The Choice of Someone With Progressive Disease to Stop Treatment, Part 1 of 2: Wrestling With the Universe

the-choice-of-someone-with-progressive-disease-to-stop-treatment
[ estimated reading time: 4 mins 20 secs ]
I did not arrive at my decision lightly. I experienced… Ah, I experienced a lot. The Caring Connections organization put together a great example list of the emotions involved in living with serious illness:

Emotional changes that you may experience include:

  • Fear – about what will happen as your illness progresses, or about the future for your loved ones
  • Anger – about past treatment choices, about the change in diagnosis
  • Grief – about the losses that you have had and those to come
  • Anxiety – about making new decisions and facing new realities
  • Disbelief – about the changes that will be taking place
  • Relief – about ending difficult treatments and setting new goals for care”

They also have a list of various myths, truths, and things to remember, such as:

Myth: Accepting that this illness cannot be cured means that “nothing more can be done.”
Truth: When the focus shifts from cure to care, a great deal can be done to relieve physical pain and emotional suffering, and to ensure a good quality of life.
Remember: Have conversations with your loved ones about what you do and do not want. Designate a healthcare agent to speak for you in the event that you can no longer speak for yourself.”

I can talk about this more clearly and rationally now, after several weeks of living with my decision, but like I wrote earlier: It was anything but easy. (This entire post is quite embarrassing to write, actually.) I experienced extreme guilt for not wanting to get treatment.

Since I don’t believe in coincidence, it was difficult to figure out whether I’d learnt of the MTHFR gene mutation to get it treated so I could get back on Lyme treatment (but I thought of this more out of habit than any true desire or intuition), or to just be more aware of how I could help my body… I was living too much in the trying to find the Lesson and not enough in the living the Experience (which ultimately gives you the lesson). I heard something like that during Oprah’s Super Soul Sunday several weeks ago.

I knew I’d lose my mind if I tried to do “the Lyme fight” again.

I’m 99% sure I’d lose my mind if I fought my own body at all, at this point, to be honest.

So I didn’t know what I was “supposed” to do. I knew what I wanted, but I felt guilty for wanting it. Probably as a remnant from my more religious upbringing, I actually felt like God would be angry with me for my decision. I automatically felt like choosing to live without fighting disease, would be choosing to die, so how could The Universe possibly support me in that? I felt like I couldn’t trust myself anymore.

But that same day, the guest on Super Soul Sunday started talking about God’s Love, and it really brought me back to my core beliefs… The Universe bringing me back to Itself, surely.

It reminded me that I am not being judged. That God–whether a He, She, It, The Universe, whatever that Source may be–does NOT hold anger or negativity toward me for my decisions, that those feelings come from my interpretation and not reality. It reminded me that I could NEVER be a disappointment, and the most important of all: That there is nothing but Love and Acceptance for me; Love and Acceptance for What Is; Love and Acceptance for what I decide…

As a recovering codependent, I had to realize The God Force I believe in is not like so many humans I have known, who bestow their version of love based upon how much what I do agrees with their opinion.

Probably the craziest part of it, was that in my darkest, anxiety-ridden moment, I felt like if I made the “wrong” decision then all my suffering would be my fault and I would deserve to be punished and abandoned, for not being in alignment with “God’s will.”

Oh, thank you, gene abnormality, for helping me bring all of this to the surface and release it. Those old brainwashed ways of thinking are NOT who I am!

I was so focused on What if I make the wrong decision? that I wasn’t able to stop panicking long enough to figure out from where my suffering was arising. And I was so absorbed in assuming my thoughts were a form of escapism–I must be running from my fear of going to a new doctor, I must be terrified of the new treatments not working, I must be running from the reality of another health problem…right?–that I completely neglected the idea that turned out to be the real problem:

I was actually running from the fear of not treating, and what would happen when I did that.

Treating felt too wrong to possibly be right. But choosing to forego it is something I’ve never done. I can see now, in hindsight, this discovery WAS the lesson in itself. It wasn’t a lesson in what to do. It was a lesson in how to Not do, something I’ve never known how to.. well, do.

I had no idea how much courage it takes to let go. To be continued…

a rainbow at night

 

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11 thoughts on “The Choice of Someone With Progressive Disease to Stop Treatment, Part 1 of 2: Wrestling With the Universe

  1. Thank you. I only found your blog today and breathed more easily after I read some of it. I’ve also given up any new treatments. I take a couple of different meds for a couple of different symptoms — they help. But I’ve pretty much explored all the avenues that I’m ever going to. I’ve had 12 years of striving to ‘overcome’ this illness and now find myself at 58 just wanting to stop and smell the roses, sit on the grass under a tree, swim at the beach when I can and enjoy the time I can spend with my family.
    I’ve realized that when I was 46 and my illness hit hard I was a very ‘young’ 46. Extremely fit, healthy and active. But when I became ill I got lost in the thinking of “I can make myself well if I just see enough doctors, take enough pills, eat enough of blah… blah, push myself a bit harder.” I have done enough work, I figure, on being determined to find the elusive cure. It’s time to accept that at 58 I’m no longer young and I just want to enjoy myself as much as I can in what time I have left.
    And I’d much rather spend my money now, not on what have proved for me to be mostly fruitless medical appointments with extremely expensive specialists, but rather on all the things that I’ve neglected but make me happy. I want to make my home a peaceful, calm and attractive place to for me and my family to be and fill it again with music and books. (I’ll give the library a miss and support my local bookstore — so much easier). I want to go out and buy the clothes that I haven’t for the past 12 years because that money was being funnelled to doctors etc. I want to have a holiday. I want to spoil myself rotten (or as much as my finances will allow). I want to spoil my grandkids rotten. And I want to treat my children — buying little things I see that I think they would like. I want to do the same for my hubby.
    These are material things, but mostly what I want to offer to myself and my family is a happier person enjoying some frivolity in my life. Allowing myself to be the funny, humorous person I used to be before I got caught up in my ‘religion of cure,’ and preoccupation with how I can get well again. I nearly lost myself but now I’m back. The essential me. Changed, often hurting, but essentially me. The person who looks outward as well as inward and laps up life. I can’t charge full tilt at life anymore which is how I lived until I was 46, but I can certainly take a stroll with life, take a breath and just enjoy the luckiness of being here.

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  2. I know I’m a bit late commenting on this since I just recently discovered your amazing blog, but I had to comment and say how very much I admire you for facing your fears, making this decision, and then having the courage to write about it publicly. I know firsthand the struggle you wrote of, because I faced it too. After so long trying to treat my illness and seeing it progressively deteriorate, I was faced with the question of how far to let it go. I knew if I chose to get every treatment available, I would end up one of those people stuck in a dark quiet room in total agony, unable to speak, unable to be touched or spoken to, unable to eat, relying on feeding tubes, hydration IVs, oxygen, etc just to survive. I didn’t want that, for myself or my loved ones.
    On the other hand, I feared that choosing not to treat my illness in every way possible was choosing to die. I struggled with whether or not that equated to suicide. Funny, someone with end stage renal disease or late state cancer can make the decision to end treatment and find support from loved ones, but if someone struggling from a chronic illness that allows even less quality of life than those other diseases makes the same decision, they are criticized for “giving up” and allowing themselves to die.
    In the end, of course, we have the right to decline any treatment at any time (or to designate a power of attorney to do so, as another of your posts points out). No one has the right to tell another person they must endure more suffering than their body can naturally survive. Sometimes it is best for everyone involved to allow nature to take its course, however scary that might be. Of course, it’s also fine to want and accept treatment to stay alive as long as possible. It’s an individual choice, deciding where quality of life becomes too low to truly be considered living, much less endurable or desirable. I applaud you for your courage in making a decision like this in a society which pressures us to live as long as medicine allows. Once again, I admire your wisdom, as well as your willingness to share it with others. Thank you!

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    1. Ohhhh Brooke, don’t worry about being late to the post, what you have to say is relevant no matter when you share. ♥

      You have PERFECTLY described what we face when people like us have to make such decisions, and I thank YOU so very, very much for your validating words. Even a year from making this post and wrestling with these decisions, as you know, grief still arises, and you have brought me much peace to know that someone else understands. Thank you for your compassion, and may you also be blessed by the compassion you’ve offered yourself.

      “No one has the right to tell another person they must endure more suffering than their body can naturally survive.” This sentence is going to stay with me forever. Thank you again. xo Kit

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  3. I hope you keep on writing about this even though I do realize how difficult it must be. I don’t believe in coincidences, there was something that made me decided during this sleepless night to read your blog. It has been in my RSS reader for a long long time and occasionally I checked it.
    This is my 30th official year with ME, although I was ill for 40 years. I got severely ill in 1970 when I was 18 and never recovered. In the ’80s I finally got my diagnose of ME while living in Europe. My whole life I have been ill and busy with treatments.
    This week, 2 week in my ‘new’ treatment protocol, trying to get my 58 herbal, supplements and regular medication 5x times day into my stomach, with tears of frustration streaming down my face that they would not go down and some opened in my throat, it suddenly occurred to my that I’m 60 and have not lived at all and would probably die trying to gain some quality of life. But was that what I was doing stuffing those 58 caps plus 5x 1/2 cup Betonite and because that cause constipation 5x 1/4 Milk of Magnesium all mixed together, was that suffering worth it? Would it lead this time to living? The protocol wasn’t new, we did some form of it many many times. My stomach so full of meds that I could not enjoy a yummy vegetarian meal or my beloved espresso anymore. I knew I was on a crossing and that some new idea was forming in my unconscious. See, I get my notes from the Universe every night. Real notes and they were so to the point that it gave me chills(www.tut.com). All I could think of was and is: I want to live and being confused because I have been taught that in order to live I need treatment and kill pathogens but at the same time it’s not what I want anymore. I tried that for 30 year. Every time there are we pathogens and stubborn ones that refuse to leave and made a home in the lining of my heart. It’s time to live! But at the same time it’s so scary. I don’t know your level of functioning but I am in the 25% severe bedridden group. How much living can I do when I stop the new madness protocol? The supplements, herbs and Betonite are only stage 1. After this there will be IV’s with the newest invention, Ozone and neural therapy injections Do I want that? My whole being, and I mean my soul and spirit screams no, and my mind and body say yes, you promised you would try. Sigh.
    Like you, I have the MTHFR Gene Mutation, the bad ones. That’s why I’m so sick now, being forced to detox with huge amounts of herbs and supplements while I just can’t. You gave me lots to think over and I can hear voices chanting in my head ‘choose to live’ :-) I will do some reading and hopefully make a decision and loose the dark thoughts of suicide after that. But than what?

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    1. Hi Christine, thank you for using your spoons to take the time to write! I was very pleased to see your comment and I’m sorry it’s taken me this long to respond.

      I can only say that I hope my words inpsire you to follow your heart, because that’s the only thing that will make you happy. I have made more updates and though it was very hard to make my necessary decision, I don’t regret it… I think we have to do whatever we can live with. I would go out of my ever-loving mind if I tried to do any more treatments. It was a scary choice to make, but once I made it…

      I think we also have to question what we thought was true, and see whether it still applies to our situation. There were times when stopping my meds would have made me crumble and fall apart. I needed them based on my situation at the time. Now I stop them and feel better, because my body can now function better off of treatment than it can while ON anything. I’m focusing on things to keep me comfortable, not cure me.

      Don’t drown out that voice in your head. Like mine, it might be the voice letting you know which road is going to give you the most happiness while you’re still here…

      I leave you with a quote from Iyanla Vanzant, someone I highly respect: “Every choice we make supercedes and overrides every other choice we made.”

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  4. Wow. How powerful, how insightful, how generous of you to share your journey here!

    We do indeed walk similar paths, my friend. I made the decision quite awhile back to stay informed but to otherwise stop – just stop. I accept minimal symptomatic treatment which makes it possible for me to have as full a life as I can. I stay informed – hey I’d hate to miss that news of a miracle cure just because I opted out of an email newsletter – but that’s enough for me.

    Some have had trouble understanding that this listening closely to both my body and spirit is not a giving up, rather it’s a deeply felt, informed, and personal choice.

    For what it’s worth, I respect your decision and support whatever you know is best for you.

    I’ll also note that few decisions in life are “forever” decisions. This one can be revisited if instinct advises. In my case, there’d have to be some pretty astonishing news for that to happen, but maybe they’ll put it in an email newsletter ;)

    Peace.

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    1. I feel like I say this a lot, but if you never get tired of your generous comments I will never get tired of saying it: Thank you so much.

      These decisions were so hard to make, but they are paying off. And these words have been so difficult to share, but I know others MUST be feeling similar things, somewhere. It wasn’t easy finding information on this, especially in response to Lyme disease… Maybe someone else will have an easier time of it if they see this. *hugs back tightly* ♥

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