Embracing Openness

I rarely feel the sting of tears in my eyes these days. It’s not for lack of pain, not the physical kind anyway. I’ve become accustomed to aching although it wears me down at times, to the point of wishing I could wobble out into the street and scream at the top of my lungs in frustration and anger. Would anyone hear me? Would anyone care? People like to feel sorry for someone in distress so I’d probably get some tea and sympathy until it all blows over and the neighbors go back to their TV shows. Or maybe some guy would yell at me to shut up. You never know. It doesn’t make much difference in the long run. I would end up dealing with my dragon, my pain, behind closed doors.

From a young age, we were taught to keep our hurts to ourselves and to stop crying so as not to bother other people. This is especially true for boys who had to be strong. Girls were taught not to be crybabies. In many societies, crying is seen as something shameful to be avoided at all cost. That is very likely why most of us are reluctant to open up and be honest about our pain and sorrow with our friends and family. We have been conditioned to fear judgment. And, we have been conditioned to judge. It’s a cultural manifestation of our difficulty and often our inability to make authentic connections with other humans.

This disconnect begins in the home and spreads into our communities,  governments and nations. Humanity has never been more isolated as earth’s population reaches critical mass. In the modern world, the days of close community are slowly disappearing. One exception is the virtual kind of companionship and compassion one may find online among fellow sufferers and survivors of similar struggles and trauma.  However, one real, authentic human connection is a treasure beyond measure. To hold the gaze of another human, to see who they are and listen to them without judging is an experience we too often deny ourselves. We need to be heard and yet we hold on to the fear of being a burden and of being judged. Why can we not just be still? And listen? Maybe if we listened to one another, we could remain open to possibilities and access a whole new level of communication capable of healing old wounds or forging new, more fulfilling relationships.

The tears are silent in private online support groups but we hear them every day. I am often moved when someone is afraid to “waste” people’s time with their problems, something they’ve learned to avoid in the outside world. That’s when group members rally with supportive responses, love and advice; with reassurance that this person is in a safe place, that they can go ahead and rant all they want, complain at will! Group members will chime in with their own stories that validate a person’s fears or sorrow and surround them in an enormous, soft hug. Then, you can almost hear a collective sigh; another broken heart has felt heard and loved.

Wouldn’t it be nice if we could take the plunge, share thoughts, ask questions, listen and experience a real connection face to face?

Although chronic pain never sets us aside for a single moment, those managing it will tell you that a sense of humor goes a long way to make life worth living. Any excuse for a laugh is welcome and we are more than willing to share a giggle with any human who crosses our path. But just like crying, laughing for no good reason is frowned upon in the outside world, so we tend to keep our silliness among ourselves. And what a joy it is to see someone set aside their pain for a few moments long enough to share a silly cat video or a picture of their pet in a funny situation, or a joke or a story. Laughing is so very healing and needs to be done several times a day to keep us in good spirits.

Wouldn’t it be fun if we could feel free to laugh out loud with friends and family, to look at them with smiling eyes that show them that we are open to engage in silliness?

Whatever situation we encounter, when we are in the company of another person and make gentle eye contact with them, sans agenda, simply embracing openness, we give them and our self an opportunity to engage in sharing not only ideas but also a little bit of who we are under the surface.

See you on the path of healing and beyond,

Marianne

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