My Greatest Fear Is that My Parents Will Have to Lay Me to Rest

My Greatest Fear Is that My Parents Will Have to Lay Me to Rest

Death isn’t an abstract concept to me. I’m sick, and regardless of the fact that my sickness is outrageously unpredictable, my eventual descent toward passing will likely be pretty linear.

I’ve learned to accept that deteriorating health will be par for the course for someone like me, and to a certain degree, I’m OK with it. I don’t have a lot of fear for myself, and I intend to address my issues as they find me. I hold my greatest fear for my parents.

My greatest fear isn’t of the arthritis that I’ll have to endure, knowing that surfing, netball, jiujitsu, and the gym are all high-impact activities on my joints. It isn’t of the biopsies that’ll be scheduled every few years, as it’s the only way to know what’s happening in my kidneys while I chase down remission. It’s not of the time I’ve spent horizontal, lying down at the mercy of fatigue, wondering how much more I could’ve done with my life. It’s none of that.

My greatest fear is that my parents will have to bury me.

Every kid says it, but my parents truly are the greatest! I can’t imagine my life without them. If one of them were to pass, the word “devastation” wouldn’t come close to the emotion that would take over my body and overwhelm me. My relationship with both of them is so close that I already know either of their passings would be the greatest difficulty of my life.

Knowing how depression slowly tried to take over makes me worry about how deep a hole I’d fall into and how I’d manage to cope. Lupus would have a field day, as it would be the greatest stressor imaginable. I’d go into a full-blown flare, and for the first time ever, I wouldn’t have it in me to fight back.

But I’d take every moment of that pain rather than having them face laying me to rest. Parents shouldn’t have to bury their children, and yet it’s only by the grace of modern medicine that I haven’t already been laid to rest in the last two years. My kidneys were in a severe state of impairment at the time of diagnosis. Had I been born 50 years earlier, lupus would’ve had its way by now.

I’m one of three children, and our parents aren’t just there for us, they bleed for us. There hasn’t been a single moment in my battle against lupus that I haven’t felt supported. They’re not just in my corner — they’re ready to fight right beside me if I need it, and for me if I don’t have the strength to do it myself. If I needed a transplant tomorrow, they would give up a kidney for me without question. They would literally give me a chance at life a second time!

Every day for nearly two and a half years, I’ve asked the universe for three things:

  1. Remission from lupus.
  2. To let me be the one to bear the brunt of major health problems for my family.
  3. Not to leave this world before my parents.

I know the world doesn’t owe me anything. And maybe it’s selfish to ask so much of the cosmos, but I have to try.

What’s your greatest fear? Is it different than before you had lupus? Let me know in the comments below.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

4 comments

  1. Denise Brown says:

    My amazing daughter was stricken w this disease and I want you all to know her story in her own words she wrote for her collage essay. Her illness created a dream of helping children as a nurse. I will carry on her dream in my own way, Creating Awareness so that no other child or parent has to live through what we did. Brooke Passed away 10/15/2017 she was 18.
    Nov. 8th 2016

    The English language contains 1,025,109 words. Words contain significance to beholder, and can make or break you. They define people, situations, and attitudes. strength, purposefulness, and convalescent happen to be my favorite words that to define who I am, my struggles and overcomes i have achieved.

    Strength; the quality or state of being strong. Googles definition doesn’t give it the correct attributes to what strength means to me; the will to overcome and to take a situation they may brake you, and make it make you. For the past 7 years, I’ve been diagnosed with a blood condition labeled Antiphosfulipid-Syndrome. What started out as a mere stroke caused by a microscopic deep vein thrombosis has turned into an epileptic nightmare (or so you would think). As a 12 year old, you don’t fully understand the impact being in the ICU can have on your parents. Behind closed doors, down the hall in a bathroom stall, in the car, anywhere but where i could see them, they couldn’t bare to comprehend the fact that their little girl almost died, at 12. Strength, was initiated at this point in time. We got past this time span and moved on with life while putting, this behind us as a foggy memory (at least for me). Not even a year later, I find myself in the hospital once more. A 9 inch clot has decided to take over my femoral Artery which has made me inferior to its snowballing actions and unstoppable determination. 4 weeks hospitalized this year, 2 weeks the next year, 3 weeks my sophomore year, it wouldn’t stop. There was nothing in my power, my doctors abilities, or my parents protection, from the realism death could be an option. Their were times were I couldn’t bare it anymore. Always being hospitalized and watching my friends live their lives while I missed so much school, that by the time I caught back up I would fall right behind once more, laying in my lumpy butt-numbing bed, on the pediatric floor. Strength doesn’t define your physique. Foremost meat-heads, sure. It is the reason i’m still here today and my will to strive towards greatness.

    Convalescent; recovering from an illness. I wouldn’t necessarily use this as a verb, but more like an adjective. I use this word to describe my mental mindset rather than a physical overcome. At a certain point, I never thought this would end, a repetitive downward spiral of unfortunate events. Like an average mood swingin’ teenage girl, I found myself in a dark hole in the ground. Unable to crawl back up. No one could throw me a ladder to help, I refused to climb it. I spent a while in that hole, thinking over and over again why has this happened to me and why does no one understand. After a time span filled with lonely thoughts and silent suffering I decided i didn’t want to live like this. I wanted a better life for myself and the only way I could do that was for me to get over the fact that these were the cards i was dealt, and to grab that ladder, and climb all the way up to the top. The top was beautiful. Being convalescent wouldn’t make me a victim, but to make me victorious.

    Purposefulness; having or showing determination, having a useful purpose. I’ve always gone by the cliché saying “everything happens for a reason”. Why did all of this happen to me, so young and had the whole world of opportunities ahead of me? But after a while of lying in a hospital bed you start to wonder what your purpose is. What is the reason all of the has happened to you. Day in and day out you get handed different nurses, some more wanting to connect to you than others whom may think you’re just a doll they can poke and stick and not have to emotionally care about. But those who sat down with me and taught me how to shuffle a deck of cards, or cried with me, they were my purpose. They opened my heart and implanted this love that craves to be the pediatric nurse I plan to be. My purpose is to make a child happy, and forget about their pain for a little while. My purpose is to make an impact on someone else besides myself.

    I’m sure there are hundreds of other words out there i could’ve used. But these words stand out more than others. They have defined me. They have made me a strong women I have become today. These words have taught me not to just except my illness and think its an enviable situation, but to pull through to the other-side. The bright side, full of endless possibilities. Having a purpose and knowing what I may be in this world is the biggest blessing of all. It is at the peak of this triangle, wrapping it all together. Knowing what I was meant to do in this world, despite all of the setbacks I may have come across. There is something else out there for me to do, and make an impact on other lives. And the best part, this is all just the beginning.
    Brooke Brown

    • Kristiana Page says:

      Denise, I’m deeply sorry for your loss but truly honoured that you would share Brooke’s beautiful words with everyone! Sounds like she was a wonderful and brilliant girl!
      The fact that you post her words on the internet time and time again means that Brooke lives on through your actions and that you are doing so much to help spread awareness in her memory.
      From the bottom of my heart I thank-you for continuing to fight against lupus and for sharing such a special piece of writing. X

  2. Linda Thornley says:

    Dear Fellow-Lupus Sufferer,
    We are lucky to have a diagnosis, so we know that we are not hypochondriacs!!!! My siblings refuse to believe there is anything wrong with me despite the fact that i have a definitive diagnosis.
    I am indeed different now, from how I used to be: I know what I am fighting against, and I intend to beat this. I have clinically died three times, though not from SLE, so I know what death is, and it is beautiful, although dying is not.

    My life has changed drastically: I was a psychologist for 28 years, a PhD candidate, a wildlife rescuer (including rehabilitation and release), was married with two children. All of that has gone, except for my children, whom I cannot visit as they live too far away and I am unable to travel. I cannot visit my father, whom I adore, as I was unable to look after him, and ended up terrifying him when I had a “seizure” which lasted over an hour. He is now in a nursing home and I can’t afford a taxi to go and visit him. (I used to waive fees for most of my clients in accordance with my spiritual beliefs.)So life now consists of staying at home, where I live in bed and share my life with my dog and my goldfish.
    It may not sound like much of a life, but as you know, Lupus can take over your life. I have made peace with the Lupus, although I have every symptom ever attributed to SLE. It is my constant companion, although sometimes I see people from my bedroom window, whilst reading books, in large print, as it is affecting my eyes, my brain, my heart, my hands, my oesophagus, my colon, my thyroid, my adrenal glands. Surprisingly I look as healthy as a horse although the weight loss is rapid.
    I wish I could help you to get through this somehow. if you are allowed to write to me, there is no cost involved as my work here is to help souls have a happier life.
    I can pick up that you are delightful soul, who cares deeply for others, but you also have so much fear within you, and understandably so. Take your time to come to terms with your diagnosis and please do not be ashamed or embarrassed by the heavy duty drugs prescribed. Talk to your parents about your fears, as this is the way we treasure and honour those who care for us- by sharing our deepest darkest fears.

    I wish you may find peace and pleasure in some of the little things you can still do, and keep in mind, as I do that our anxiety can bring on terrible flares. I look at things around me falling apart as I can no longer fix them, but I now have a little laugh at them and think to myself, “I wonder what will happen next?” However, instead of panicking about the chaos I look at it and accept it as I cannot change it, and my concern will only make me more ill.
    Hang on to life, and try to live a moment at a time.

    Many Blessings,
    Linda

    • Kristiana Page says:

      Hey Linda,
      I’m so sorry to hear that you have so much trouble getting your family to understand what you go through with your illness! The thought of not being able to visit my Dad is crushing, I can’t even imagine what that’s like for you!
      I hope that you’re dog is as cuddly and lovey as mine giving you all the love and affection they can! Unfortunately as there is no foreseeable end to this illness we all just have to make the most of what we can, it may not be what we envisioned but attitude is everything in our battle 🙂
      I appreciate you offering your services to me and while it may appear that this is a prevalent fear in my life from my writing, it’s definitely not overbearing. Admittedly this is a darker column for me, however I can assure you that it’s not reflective of my general mental state. I have had counselling previously for various reasons and feel absolutely no shame in seeking it out if I feel that it’s required 🙂 My family is incredibly open and I have spoken to both my parents – both individually and together – about these thoughts. Life is shorter – and even shorter for some – so I know how important it is to express my feelings whilst I have the chance!
      Thank-you for writing to me, and I hope that you’ll continue to do so, if you feel that any of my columns are relatable! X

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