Chronic Snarkopolist Sometimes Sick is Ugly
It is five in the morning and I cannot sleep. Tomorrow I prepare and pack my bags to go to Atlanta and meet with my team specialists for tests and follow-ups; and some news. Frankly news I just do not wish to get even if it good news. Even the good news I do not feel I can take right now BECAUSE I WANT TO BE NORMAL. And normal people do not wait for medical news every two months.
Normal people do NORMAL people things. Like wish they could have two lovers. Or obsess about why someone does not call them back. Or maybe signup for online dating and then try it out. Normal people do not struggle with when or how to bring up their illness during dates. Normal people is such foreign concept to me I do not even know why I am attempting to explain what it is right now. I have not seen normal in so many years I would not know it if I saw it. I have not seen normal in forever. Perhaps normal never really existed.
I am over it all. I am over being sick. I no longer wish to HAVE ANY MEDICAL NEWS AT ALL. I want to take trips to cities to VISIT FRIENDS. I want to take trips to sight see. Perhaps I will even go back to see the places I have already seen and re-see them with new eyes. I want to pack my bags with something other than “what if my flight gets delayed a day or two, I will need these extra drugs to stay alive.” I want to put something besides extra medical supplies IN MY CARRYON CASE.
Many of my friends are having illness right now and need to fly across the country to see their own specialists. Some are too broke for their medical care so they are using the ER for stop-gap until they have insurance. Some are fretting about losing their COBRA and I get that too. It is odd how these things work. Another friend is on a vent and is dying soon. I might not make it back in time but our spirits go when they are ready. Life is like that. Should I leave death out of talking about chronic illness?
My new therapist recommended a book to me – “Dying Well” and asked if I thought often about my own death. And I replied, “Sometimes – but it is hard to navigate thoughts of death with the struggle to FIGHT FOR HEALTH AND LIFE. You sort of have to do one or the other and keep your focus.” I am not sure if she understood, but I bought the book anyway because I am around so much death and End of Life issues are part of my professional and personal life. Meanwhile – death is in my face too often to ignore and it sucks right now.
Sick sucks and right now I AM ANGRY ABOUT IT. So angry that last week I could only give you a fucking book review because my words were not pretty enough for print. I HAVE NO PRETTY WORDS FOR YOU. Some times sickness is so ugly and angry and fearful – this is all I can produce.
Most of my sick friends DON’T TALK ABOUT IT. They just deal with it. Some are funny- some make light of it. Many roll with it. I usually do too. But right now going back to the city I love feels like going back to where I failed. It feels like going back to everywhere I fucked up… I never made it. My city still swarms – yet I am going only to see how sick I am or if I need MORE MORE MORE treatments – MORE MORE MORE DRUGS. Can I vent MORE MORE MORE ABOUT IT to you?
I do not feel like a warrior right now. I feel like I am going home on my shield. I am fighting invisible illnesses with unknown experimental treatments. And right now I am more angry than I am hopeful. I AM NOT HAPPY OR JOYFUL. I have no words of wisdom or encouragement.
Sometimes – this is how it goes. Sometimes when people are sick THIS is what it feels like – even for the most tenured chronically ill. Sometimes you cannot sleep even with the help of modern pharmaceuticals. And sometimes you cannot FEEL GOOD – so you just allow the feelings to pass through you because you know that at least emotionally – you are functioning just fine.
It is just past five in the morning and I shall attempt to sleep. Tomorrow I will go to Atlanta and I will begin a week long team of specialists. And then I will celebrate MY LIFE by going to Dragon*Con. And maybe then I will have some pretty stories to tell you? Maybe I will come back with an attitude adjustment. Or not. Maybe sometimes we have to get used to the notion that SICK IS SOMETIMES UGLY TOO.
How about you? Are you ever so abysmally overwhelmed that you just cannot make light of it? Do you ever just need to vent? Has the overwhelm of your illness or situation felt too ugly to show to the world? I do right now. I’d love to hear your most overwhelming thoughts. I’d love to hear how you deal with them because I certainly feel too ugly for print right now. Thank you for being here.
I’ll see you next seek same time same place! Kisses!
Tags: chonic illness column, chronic illness affecting mental wellbeing, Chronic Snarkopolist Sometimes Sick is Ugly written by Melissa Travis, managing multiple chronic conditions and cancer, overcoming being chronically sick, sacrifices made by chronically ill patients, wanting to feel normal, young adults and illness, young adults with chronic illness