Feeling Free to Say “I Am Less Than Able Today”

Why do I still feel embarrassed to express to my “well-bodied” friends that I am less-than-able on many days? Partly, I struggle to find the right words; the delicate balance between clear explanation and what I fear may sound like whiney complaining.

And then there is the bigger problem: the fact that I look so well. Especially on the days that my friends do see me. Because it is the days that I feel well enough to wash my hair (perhaps!), put on some makeup, get out of my lounge clothes, smile, and be present, that I also am able to keep my plans with them. They’re not seeing me on the days when my arms feel like 20lb. weights, too heavy to lift and brush the bed-tangles out of my hair. Or when I am still wearing what I woke up in, which many times even means what I went to bed in, because I was too exhausted to do anything but take off my bra the night before!

And truth be told, the sound and timber and strength of my voice doesn’t often change that much when my physical body is feeling poorly. And for me, my larynx can be in spasm causing hoarseness when I do feel well. So since that’s such a poor barometer for “feeling well vs. feeling poorly,” why is it then that people seem to think that what they hear over the phone lines is some sort of truth serum?

How many of you have heard those dreaded words, “Oh, but, you sound so good today! I’m glad!”

Unfortunately, they are often spoken before I’ve even had a chance to say how I am truly doing. So, I hesitate. Because it gets tiring saying, “um, thanks. But, actually, I’m not doing so hot today.” And even with my most well-intentioned friends and loved ones, I sometimes hear skepticism creep into their response. Because it just doesn’t make sense: but they sound so good…?

I share this all because I think it is a helpful reminder for anyone: both those of us struggling with day-to-day- fluctuations in our physical (or mental) capabilities and for those who are friends to, family members of, or caregivers for (including professionals) those with these “Invisible Illnesses.”

A quick reminder: Invisible Illnesses encompass a wide range of conditions and diseases. Take the common condition of arthritis, even. Yes, a joint could be swollen or red, but many times it can ache with no outward physical manifestation. So now think of all the conditions that effect our “internal systems,” from brain chemistry, to GI disorders, blood, vein and heart conditions, nervous system pain and disruption, connective tissue deterioration… the list goes on and on. These are the “Invisible Illnesses” that hide behind an external mirage of wellness. Wouldn’t it be handy if when something was ailing or failing on the inside, a bright red “warning spot” would emerge on an external location?! I sure would find this handy! Not only for letting others visibly know something painful is going on, but also to help pin-point for both myself and my doctors, what system is causing the pain.

Since this warning system technology is yet to be invented, we have to trust what people say. To take them at their word. You don’t have to completely understand what someone is describing to give them love, support and empathy. And unconditional trust in their word.

Sometimes I worry (too much so) that the person I am sharing my ills of the day with will think I am only saying it to get out of seeing them. At least for me, this is never the case! In fact, I am one to mask my true feelings of pain and discomfort just to avoid hurting or disappointing another. I know I am not alone in this.

So what can we all do as a collective group who cares for one another, to combat this?

For the “well-bodied” loved one:

1. Don’t Assume: Don’t assume just because we sound okay, or even because we look okay, that we feel okay. Don’t assume that because we were able to yesterday, we will be able to today. Or even, if we were able 15 minutes ago, that our bodies’ are still feeling as abled in This minute.
2. Listen: Please ask us how we are really doing. And then give us the space to truthfully answer. Take our answers at face value; please don’t judge or question (or fill in the blank!).
3. Don’t feel like you need to fix the situation. All we really need is acceptance and acknowledgement: “Wow that sounds hard/painful/frustrating. I am sorry you are feeling so lousy/cruddy/down today.”
4. It’s okay to ask “Is there any way I can be of support to you/help you right now?” But also know that we may not have an answer for that. It’s not that we don’t want your help (and I always like hearing a sincere offer from a friend), it’s just that: 1. We may not truly know of any way that you can help right now and 2. Many times all we need is space and time to heal. Which leads me to…
5. Give us space without expectations. We know (believe me!) how hard it is to accept that there is no clear pattern to our symptoms. We may feel better in 1 day, 3 days, maybe even 30 minutes and that can be frustrating. So we just ask for your patience as we navigate the unknown.
6. Don’t stop asking. This is a big one! And I don’t mean “don’t stop asking how we are doing” (although that’s a good thing, too); I mean don’t stop asking us to do things. Because there still are many days when we are able. And spending time with you, helping you out and supporting you, still means a lot to us. This is what feeds our soul and keeps us striving to be and get well.

Now, onto the “Invisible Illness” group:

1. It’s Okay. You’re okay. You are whole and complete exactly as you are. That was hard for me to write, because I am not just saying it to you, I am saying it to myself. “I am whole exactly as I am.” You/I/WE do not have to be anything other than what we are capable of being. We did not create these illnesses nor are we using them as a crutch to “get out of things.” They inhibit what we can do on a daily business, but they are not the all of us.
2. We are not defined by our illness. Our friends like and love us for who we are: the pure essence of us, our true spirit. Not for our physical abilities or dis-abilities. And if that is how someone defines “compatibility” in a relationship, they are not the kind of supportive friend you need, or deserve.
3. Speak your truth. Don’t sugar-coat the situation. You don’t need to go into great length or detail (unless you need/want to). Just be clear and concise. Remember we are speaking a language only other people with chronic illnesses can understand. A friend of mine with varying daily abilities can say just one word to me, or give me that look, and I get it. It’s not going to be that way with all of our friends and caregivers, so…
4. Be patient. You may need to explain your daily needs and limitations over and over again. This can feel frustrating or maybe even like the other person is questioning your authenticity. In most cases, this isn’t true. Remember: it’s a foreign language, and people don’t learn to comprehend a foreign tongue overnight! Most times, our loved ones keep asking questions, only because they want to understand.
5. If someone asks how they can help, and you can think of a way, ASK IT. Don’t be stoic. Don’t hope that they’ll just guess at what you need. (How could they?!). And don’t ever feel embarrassed. This last one happens to me. Because I start to think “But, I should be able to do this.” Trust that if someone offers to help, their offer is sincere and that if what you ask for is too much for them, they will let you know. Think how helpful it would be to have someone cook you a meal, or run an errand/do a household chore, or even help you to color your hair.
6. Remember that friendship is based on unconditional love. Our friends and lovers chose us for the person we bring out in them, just as we love them for the person they bring out in ourselves. We are all here to be our best selves, but that does not mean trying to be something other than you are. Or can be, physically. There is more to you, there is more to me, than our physicality.

It is up to all of us to spread the word on Invisible Illnesses. To take the stigma and mis-understanding out of them. Because millions and millions of us walk around looking “just like everyone else,” while on the inside of bodies are crumbling.

The first step to undoing all the misconceptions around these illnesses, is to start with a deeper understanding of each other, on a one to one basis. Which includes a deeper understanding of our own needs and abilities, followed by acceptance of same. It’s time to embrace all that we do bring to the world rather than all that we do not!

May I Decide For You?

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.

Going Just Beyond…

A friend shared an alternative approach to creating New Year’s Resolutions. For the last three years, she has chosen a word that defines what direction she wants to head in the upcoming year.  Instead of listing “specifics” she meditates and visualizes her hopes, wishes and dreams and then categorizes them under an umbrella term; used as her motivational mantra throughout the year. For this year she was vacillating between love and courage, thinking about using both. Then through conversations with others, she realized the recurring word that kept popping up was “connection.” And as she said, “I have found that the word I settle on, most often finds me, not the other way around.”

By focusing on this one small, yet enticingly expansive word, she will walk through the coming 365 days deepening her connections with herself and with others, while staying in tune with the connectivity we can all experience, when we dip into the well of our shared roots.

Just a few days after this conversation, I happened upon an article in our local paper, “My Life, My Words; Three Little Words Have an Impact.”*  In it, Kristine Bruneau writes, “Since 2012, I’ve chosen three words to inspire and guide me along the path of achieving my goals.  At the end of the year, I reflect on how well these words have helped shape my efforts.” Her three words for the coming year are “restore, integrate and teach.” For the year just past, they were “amplify, connect and share.”  They are a trio of interconnected words, which seem to act as stepping stones to growth.  The first, a verb, “takes action”; the second exemplifies how she will integrate the first tenet into her own life; and the third, how she will spread this to the world beyond herself.

Whether one word or several, both approaches are positive and action oriented.  When focused on the solution rather than the problem, you automatically walk in a positive, forward moving direction.

By setting a word, or words of intent, you are practicing the Law of Attraction. 

For the last couple days, I have opened up my mind to receiving a word that describes what I want to attract in the coming year.  I meditated and prayed, and allowed the first word that came into my mind to sit and stew for a while.  It was an unexpected word.  Some may even say an odd word choice.  But the more I let my mind tinker with this idea, the more I realized it encompassed all my hopes, goals and dreams.

My word for 2014? — “BEYOND”

I want to reach just beyond my comfort zone into the unknown realm where growth occurs.  I want to re-discover my hidden talents; I want to experience life as it is, and then take it just one step further.  I want to reach beyond myself to help others and the world.

Thinking beyond is going to help me “feel my fear, and do it anyway.”  When I am about to embark on a new or different endeavor, and my fear (of failure, of the unknown, etc.) tries to stop me, I am going to pause, breathe and reach just beyond that fear into the landscape of trust. I am going to take my life just one step further.

I am going to remember this one-word phrase (hmm… oxymoron?!) whenever I am faced with a daily decision, choice or activity; I am going to pause and ask myself, “what would going just beyond look like?” 

The same goes for facing disappointment. Instead of focusing on “why life didn’t turn out the way I had imagined,” I am going to look for the hidden land of opportunity that lies just beyond the field of disappointment.

This word will help define the direction in which I want to head; but I am not concerned with defining what that will look like, what that will feel like, or how I will exactly get there.  That part I’m leaving up to God and the Universe.

And I can’t wait to see what happens!

Some questions you may want to ask yourself when choosing your own Word (or words) Of The Year:

• In what area of my life do I want to grow?
• What do I want to learn more about myself?
• How do I want to more deeply connect with my community? Family? Friends?
• What am I afraid of?
• What have I wanted to try that I haven’t yet?
• Where do I see myself in one year’s time? (in my personal relationships, in my financial stability, in my career, in my state of wellness?)

Then take a deep breath, close your eyes, relax your body, and exhale. What is the first word that comes to mind? Hold onto it, follow it, see where it takes you… and then come back here every once in a while to share your experiences with this annual exercise!

SOURCE: * Rochester Democrat and Chronicle, ROCarts, Section 2C

Become Awe-Struck!

Tropical Hibiscus blooming on our deck in chilly October = Awesome!

Awe (n.):

1. A feeling of reverential respect mixed with fear or wonder.

Synonyms: wonder, reverence, respect, admiration, dread, fear, esteem

It surprised me to see the antonyms of “wonder” and “fear” used to define awe; same with “admiration” and “dread.”  Do we truly dread what we most admire in wonder?  Is it a fear of never experiencing a moment of awe again?  Or perhaps a dread that we are somehow missing something?

I was recently told, by a stranger no less, that I am a “feeler.”  This wasn’t meant as: “you’re so sensitive;” it was a complimentary observation.  She said I was so in tune with the energies of people around me (living and dead), because I feel, which is not a trait every one possesses. A friend also recently told me, “you are an engager;” that I actively engage in life and invite others to do the same.

I experience my life with all five (sometimes six!) senses.  I am blessed to be someone who is awe-struck at least a half-dozen times a day.

Awe has saved my life.  I realize that the ability to feel awe is one of my greatest coping mechanisms.  When I was “near-death sick,” I would gain strength through the awe-some acts of kindness from family, friends and strangers to the awe-inspiring views of blazing sunsets and even full rainbows gracing my hospital room windows.

As well, during moments of deep emotional distress; times when the pain was so great I felt like my only option may well be to end my life, moments of awe and the fear of missing out on awe, have kept me around to try one more day at a time.

An unknown poet describes an episode of awe as becoming “wholly dissolved” in the moment.  This resonated deeply with me. For when I let myself fully succumb to the experience, it is like the outer world falls away and I am now one with the moment in front of me; experiencing awe with all my senses. And this is where I think “fear” comes in; because it is a true surrender, a letting go of control, to be able to fully engage in the discovery of awe. For me, these reverent episodes fill me up with awe, so that I can experience this sense of wonder everywhere and in everything.

I whole-heartedly embrace awe and invite others to do the same.  I will make my husband turn around to watch fawns graze in the morning mist or a blood-red orange full moon rising just above the horizon.  I have been known to go back into stores and tell strangers to come outside because there is a double rainbow across the parking lot.

I am now going to do the same for all of you… I implore you to embrace awe in the month ahead.  Then let me know how it has changed your life! :

1. A great way to begin looking at life through awe-colored lenses is to observe a child or a pet.  Children investigate and explore everything in their paths with a sense of awe.  And it never fails to make me smile when I observe my cat discover a sun spot on the floor; she will watch it, chase it, sleep on it, and almost breathe in its warming essence.  If you don’t have a child or pet in your immediate family; go to a playground and find a bench to relax on; just watch and become inspired!
2. Start keeping an “Awe Journal:” document moments and experiences in your day that make you pause and sigh with gratitude.
3. Experience a small chunk of your day with all five senses.  I like to do this when I first get up: I sit in my favorite chair and listen to the coffee percolating, relishing in its deep aroma; I hear the birds chirp their morning song and watch the sky rapidly change colors as it welcomes the day; I feel the softness of my favorite blanket warm up my muscles and the purr of my cat vibrating on my legs; I savor that first sip of my morning beverage, imagining all the phases it took before reaching my mouth (the coffee bean’s journey from field to pot; or the spring water’s path from waterfall to tap).
4. Write a note to someone thanking them for bringing “awe” into your life.  Perhaps it was through a loving gesture, or as an inspiration to you, or by being someone who epitomizes awe-someness!!  Find someone to emulate and mimic their enthusiasm towards awe.  I guarantee it is contagious!
5. Intentionally create an environment for awe… usually through an experience that engages the senses, such as a concert, an art exhibit, an art project, dance, theater, etc.
6. Go through old photos and pull out ones where you have captured moments of awe: your grandson experiencing bubbles for the first time; a friend graduating from college at 30; the first flowers of spring; a riotous sunset or sunrise; your first time dancing again after knee surgery; a wedding; a birth… once you actively start looking for awe in your life, you’ll be surprised how many moments have happened without you realizing it.  Or use your smart phone to document moments of awe as they occur and then see what you’ve collected at the end of the month.

Once you open your eyes to awe, you will begin to see it everywhere.

Please share your awe-thentically awe-some ideas with all of us  🙂

“Gratitude bestows reverence, allowing us to encounter everyday epiphanies, those transcendent moments of awe that change forever how we experience life and the world.”

– John Milton

A Cosmic Connection~All Through the Power of Prayer

Creator~

Help me spread your light wherever I go.

Flood my soul with your spirit and life.

Penetrate and possess my whole being so that

my life may only be a radiance of yours.

Shine through me and be so in me so that every soul

I know will feel your presence in my soul

AMEN

The other night a friend called me in deep despair.  She was coming undone and I felt useless as to a means in which to help her.  I listened to her.  I made gentle suggestions.  I validated her feelings.  Nothing seemed to help.

She hung up suddenly.  “Oh, I’ve got to go.” Click. And silence. I sat stunned to my spot, receiver still dangling from my hand.  Did I say enough?  Could I have done more?  Is she okay?  I was filled with doubt and worry.  My husband came in at this moment and upon inquiry I shared my concerns with him.  He reassured me that I did the best I could.  That unfortunately no one can take away another’s pain.  That growth comes at the edge of despair, change at the end of our comfort zone. 

I knew all this.  And yet … wasn’t there something else I could do?

I sat there feeling utterly helpless, when the answer tickled my mind… “pray for her,” this thought whispered.  It was the simplest of solutions, yet the one so often easily dismissed; an abstract, intuitive way instead of an “I’m going to grab a hammer and nail your heart back together” way!

So here I sat, feeling completely powerless, when I realized I did have control over something.  I couldn’t reach across the phone lines and “fix” her side, but I could take immediate action on mine.

I knew that the best gift I could give her in that moment was to just hold the space with her.  To let her know she was not alone.  I did not even know the details of what had triggered this onslaught of emotions, but I could understand the feelings that had gushed forth.  I could create a space where she didn’t have to stem the flow of this tsunami alone.

What happened next still gives me chills…

I quieted my mind and centered my heart and spirit.  I set my intention and asked the Universe for help.  I pictured my friend, curled up in a tight ball, waves of anxiety, fear and loneliness radiating from her.  I focused on this auric ball of clashing colors and slowly transformed them into a harmonic circle of light and love, pulsating in soothing hues to the rhythm of her slowing heartbeat.  I pictured her blanketed in a quilt of comfort, woven from all the love of the Universe, God, Goddess, her spirit guides, angels, friends and family.  I poured forth deep healing energies from my core; picturing my own Soul Beacon enlightening hers; highlighting the path back to her own center.

Sometime during this meditation, I became so deeply relaxed that I actually fell asleep.  My dream was filled with warmth and swirling threads of gossamer light circling around me.  When I awoke, I felt as if my friend and I had rocked each other to sleep.  I felt her strength grow.  I pictured her feeling grounded and cared for.  I breathed my wish of peace for her into Goddesses’ ears and I closed my prayer.

The rest was now truly out of my hands.  But I now had faith, knowing that I had done my part.  She would be carried through whatever trials were in her way.

It wasn’t until 3 days later that she shared her experience of that night with me …

I had texted her a message similar to above about “holding the space for her,” but that was all.  She told me she had received this much later that night, but upon checking the time stamp, was stunned to learn the synchronicity in timing of my prayer, coinciding with her miracle; one that occurred in the midst of her anguish:

After she hung up the phone with me, she laid her head on her window sill and sobbed.  She felt desperate.  She felt ill-equipped to care for herself in that moment, let alone for her two young children that were in the house with her.  All she craved was for someone to take care of her for once.

Her wish must have been carried on the winds, for her prayer was answered.

A short time later, she was sitting in her chair, despondent.  She heard someone come into her room and assumed it was her youngest child.  For she was the intuitive one, and would often respond to her mother’s needs and emotions, offering up comfort and cuddles.

But as she looked up, she discovered it was her older daughter; a child with sensitive needs who would most often pull the emotional tide in her own direction.   But, not this time.

This time, she came to comfort her mom.  She told her she loved her.  She offered her a hug.

They wound up snuggling on the bed together, honestly expressing their feelings, building a new layer of trust between them.  And they both fell asleep.

My friend awoke off and on and in the end found a book to read while she stayed wrapped up in the warmth of her daughter.  When her child awoke, she looked up, and lovingly smiled.  That’s all it took.

My friend told me that this was a turning point for her.  She felt like a miracle of insight had occurred. Over the next couple of days, she realized that she had been living in a frantic state, hovering on the chasm of chaos.  Yet when she took a back seat and let God guide the way, she provided for her.  And when she let go of the expectations of “how” she wanted her prayer to be answered, she became open to embracing the unexpected way in which God did heed her prayer… by providing the gift of compassion and love from a daughter to a mother.

Once she finished her tale, I shared with her my prayer experience.  Our timelines were in perfect sync.  All that could be said was silence.  We sent up a small prayer of gratitude for this gift of cosmic connection.

So remember, when someone you love is suffering (physically, mentally, financially, etc.) and you feel like you can’t find any tools in which to help them,  everything you need is already with you, at any time:  The Power-tool of Prayer. Reach into your heart and mind and pull it out, dust it off and try it out for a change.  You don’t even have to pray to a specific god.  You just have to set your intention and ask for help, guidance and insight.  Don’t imagine the outcome, only the processes of embracing whatever gifts or messages that will be presented to you.

All you have to do is help hold the space.