Long-time chronic illness bears many gifts; one of them may be that we have lots of time to reflect on our life path. Many of us become excluded from family, shunned by friends and forgotten-ed by past coworkers. Grieving the loss of loved ones is part of the human journey and sometimes, this kind of loss can come at us like a tsunami. Without warning we are left stranded by the people we love most who are simply no longer there in any capacity, not because we have done something wrong but because we are ill and will likely never get better. At a certain point, we have no other option but to ask for help. We have become dependant on the kindness of others, a situation that gives way to new relationships of a different nature as we learn to be grateful for freely given help and for that which we can afford to receive.
We have become anxious, forgetful, depressed and at times angry because our life is now a constant a struggle to find any measure of relief from pain, and sometimes just to survive, even to breathe. Most people can’t or won’t have another human being in such distress in their close circle, in their life. Simple as that.
So we grieve. Our heart so broken that it seems that we can never be whole again. We watch the sun rise each day and wonder how it can be when there is such darkness in our world. We listen to the beating of our heart and wonder how much pain it can bear. “Is this it? Is this all that my life is, now?” We ask the universe. We shed more tears than we thought possible for any one person to produce and still there are more. We sleep without feeling rested. Pain is our constant companion. Grieving continues. Day after day until one morning, we sense that perhaps the slightest weight has been lifted from our heart. Breathing is somehow, miraculously, a little easier!
This is the gift of acceptance, which gives way to an ever delicate, but oh so powerful sense of peace. The tsunami has not been forgotten but the new life that has blossomed in its wake is of a malleable nature rooted in a soil rich with courage, faith and resilience. We have survived and at times, have learned to let our heart soar with mere remnants of the life we used to know.
Now, each breath offers a new opportunity to be thankful for that one, simple, life-giving gift.
See you on the path of healing and beyond! Marianne
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.
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.
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”.
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