Reaching Out for Support with a Misunderstood Illness

I was incredibly uncomfortable with the idea of posting this… So you know what that means: I must.

I wish I had companionship with other people who identified with my particular variant of living with disease. Diseases for which there are barely any doctors who can or even want to help you, for which patients have to help each other find physicians. Who have had to FIGHT to find any support because the public is so DISASTROUSLY MISINFORMED about the true nature of their illness. Who have had limited or no help from the loop of organizations that would otherwise smother you in understanding and compassion had you gotten a more acceptable or understood disease. I wish I knew of the other people whose diseases didn’t have a cure, and who had also exhausted all of their treatment options–treatments other sufferers and tiny organizations of doctors have had to figure out, mind you, because if we did things the government’s way we’d already be dead.

Where are the other people who simultaneously are so happy to be alive, valuing life immensely, yet are also exhausted with day-to-day living; who understand my uncertainty about the future because they, too, may be redirected from even having one; and the grief…oh the grief. There is no turning back this time. I grow more fatigued, more nerves die, my pain meds become stronger, and on rough days–in rough patches–the grieving is all I can handle. And it’s incredibly difficult to handle, when I feel I have no one to talk to about this who understands.

 

It’s almost impossible to find someone who’s tried the fight against late stage Lyme disease, in particular, and come to the same wall that I have: The understanding that the treatments have a greater chance of killing me than the disease itself, and that despite the severity, I stand a better chance at having a life if I let go of the engrained-need to treat and focus on the LIVING.

No, most people aware of having advanced neuroborreliosis–aware that they have ANY progressive illness, really–approach it with a “die trying” attitude, no matter what. That works for some. But I have neither time nor valuable energy to invest in a disease that cannot be treated without bringing me down with it. It’s because I’ve watched too many people ACTUALLY die trying, that I know better. I’ve experienced on my own and witnessed enough in others to know that–unlike the inspirational recoveries in Under Our Skin–some cases are too advanced to treat, and attempts to do so actually cause the disease to advance quicker because the treatments are so harsh on systems already worn down. I am one of those cases and I am not making that “mistake” again–I barely got through the first time I “woke it up.” Even attempts to gently fix the parts that are worn down have almost hospitalized me. And I don’t want to be remembered and honored for fighting a disease, I want to be remembered and honored for also living in spite of one.

 

It’s not as easy as just finding support groups for other people who are Buddhist, or have M.E., or chronic Lyme, or bartonellosis, or mycoplasmosis. I was once part of a Buddhist support group for those with illness, that tried to enforce a sense of general support instead of conversation about specific diseases. It worked very well when people followed that. But people bring with them all of their life experience and inherited coping mechanisms, for better or worse made amplified by their chronic disease, and it became difficult to even gently enforce that rule without the group splitting into camps. Not very helpful, and it just added stress.

The M.E. communities are usually full of people who don’t even have M.E., but CFS, so they don’t actually live with my symptoms or prognosis. And the only community specifically for M.E. I ever found actually barred users from even mentioning Lyme disease. It’s not my fault I got both. And since a major part of M.E. is accumulation of infections plus an inability to fight them off, causing disease progression and death, one might think it extremely important to talk about how to deal with this…? (Let’s not even get into the fact that bartonella is more of a threat to my health than Lyme, because most people don’t even know what bartonellosis IS.)

AND DON’T EVEN GET ME STARTED on the Lyme disease “support” groups. I am the horror story people use to scare others into getting treatment: Treat now, or the disease will turn into a serious, disabling condition and then it could be too late! Yeah, well…

And tell someone you’ve made the heart-wrenching–and I think very brave–decision to stop treatment, and it’s like you’ve told them you murder bunnies in your spare time. How can you do that? Don’t you know what will happen? There’s still hope, don’t “give up,” you’ve just done it all wrong, just try this, and that, and this…

I’m sorry my story scares you. No, we didn’t catch it in time. Yes, it is too late for either natural or pharmaceutical treatment to do anything (besides give me life-threatening herxheimer reactions). But my life still matters, and I still need support. And yet when I’ve reached out with a fragile heart, I’ve gotten judgment and condemnation instead.

For some reason, I had so much more support when I was still in treatment. Well, I’m still fighting for my life, I’m just doing it in a different way. 

It’s similar to when people with cancer realize they need or want to stop treatment and focus on life, and must tell everyone. It’s not always pretty, I get that. I researched a lot of support resources similar to this when I made my decision a year and a half ago, and it was extremely helpful… But I’m tired of researching help other people have gotten who aren’t me. Sometimes I don’t have energy to research support, I just want to talk to a friend who already understands what this is like and get things off my chest.

It’s essential for people with severe and especially misunderstood illness to build a support network, and the circumstances here are vital in understanding how someone experiences being sick in this way. Lately I’ve felt it particularly important to address this before things get more.. well, you know. But how?

So if you understand this post, or know someone who might relate to it, please don’t be shy about sharing, commenting, or contacting me. To everyone else, thank you for letting me share my story.

a rainbow at night

(Also: I know my posts have been very sporadic. There is still a lot I have to say about this year, but I can’t force myself to write in the order of events when the present moment is what matters most. So I will gradually catch everyone up with my new posts. If you have anything you’d like me to write about, please don’t hesitate to bring it up; some of my favourite posts have been prompted by others.)

M.E. Demonstration in San Francisco on May 12th: “30 Years of Neglect”

Today’s post comes to you with a mix of emotions. Hope. Grief. Joy. Bittersweet, if there were ever a scenario in which to feel it.

Erica Verrillo e-mailed me last week to share some important news. For this year’s awareness day on May 12th, there will be a demonstration at HHS headquarters in San Francisco to raise awareness of myalgic encephalomyelitis. The information reads as follows:

JOIN US IN SAN FRANCISCO ON MAY 12!!
 
On Monday, May 12th from noon-1PM there will be a gathering at HHS headquarters at the Federal Building (90 Seventh Street)
 
“30 Years of Neglect”
 
30 years ago the town of Incline Village, Nevada was struck with myalgic encephalomyeltitis (ME), a neurological disease that HHS derisively named “chronic fatigue syndrome.” Since then, over a million people have been struck – worldwide, between 17- 20 million. In one quarter of the cases – 250,000 people in the US – ME leaves its victims bedbound. And, it kills.
 
HOW MANY MORE MUST DIE?
 
What has HHS done in the past 30 years to prevent the spread of this disease?
Absolutely nothing. HHS has stood by while over a million people have fallen.
 
·        HHS has failed to fund research
·        HHS has failed to provide accurate information to physicians
·        HHS has actively lobbied against patient interests
 
Please join us at the Federal Building on 90 7th Street on May 12th noon – 1PM!
 
To draw attention to the fact that ME not only disables but can kill its victims, we will be displaying a line of empty wheelchairs with pictures of people who have died of ME, and we will read their obituaries.
 
Afterwards, we will go to McKesson Plaza to take our message to Dianne Feinstein. (5 blocks from Federal Building – there is a bus stop close by.)
 
This will be a peaceful demonstration. (We have a permit.) For your convenience, there is a bathroom in the café next to the Federal Building.

For more information please contact Erica at everrillo@yahoo.com

If people were diagnosed from the onset and their doctors knew that enforced rest could mean the difference between a possible remission or mild form of the disease, or permanent damage and eventual death, how many lives could be saved from this disease that still has no cure or treatment?

People with M.E. are at a great disadvantage when it comes to rallying–we’re usually too sick to do it. Rarely is there a grace period between falling ill and disease progression–every stage of M.E. is a disabling level of illness, or else we’d have raised a much larger fuss by now. But if we have weeks of planning in advance, some might be able to make it.

I never participate in “International ME/CFS/FM Awareness Day,” as I feel the loud cries of “combination advocacy” hurt us all. We just want the truth out there, but those of us with M.E. get forgotten under accusations of trying to stop progress. But we’re not. It is fact that “chronic fatigue syndrome” was an invented term for what was actually an M.E. outbreak. The CDC ignored M.E., created new criteria for diagnosis that was purposefully written to focus on chronic fatigue, and called this “new” illness “CFS.”
“The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” (Centers for Disease Control and Prevention, US)
Ever since then, government funded research into M.E. completely stopped, and everything is now poured into the world’s new definition of CFS, or some perceived mixture of both under “ME/CFS.” Because of this, research gets no where, no cause or cure can be found (how could it?), leaving scientists to think it’s all in our heads; sick children are taken from their families and into mental asylum because doctors think this “new version of M.E.” is purely psychological. And fibromyalgia may accompany M.E. just like it may accompany any other illness that damages the nervous system, but it is not ME. Worst of all, the exercise recommended for patients of “Chronic Fatigue Syndrome” and Fibromyalgia can kill or cause permanent damage to those with ME.

We need to get this information out there, but how can we if we’re too sick to be noticed? So please, share this information so more people can have a chance to show up, and let’s try to make a statement. Maybe we’ll make the news.

a rainbow at night

(Post Script: If it’s easier to share an image, download this.)

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

ME vs. CFS – They’re Not The Same! (via Documenting M.E.)

Brooke hosts this very new blog, intimately sharing her experience as a person with M.E. who is currently in hospice care, or, more bluntly put, expected to die from the disease within six months. That is her current situation, but she is also a person who loves dogs, languages, poetry, nature, and music. (I feel like I just wrote an explanation about myself, there!) I’ve enjoyed her few new posts ranging from recaps of who she is and has been, facts about the disease, and how hospice care can be of real benefit. I feel she has a valuable perspective and I expect however many entries that follow will continue to be enlightening and expressive. I also admire her idea to start something new when some might raise the idea of it being “too late”–her choice to express herself is testament that we are always, always evolving. In the entry I’ve chosen to reblog, she explains the huge detriment that calling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome” has caused patients, and how that ever came to happen.

a rainbow at night

” ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means “muscle pain and inflammation of the brain and spinal cord.” It’s a perfect fit. In 1969, the World Health Organization (WHO) recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. … There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked. “ Read more

via Documenting M.E.

Reflections on a Year Lived with Illness

Welcome to 2014. May all beings be peaceful.∞May all beings be happy.∞May all beings be well.∞May all beings be safe.∞May all beings be free from suffering.

Welcome to 2014. May all beings be peaceful.∞May all beings be happy.∞May all beings be well.∞May all beings be safe.∞May all beings be free from suffering.

I had all sorts of things planned following the end of my treatment. It delivered me a burst of energy, alongside my new-found awareness that if there was anything I wanted to do, I needed to do it now. And I had so much on my heart to do, experience, and visit. And I did them all! But I think it led me to believe there might be something wrong with me, now, for not wanting to do so much. The truth–I just realized after starting a documentary called Raw Faith–is there simply isn’t anything calling to me right now. In perfect honesty, I feel I’m being called to let go of so much. But today it hit me that, maybe that is okay! If every season is beautiful, and nature is perfect, then maybe I’m right where I’m supposed to be, and what I’m supposed to be doing right now, is just this. I’ve spent a lot of brain cells wondering if I had unintentionally turned off my intuition in the wake of so much loss from the past few months. Until today, it never occured to me that I could still be right on track, even in my supposed inactivity.

 

Last year was a mindful whirlwind. I wanted to visit close friends, revisit old friends, make new friends and visit with them, too; visit with family I’d never seen, or rarely saw; I did all of this. I wanted to get out more because I was so tired of only ever getting out for doctors… And did I!

I spent three weekends in a row in New Orleans, and for my birthday I stayed there for a week. I went to orchestras, ballets, aquariums, zoos, beaches, coffee houses, new restaurants, tea rooms, historic landmarks, stayed in “ritzy” hotels (there’s a pun, eh?) with ocean views and two-room suites, swam in water fountain pools. I saw the Dalai Lama, learned more French, took up Tai Chi, redecorated my room, sold my car for a newer one, “read” a new audiobook every month, dressed up for every holiday, spent my birthday with my best friend, fell in love and was in relationship with another friend, bought tons of flowers, ate tons of amazing food, took tons of amazing pictures, listened to tons of amazing music, and saw tons of amazing films, in theatre instead of at home.

I also slowly but surely upgraded my technology (even my bed) to better suit my ever-changing needs, from a bluetooth speaker that negates the need to get up and change CDs, to a television that’s now mounted on my bedroom wall with a resolution I can actually see and the colors of which I feel are a spiritual experience. These things made being in bed in between all of those excursions–with however much pain and relapse–much more easy to bear. I only went to the ER twice.

There was also heartache. When you begin to change, either your circle of friends changes along with you, or the Universe asks that you let them go. Not everyone is meant to stay in your life forever; most aren’t, actually. One friend and I parted ways early in the year, but it was safe to find closure, so we did. Another had patterns of making it unsafe to share my feelings, so it didn’t end with closure as I’d hoped, but I ultimately had to let them go, too. Another simply didn’t wish to find closure, and left. Two did that, actually. I had a girlfriend for several months, but it ended badly, even though I am thankful for the lessons it brought, which included a profound awareness of my own committment to authenticity, something I am entirely unwilling to sacrifice. Little did I know, I had already met the woman I would fall deeply for, afterward… ;) She and my best friend for the past thirteen years, join me in 2014.

Resting Fox

Resting Fox

I don’t expect this year to be like the former. I guess for a while I expected to have a similar desire for activity, but I don’t, and I’m okay with that now. My fatigue is so much more prominent, though my pain levels have stabilized for now. In March, a good friend and I shall attempt to drive to California to see the Redwood Forest and San Francisco. That’s my big plan for this year, but even if we only end up driving aimlessly, instead, it will be wonderful to adventure with someone who shares my appreciation of nature.

As February arrives, how has the first month of the year influenced your New Year’s resolutions? Who do you want to be for the continuing 334 days?

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

How Wrong I Was: My One-Year Anniversary Without Treatment

The Artist's Desk

Working on my latest piece; if this doesn’t say “artist’s desk” I’m not sure what does…

The other day I had an experience while having coffee with the squirrels. Well, sitting on the back porch, but same difference.

I was watching all of the animals, and listening to the birds, and feeling the gentle breeze. A chickadee, my favourite, was chirping in the midst. One might think this was a normal backyard any other day, but at that moment, it was like a sanctuary. There was so much out there: I counted at least ten species of animal within twenty minutes. And as everything just went along with its life, I was suddenly very overwhelmed with the knowledge that life always goes on. It’s humbling and frightening and comforting all at once.

When I opened the door to go outside, everything stopped to look at me. As I sat down quietly and started drinking my coffee, everything went back to its business of finding dinner and fluttering about. Their acceptance reminded me that I was also part of it all—I belonged there.

I glanced over at my house and the walls that separated my quarters from their quarters. Theirs, a tree; mine, a room and bed made from the tree. There were walls to “separate” me from the outside air and ground, protect me from danger and the harsher elements just like any other creature, but all that really separated me from those squirrels and birds and butterflies were four inches of material that the earth gave me in the first place. The stars are always above us even if all we see is a ceiling. We are part of everything. And the earth made room for me to exist, right here.

 

Then a few nights earlier, I did that thing where you open your closet to get something, and end up distracted by other things you find. Not quite Narnia, but I snatched the sweaters and shoes I’d bought earlier this year, for Autumn. Put on a hat. All on top of the dress I wore that day. Looking into my full-length mirror, witnessing how perfectly it all went together, I had a “moment.”

I felt so blessed to be able to experience this, all of this. Feeling “okay” with life, even if it is scary; wearing clothes that represent me, that I picked out instead of the clothes others had passed down to me; sharing my days with the love of my life, and being with them during both our favourite time of year; being close to my family; and miraculously having funds to take care of everything I need AND want…

It was as if the clothes were symbolic of the pieces of my life I’d chosen and changed over this year, hoping they would come together in the future, and the way they “fit,” a reminder of how my life had worked out. All my preparation–in wardrobe choices and life choices–had proved to be more perfect than I could have ever imagined. I had a distinct sense of “I made it.” My legs give out more and more lately, but I honestly didn’t even know if I’d still be walking at all, much less this well, after a year of no treatment, considering how quickly things progressed the previous times treatment failed… I just didn’t think any of this would be possible. How wrong I was. How wrong I was.

 

Today marks the first anniversary of my relapse in 2012, and the day I stopped treatment. (You know, regardless of calendar dates, Autumn has always felt like the beginning of the year, to me…)

Things AREN’T going how I thought they would. I did NOT experience remission from M.E. after ten years of living with it, like many do; I did NOT cure the bartonellosis; my pain continues to expand; I still have mycoplasmosis and I am NOT beating Lyme disease. I will NOT be going into any other treatment programs with the motive of being 100% cured of any disease. But I look at who I am now, and the people in my life, and the way I experience life, and I wonder if things could possibly be any better for someone in my situation… I really don’t think they could.

I Am Free

a rainbow at night

(PostScript: There are almost 300 of you following this blog, now. I don’t know how that happened, but thank you for being a part of this.)

I’m No Longer at War with My Body

Om (written universally as ॐ) is a mantra and mystical Sanskrit sound, sacred and important in various Dharmic religions such as Buddhism.

Today marks the 11th year of my getting the virus that triggered M.E. — 13 years total of living with chronic illness.

And I feel really good right now, emotionally. Like I’m doing everything I’m able to ensure my body will last as long as it can. I sleep enough, eat well, get proper nutrition with lots of what I need (and still am able to have things I enjoy, like ice cream). I drink a lot of water, supplement for my genetic mutations and my muscle dysfunction with the appropriate foods and pills. I have medicine to reduce the inflammation, organic plant powders for extra antioxidants, I take what I need to help out my neurotransmitters, and manage severe pain. My feet get massage to slow the neuropathy. I get whatever exercise I can without causing disease progression. I do tai chi to balance my energy and improve my strength, balance, and muscle tone. I do stretches, and walk, and a very small amount of yoga (just the poses I enjoy). Spiritual fulfillment is number one in my life and sets the stage for everything else.

 

I like taking care of myself. My eyes, my teeth, my skin. It can be a chore on some days–and some seasons, even most days–but I enjoy it. So many years I spent in a battle against my own body, trying to take care of it even as I pumped my blood full of toxic medications to fight the infections that were trying to survive within me. And because of that, I’m still here. (Ironically, they’re still here, too.)

But that season of my life has passed, and now, it feels so good to just take care of me, to really take care of me, and know that everything I put into my body and do for it is going to help it do its best for me (which in turn, is the best for others, also). Because that’s all I have left. I love the amount of self-compassion I’ve been able to harvest, particularly since being off of Lyme disease treatment.

It’s amazing after all these years, even with all of my symptoms, to finally not be at war with my body.

And even as any or all of my diseases advance, I’m not losing a fight against anything.

What do you do for your body that makes you feel good about taking care of it, so that it can take care of you to the best of its ability? How do you help it along?

 

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

My year so far, after choosing to truly Live.

Thoughtful

I’d like to start out this post with a bit of astrology, because I think it perfectly describes how my year has been thus far. (Bear with me!)

“Get ready to dig deeply in 2013, Leo. You’re going into a phase of complete and total metamorphosis. This will require considerable self-analysis and probing into your past patterns, but all the work will be more than worth it. You’re on the verge of discovering just how powerful, strong and resilient you are at your very core. If you have ever doubted your strength, after 2013 you’ll never question your resourcefulness again. Saturn, the great karmic lord of trials and tribulations, will be camping out at the base of your horoscope until 2015, so you’ll have plenty of time to delve into the depths. Family issues and psychological patterns inherited from your parents will come to the surface this year, making your more aware of — and able to avoid — negative patterns. Wake up, Leo! Get ready for a major rebirth.
Lucky Jupiter will continue to bring good fortune to your social sector and help you dream big until June. You’ve been so blessed with the amazing people you’ve met over the past year who have helped you reach your goals. The second half of the year, you may want to pull back when Jupiter enters your retreat zone. This is a time of dreaming and scheming before launching into the next chapter of your life in 2014. So the first half of the year will continue to be incredibly social, but give yourself permission to come back to a more internal and creative space during the latter part of 2013.
The eclipse patterns of 2013 will shake up both home and career sectors, so get ready for rapid advance and decline in both arenas. Don’t get too attached to any of the gains or losses in either of these life departments, as they will constantly be in flux until you reach a healthy middle ground — and you will!”

I was expecting such a popular site to conform to mainstream and just dish out stereotypical messages, but that right there sums up everything I’ve felt about this year, all the way down to the little details! In June, I even talked to my friend about finally becoming settled and just resting starting in July–after the busy first half of the year, it’s what I want, now–and even THAT is in there! Incredible. I encourage you to click and see if yours applies as much as mine does!

Lion representing the Leo sign in astrology. (...

So, if you’ve been following my journey through the year so far, you’ll know I stopped treatment for late stage Lyme disease in October of 2012. After several months of grieving, I decided I was going to truly live, because I don’t have time to wait anymore for a better day when I might feel better. I also have Myalgic encephalomyelitis, for which there is no cure, and bartonellosis, which was once cured but now has crept back out of remission. I’ve been focusing on symptom management and taking care of myself as best I can with food and whatever “exercise” I’m able to handle. Because of the incredible planning skills I’ve accumulated over the past thirteen years of chronic illness, but most importantly, proper pain management, I’ve been able to put all my spoons in one basket each month, and have incredible adventures. I attempted them even at the risk of symptom progression because realistically speaking, there will be no better time than right now. The past six months have been my surge of energy that comes from stopping toxic treatments, and I used it well.

Life is a precious gift. Don't waste it being ...

Life is a precious gift. Don’t waste it being unhappy, dissatisfied, or anything else you can be (Photo credit: @Doug88888)

In January, I met my extended family for the first time. February was pretty rough and scary, after having to be on antibiotics for a week to get my teeth cleaned, finding out I had a new genetic diagnosis, the passing of a friend, and the one year anniversary of the passing of my Dad. So most of it was spent in recovery. But I did celebrate Valentine’s, Mardi gras, and a friend’s birthday to the best of my ability. In March, a good friend came to stay with me for a month, and we had innumerable outings to parks, new restaurants, coffee shops, and a beautiful experience at the orchestra. In April I went to see a world renown dance group (my first trip to such an event in at least twelve years), sitting front row balcony because a wonderful family miraculously had a spare seat; they turned out to be the same family who was sitting behind me the night I went to see the orchestra in March! I also met two amazing local friends with whom I had several lovely visits.

In May, I went with a friend from Florida to see the Dalai Lama, and as if that weren’t enough, perused my favourite city on a vibrant Saturday night, admiring the culture and appreciating everything; I watched the sun set from the top of a seventeen-story building. My family hosted a garage sale for me and I got rid of 90% of my stuff. I went to the aquarium for the first time in seven years, with friends I haven’t seen in eight years, and some new friends. In June I went BACK to the aquarium with my family, which, if you knew how rare it was for all of us to be free at the same time, you’d understand to be something of a miracle. Then my best friend came from across the country to visit with me for a week; several times we stayed up til 5am giggling at nonsense like we were teenagers. I witnessed the historic removal of DOMA and Prop 8 from our country’s legislation. I planted sunflowers. I received a message from my all-time favourite musician via Twitter. And I rediscovered my love of electronic music.

As I said, in July I began resting, but something incredible happened, still. The love of my life, the best friend who stayed with me in June, told me she loved me, and since I’ve also been in love with her for the past year, we became a couple. ❤

love is love

love is love (Photo credit: jendubin)

Even still, each month I successfully set out to watch one new movie in theatres, “read” one new audiobook, and eat at one new restaurant. For now, I take a much-needed break, as my body tries to hold itself together after all that activity. But in August I’m going back to New Orleans for a week for my birthday, to stay with another best friend who is also coming cross-country. And in September I get to spend more time with my girlfriend as we arrange another, longer visit. After that, who knows…

But I’ve been divinely assisted in everything I’ve set out to do, and whether this year turns out to be my last truly being able to function, or just a temporary rut (however doubtful that seems), I can go forward knowing I gave it my all while I still had the chance. I know without a shadow of a doubt that I made the right decision to stop treatment and focus on having a life.

I have more to say, how symptoms are going, what happened with the doctor who wanted to erradicate some of my nerve endings… But that’s for another post. To be continued…?

 

a rainbow at night