Tag Archive | mental illness

May I Decide For You?

equal heart

Why do we profess to know what’s best for others? Especially loved ones? Is it because we think we know them intimately more than they even know themselves? This is something that often happens with those battling chronic illness and daily limitations.

Our loved ones, out of fear of pushing us too far (IE: making us “sicker”), make decisions based on our well-being without ever consulting us. Many times, these decisions are made behind closed minds, during the pre-conversation/contemplation phase and we never even know different possibilities existed. And because they are never presented to us, we are never given the opportunity to make our own choices (and, yes, even mistakes).

The decision has already been made for us, under the guise of “loving-kindness.” I know that I have been on the receiving end of this kind of decision making multiple times, especially from my husband. My most recent example occurred in an interaction with a dear friend:

Over the last couple years, I have been mentoring this friend. I was, from the beginning, clear and honest about my physical time limitations but committed to communicating in alternative ways; and asked that if our relationship agreement ever stopped working because of these restrictive parameters, she not hesitate to approach me about her changing needs. We went into the partnership with what I thought was an equal agreement. Then, just a few days back, she abruptly let me know that our arrangement was no longer working and she had already found another mentor.

As much as I respect her needs, I was taken aback by the one-sided decision making. When pressed, she explained that she honors the physical place that I am in and would never want to put un-due pressure on me. So she found someone more “well-bodied” and flexible with their schedule. She thought she was coming from a place of loving-kindness.

But, in fact, she took equality right out of our equation. Out of concern for pressuring me, she took away my opportunity to know and express what is right for me. To check in with my own body and decide whether I could do more to meet her needs or not.

What was removed from our relationship was trust in the other person to know themselves, and respect for whatever decision they make. Regardless of our own opinion.

Let me highlight some ways we all do this in relationships:
– Our partner gets anxious in social situations, so we avoid telling them about upcoming engagements until the last minute, so they don’t unduly fret.
– Our parent worries when we travel, so we hide trips from them until we get home, as not to overly stress them.
– We have friends who have chosen to no longer drink, so we don’t invite them to events where there will be a lot of “celebrating,” so they won’t be tempted.
– A co-worker tends to react strongly when asked to do a project, so instead of giving them the chance to process and respond, we just do everything ourselves to avoid a possible conflict.

We tell ourselves “loving-kindness” stories: “I don’t want this (person I care for) to feel bad/sad/disappointed/stressed/worried…” We’ve already analyzed the situation in our heads, come to the conclusion of how the choice will negatively affect the other person, how they will respond, and what we will do to avoid this.

But, remember, when you make a choice for a loved one, you are no longer looking at them as an equal.

Those of us with chronic illness often struggle with feelings of being “less-than” (as many well-bodied folks do, too!). We already have to limit so many facets of our daily lives. But, we can still make conscious, thoughtful decisions for ourselves.

Doesn’t every adult want to be perceived as trustworthy of their own truth?

And the thing is. . .

We very well may make poor decisions! We may over-commit which over-taxes our bodies or minds.

BUT… that’s how we learn. How much is too much. And how much is just right.

If the right to make our own choices is removed, we are never able to find the balance on our own.

One of the worst things, is discovering after the fact that you could have been a participant in the decision making process, and that was taken away from you. It’s way worse to learn later that a group of friends went out dancing but didn’t invite you only because they didn’t want you to feel bad because your body is ill-equipped to dance right now. A much better scenario is to be given that choice and decide whether you want to sit and watch at the club or if it’s better to stay home, but it sure felt nice to be including in the invite!

So, next time you find yourself making a pre-emptive decision for another out of loving-kindness, try for a different approach:
– Tell that person about the choice and kindly express your concerns for their well-being.
– Let them know you trust them to make the right decision for themselves in that moment.
– Remind them that you’ll support whatever choice they make; and will give them the respect of keeping lines of communication and gentle observation open.

In all interactions, remember that a partnership means that each party is on equal ground.

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Let Corage and Hope Take On a Life of Their Own

Hope and Courage quote mobama

Courage and hope have carried me through a multitude of challenges. So much so that they truly have taken on a life of their own. They are my manifesto – they are my legacy.

Recently, a dear friend challenged me to expand on this theory. She is currently struggling with a flare in her chronic illness. And as I listened to her process, I heard resistance. Resistance of what is and what this means to her life right now (cancelling plans, making accommodations). And all this resisting has served is to turn her down a road with only one clear direction: FEAR.

I get this. I’ve been there. I think we all have at one point.

But when she reached out to me and asked me how I can calmly “label and describe” my current medical situation without any attachment, I felt poorly equipped with the words to help her. Until I read the above quote…

I realized that as soon as I put on my Cowardly Lion’s Badge of Courage, I remember that I am resilient, that my symptoms come and go with the tides, and that this too shall pass.

And even more importantly is my Beacon of Hope. When I shine it out away from myself, even when I am steeped in darkness, it banishes the shadows from the corners of my mind. Fear lives and lurks in the shadows. But when I bathe myself in Hope, it takes on a life of its own. It becomes my lead warrior in the battle against Fear. It will not allow me to succumb to the darkness.

So… I actually began writing this a month ago. At the time, it was in reference to a conversation we were having about my current flare in unrelenting, untreatable migraines. I was joking about my body’s reactions to the shift of the barometric pressure: more accurate than NASA! And my illnesses’ inane need to re-announce itself this time of year. Usually with a never-ending, looping parade of crashing cymbals and blaring trombones… all going off within the confines of my body.

In response to this “update,” she expressed bafflement at my ability to be so calm and accepting in the face of the unknown. “How can you let go? How can you not worry that these current symptoms will turn into a 6 week or even longer episode?”

And this is the crazy thing… it has turned into a 6 week + episode. The reason this entry never got posted is my body decided to go haywire over the last month; old symptoms popping up alongside new and disturbing ones, followed by a string of specialists and tests, including hospital stays, with no definitive answer yet.

But, this is the thing, the miracle of it all: the point I was at over a month ago has become completely irrelevant in the face of my current “predicament” (to put it mildly!). I have become sicker. But I have also continued to put one foot in front of the other. There is no formula that I can apply to figure the duration or depth of this current flare. So why would I waste the precious energy I have on trying to come up with one?

And, yet, I used to think I could.

I realized the true question my friend was asking was, “How can you not live in a constant state of fear?” Fear, most of all, that what is so painful now (whether physical, emotional, or mental), will forever be? That neither of us will ever return to a state of wellness… nor balance.

I can’t say I live without fear. It’s what I do with the fear that makes the difference. I don’t let it set up camp inside my mind and heart. I don’t let it put down roots.

The truth is, I don’t know when or if this (seemingly) never-ending flare will go away. But when I start to tell myself a “story” about my current scenario, I push the pause button. I tried to write my own story in the past, a “Choose Your Own Adventure” style. If A happens, I will do B, C, or D.  Or, if I do LMNOP in the exact right order, then X will not happen. And you know what? It did not work!!!!

All it served was to remind me of my current painful situation, over, and over, and over again. And each time I was confident I had it all worked out, life would throw me a curve ball. And I would have to figure it out on the fly anyway.

So instead I remind myself of my history: the places where Courage and Hope won out. All the times I did get better; all the periods there was a reprieve from a painful symptom, however short or long. I remind myself that I have a team around me to help, made up of friends, family and professionals. And that if (only if, not when) my current bout turns into something more severe, I’ll know what to do. That in the past, I did find treatment. I was able to “ride it out.” I did get better, even if only marginally, it was better.

Then I shift my focus onto the positive aspects of the now. All the ways I am engaging in my life, in spite of. That for every five events I have to cancel, there is one that I am able to participate in that lifts me up.

I ask myself: “Whose side am I on? Which side am I going to feed?”
The side of Fear & Despair…
Or the side of Courage and Hope?

No matter what fearful demons are lurking in the shadows, get out your flashlights and banish fear from the cobwebs of your mind. Just like spring cleaning, it takes a while. It also takes constant upkeep. Imagine what your house looks like if you only clean it once a year, now apply that to your mind…

Fear can build up if you let it, and then Despair sets up house.

OR… your can clear your mind and heart with daily prayer and meditation, with deep belly breathing. By keeping your feet firmly planted in this moment, asking “what can I do for myself right now?” By taking all the headspace dedicated to predicting, preparing, and preventing, and switching focus to the present… building support systems and nurturing yourself (a bath, a book, a nap, a good pet snuggle, …).

Before you know it, your soul will be flooded with light, fear banished.
And COURAGE & HOPE will start to take on a life of their own!

Hope for the Hopeless

hold-on-to-hope-header

I have been far too absent from the blogging community and I have felt the significant loss of this supportive limb. Each of my days over the last few months have been deeply entrenched in “survival mode.” Not only has my disease been in a deep, unrelenting (and deeply unforgiving) flare, so has my husband’s chronic mental illness.

Many times the caregiver’s needs are forgotten; they stand in the shadows making sure everything functions yet are barely seen, and almost never acknowledged. This fact combined with chronic depressive disorder, is a ticking time bomb for disaster.

And over the last month, that bomb has exploded not once, not twice, but over and over again, as my husband has reached his internal boiling point and has no longer been able to contain nor handle his volatile emotions.

During several of these “boil overs” he has expressed his frustration with the way our life has turned out. “It wasn’t supposed to be this way!” And I have no opposing argument, in fact, I agree. But at the same time, I am not sure what other way it is supposed to be. All he wants, I know, is some reprieve… from the doctors, from our illnesses, from our poverty, stress, worry and fear. It is overwhelming and unrelenting. And when you feel physically “down” at the same time, it’s even that much more difficult to handle the onslaught of continuous stressors.

A couple times, he’s taken it a step further. Vehemently stating that he doesn’t see in any way that this is a life worth continuing to live, if this is the way we are going to live it. He went on to argue that perhaps we are not meant to live long lives. That we might as well give in to our disease processes and let our minds and body fade away like they would have before the “wonders of modern medicine.” He challenged me to “show him” in what way our lives are worth continuing.

Now there is no denying that this cut me to my core and made me question my purpose on this planet. But, there is also something undefinable in me that still keeps fighting. I was armed with arguments of the ways our life does shine (friendships, experiences, each other, etc.), but also knew he is not currently in a place to hear any of these points. So I took another tactic, agreeing with his stance, arguing that perhaps we shouldn’t strive to live past 60, but if that’s the case, then let’s squeeze the all out of life for the next 20 years and go out with a bang! In some ways, I kind of liked (and still do like) this idea.

During this current period of strife and struggle, I keep finding myself humming the Glen Campbell song lyric, “Everybody’s got a hold on hope, it’s the last thing that’s holding me.”

And in reflecting on how we can both have two dramatically different outlooks on the same circumstances, I’ve been reminded of a Cherokee fable. Just recently my mom asked me to refresh her memory about this inspiring story, one I shared with her when she was asked, as a lay Presbyterian, to give a sermon on Hope for her church.

The story goes like this…

Each one of us is born with two opposing wolves inside.

One wolf is “FEAR.” And out of the mouth of this wolf comes a constant internal barrage of anger, greed, jealously, sorrow, regret, arrogance, self-pity, guilt, competition and comparison, feelings of superiority and inferiority, and ego.

Many of us can identify this wolf… we may call it by a different name: our judges or critics, the voice of our short-comings, our shadow selves, or our sub-conscious monsters. But this wolf by any other name, is still the wolf of Fear.

But, there is a second wolf, the “Good Twin” so to speak, who goes by the name of “HOPE”. This wolf speaks softly and gently of love, joy, possibilities, happiness, dreams, miracles, sharing, serenity, kindness, peace, friendship, compassion, truth, love and faith.

As we grow, only one wolf can survive.

“Which one survives?” you ask…

THE ONE YOU FEED.

Think of that for a moment. Which wolf are you feeding today? Are you filling the belly full of the one named Fear? Letting it grow and expand until her voice blots out all other? Or are you ingesting a conscious diet of Hope? Doing things to nurture her growth and development, so that her voice grows stronger and louder until all you hear are internal messages of Love and Faith? So that when you open your mouth, these same sentiments steeped in Hope come pouring forth to everyone around you?
Because the more you share your hope, the more of it comes back to you.

I am so grateful that while at lunch with my mom, she unearthed this memory of years back. Giving me the opportunity to remember not only how I can feed the wolf of Hope for myself, but that the person she came to for inspiration and thoughts on hope, was me. That when many are struggling, they reach out to me. That I have faced innumerable challenges, and have survived. That through my personal struggles, I have been given the gift of passing this Hope on to others.

And that even though my life is far from “ideal,” it’s mine. And it’s all that I’ve got.

It’s up to me what I am going to do with it.

Just for today, I choose to feed the Wolf of Hope. This wolf has soft white fur, and kind blue eyes. She is my protector and my guardian, and she leads me down the path of possibilities.

What is one thing you can do today to feed your Wolf of Hope?

It All Began With a Beacon of Hope

girl with lantern

“I feel this little light inside me.”

“That is your Soul Beacon, my child.”

“A beacon?”

“Exactly.  You carry yours with great brightness.  It is how I found you.”

She sits with this thought for a while, twirling a blade of grass. Looking up shyly, she ventures, “I think I understand.  I can feel this glow inside of me, in the deepest pit of my spirit.  And when I think of this light, I can picture a lantern guiding my way through happy times and sad.  Is this like the light you call my Soul Beacon?”

“Why, yes.  Can you imagine why I think of it as something grand such as a beacon instead of a lantern?”

Well… a lantern usually just lights one person’s path while a beacon can be a light to many.”  She pauses to gather her thoughts.  “And my Soul Beacon, as you say, sometimes feels grand enough to light the entire world, but then other times, it feels weakened.  As if it may even go out.  But, when I use this tiniest bit of energy to reach out to another being, I feel it start to grow again, bringing with it an unknown warmth of serenity.”

“YES.  So wise, yet so young.  Your body belies your true spiritual age.  I shouldn’t be surprised; the spirit is with each of us to see and feel when we are ready.”

His gnarled hand cups the young girl’s with tenderness. “That warmth and glow you feel is your true Life Source.”

“I feel it.  I truly do.”

“I can tell, dear one.  Your Soul Beacon may flicker, but it will never go out.  Many become fearful when they sense the depletion of their Beacon.  Without stopping to reflect on what’s happening, they begin to hoard what little light they have left.  Greed and fear rule their every move.”

“But, that’s no way to live!  How very lonely.”

“Don’t fret; that’s the glory of our Soul Beacons.  You can use your special gift to spread the light to others in need.”

“Gift?”

“Yes.  For without realizing it, you are touching every being you meet.  You are spreading your gift from heart to heart.”

“How do I know if it’s working?”

“The proof is in the result.  Think of someone you’ve met who seemed down and defeated; their energy depleted; their hope lost.”

Looking off at the arriving sunset, she sees the face of the farmer in the blazing riot of reds in the Western sky.  “Yes, I remember now.  I’ve met a farmer who had lost his wife; all he wished was to lie down in his fields and give his life back to the Earth.”

“And do you remember what happened during your visit with this farmer?”

The girl retells the story of her chance encounter with the lonely man.  “As we were talking, I slowly experienced a change in his entire demeanor.  His body began to unfurl from the protectively curled stance I first found him in.  He started to lean in to me instead of away.  Shadows of a smile graced his lips.  And he thanked me for spending some time with him and reminding him of all the reasons he needs to stay here and continuing living, no matter how hard.”

“And, you, how did you feel?”

“Well, I couldn’t understand why he was thanking me.  I hadn’t done much; I just talked with him for a while. I felt like thanking him.  At that moment, I felt beaten down by my journey; I was bone tired and couldn’t see any end in sight.  And then I met the farmer, and my journey had purpose again.  I left with a spring in my step.”

“Young one, when we take our light and shine it on others, they are bathed in our Energy.  Through caring gestures and pure human interaction each of us has the ability to recharge our depleting light sources; our Soul Beacons.”

“So, that’s all it takes?  Just showing some compassion to another being will re-build their energy, recharge their Soul Beacons?”

She pauses and ponders on this.  It still seems so simple.  And then, she sees.  “Ah, it seems like actions we should all be taking naturally.  But, in today’s world, everybody’s heads are down, looking at their own small space.  But, if we look forward, into the eyes of another, we not only validate their existence, we are validating our own!  And, it’s when we feel the most vulnerable and weak, that we have to reach out.  Otherwise, we all are just walking shells of what we are truly meant to be!”

“Now, it’s your job to spread this message from one person to the next as you continue on your journey of life.  The brighter your Soul Beacon becomes, the more people will be attracted to you.  Use this not to gain power over others, but to spread your energy out like a spider web, each tendril touching and igniting a Soul Beacon lying dormant within another.”

“Shine on, young one, shine on.”

Creative Medicine for Pain Relief

One of my Colorful Manadalas

One of my Colorful Manadalas

I have discovered that some of the best medicine for pain relief is creativity!  There are so many benefits to engaging in Creative Therapy.  For me, the number one benefit is: distraction.  My mind becomes immersed in the activity at hand and before I know it I am no longer focused solely on my pain. It’s like the physical pain has transferred from my body to the page.  This technique is also extremely helpful in combating emotional and mental pain.  It can help one express the deep, painful feelings that can overwhelm without an outlet for release.  It can help one move towards healing.  Creative Therapy can help reduce stress, anxiety and tension.  I also find this approach deeply meditative; it can lead me into almost a trance state where my calm spirit is separated from my hurting body.  The pain becomes a distant entity.  It allows me to literally take a break from my pain. 

And the best thing is that you can do Creativity Therapy on your own or with a group, for no or little money, and at any time in almost any place (don’t know if I’d try it in the elevator, but you never know!).  If you are more comfortable learning techniques from someone else, there are certified Art Therapists and many cities offer Creative Wellness Centers with classes and open sessions.   Another option is to find a group of like-minded people on Meetup.com or to look into classes available at local churches, community centers or adult-ed classes at local high schools.

But, I want to take a time to explore all the options for doing Creative Therapy in your home.  Don’t get stuck up by saying, “but, I’m not an artist!”  This isn’t about creating “sellable art,” this is about free expression through creative outlets.  There is something for everyone and no one ever has to see your creation if you don’t want them to!  Here are some ideas to get you started…

  • Coloring Books!!… I find these extremely soothing.  My favorite are Mandala coloring books from Dover (found for <$5 on Amazon, etc.).  Mandalas have been used for centuries as meditation tools.  After mine are colored, I keep them to stare into when I am feeling stressed or in pain (sample above).

    "Sacred Place"  Collage

    “Sacred Place”
    Collage

  • Collaging… rip up pictures in old magazines and glue them onto a larger sheet of craft paper.  I love to collage “vision boards” ofthings I hope to achieve in my future, of things that make me happy (sunsets, babies, waterfalls) or of placesI’d like to visit.  You can make “word boards,” random collages, or collages that form a larger picture (like my “Sacred Place” ex.)
  • Knitting or crocheting… there are even weaving circles (at craft stores) for beginners that create a finished scarf!
  • Cross-Stitch or Latch Hook… with so many ready-made designs to choose from.
  • My Tasty Gluten Free Fruit Tart

    My Tasty Gluten Free Fruit Tart

    Cooking or Baking… yes, this is a creative activity, too!  Make something just for the heck of it.  I find this option very Zen; I spend thoughtful, purposeful time creating a visually appealing dish only to have it devoured soon after. Talk about a lesson on impermanence!

  • Gardening… create a pretty combo pot for your deck, porch or sunny window.
  • “Scratch-Off Books”… you can find these at the craft store; there are images hidden beneath black that you scratch away with the provided tool to uncover scenes beneath.
  • Zen-Tangles!… an awesome, new take on doodling.  Look for books online or in the library to get you started. Once you pick up a few different patterns, all you need is a sharpie and a notepad to create interesting, engaging, repetitive pieces anywhere.
  • Card Making… make cards with any of the techniques above and then spend a little time writing a personal note to a friend, loved one, or even yourself!
  • Photography… a great way to get you out in nature and become mindful about your surroundings.
  • Simple Beading… string a pattern of beads on elastic or “memory wire” to create a meditation mala/bracelet (say a mantra for each bead as you “travel” around your wrist).
  • FiMo… PlayDough for adults!  Roll and shape into abstract or formed designs and then bake them.
  • Decoupage… buy a cheapy cardboard trinket box at the craft store and use ModPodge to paste on collage pictures. Coat with an extra layer of ModPodge to seal.
  • Origami… I love trying to reach my life long goal of a “1000 Cranes for Peace”

PHEW!!!! Now pick just one and indulge your creative self today!  Then let me know how it felt and if you have any other ideas to share!

Here’s another blogger’s take on Creativity and Emotional Expression : http://myfibrotasticlife.wordpress.com/2013/09/10/the-importance-of-outlets-to-express-emotions/