleep – hence these rather morbid trains of thought that eventually get turned into something more coherent.

Even though I’ve been told many times by my doctor(s) & family members that Crohn’s Disease will affect my quality not quantity of life, there’s a large part of me that doesn’t believe them. It’s not melodrama – I promise. Yes! Technically, it’s extremely unlikely that my actual Crohn’s Disease will kill me. However – it is quite possible that I could get some sort of cancer from a medication that I’m now taking.

Why? Well, because medications that have been in the field for a while (when I say a while, I mean 10-15 years) have not worked for me. So…I have to resort to the latest & greatest of medications. On one hand, this could be amazing, yes! On the other hand…these medications have little to no research on a patient’s long-term health – even though they’ve been FDA-approved.

This isn’t me attacking “Big Pharma,” by the way. I get it! New medications need to be put out there, because older ones aren’t helping some patients – patients like me. I get that, & don’t try to fight it. But for me to say that these medications will do nothing but good things for me is, quite simply, unrealistic. There’s quite a high likelihood that some unknown & possibly detrimental side effect will pop up years from now. That’s a shame, but it’s also part of the game. We all know that medicine is a practice. That’s why doctors practice medicine. It’s an ongoing battle & there usually aren’t clear-cut answers or cures.

Okay. So, not only am I on medications that have little to no long-term research statistics, I am also on low-dose chemotherapy. Yes, it’s low-dose…but there’s no expiration date for me stopping my chemo. I could be taking this kind of chemo (or another) for years; perhaps, even, my whole life. The point of my chemo meds is to suppress my immune system just enough so that my body accepts the other meds I take meant to control my Crohn’s Disease (it’s complicated, I know).

So, basically, I have no idea what is going to happen to me in 10-20 years. To say otherwise would be kidding myself! I don’t mean that in a morbid way. It’s just the facts. & for me, personally, it’s more comforting to kind of think this information over…to talk to myself about how I would approach an earlier death. For example: I want a DNR.

What’s a DNR? It’s a do not resuscitate order; it’s a request not to have CPR if your heart stops or if you stop breathing. Unless you have a DNR on file, hospital staff will do everything they can to keep your heart beating or keep you breathing.

This sounds good, right? Like…we want our hearts to keep beating. We want to keep breathing.

Well…not necessarily. I was of the above opinion for a while, too, until I listened to RadioLab’s (a great podcast series, try them out!) episode called “The Bitter End.”

In this episode, according to RadioLab’s summary: “Producer Sean Cole introduces us to Joseph Gallo, a doctor and professor at Johns Hopkins University who discovered something striking about what doctors were not willing to do to save their own lives. As part of the decades-long Johns Hopkins Precursors Study, Gallo found himself asking the study’s aging doctor-subjects questions about death. Their answers, it turns out, don’t sync up with the answers most of us give.”

Basically – because of what doctors have seen in their careers of attempts to resuscitate patients, they do not want this experience for themselves or for their family. In fact – most are so adamant about this that a study was conducted by Johns Hopkins Hospital, called The Precursor Study. All the subjects were doctors, & all were asked about what forms of care they’d choose should they suddenly fall ill, or what they’d choose at an older age.

Gallo-figure-2.jpg

I don’t always trust doctors (for a variety of reasons due to my chronic illness) but I have to say I believe them on this one. I’ve seen people on ventilators, in palliative care, both in real life & on screen. Neither is a pretty sight. I don’t know what I’d do if it was a relative of mine, but I think if it was me, I’d go for a DNR.

This isn’t an easy topic to think or talk about – especially not when you’re a younger person. But if you’re a younger person with a chronic illness (especially a serious one), it might be worth your while to discuss which treatments you want – & which ones you don’t.

Remember – if you’re over 18, your parents can advise you in treatment…but they cannot choose your treatment for you. You’re a legal adult at 18. That means that you’re the one choosing to walk in for an infusion, you’re the one filling your prescription/signing off on it, you’re the one consenting to a surgery & risks of anesthesia, you’re the one making the decisions about your life because it is your life, plain & simple.

No one really knows what they want with their life, right? It’s constantly evolving & changing. But there are some things I know I’ll never want. I want to tell my parents & ICEs that. I want to make sure that should something terrible happen to me unexpectedly, I’ll get the treatment – or non treatment – that I want & deserve, as a human being, as someone who owns their life.

For me, thinking about & discussing this topic isn’t frightening or overwhelming. It gives me a sense of calm; a sense of control. It reminds me that even in this frightening, overwhelming world where I was given an illness that I didn’t ask for, I have the controls at the end of the day. I hold them in my lap. & I will do everything I can to make my end the best one possible.

Love,

Sof ❤

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