Coping with Chronic Illness: Your Life Is Not Over.

I received a message asking for advice from a person who was new to chronic illness, having just found out they had late stage Lyme disease. In construing a reply, I came up with a bunch of things I wished someone had told me. For a good book to accompany you on this road, I once again recommend How To Be Sick.

The first thing I believe most people want to know when they get sick, is that their life isn’t over. You’re scared, and you think your life cannot continue unless it continues on the path you were already on before the illness arrived. I offer you my compassion.

Things ARE going to change, but I assure you, your life isn’t over. I ask you to consider that it never even paused at all. Your plans might have changed, but life is still happening, which I’m sure is evident as you watch others continue their own plans while you are forced to reconsider yours. The ultimate goal of everything we do in life is happiness for ourselves and others, so that we can enjoy ourselves and our time with loved ones, and if you’re still here, your ability to do this has changed but isn’t gone.

In the documentary film Wake Up, the wonderful mystic Llewellyn Vaughan-Lee said to the struggling man who sought his help,

“I just see the divine within you struggling to make itself known to you, and taking you on a journey IT wants to go on…which may be not the journey YOU wanted to go on, your ego-self had in mind, but is the divine journey in you beginning to manifest.”

This really, really spoke to me on a core level, even though the film is not at all about illness. I don’t necessarily believe that disease is predestined for a learning opportunity–though I absolutely know that illness and death are natural processes and not punishments–but I know I believe that the Universe can guide us through any situation so that it works out for our benefit. I think my spirit wants to get the most out of this hand it’s been dealt, and you might consider that yours does, as well. What has awoken in you is not a passing phase.

 

It’s okay to grieve the direction your life is no longer going. Just know there is more out there, and grieving is a part of joy. I repeat: Grieving is a part of joy. Don’t try to force yourself or your loved ones through the stages of grief faster than any of you can handle, and remember the process doesn’t follow a straight line.

You are going to be okay.

At first, you may be all cure cure cure. You may seek validation that your symptoms are real and try to prove it to others through research, because the people in your life may not believe you, especially if your illness is invisible. If you eventually find a cure to be unavailable, you may spend long periods of time–weeks, months, or longer–trying to find a treatment to slow down your disease; your loved ones might go through this, as well. If that doesn’t work out, still, your life is not over.

Buy yourself nice things. Don’t let anyone tell you that you don’t deserve nice things just because you’re sick or have to go on disability; this is the only life you have. Don’t wait to begin your life again “when this happens” because your life is already happening right now. The future is made from nothing more than present moments like these.

“If the present moment has peace and joy and happiness, then the future will have it also.” (Thich Nhat Hanh)

Don’t let your surroundings be drab; make sure they make you feel good. Get comfortable clothes. You probably spend more time in bed than anyone you know, so that needs to be comfortable, too. Make pain management a priority because uncontrolled pain is its own disease.

Learn to gracefully allow people to leave your life, and don’t close your heart when they go: You’ll need that open space for better people to walk into.

Be compassionate with people who don’t believe you–remind yourself that if they knew how much you were really suffering, they would never treat you that way.

It’s okay to not treat your disease, because many advanced cases are incurable. It’s okay to treat your disease by any means necessary, also. If you choose one at one point, it’s okay to change your mind. It’s okay to treat some aspects of your illness and not others. You may not have any control over the disease, but don’t let anyone–not even yourself–convince you that you’re not in control of what treatments happen to your body.

 

There are different groups in what many call the “spoonie” community, and you’re going to find where you belong, and you’ll also change groups many times. There are the advocates; the emotional caregivers; the writers and bloggers; the medical advisers, some of whom are actual physicians; the philosophers…

For the people who continue to advocate and fight for advancements in how to help us, medically, thank you, for you play a part in us being heard. For those who spend their energy enhancing their mental and/or spiritual growth, thank you, for you teach us how to live day-to-day. For those who help us navigate the scientific waters and avoid snake oil salesman, thank you, for you help us use our time and money wisely in a world where physicians may not even exist to help us. We are all in this together.

a rainbow at night

How Did It Get Like This: I was not raised to be peaceful.

I had an unexpected moment of crying earlier, after I realized I had gone back to some old habits. But what actually brought me to tears was the sudden immense gratitude I felt over having become this person I am today at all, now having the tools to change. Me, this woman who was raised with an emotional, psychological, and spiritual toolbox that could only ever possibly bring about mental and emotional distress, whose relationship with almost everything and everyone was accompanied by intense suffering… I was not raised to be peaceful.

Wildflowers

Wildflowers, photo by me

I was raised to judge, be cynical, vengeful, hold grudges, be an elitist, a perfectionist, and never to relax. Now, I am a completely different person. Like anyone, like all, I am capable of sliding back into old thoughts, habits, and behaviors… Only now, I have the awareness that makes me stop and realize when I’m not happy; the knowledge that I am worth my own happiness, worth investing in myself in all ways, and it’s OKAY not to be like everyone else. Often when you’re the first to make positive change amongst your circle, the people you thought would be happiest for you actually ostracize you more. Their ego feels it cannot tolerate you being true to yourself, trying to be better, because it makes them feel worse about the way they live their lives, and sometimes, just scared. Are there many things more heartbreaking than this?

 

I remember when it started, for me. Don’t laugh, but my internet broke for two full weeks. At a time when I had a craving for knowledge. So instead, I watched two weeks worth of spiritual programming on my television. I found all sorts of things! Among them, the realization that there were many other paths to peace than the one on which I had been raised–with a belief only in Jesus because we were born in sin. (Now, I believe in original goodness, via Buddhism. Which, by the way, is not worshipping Buddha or a belief that only Buddha can save you, for those who haven’t run across this information, yet.) The next big thing was ordering the book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernhard. Like Mara trying to mislead the Buddha, I could practically hear the voices of my family in my head:

Who are you to think you can do this? Who are you to think that you have what it takes to find your own peace by means that weren’t already taught to you? Who are you to investigate what YOU want to know instead of what people are telling you? Who are you to take your enlightenment into your own hands? Who are you to think you are worth it?

The book gave me an introduction to meditation in the form of mindfulness, which was the perfect outlet for me, personally. I don’t enjoy visualization, and I don’t enjoy posing in awkward, often-painful positions because they’re supposed to “take me higher.” But I DO enjoy pausing and simply paying attention to my life and what is happening RIGHT NOW, without a need to judge it.

 

And my life up until then was passing me by, because I was never taught to find gratitude in the present moment; I was only taught to get to the next one, and almost all of my actions AND thoughts revolved around using time efficiently. Underneath it all was the assumption that using time wisely would equate to a life well lived, but all it actually did was equate to a life that I couldn’t remember living. If you’re always living for the instant gratification and self-congratulation of “efficiently” using the moments that follow, what happens to ones you’re actually in? They’re ignored. Instead of living in your actual life, you’re living in your head about what you think could be happening next. How is the brain supposed to make memories out of your life if the only thing you give awareness to is your own mind? There was so much happening around me, but I was going through life asleep. No one wants to suffer, but we can only do what we know at that time…

The-Time-Is-Now

“Time” has the longest definition in the dictionary.

There’s a saying, if you take care of the Now, the future will take care of itself, because the future is made up of nothing but present moments. Here’s an example, for those who don’t quite get how living in the next moment leads to a life forgotten. You could be reading this half-heartedly, picking up the remote or cellphone every few minutes, distracted, wondering what you have to do tomorrow, what you need to plan in order to make that happen… But is the time to plan for later, when you’re already doing something? You can pause, and realize what you’re doing right now. You may be lying down, or sitting, Your attention is on these words and how they might apply to your life. You may be sipping a drink, cool, or warm. You may be comfortable, or uncomfortable. You might enjoy the colors on this page. You might take notice of your breath and realize it’s too quick and shallow with anxiety, and relax your body. Now what are you doing? You’re on the internet–connected to a system that is literally going to outer space and back to provide you with this very moment in time–reading an article. Who knew there was so much peace to be found right here? How has your experience changed since you began the paragraph?

 

Ironically, while writing this, I heard my mindfulness bell chime. It’s an app you can download for your mobile device (for Android or Apple) that you can set to periodically chime throughout the day, helping you remember to pause, breathe, and focus on what you’re doing in the present moment. In Toni Bernhard’s book, she has a method which includes taking comfortable breaths while you focus on one sense at a time: What do you see? What do you currently smell? What do you currently feel in your body? What do you hear?

Is there a Mara in your life, or in your head, telling you that you don’t have what it takes to live a better, more present, enjoyable, peaceful life? Asking you, Who are you to think you can do this?

I leave you with the ever-beautiful words of Ralph Marston yet again, which gave me the courage to even write this blog entry:

“Start where you are, and do what you can. Make use of what you have, in the time available to you, and there’s much you can get done.

Don’t waste your time waiting for conditions to be perfect, for they will never be. Go ahead, with things as they are, and begin making real progress.

The place to aim is as high as you can imagine. Yet the place to start is right where you are.

Let go of any concerns about not having enough time, or money, resources or anything else. Focus instead on the great value and potential of what you do have and of what you can do right now.

See the real treasure that exists in your opportunity and ability to make good, effective use of this moment. Claim that treasure by going ahead and putting forth your very best effort.

Today is your day to achieve and to make your world a better place. Start where you are, and get yourself solidly on the way to wherever you wish to be.”

a rainbow at night

Creativity and the Fear of Being Forgotten

It was about seven months ago that I made a post begging the question, What all could you do if you just changed your expectations of how to do it? And I affirmed that I was bringing out my art supplies again, because I could still paint if I relaxed the restrictive expectations I put on myself of how it needed to be done.

And thus, over the course of two months, I made this.

a piece I only previously attached to the bottom of one of my posts. quote by David Bate.

a piece I only previously attached to the bottom of one of my posts. quote by David Bate.

Then last month, I had a major epiphany.

It started as a sort of existential crisis, seeing a different butterfly on Instagram which I immediately wanted to paint…until I thought about the actual process of doing so. Then I became very drained, and I couldn’t tell if I just didn’t like painting anymore, or maybe I was just really overwhelmed by all the work it would take. Those seemed the most probable reasons. And yet…

The entire week prior to this, I’d been schooled by the Universe from every corner on the differences between who were once were and who we become. How we progress into completely different people, if we’re doing it right. Even the “us” of several years ago, we are the same, but–to pull from an episode from How I Met Your Mother–it’s as if we are our own doppelgänger, after having changed so much.

I mulled over my mysterious lack of artistic enthusiasm all day, a bit thrown off at the idea of myself, with so much talent in the field, possibly not wanting to “art” so much anymore. Do people really just stop being artists? How was it that I identified such a need to paint and yet all I felt was frustration? How was that even possible?

Then something happened that knocked me off my metaphorical feet.

 

I love dance and watching it. So there was a PBS special airing on television–Dancing at Jacob’s Pillow: Never Stand Still–and when I caught it, they said something really profound about one of the men in the business.

Ted Shawn, toward the end of his life, wrote, “It is a paradox that I, who have a strong desire for what will endure, and will be permanent, should have chosen the art form which leaves nothing but memories. And yet I am satisfied this is my medium, and my destiny.”

It was exactly what I needed to hear to tie together all my pondering of the past several days. The Universe had been preparing me to let go of who I was trying to force myself to be–just because it’s who I’d always been–and embrace all that I was now. And in the moment I turned on the television, I was receiving a wake-up call.

Hearing that segment helped me recognize I wasn’t so much being an artist, as I was clinging to the idea of being an artist to escape a common human emotion. I realized that I wanted to paint and produce art, not out of a genuine desire and love of the process, but out of fear of not leaving something behind more than memories.

That was a difficult pill to swallow, but finally everything made sense. I was frustrated because the act of painting, in that moment, was no longer about expressing joy, but controlling anxiety.

 

And maybe I’m not as much of an artist as I used to be, but I am multifaceted, as are we all. Since relieving myself of that burden and seeing things as they are instead of how I want them to be–or through the lens of fear–I also realized that over the years I’ve slowly made the transition from Artist to Writer. And I say transition because in the past I’ve always been an artist first and a writer second, but now, my creative spirit flows much more effortlessly through the medium of words. I also enjoy being an amateur photographer–the key word being enjoy. And this time, I know better than to jump from one label to the next with the implications that it will save me from the fear of being forgotten.

I have the desire to create, and I still very much enjoy painting, and photography, and writing. But doing something out of fear, is not divine.

a piece I did a few days ago, out of the blue, for fun, with random inspiration

a piece I did a few days ago, out of the blue, for fun, with random inspiration

a rainbow at night

Part 2 of 2: Your treatment options should always be YOUR choice.

What makes me even more motivated to do all of this is a situation I’m in with my pain management doctor. Words can’t express how thankful I am for his help, but the office is crowded, and sometimes they are more interested in swiftness than quality time. And generally, you’d think adequate communication to be fairly important when discussing things such as burning your nerves as a type of “treatment”?

The conversation has always been, We’ll try to numb the nerve, then if it works, we’ll burn it. Never once was I asked how I’d feel about this, or if I wanted to do it. So much so, that I nearly forgot to contemplate it, myself! And because of the side effects I got from just their “trial” shot, it would probably result in the same bizarre side effects: Never being able to recognize myself in the mirror, and never being able to keep my balance even with my eyes OPEN.

Does that sound at ALL how I want to spend what could be my last stretch of life able to truly function? NO. (I still don’t know why those odd side-effects accompanied my injection, but that’s what happened.)

 

They were very willing to work with me when I discussed how I ABSOLUTELY CANNOT have the steroids which usually accompany the nerve block/make it last longer, but I’ve had a lot of anxiety about discussing with them how I can’t take the risk of burning the nerve, mainly because I don’t want to seem like I’m not wanting to help myself. I don’t want to come across as just wanting pills and get some unwanted reputation as a pill-seeker, which, as much as pain management advocacy groups make it seem like everyone has the right to pain control, I’m sorry, but being mislabeled still happens.

Part of the reason it took me so long to seek pain management is because in the past I was always denied it at the ER. They didn’t believe me and thought I was just there for drugs because my conditions (Fibromyalgia as well, at the time) were (and still are) poorly understood. So my anxiety has stemmed from this, because what if my current doctors also don’t understand? But, I’m at the point now where I’m too frustrated with the fact that my opinion over what I want to do with my body was never even contemplated, so they will either understand, or I’ll find a new clinic.  We have to talk about how I do not want to do that to my body.

 

My point in this two-part entry, is this:

You don’t have to do what’s “expected” of you, when it comes to your health. Whether that concerns end of life care, medical treatments, or prescription options: If you want them, and you think they’re worth the risk–and they all have risks–then try to get them. But don’t feel pressured to get them just because someone else thinks it’s right, because your doctor thinks it’s right, or because other people wish they could have it, if it’s not really what YOU want for YOUR body and YOUR life.

For a long time I even felt guilt over turning down my treatment because there are people who want to get treatment, that can’t… But that doesn’t do anyone any good at all. It doesn’t make sense to kill myself with antibiotics just because someone else wishes they had any antibiotics at all.

And don’t forget to consider what it means in the long run.

Many people want to stay around for as long as possible, no matter what the cost; for their children, spouse, best friend, others who need them, without stopping to think of how those emotionally-charged decisions are actually going to affect their life. It’s worth the extra thought. Are they still getting “you” if your attempts to just stay alive rob you of your body and mind? Is it in the best interest of your values and morals? And are your morals and values in your best interest?

At what point is prolonging your being alive with the aid of modern medicine, only going to promote your suffering?

Cellphone photo #10

“I will live. we all one day will. but where’s the difference between life and living?” (Photo and text credit: Leni Tuchsen)

a rainbow at night

The Call to Stop Treating and Start Living

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 my 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 (not treating) but that I was also convinced would leave me abandoned… 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 gene mutations exists, 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; VALIDATING what my doctors tell me through my own research because I’m sorry, they just haven’t proven themselves to be competent…

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

 

The Choice of Someone with Progressive Disease to Stop Treatment

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. 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 intuiton), 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–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

 

What all could you do if you just changed your expectations of how to do it?

My art supplies have been in the largest cabinet of my six-foot-tall dresser since I moved into this house, and even in the old house, they were put away because I was too sick to do anything except extremely sporadic artwork. And I don’t believe in putting a bunch of “supposed to finish” projects out and about; I think it leads to stress. I didn’t need to stare at things that were impossible at the time, reminding me of what I couldn’t do because of the effects of being in treatment, and the limitations imposed by disease. I think the things you need to put in your immediate vision, around your workspace, are the things you’re actually going to work on.

And now it’s time to bring them out.

 

I am going to paint. I am going to convert my desk–which up until now has been used for normal desk activities–into a place for my art supplies. My white writing desk is going in the living room, and I’m bringing in my larger, flatter one to better serve my purposes. And a lamp. And a printer. But I digress…

Most won’t understand the significance of me, someone with OCD, converting their perfectly markless desk into an art station, where it will most certainly become covered in…everything.

Luna got me more watercolours.
Melissa got me more charcoal.
I just re-found my ink.

Things are not going to stay clean.

 

I can’t do art like I used to do. (Or perhaps I could, just once, but having my arms take two months to recover from such an unwise activity is just..dumb.) And you know what? That’s okay. Now I can do different things, perhaps better things. I’ve only recently begun to see the thrill of painting, and I can learn more. I just can no longer expect myself to sit down and complete a project all in one go, like I used to…

And it wasn’t bad that I did things like that. It was what I was capable of at the time. If I had a random hour of being able to sit up then I had to use it wisely and do whatever I could in that hour, because it could be months before I got that chance again. My usual daily limit of being upright was less than 30 minutes per day, which I usually needed to eat and bathe.

Long before that, I would draw for hours at a time, relax with music and my pencils and everything else faded away…

But some days I still may be able to paint for hours, like the day I made this poster for my niece, combining some ideas I saw on Tumblr:

For my niece, so she will have something to remind her that someone thought she was amazing and wonderful.

 

Other days, and probably most days, I can go back and forth between desk and bed–whether it’s a physical desk or my overbed desk–sitting up and painting for short stretches of time, and lying back down while I wait for the paper to dry between layers. (That works out, doesn’t it?) And I’m okay with having to do that.

I’m not going to stop doing things just because I can’t do them the way I used to, or the way I want. The end result is still possible, I just have to achieve it in a different way.
What do you think you could still do if you just changed your expectations of how it “needed” to be done?

 

a rainbow at night

What do you really want your good health for, anyway? (Don’t wait.)

It probably shows in my recent posts that I’ve gone through a lot of changes in the past few months, physically and mentally.

When you’re in treatment for an illness like chronic Lyme disease, ideally you have to put off certain goals or extra activities because letting your body heal is the priority. And when you have something like myalgic encephalomyelitis, you shouldn’t push yourself too much because abstaining from chronic over-exertion will give you the best long-term prognosis; repeated self-induced “crashes” will harm you.

But faced with two relapses, the possibility of another gradual decline, and the complete mental and emotional exhaustion that arises after four consecutive years of fighting for your life, I came to some big conclusions in early December:

This is the only life I have, it’s okay to make whatever decisions I think are necessary to live it, and I cannot put anything on hold anymore.

There is no longer a “things I’ll do when I get better” category in my brain. And it’s not that I don’t believe I can get better–I believe anything is a possibility.  (And how I love that word. “Possibility.” Almost as much as I love the word “indefinitely.” Indefinite possibility means, at once, what is uncertain is also limitless.) But like I said a few posts ago, even looking forward positively is still not living in the moment. You can’t get caught up in all the things you’re looking forward to having or being or doing, because you’ll miss the opportunities of the only life you actually have–the life you’re currently living.

Besides, what do you really want your good health for, anyway? I realized that many of the things I wanted to do were still possible if I just went about them a different way and stopped waiting for that imagined “better time” in the future… A future I’m not even guaranteed to get.

Would you live your dreams? Well, find some that are still achievable, and get started. If there aren’t any, create new ones. Would you spend more time with your family? You can still prioritize that, you just have to do it differently than when you were “healthy.” Would you be a better spouse/parent/friend? Don’t wait to unveil that version of yourself you’ve always imagined. They’re in there, and you can get closer to being that person moment-by-moment.

Another thing I learned is that I can’t expect people to understand where I am with this, if they haven’t been here.

My blog is (for my expression, but) less for people who are just now starting their fight than it is for people who have went a few rounds with their disease until they had to just Let It Be. I’ve had people think me delusional for their lack of understanding, just as I probably would have thought of someone like The Current Me, back when I was just starting out. And that’s okay. I hope they find this place gracefully if they also end up navigating it.

So with that in mind, I made some resolutions for this year. To be continued…

 

a rainbow at night

Christianity never helped me deal with chronic illness.

It told me–or maybe it was mostly the people involved–to “hold on to God’s promise” and that this translated to me getting what I wanted if I just “believed” hard enough.

Looking back on that now, it sounds like a bait and switch. And people are usually pretty pissed when you do the switch.

 

I realized several days ago, as I was reading something Christian-based, that I am still angry at Christianity to the point that I forget its good parts. I honestly feel that what the religion is today is a mockery of what Jesus was sent to help create, so I don’t feel disrespectful offering my opinion on NOT liking what the religion has become.

But I need to learn to focus on its core, and not judge Christianity by the actions of the people who call themselves Christians. The anger that arises in me is the whisper, telling me that I need to find forgiveness; for the brainwashing when I was at my most vulnerable; for the perception that those years were wasted on false promises when they could have been used to help me find REAL meaning instead of “if you’re sick it’s your fault for not believing in God enough.”

Forgiveness is letting go of the hope that the past could have been any different. And it’s over, so I need to move on… After I properly grieve.

 

So yes, Christianity never helped me with illness. It was judgmental. People blamed me, said I wasn’t doing something right, and that God was “allowing satan to punish” me for it.

From what I’ve seen, these are the major reasons people stop believing in any religion, especially Christianity: They are led to believe that (1) God hates them, (2) that God is punishing them for something, and (3) they can’t possibly wrap their minds around praying to anything that could “allow” so much suffering in this world… Which, from my previously Christian standpoint, did indeed make me awfully confused. But from my current, well-rounded standpoint, that I in no way achieved through the Christian religion, I understand it much, much better.

I’m a Universalist so I believe God is Love and there are infinite ways to connect to the divine. I don’t believe God, the Universe, controls our actions. It wants to lead us in the right way, toward Love, which is our true form, our connection to the Source, but it can’t stop us from hurting ourselves or others. That’s the free will part.

Many Christians I was around felt like they had to protect the image of the god in their head through bizarre logic, such as: If you believe in Him, nothing “bad” will ever happen to you. (And of course “bad” can be subjective. For example, I no longer see illness as something “bad” but as a part of life, like getting older. We all get sick eventually.) Or if something bad does happen, it’s because you weren’t doing something right, and these bad things will continue to happen until you get rid of all the “evil” in your life. I.e., Everything is your fault.

In my case, during my first years of being ill, their descriptions of the “evil” in my life were: “Stop drawing dragons, they’re symbols of the devil!”; “Someone in your household has been watching pornography!”; “Get rid of that gargoyle, it has a ~bad energy~ and it’s evil!” (I guess they forgot gargoyles are on cathedrals…); “This is a generational curse because your parents had an affair!”

It was all about letting other people tell me what I needed to do to earn their god’s love, what I had to do before He would take away this “curse” which had been bestowed upon my physical form because I wasn’t “perfect” enough to receive his mercy. (Sarcasm alert…) Because, you know, it’s so much better to have no spiritual direction and a broken soul but be physically healed, than it is to be spiritually and emotionally whole but fragile with physical illness. (…Okay, sarcasm over.)

How rarely people mention the SPIRITUAL HEALING part of that “you will be healed” promise in the Bible, instead of interpreting it as “pray and all physical illness will leave you.” With that flawed Christian-based logic, I guess Tammy Faye Bakker died from cancer because she didn’t love God enough? (Still being sarcastic, there. That’s not true at all!)

Become closer to God, closer to Love, closer to the Universal tie that connects us, and you will find healing. Perhaps not physically, but spiritually, emotionally. That is how I interpret that metaphorical promise in the bible, a book I firmly believe was intended as a metaphorical masterpiece never to be taken literally.

 

The goal of being “perfect,” especially to a judgemental human’s eyes, is completely unattainable. It will leave you struggling in self-hatred until you die because nothing will ever be enough. A belief in God is not your way out of anything negative ever happening to you.

Like the Buddhists, I believe life is suffering. Bad things do happen to good people. Hurting people hurt other people with their free will. Disease happens. Natural disasters happen. I can’t say I understand every instance of things, but I do know from those situations, with guidance, come some of the strongest people on this earth. Through all the pain comes forth a warrior. I’m one of them. And I use that strength to try to help and inspire people… So how dare anyone try to say God was “punishing” me, with the likes of something that happens to all of us.

It’s not a “one size fits all” where disease is a punishment that “shouldn’t” exist. Disease exists. If you have a body, it can and will get diseased and die. Life is a fatal condition, as the saying goes.

I think wonderful things can come from having experienced illness, and its’ timing is absolutely essential to how our lives turn out. For some, it’s the only way they are going to stop and think, about their lives, about their actions… How many near-death experiences, how many sicknesses, bring people closer to the divine and/or what’s really important to them? That’s not an accident, not in my book. Illness also profoundly affects the lives of those closest to the person who has disease.

If someone can look at me and say that God has not healed me, they’re not looking closely enough. I used to be so angry, and led by negative emotion, and torn. Nothing could have ever stopped me in my tracks like disease has…and yet, I wouldn’t change a thing if given the chance, because no other turn of events could have landed me here today. I think I’d be like so many people, going through the motions of The American Dream thinking it’d give me happiness but never finding it.

Through great suffering comes great reward. It’s not what I would have chosen for myself, but I am amazed at how it’s all come together, at the person I am and who I’m becoming.

 

People lied to me, but they didn’t know they were hurting me. They didn’t know they were blaming me for my disease because of their own desire to protect the image of god in their head; because of their inability to handle the thought of their god “allowing” illness to happen; because they saw illness as a curse to be delivered from, not a fact of life with which one copes. They didn’t know it all came from their fear of not being in control.

It reminds me of this thing I once got from a Facebook app:

“True faith flowers from and through doubt.

If you never question your beliefs, you are just a puppet dancing to somebody’s strings. If God had wanted your mindless obedience, you would’ve been created without mind and without free will. But you have both so you can come to God of your own accord. Just look at the lives of saints: Most of them had gone through a dark night of the soul, and that’s why their faith was so strong. The path to true faith always goes through doubt. So ask those questions you’ve always been afraid to ask, and find the answers. Then your faith will become unshakable.”

I’m glad I asked the questions, I’m glad I doubted, and even if I am still working on my forgiveness, I am glad I am not that which has hurt me so that I will not hurt others in the same way. And may it be so.

a rainbow at night

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

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! But I 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 in 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 changes 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