I’ve avoided writing for a bit, because I haven’t been in the best mental space. I try and sometimes I manage to fake it pretty well, but I made a promise to myself when my friend suggested I start blogging. I’ll always be honest, vulnerable, and tell all about those messy moments, regardless if it’s when I’m ruining a batch of soap or writing about life. So I avoided writing and hid away within myself, and hid away from my own fear as much as I could. I don’t want to take a pill to make me stop feeling this right now and to stop myself from writing. And I don’t want to hide right now.
Two Fibro sufferers (that I know of) stopped their fight. They couldn’t take this invisible disease robbing them of just one more thing, take the pain that nearly drives you insane sometimes, or take another medication that will hopefully make some invisible disease that is barely understood a little bit better. Or maybe they couldn’t stand the thought of being even more of a burden on someone they love – needing help to even wash their hair when there are only five spoons for the whole day, needing someone to make something for them to eat that their body might tolerate, and then needing that person to be their waiter and housekeeper. Maybe they couldn’t handle their messed up minds sending wrong signals and whispering horrible ideas, until one horrible idea isn’t so horrible. For whatever reason, they found their own version of dignity in death.
Another invisible disease sufferer, who has a laundry list of conditions like most of us do, is really struggling. He started out a lot healthier and stronger than I did when it hit, it has made life much harder for him than for me, and he’s younger than me. We exchange comments online sometimes, so we’re not close friends, but there’s a deep connection to other sufferers that is so different than a friend or acquaintance, that there is a strong empathy and sympathy.
I’m weeks away from turning forty and two connections are gone, while one struggles even harder, and all three are or were younger. It’s honestly messed with my mind and feelings a bit. I suddenly exchanged the biological clock of motherhood for the very loud clock of mortality. And trust me, I know how melodramatic that sounds, and even how morbid it seems, but I’m being honest. When my big relapse started, I truly thought that as long as I was careful while sick, I’d be mostly in remission by forty. I’d miss those milestones most people hit during their thirties and just delay them closer to my forties instead. That very loud ticking in the back of my mind has made me realize that those possibilities are pretty much beyond my reach now. And I’m trying to learn to be okay with that.
My jacked up mind gave me suicidal ideation most of my life (welcome to another symptom that they’re just starting to associate with us realizing there’s something wrong with our bodies before the doctors do). With the adoption journey, the breakdown, and all the work on my PTSD, I finally broke free of most of that and want to live as much as I can. I then realized that I’ve been living for remission while being afraid of the normal aspects of life, because they might make me sicker, and that would ruin my chances of remission by forty. And I wonder if those women who committed suicide gave up when they realized that they were afraid of getting sicker, too.
I wonder what “dignity in death” is to me.
I want to live. I want to live MY life, with my husband, family, and friends. I want to make and capture as many memories as I can before that clock consumes me. For a while now I’ve felt like I was so lucky to have such an eccentric and diverse life between the first onset as a child into my late twenties. I lived and experienced more than a lot of people do in their whole lives, and I’m so thankful for that.
I’m totally glad for those people that feel like their career completes them; happily, yet still a little jealous I admit, for those people who celebrate all of those beautiful moments their children experience as they grow up; and find it beautiful when a couple has weathered all life threw at them and now shuffle hand in hand down the sidewalk in the park, to their favorite bench, where they feed the birds every day that they feel well enough.
Probably deep down most of us want at least a taste of all of that. And we all mourn when terminally ill teenagers fall in love, knowing that they can’t even allow themselves to dream of wanting even a little bit of any of those lives. How many shed a tear for people who just can’t fight their hardships anymore? When did we start to judge them for not trying harder, when it’s really not so different than those terminally ill teenagers, in the end? Those people tried to live, but they were robbed of a lot of their lives and dreams, too. Some people never get to grow up, some never get to experience the easier lifestyle of first-world living, and some slowly lose every bit of themselves that they took pride in or used to do that brought them so much joy. And it sounds horrible to anyone that isn’t suffering or having to be a caregiver, but sufferers are sometimes jealous of dementia. Sometimes we long to forget what it was like to be independent, to truly live in the moment without worrying about how it’ll affect the next week, or to stop hearing the tick of that clock once it starts. It seems selfish and morbid, but there’s the glaring truth, making me want to hide from being someone who could seem so horrible, especially after working for a neurologist and watching family members succumb to the illness. I have a hard time facing that every day brings at least 15 pills into my body and brings me closer to the likelihood that I’ll be hooked up to tubes to administer my meds, not to mention to feed me, since it’s getting hard to eat, and that the bed we hoped would be Kiddo’s will probably be given away some day to make room for the rolling hospital bed that I may have to live in at some point. All while that damn clock ticks without any alarms to warn us of how much longer we have before the next step in the battle starts.
So I put a swirling pearls design scrapbook sticker around the shaft of my cane. I got an Echo Show for myself and my nieces, so I can truly see and hear them grow up until I’m too sick to want them to see me this way, started planning happy moments that I can experience with my husband while I can, and made myself be brave enough to write this. It’s one of the few times that I’m brave enough to try to explain, to leave my thoughts and feelings of my experience for those I love, and maybe even dare to hope it helps someone else in some small way.
I don’t know when that clock will tick too loud for me or where the line in the sand is for me to find my dignity in death. And I can’t say if dying naturally with all sorts of bodily failure, with my husband as my caregiver, will be my version of dignity. Or if my dignity will be a quiet moment wrapped in towels and one of his flannels, so I can envelope myself in his scent one last time, with a bottle of pills and a last conversation with God, trying to keep from being any more of a burden. It’s the one thing my illness can’t decide for me and one thing that I don’t give a fig about being judged by others about. It’s the one thing that is 100% mine. And while I can, I’ll muffle the ticking of that clock and try to live. I owe it to the part of me that keeps fighting this illness, and I owe it to every moment I get to steal despite all that has been stolen from me, and want to honor those extra moments for those that couldn’t fight anymore.