“All is well, and has been, and will be.”

[ estimated reading time: 6 minutes 26 seconds ]
This year I learned that looking forward is still looking away from the present.

Even looking forward positively, is still not living in the moment, not looking at Now. You can’t get caught up in all the things you’re looking forward to having or being, because you’ll miss the opportunities of the only life you have: The one you’re already living. It’s good to have goals! But, for some things, it is not the end result that is most important.

I’ve been noticing that now it no longer serves me to see this “attack on Lyme” as a battle to be won, where anything other than eliminating the bugs is a failure. That cannot be my focus anymore. It’s not my focus in dealing with M.E., and it cannot be my focus for dealing with neuroborreliosis, either.

I used to be okay with waking up every morning knowing I had a war to fight. Because for a while, it really was a war–beat the bartonella, do whatever I had to in order to get it under control, or it would very quickly be the end of me. And like a patient recovering from chemo and radiation, my body paid the price of all the medications needed to do that. But at least I’m still alive. I did it! I just can’t “win the war” against the Lyme that way…

I’ve had to stare reality in the face for the past several months and recognize that I may not “win the war” at all, at least not in normal standards. I have to redefine what “winning” means to me.

 

This is not a disease I can conquer forever with a few rounds of treatment. With my immunodeficiencies, very neurologically-oriented six-years untreated strain of infection, ten-year history of M.E., and twelve-year history of just trying to stay stable every single day, my body has been through a lot. So, to be perfectly honest, I may never get rid of Lyme disease. But that doesn’t mean I’m going to just let it take over.

I just can’t look at it like my goal is to “win,” where winning means nothing short of slowly eradicating the infection, because truly, why would I do that to myself? Why would I invest all my energy and focus into something that, for all intents and purposes, probably isn’t even possible anymore? Why would I do that, when there is another way, a way that brings me peace and also allows me to treat my disease?

Because that’s what I have left–I have a treatment, not a cure.

I used to think it could be a cure, because for most everyone, it is. Even if they find it late in the game, many will just have a longer battle to fight, but they can “win.” They can get IV antibiotics if their case is in their CNS, or they can at least take loads of oral antibiotics to make sure it dies and stays dead. That is possible, even for many with coinfections. But me?

Even if I could get IV antibiotics, they would probably kill me in the process; even oral antibiotics are almost impossible. (Almost.)

Maybe if Life had shown me the infection earlier, we could have cured it, even with all my additional factors. But that didn’t happen. I’m only thankful It brought information my way when It did. I am glad bartonella and mycoplasma happened, to alert me that I had something else going on that was about to irreversibly damage my body. I’m glad I am someone who pays attentions to those things, or I wouldn’t be here right now. But that’s the thing: I am still here, and I still have a life to live…even if it’s not the one I imagined!

 

I naively thought that when you go through something like this once (getting diagnosed with M.E.), twice (getting diagnosed with Lyme disease), it might be over, the whole “massive illnesses that alter the course of the rest of your life” thing…

But that wasn’t true, either. It took me almost a year to come to terms with the Lyme disease diagnosis, because inside I knew if someone like me had it, it’d probably be with me for life. I didn’t want to accept that. Then once I started getting better for a while I thought, okay, it’s not too late for me, there is still hope! And back then there was hope because it’d only gone untreated three years! And even now, I haven’t given up… But like I said, looking forward is still not looking at what you already have.

Someone shared with me a Žižek quote that pretty much sums up everything:

“Our desires are artificial, we have to be taught to desire.”

I was taught to desire an eradication and to accept nothing less. I was taught that if I did certain things, then things would work out, go the way I wanted. I fixed my focus on “I can get better again if…” and put in my head a bunch of things that could happen, should happen, that would allow me to have the life I wanted. And I went after them, like anyone would…

  • “If I eradicate the bartonella…” I did, and my reward is Life.
  • “Then I can get the Lyme disease under control…” But I cannot handle the treatments anymore.
  • “Because a lot of people with M.E. experience another remission after about ten years.” But I relapsed, instead. Twice.

 

Things didn’t go how I planned, how my doctor planned, how my friends and family planned. But my life is not over. I just have to come to terms with my new reality–a life with Myalgic encephalomyelitis, and a life with chronic relapse-remitting Lyme disease. I may eventually get a diagnosis of multiple sclerosis at this rate, but at the very least, that disease does not face the same mockery by the medical establishments (or insurance companies).

I have fought well and hard for the health I do have, and I will continue to fight to keep it, but I will not, cannot, see this as a “daily battle to win the war,” anymore. It is not. Now, it is better for me to wake up and think about my other goals, and have “treating Lyme” as just another part of my daily regimen, a part of my life that will never change just like having M.E. will never change. I cannot give away all of my spoons to treating a disease that will still be around after the fact.

“You are here, in this moment, able to do so much that’s worthwhile and fulfilling.

“Your life has real purpose, and when you let go of the superficial concerns, you can feel and know and follow that purpose. Life is beautiful, and by taking the time to look closely, you can see the beauty everywhere.

“All is well, and has been, and will be. The genuine goodness within you refuses to be compromised by any of the world’s ups and downs.”

“Go ahead, step forward, and live with total, solid confidence. Let every thought and action be filled with positive purpose and the knowledge that ultimately, you cannot fail.” (Ralph Marston)

My disclaimer: If you’re a fellow patient of Lyme, I beg of you not to take my own need for expression and use it to convince yourself that there’s no hope for you. You and your doctor can only figure out what’s best for you after a careful analysis of your individual situation. I’m not even saying there isn’t hope for me, but I’m fully aware of how some people think and thus how everything here might come across… It actually stops me from writing sometimes, but I don’t want that anymore.

Expect to see more of my uncensored thoughts in 2013, and stay strong, no matter what decisions you get to make. :)

a rainbow at night
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8 thoughts on ““All is well, and has been, and will be.”

  1. This line in particular resonated deeply for me: “I cannot give away all of my spoons to treating a disease that will still be around after the fact…” You’ve given me inspiration, helped me be a bit calmer in the knowledge that what I have to deal with (my ileostomy, my adhesion-related disorder, my auto-immune arthritis, my depression, my PTSD, and some other mysterious problem yet to be diagnosed) are not going to magically disappear if I just find the right pill or doctor or treatment. I must learn to live with them better than I have been doing, instead of secretly hoping they’ll be “fixed”, or worrying about how they will restrict and shrink my life. I need to get busy living, as well as I can, and not give up. That takes up a lot of spoons, too – the not giving up. And as you say, we don’t have any to spare, do we?

    Thanks for this post. :)

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    1. Aww, thanks for that comment! I think in developed societies we’re raised thinking that you get sick, go to the doctor, and come back with a quick cure. If there’s no cure, someone will invent a pseudocure that they swear works and try to push it on everyone…for a costly fee. Or if it doesn’t cost and just involves some other witchery and you don’t try it, well CLEARLY you just don’t WANT to get better! Don’t ya know? It’s just a bunch of mockery usually healthy people make up to convince themselves that if anything ever goes out of plan, they’ll have the solution. The rest of us have to figure out the hard way, that’s just not true. But there’s so much peace when you do realize it… At that point, the other stuff doesn’t matter anymore, because we still have Now. :)

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  2. As usual, I relate a lot to this with my mental/neurological issues. I really feel more empowered to deal with my anxiety and sensory issues and whatever else when I realise that I’m ALWAYS going to struggle with this stuff, always. I can help them, but I can’t get rid of them. I’m always going to be anxious, I’m always going to have sensory problems. I can find ways to make them better. But they won’t go away.

    It helps to view being trans that way, too… nothing will magically fix how I feel and what I struggle with regarding my body, but I can find ways to feel a lot better. Like, no, I will never be a cis guy. I’m not a cis guy. But that’s okay.

    And instead of scaring me, these thoughts make me feel like I can deal with life and I’m not a failure. Because… I think to feel like I should fight hard and eradicate them… it’s like fighting against myself… or. Something. I don’t know.

    I know none of this is the same as what you go through with Lyme, but … I still do relate to what you are saying and quoting and it is helpful to me.

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    1. You’re so sweet. It would be awful to be at war with your own anxieties, especially if the only perceived options were “eradicate all thoughts” and “lament over not being able to eradicate thoughts.” Hmm… Sounds vaguely familiar! I lived that way with the Lyme because I know what no treatment will lead to and that’s..well, that’s pretty horrifying. But I’m doing the best I can and so is my body, and I refuse to judge my body when it’s fighting every second to keep me stable. I think it’s better to appreciate that than put it down for not being what we want. ♥

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