When the thought of living is just as bad as dying

Noelle Khalila Nicolls Surviving Dialysis 15 Comments

For a split second my mother and I maintained the strong face: That defiant, fear no evil, I can do anything look you try to muster when facing the possibility of dying in three months. That moment passed quickly., and what came next was the puddle of tears.

I mean, really, what do you say when the choice you are presented with is start dialysis immediately or die in three months.

My primary doctor had given me tremendous leeway. I asked her all the time, when I would have to start dialysis and she always said, you will know. You won’t be able to explain why you feel so sick; you will just know. She was right; I couldn’t explain it, but I knew something was wrong. At the same time, I refused to pull the trigger. I just kept going and going and going, taking full advantage of the leeway she granted me. My nickname in college was Energiza for a reason.

But as the tears streamed down my face, I knew I had used up all the slack. This was do or die decision time.

It wasn’t just the dying that was terrifying; it was the living too, because dialysis felt like the absolute worse way to live. And truly, it is the worst thing you ever have to do until you actually have to do it.

People who are not on dialysis have the worse perceptions of it, and they constantly reinforce your fears about it. “That would suck. You don’t want to have to do that. Oh my gosh, no.  I hear that is horrible. No way, you have to avoid that. Being confined like that will kill you.” These thoughts were accompanied by hell no facial expressions.

I made a deliberate effort to avoid learning too much about dialysis, so the reality was, I didn’t fully understand it. But I knew it felt like another carpet being pulled from under my life’s plans (see my Steele Chronicles).  I knew it would tie me to a machine and as far as I was concerned, that would rob me of all my freedom.

It was the hardest thing to submit to any notion of being a dialysis patient.

My doctor insisted, once I started treatment I would feel better and I would reflect on the moment wondering why did I take so long. He insisted if I would just submit to the unfolding drama of my life, I would see that right around the corner was my feel good. As dire as my situation was, he was unfazed because he knew I only had to say the word and a solution was at hand.

Dialysis starts cleaning your blood immediately, so according to the theory, I just needed a few treatments to restore some balance to my body. Of course then I would have to continue. Because as fast as you come off the machine the toxins start to build up again. This is why dialysis patients have ritual four-hour treatments, three days week, every single week of their life on the machine.

I did not have my doctor’s confidence. To the contrary, I felt betrayed and hopeless.

I remember sitting by myself at the office of the anaesthesiologist filling out a form. As I worked my way through the questions – name, date of birth, allergies, medication, HIV status – the injustice just welled up inside of me. I felt like an animal snared in a trap; caught for the purpose of being caged in a zoo: alive, but defeated and depressed about my future outlook.

In the waiting room I ran into the parents of a good friend (Her father was undergoing a major surgery). Fortunately, her mother did what mummy’s do, but it only provided momentary relief.

Everything was happening so fast. I had exactly three days to come to grips with these emotions, because if I was to undergo surgery and start dialysis, I couldn’t do it in this state of mind. I couldn’t go into surgery tormented by my fears. I couldn’t submit to a healing treatment while at the same time rejecting its healing power.

I sought the comfort of a (male) friend to help me bear the weight of everything. That failed miserably. I’ll share more on that next time.

More to come as I write my way through the trauma and healing. Thank you for taking this journey with me.

Comments

comments

Comments 15

  1. My prayers are with you my dear friend as you go through your battle, I pray that you get a kidney match, may Almighty GOD keep you during your climb up this mountain know that this to will pass!

  2. Live Noelle, live to write and love and just be. My prayers are with you. You have both inspired and terrified me! Now I will stop being selfish and continue to pray for you and think life affirming thoughts for you.

  3. Hello Nicole
    Thank you for sharing your journey and automatically giving voice to this critical disease. I travelled this journey with my brother so I have a healthy respect for what you are going through. Writing is cathartic so you have already started the healing. You are from the family of the proud, the brave and the strong. God bless you and keep you and if there is anyway I can help, in a tangible way do not hesitate to ask. Be blessed.

  4. Pingback: Finally, I’m ready to share: My traumatic year dealing with kidney disease - Noelle Khalila Nicolls

  5. Thanks for sharing love. You, like my brother Brenville Hanna who also took this journey are a source of hope.
    Blessed love
    Joan

    1. Thanks for sharing love. You, like my brother Brenville Hanna who also took this journey are a source of hope.
      Blessed love
      Joan

  6. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.
    2 Corinthians 12: 10

  7. Wow. Thank you for sharing Noelle. I think my co workers need to read this. I think we would of been more sensitive to one of our colleagues who recently went on dialysis. They were extremely afraid and waited almost too long to make the decision. Thank God they finally did.

  8. My dear sistah Noelle! You have gone through so much yet you have / will persevere! I think of you often as I pass your corner 2x everyday to and from school, and I also see your mom most mornings during her morning jog :-). As I do often when I pass your corner, I will you peace, happiness (despite), strength and laser focus on regaining balance of wellness (which I know you already have :-). I’m praying for you as always my sister – I haven’t stopped by (though i’ve wanted to 🙂 because I’ve wanted to respect your space/privacy, but maybe I’ll pop by soon to give/get a hug. Take care, and may the ancestors continue to protect and watch over you as you journey through this experience which has/will bring you and many others an unimaginable inspiration! Love & Light, Rhonda

  9. I remember you from UWI and I enjoyed your domestic tourist blogs. You have a wonderful zest for life and I’m confident that you will continue to fight and to live. Sending you prayers and healing vibrations.

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