This life of mine

by Hilla Duka


When I was a teenager, I suffered from hypnophobia: as bedtime approached, I was sure that I would die in my sleep. It didn’t worry me so much, I don’t think I’ve ever really been afraid to die, but leaving people mourning me worried me, and so I did the only rational thing my brain could come up with (well, as rational as one is capable of being as a teenager) - I refused to go to sleep. Certain in the knowledge that if I was not sleeping, I couldn’t die in my sleep, I roamed our home at night, trying desperately to stay awake, and then unfailingly falling asleep somewhere really strange - on my windowsill, at the bottom of my parents bed, at our kitchen table - anywhere that wasn’t my bed would at least be less dangerous, I felt.


My parents weren’t too happy to have a teen ghoul roaming the house in the small hours of the night, and tried everything - punishing me, bribing me… Actually, they tried pretty much everything except for asking me why I wasn’t sleeping. Eventually, I just gave up. I figured if I couldn’t make anyone understand this very real threat to me, why should I be bothered myself? And so I went to sleep, still sure that I would die in my sleep, but no longer concerned with those I would leave behind. Today, I’m not a teenager anymore, I don’t have hypnophobia, and I can never stop being concerned for those I leave behind. My fears are no longer the illogical machinations of a teenage mind, but very, very real. But then, so is my determination to fight. To survive, for as long as I can, and as well as I can.


As my children went through their fear-of-death phase, I calmly and surely told them not to worry about it yet, that it would be many years yet, before they were touched by death, and by that time they would have all the tools needed to deal with it. I told them about how my grandmother had died, old and tired of life, and how we had spoke before her death, her calmly assuring me she was ready for this and telling me not to worry. And how, even though I was sad, I had been ok with it. She was 88 when she was diagnosed with pancreatic cancer, and I didn’t want her to suffer. Her husband and almost all of her siblings and friends had already died, and she explained that she was fine with following them. And my kids calmed down, feeling sure that no death was imminent, that they were safe.


But I am not 88. I have not had the time to raise my children, to see them grow up into wonderful new adults, maybe forming new families themselves, finding their passions in life, their place. I want to be there for that. I need to be there. I am not ok with dying. Even though cancer has ravaged my body, leaving it in some places broken, and even though chemo is sometimes hell and has changed and taken so much from me, I still want this life. Even though there are days when I can hardly even get out of bed, days when sadness at the unfairness of it all consumes me, even though there is pain and aches and worries, I still want this life.


So I fight. I fight by trying to take as good care of my body as I can, trying to stay emotionally connected - to allow the hard thoughts as well as the good, positive ones. I fight by not allowing the effects of the cancer or the chemo to limit me too much, by doing things anyway. I fight by enjoying the here-and-now, counting all the things I’m grateful for in the day as I go to sleep. I fight by waking up in the morning and not focusing on where it hurts, but on the fact that I am alive, and happy to be so.


I fight to stay with my kids, with my husband, in this body, this life of mine. I know that I can only do this for so long, and eventually I have done all I can, and I can only hope that by that time, someone else has done all that they could and come up with a cure, or a new way to prolong my life. Quite like Piglet in that chapter with all the rain in Winnie the Pooh, when he’s tossed the bottle and knows he’s done all he could to save himself, and now it’s up to someone else. That’s not a likeness I would have ever thought to make - comparing myself to Piglet.


I will not be happy with five more years or ten - I want more. And if I am greedy and that is wrong, then it is only because of this: I love my life, my family, my boys, much too much to be ok with leaving.



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