ME and Crossroads

Decade after decade, relentless, suffocating illness marches on as we try to manage our struggles so as not to be a burden, so as not to show weakness, so as not to waste the precious time of the parade of often unhelpful doctors we’ve seen. We, the people with chronic pain and exhaustion live quietly behind closed doors while society passes us by. When we are out in the world ever so briefly, we put on a brave face and smile so that we really don’t look all that sick. Among ourselves when we share our despair and fears in our online support groups, we sometimes show our real face secure in the knowledge that we are understood and embraced.

A great number of patients, myself included, have seen close relationships end since coming down with a debilitating chronic illness. When family members and friends don’t believe that we are seriously ill or they decide that they don’t want us in their life anymore, we are faced with a grief that may take years to process.  The sorrow remains and rears its ugly head, especially on high pain days when we feel vulnerable. 

This being said, I feel that the lack of understanding of our plight by the public at large and by the medical community cannot rest solely on the shoulders of others. Each of us has a fair measure of responsibility for our life circumstances.  This is not to say that we are at fault. Responsibility and guilt are two very different concepts.

It is when the illness is at its worse that I tend to let guilt tighten my gut and my heart. My mind asks: What could I have done differently? What if I had said this, maybe this person would still be my friend. What if I had forgiven my mother sooner, maybe I wouldn’t be sick? Maybe if, if, if,….? There are so many crossroads in one’s life that we could spend the rest of our time on earth trying to figure where we went wrong! But here’s the good news: There is no wrong turn. Whatever choice I have made in my life was the right one. It was the best I knew to make at the time and the path it led to was my path, the one I needed to travel. Where I am right now is exactly where I am supposed to be! This is universal Law.

As I allow that thought to sink in, I see that I can let go of my dissatisfaction toward my life situation and the guilt associated with it. I can take a few deep breaths and observe my path from the perspective of the traveler who has gone a long way on the road of life, learning through experience, growing and ever more certain of her purpose.

Now you may ask if there could possibly be a purpose to being ill for so long. Perhaps it has to do with taking responsibility for how we feel about our situation, about how others treat us or about a number of things over which we have no control. I know, it’s a big one. And it all comes back to a teaching I like to fall back on: The present moment. It is only in the NOW that we can find peace, that we can find who we are, and yes, even our purpose. There really IS no time like the present.

Whenever I feel victimized by another person’s behavior, I am in the past. When I am afraid of what is to become of me as I age with this illness, I am in the future. No anguish can exist in the present moment unless there is an actual life-threatening emergency; and when it’s over, it’s over. Another now follows, and another, and so on.  Our life path is a series of steps, a series of now.

Taking responsibility for my life means I choose to assess my life situation without judgment or attributing blame. It is what it is. It is quite a relief to let go of frustration and anger when I realize that what is happening to me is nobody’s fault! No one got up this morning and thought: “Let’s see, how can I make Marianne’s life miserable”… The world really doesn’t work that way.

I’ve met people online with ME/FM and other serious chronic illnesses who have found simple, creative ways to maintain focus on the delights of the present moment in the middle of tremendous adversity. One very ill and disabled lady has made it her purpose to send personal, cheerful messages to hundreds of her contacts who are going through emotionally challenging difficulties; everyday, she sends hope, support and love to many who may feel forgotten. Another woman (also very ill and battling homelessness) relentlessly forges onward as her friends follow her journey and pray for her safety. She openly shares her terrible loneliness, and the next day she describes in vivid detail the breathtaking beauty of an autumn sunset in the forest. The following morning we can almost feel the comfort of that warm space she has worked so hard to make for herself as she savors the moment with a photo of her hand wrapped around a mug of hot coco.

These are just two of the many people who inspire me as I also travel a path that is of my making and that I can transform one step at a time.

Each of us is here to grow through experience and to learn life lessons. The universe provides us with needed opportunities. The rest is up to us.

See you where all paths become One,

Marianne

When M.E. prevents us from fulfilling our dreams

Illness has been a big part of my daily life for nearly two decades during which I reluctantly let go of most of the dreams I had for myself. In my forties, one of the dreams I cherished was to continue moving forward in my career. 

I have lived like an elderly person way before my time. Having just reached the age of 65, it has now become a harsh reality that most healthy 90 year olds could trot circles around me. This is what ME has done to my body and in its wake, this illness has taken even the most modest dreams that remained in my heart. As I search the deep recesses of my being, I find that I do still dream of becoming a successful screenwriter but, if I’m realistic, fulfilling this ardent long-time wish has become pretty much out of reach. ME had confined me to a space and a pace where me and my one treasured, “winning” screenplay are hidden away. I am out of touch with a world I can only see from the sidelines and this sometimes makes me feel sad and angry.

I can still dream of dipping my toes in the ocean, of glamour camping in the woods, of getting pampered at a spa for a few days or climbing to a mountain top but I am well aware that it would also take a miracle for these to happen. Some would say that I am being negative, that anything can manifest itself. I used to be one of those people and I still am to some degree. But at this point, there are too many hugs and birthdays I’ve missed as my grandchildren grow up, too many quiet Holidays spent at home while the family assembles without me, too many days gone by feeling like a hermit, too many heartaches caused by pain and isolation. I just can’t find it in me to let dreams bring more disappointment.

As I sit there, staring down the Dragon, I feel it has won another piece of my life: After all, people who can’t dare to dream are no longer young at heart. Huh. That can’t be right, can it? I’m not dead yet!

Oh, how the Dragon pushes my buttons, ever spurring me on to find the last fiber of inner strength I can muster, not only to go on another day but also to make it a better one. I want to punch it in the snout! Often. I know…It would only make me feel worse.

There is no other reasonable recourse but to allow myself a few sweet, attainable dreams, like the promise of fall foliage that I will soon enjoy if only from my window or maybe during a short walk with my dog. I can dream of the Star Wars movie I’ll be seeing at Christmas with my husband (and earplugs!).

As for bigger dreams, I keep a quote on hand because when doubt creeps in, it gives me the courage to keep on believing in them. I don’t know who wrote it but it’s brilliant: “Give thanks for unknown Blessings already on their way”.

See you on the path of healing and beyond,

Marianne

Actually, it is all in my head

In eighteen years of living with chronic illness, I’ve never explicitly been told that my many symptoms of ME (and Fibro) are “all in my head”. The truth is that after seeking help from over twenty-five doctors, some specializing in neurology, rheumatology, psychiatry, immunology, cardiology and other fields of medicine, not ONCE have I felt that I was taken seriously except for the now retired endocrinologist who diagnosed me in 2004. While some of these doctors demonstrated understanding at first, their demeanor changed over time as I showed signs that I wanted to be a partner in my health care and, most irritatingly, that I was well informed about my condition.

It turns out that the great majority of physicians don’t want their patients to be partners. I’ve often heard: “I’m the doctor here…” A statement meant to put me in my place of submission toward a knowledge greater than mine. The only problem is this: (As many patients of a long-time chronic illness like ME know full well.) When in a room with most doctors, the expert on the illness in question is the patient!

As the doctor feels less and less able to alleviate a myriad of symptoms, and he is unable to explain why some medications simply don’t work or why the illness is incurable, he starts to build up his own self-esteem by knocking down that of the patient.  I remember a time when I left a specialist’s office with some sense of hope. Then, I began to work on raising awareness by handing out published papers, articles from reputable sources and even the film: Unrest. Some physicians showed a mild interest, and some pushed the material back toward me. But what is evident is that the few I now see – with less frequency – usually cut me short and show clear signs that they want me out of their office. Some literally tell me that they have seriously ill patients waiting while I’m talking about things they can do nothing about! “Am I not seriously ill?” I ask.  I usually get a response that goes something like this: “Oh, I have no doubt that you’re in pain and tired, but your tests are not that bad; I’m not worried, try to relax and think about something else besides your illness.”

At this point, I leave because I feel totally defeated and beyond angry. As I slowly walk to the car, I think: I now know that my brain is inflamed, damaged and misfiring continuous pain signals. Yes, doctor, it IS all in my head!

Recent studies are demonstrating the science at the root of this statement. There is no doubt today that the brain of patients with ME shows damaged areas. There is no excuse for doctors to dismiss us based on their refusal to do a bit of reading to educate themselves. This is unacceptable. Treating a person like an annoyance because they don’t know how to help them is not practicing medicine, it’s practicing ignorance that causes millions of people, years of unspeakable misery. What happened to: First do no harm?

ME is recognized worldwide as a neuro-immune disease that is as serious as MS, Polio, Cancer and AIDS. Look – it – up!!!

Almost every day, I read in support groups, about a person with a serious chronic illness being told: “It’s all in your head” before being sent home with anti-depressants.  It is so disheartening for anyone to encounter such nonsense. But now that I think of it, is it nonsense? NO.

The nonsense is the ignorance and the judgmental lack of care that ensues.   If they are to do their job, our doctors need to seriously open their mind to the fact that when it comes to neuro-immune illness, it really IS all in our head!

See you on the path of healing and beyond,

Marianne

Image: Gordon Johnson / Pixabay

Why my body is my best ally

I’ve long been searching for answers to the great mysteries of the human condition. In my early twenties, I discovered written wisdom from others who had traveled on the path of enlightenment before me. It was then I that I first experienced inner yearnings to outwardly express my real Self.

For many years, I felt driven to live life to its fullest, enjoying my work as well as raising my children. I had friends and a fairly good health that allowed me to pursue my favorite sports and other enjoyable activities. Then, I suddenly became very ill. Living a “normal” life became impossible because doing anything normal made me even sicker.

For almost 18 years, ME has challenged me to find ways to, not only cope, but also actually live with a new frame of mind. All the ways I previously knew to express my real identity had vanished. I wondered where the real me had gone… Had it drowned in all that sorrow of loneliness and pain that became my daily fare? How was it even possible to be myself and express my identity if not through my roles or occupations? I was disoriented, drifting.

I still felt my soul prompting me to look inside for the answers to questions I had not previously known, existed. I was hurting, sad, angry. The only thing I could do was to learn to breathe and relax in this context. I used the tools I had gathered over time and did the best I could. Still, I felt miserable. Much forgiveness had to be given freely, to others and to myself in the middle of the darkest time of my life. That’s when I had an epiphany of sorts.

Through years of breathing periods of quiet time (call it meditation), I realized that:

1. I am not a warrior
2. My body has not betrayed me
3. My body has not let me down

When I conjured up the metaphor of a Dragon in my first book, it represented the overwhelming amount of space that illness occupied in my world. Naturally, it was obvious to me that fighting a Dragon was out of the question. If a warrior can’t muster up the strength to brush her teeth, how can she/he be up for such an epic battle? So, logically, I put aside all thoughts of fighting illness and began to approach my situation with a fresh perspective.

As much as illness is inside it, I chose not to make that a reason to make my body a battleground in my mind. I now thank my body for all the hard work it is doing just to keep me alive. In those terrible times of air hunger brought on by crashes, I learned to appreciate my lungs for allowing me to take in what I so badly need. Visualizing mitochondria knocking down a few barriers, I give my cells encouragement to welcome vital nutrients, glucose and oxygen so that they can do their work more efficiently. When my muscles ache, I send them love and soothe them as best I can. And when my body is out of “spoons” after doing what is seemingly very little activity, I acknowledge its efforts and give thanks.

Do I always succeed in “cheering” on my body? I don’t. Some days take a toll on my morale and I give in to discouragement.  In those moments when I want to hide from the Dragon, he inevitably finds me. As much as I’d sometimes like to punch him in the snout, I choose to silently look at my challenges as just that, challenges.

Taking stock of my survival skills and tools as well as the blessings that give me the courage to go on another day, brings me the peace I crave. One of those most welcomed blessings is my commitment to trust my body and the Force that created it; this Force that is life giving and healing! All I have to do to let healing flow through all of my being is to get (my ego) out of my own way.

I surrender to the thought that “I” am not this body. My true self is consciousness traveling in a world that is part of a universe of incomprehensible vastness that the human mind cannot fathom. I am. My body is my ride. Granted it’s a high maintenance one but it’s the only one I’ve got. For now.

See you on the path of healing and beyond,

Marianne

You can visit me at mariannegranger.com for audio blogs and more.

Image: Integral Life/Unbound Body

As I age with M.E.

In my forties I was moving forward fulfilling my drive to be a community organizer/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren was a part of growing old that I welcomed along with coloring books, card games and baking sessions where I’d let them lick the spoon. 

Getting older was to be a time when laughter would come more easily as I learned to not take myself so seriously, to go with the flow, to explore new ways of enjoying life. I dreamed of finally pitching my screenplay to an interested and able producer, I dreamed of taking my grand-kids out for ice cream and engaging in general silliness that parents don’t always have time to indulge. Taking road trips, mini-vacations, going to lunch with friends, having folks over for potluck dinners, visiting museums in the city, witnessing graduations; all that seemed pretty tame and within reach during my golden years. The only extravagant item on my bucket list was to spend a week in New York and see a few Broadway plays. OK, a really extravagant dream was to visit Harry Potter World. Apparently, one can get old and remain a nerd! 

Illness has been a big part of my daily life for nearly two decades and at 64 years old, I have had to let go of the dreams I had for myself. The journey of reconciliation with life in a body that aged way before its time is not an easy one. After experiencing the known stages of grief over several years, I came out the other side feeling weaker and more physically fragile than I could have imagined.

The most difficult part of aging with ME is that loved ones become accustomed to my not feeling well. This of course, because they have no idea just how desperately ill I really am.  It is my doing, I know, because they never see me when I’m actually bed bound. Having to be “my own doctor” is another reality that becomes harsher as I age. This, because actual doctors with diplomas on their office walls have no idea of how desperately ill I am! NOT my doing but what can I do but go on as best I can? I endlessly research and participate in raising awareness in the hope that more people will put pressure on governments to allocate funds for medical research aimed at finding a cure (or even adequate treatments) for this Dragon.

Getting older when one is ill requires increasing help from family, friends and the community. Isolation makes getting help for daily needs more difficult in this day and age. It’s easy to let fear point to a not so distant future where I will be unable to care for myself—at all. I don’t want to look that far ahead, so I work everyday to look at this present day alone. No further.

To me, aging with ME means to simply, in the words of the Beatles: Let It Be.  I’ve let go of expectations from myself and from others. The best person to care for my heart and soul is me, and I believe that choosing to let things and people “be” is a good way to feel at peace with what is. After all, what is the point of getting old if one doesn’t allow wisdom to grow, to make us stronger in the face of adversity and to serenely welcome the uncertainty that is life? Isn’t it fascinating that most of us seniors have discovered that we don’t have all the answers, unlike when we were younger adults?

As I age with ME, I feel free to not know who I am or what role I am supposed to fill. I’m content to just be the best version of myself. When I can.

See you on the path of healing and beyond,

Marianne

Image: pexels.com

The Colors of Perception

Experiencing chronic illness for almost two decades provides a person with the luxury of time for giving much thought to the meaning of life, relationships and the world. Somewhere between a nasty flu and imminent death is a space where I live my life every day, year after year, never getting “over it”. As I witness the world around me from this vantage point, I learn how few things we really need to just be, to just live.

Long ago, I decided to let the emotions I experience manifest themselves without judging whether I should or shouldn’t be feeling the way I do. I am not a negative person when I’m feeling frustrated and this frustration doesn’t take away anything from who I am. I am not a positive person when I’m feeling empathy; it is just another facet of my being. Any heart can hold the entire universe if it so wishes.

I recently became aware that several emotions, for lack of a better word, live side by side in the deepest recesses of my heart. In daily existence, we are subjected to feelings that are the result of our thought process, which defines what is acceptable to us, what is “good” or “bad”. All this, based on our perception of the world according to our individual experience. 

There are many people out there who want us to think that “negative” emotions can be expulsed from our being through a myriad of techniques and that the “positive” can grow to fill our heart with bliss, leaving no room for the nasty stuff.  I beg to differ with this over simplistic view of our inner universe. I have known people who proclaim that they are “pure joy”. Joy, joy, joy is their perceived personal identity until… you do or say something that offends them. These days, it’s easy to offend. 

If you prefer one political view to another, or you pray to a God differently from another, you love differently, you prefer the city to the country, or you’re vegan …, our differences are endless so you’re very likely to offend someone, especially those who pride themselves in being joy incarnated. They are first to shut you out of their life because you’re, well, negative, resentful, even disrespectful. This is strange to me because I am in fact the same person who was so lovable until I expressed something that was not shared by such a joyful, dare I say, “friend”.

It is a challenge to face such situations while remaining aware that each of us sees the world as we are and not as it actually is. To be honest, I cringe when I see hostile comments about a group of people who think differently from another group. How can we possibly know an entire group when we can barely penetrate the inner world of one single individual, even if that individual is our self?

Am I joy? Yes. Your life choices may affect how I momentarily perceive joy, if you hurt me or give me a loving hug, but what lives in my heart doesn’t depend on what views you express. If I embrace my own opinions or emotions as unique then there’s nothing preventing me from seeing your views as an expression of your own unique life experience. 

The human heart can paint the world in colors that can create rainbows of joy or dissolve into dark pools of sorrow. We are the masters of all that we hold in our heart and our canvas spreads farther than we can ever imagine. Kindness has a nice color, don’t you think?

See you on the path of healing and beyond,

Marianne

The end of Blissful Unawareness

This is the life!

I stretch my whole body with delight.

I don’t have a care in the world because I deserve this.

I matter.

I am important.

I’ve suffered enough.

I put myself first.

I don’t care about politics.

I don’t know who shot whom on this day.

Is the earth burning or freezing?

I don’t want to think about that.

I just want to feel good.

Two more species have gone extinct today?

Don’t know.

Some idiot’s hand is caressing a nuclear weapon launch sequence button?

Makes no difference to me.

Not my problem.

A nice steward brings me lemonade.

Lunch is coming soon.

This is so enjoyable!

Frightened children are starving?

That’s nothing new.

Desperately ill people are homeless, you say.

Sleeping in their car, you say.

There’s nothing I can do about it.

I can’t help.

I do what is right for me.

If I don’t take care of myself, no one will.

Let’s just enjoy the day.

Forget about everything else.

I love this deck chair.

So cozy, so comfy.

Let others worry about the world.

The sun soothes my light-starved skin. Hungering for fresh air, I take in as much of it as my lungs will allow. Every time I exhale renews a sense of freedom within me. Eyes closed behind my sunglasses, I can see the shimmering waters play with the sun as they morph into a myriad of delightful colors and shapes. My brow is relaxed and the few drops of sweat my skin exudes are just enough to be refreshing.

Yes, this is the life.

No point in feeling sorry for anybody.

I deserve the best and I’ve got it right here on the TITANIC.

May compassion win out over selfishness and may Love heal our World in time.

Marianne