The Choice of Someone With Progressive Disease to Stop Treatment, Part 2 of 2: The Call to Start Living

[ estimated reading time: 5 mins 9 secs ]
Since making my decision, I’ve continued to be pulled in this direction, even when it scares me to think of where it might ultimately lead. So much has showed up in my life to gently guide my realization into, “It’s okay,” and I’m entering a place where I truly believe that. Otherwise, there’s no way I could have any peace at all with what I’m doing.

My family supports me, as do my closest friends. Others are unable to talk about it, which I understand for now. The latest recurrent theme popping up in my life (we’ll call them, Intuitive Affirmations from the Universe) is how much better a lot of people do after their decision to live life instead of treat disease. My most recent encounter was with a woman buying something from me. Out of no where she mentioned her father and uncle who both had cancer, and how her father only made it a year after choosing to attempt treatment, while her uncle made it two and a half after he chose to not.

And of COURSE that’s not always how it works, and people are allowed to choose whatever they think will bring them the best life and most happiness. And yet this is the story the universe brought to me, and it’s been doing that a lot, lately. I’ve also been confronted repeatedly with people in our spoonie community who have passed on, not from their disease, but from their attempts to cure it. Every time, I feel the calling in my soul that this is not how I want to go. I’ve said repeatedly that I do not want to be one of those “die trying” people. That still holds true.

All this helps reaffirm to me that I really am going to face the best outcome by doing things this way. That this way, I will have some enjoyment in life and get the most out of what life has to offer.

I mentioned before that my darkest hour was when I felt like I had to make the decision the Universe approved of, lest I be abandoned by all things good (brainwashed much?), but perhaps that wasn’t entirely accurate. I did think about suicide a lot.

It was worrisome because I’d only ever thought of it when I first got myalgic encephalomyelitis. But I don’t want to harm myself in any way! I love myself and I love my body even if it struggles to be a fully functioning body. After much introspection, it came down to me actually just wanting to be relinquished from the decision of what to do, so I wouldn’t have to feel the agony of “what if I screw up.” Again, in hindsight, I can see why I thought that. If, in that state of mind, my options were to make a decision that would leave me miserable (treating disease again), or choose what I felt to be right but which I was also convinced would leave me abandoned (not treating) … It’s in these moments I have compassion for myself having had to sort through all that.

And I did make it through.

Toward the end of it, I sat and wondered if I would regret my choice to not go into “treatment mode,” having knowledge these genetic polymorphisms exist, and having knowledge of what untreated systemic infections can and will do. Would I blame myself in the future, for not taking action right now to “fix” it? There’s only a tiny possibility it could make things better, temporarily, but it’s just another way to prolong the inevitable.

The loss of life that I would experience trying to keep up with everything involved in “fixing” this, is not worth any benefit I might gain in health, later on.

I do not want that for myself anymore.

My body has a lot of disease, and I cannot devote my precious resources into planning doctor visits; going to doctor visits; finding more doctors based on test results; researching what supplements to take and how to take them; or having to be a part-time researcher in general just to validate what my doctors tell me, because I’m sorry, they just haven’t proven themselves to be competent at all and their ignorance was almost the death of me on more than one occasion, if I hadn’t trusted my gut…

In a personal post I wrote the other day, I described this as using all my energy to prolong my life, just so I could continue on with the task of prolonging my life. Where is the actual living? I wouldn’t have time or energy to do both, and I cannot, cannot, cannot put my life on hold anymore.

Some people would be driven mad if they didn’t go into treatment mode. I was like that for, what, almost thirteen years? Now, I would be driven mad if I did. Enough is enough. A season for all things, and whatnot. (All seasons are beautiful and necessary…)

These are the most personal words I’ve ever written, the most personal things I’ve ever shared. And I share them in hopes that someone out there will benefit from it. I don’t personally know of anyone else choosing this path in response to my particular “set” of diseases, so if you happen to know of someone, please send them in my direction.

As I often do, I leave you with a quote from Ralph Marston:

“You have nothing to prove and everything to be. What matters is the truth of who you are, not the way you appear to others.

Give the honest truth of yourself, and you have no reason to strive or worry about making a good impression. Give the authentic truth of yourself, for it is the most loving, compassionate, uplifting and enabling thing you can do.

You do not have to strive against your own thoughts of limitation. Allow your unique beauty to continually unfold, and experience the power of how good and right it feels.

You do not have to be held captive by the thoughts or actions of others, or even by your perceptions of those thoughts and actions. You can allow yourself to be, positive and whole and fulfilled, now and always.

You have everything to be. Feel the miracle of your existence, and fill the world with joy.”

a rainbow at night



7 thoughts on “The Choice of Someone With Progressive Disease to Stop Treatment, Part 2 of 2: The Call to Start Living

  1. Thank you again for talking about this. I am sure you run into people who don’t understand, and I’m glad you have others who support you. I know you are an inspiration in my struggle to live my life, with my illnesses. {{hugs}}


    1. Thank you for saying I inspire you to live WITH illness, because that’s something I can be “proud” of standing for… We all get sick at some point, and we all have to live with illness at some point. I’d like people to know that you can still have a life, especially if waiting for a cure is no longer an option. ♥


  2. This post really moved me. I wish to express my love and support. Treatment choices can be so difficult when just about everyone can make you worse in some way. All we can do is listen to our heart and soul. I’m a great believer that intuition will guide us in the most positive direction. Thank you for sharing and good luck with living your life!


  3. Your words touched me. I have been chronically ill with 8 active infections and ME for probably 25 years. I have it all. And yet I have only been treating for about 5 years. The resilliance to be able to objectively make a decision that could mean loosing gained ground could feel like giving up on life, while at the same time it is starting to love and live life without zooming in on bacteria and dis-ease.
    I understand completely and share your feelings. When is it done. Never. Life will never be perfect. And yet it is perfect just as it is. Still we long to thrive for more balance and health in our body so that we can “perhaps” live forever in our “vehicle”. This is the biggest illusion and humans just cannot wrap their head around that. It’s too scary, so we all try to run away from death and keep our focus on longevity and health. Scared as we are, we don’t realize that death is life and that dying in the body, or atleast surrendering to the greater part of you that does not care about life or death in the manifest realm, actually gives absolute bliss and enables us to live in pure bliss with whatever we must carry.
    Namasté, and please know that I am with you.


    1. Testimonials like yours amaze me, Rik. I hear of “you people”–lol!–who have had this disease for 20+ years, with upwards of a dozen infections, and from my point of view, I just don’t understand how you’re still alive. I had it less than ten years, and it “only” took 3-4 bugs to attempt to take me out. Your existence is a miracle, if you ask me.

      Thank you for your beautiful message, one that I believe is full of truth. Throughout this I have discovered just how connected life and death are–when we stop basing our lives on the fear of dying, the side effect is we are no longer scared of living, either. A Japanese musical artist once said, “Nothing is impossible when you lose your fear of death,” and I don’t think I’ve ever been so acutely aware of its truth as I am recently.



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