To: Chronically Ill at Christmas Love: Peace

As the holiday week began in earnest last night (for both Christmas and Hannukah), I send extra love to my friends with chronic illness. As one friend recently reminded me, constantly fighting this sh*t is HARD!

Which made me think… at least 15% of society does not get any holiday time-off. Yet friends and family, and lets face it, ourselves, have pretty high expectations of our energy and ability to engage in all the same activities we used to do, pre-illness.

Living with chronic illness is a FULL TIME JOB. No holidays “off,” no vacation or calling in a “me-day” on accumulated sick days, no summer vacation, no breaks for our birthdays.

I certainly don’t mean to be morbid! I am just standing in solidarity with my chronically ill brothers and sisters. Because we still try to put on our Santa hats and reindeer bells and look festive on the outside while we feel awful inside. Our hearts want to receive each and every hug, but our bodies pray for not another pain-full squeeze.

For me, my body tenses up. Its almost like an unnecessary fight or flight reaction. So that I many times don’t feel the overwhelming fatigue and pain until I sit down at home post and my body desperately goes into spasm.

So please remember this holiday:

* We may need to be selective about how many events we go to in order to conserve and stretch out our energy reserves (our “spoons”).

* We may skip the more crowded events in exchange for more intimate gatherings. Large groups can by over-stimulating and overwhelming and very fatiguing.

* Our schedules may seem unconventional. This year for example, I did church on Christmas Eve with my family, and then we’re not exchanging presents until the 28th. My husband and I cap off the holiday week with celebrating Our Christmas on New Year’s Eve and Day. Its not like I can go out on the town to ring in the New Year anymore!

* The hardest limitation I’ve had to enforce, is cutting out friend activities: Friendsgiving, White Elephant and Secret Santa, Cookie Exchanges, … In exchange for being able to participate in family celebrations.

It has taken me many, many years to come to this balance. And I still struggle with missing out, and even worse, disappointing those I love.

Family and friends can be so incredibly understanding and supportive. As long as I explain the place I am coming from. And the very few that don’t, aren’t worth any of your energy.

Am I miffed at my illness. Hell, yeah! It’s a freakin’ 24/7 job. I can’t take my body off, like a scuba suit, and set it in the corner for even a 5 min. break!

Do I feel melancholy? You bet! I miss walking through cities and malls to look at the holiday displays with Christmas music floating all around me; joining the local town Christmas strolls and tree lightings.

BUT I REFUSE TO LET MY DISEASE TAKE ANY MORE OF MY LIFE! I love Christmas! So I’m not going to compare what I can or cannot do. I am going to appreaciate the beauty of every moment I AM well enough to experience. No matter how small. We have been given one special gift through illness, to recoginize hidden hope and miracles that others miss.

So to my over 15% of FaceBook friends (that I know of) with daily chronic illness, you are not alone! We celebrate  together!!

And to our friends and family, thank you for you understanding, your patience (especially when we’re running late or cancel last minute), for your gentle hugs, and comfiest chairs. We feel grateful for every moment we get to spend with you!

 

Did I Make Myself Sick?!

Did I make myself sick?
This is a question that has always haunted me. And most recently it has resurfaced.

If we have the power to heal ourselves than the inverse must also be true… we have the power to make our bodies unwell. Right?
A week back, a dear friend was doing some energy work (Reiki) on me. During this session, she received messages from my body. This is not uncommon, and I generally find these messages very helpful.

This message was deep and powerful. My friend told me , “The reason your body is filled with so much sh*t is because you have held on to too many secrets from your youth. And by holding all of this in, it has accumulated in your body, therefore developing disease. It is time for you to speak your truth. To no longer be afraid of how it may affect other people, only to share your story. I feel that by sharing your entire truth, you will be helping many others who are struggling, silently, with similar experiences. This is your path, not only to help others, but also for clearing out all the ‘crap’ and getting well.”

I’ll admit at first this was empowering. All I had to do was write and then share, without fear, my experiences. A clear path to wellness was laid out for me!

And I did start writing. It was, and is, a freeing experience.

But I also started to think about the root of the message: by keeping these “secrets” (which for me surround years of sexual abuse at young ages; a fact my friend was not aware of, making the message all the more powerful), I had made myself sick.
That’s what it came down to. And I started to feel uncomfortable about this.

I shared a summary of this message in my monthly spiritual group. The theme was Desire; and I had written a free-floating thought poem…

“Desire, what do I desire?
A morning song without the rain
A day long reprieve from the pain
A skip, a jump, a roll in the hay
Unencumbered freedom from a body untamed…”

By the end, my desire had become simply for a life of feeling connected, “to know and be known” and towards “internal peace and love of self. To acceptance of Me; and every day I’m Here…”

But, this is the kicker: there was just one line in there that my fellow group members picked up on: “I have been told that I fore-chose this life…”

And they became incensed, on my behalf. Telling me not to take on someone else’s dogma as my own. That that would mean that all Jews murdered in concentration camps fore-chose that path, as well as other startling examples.

So I took both opposing views and sat, to develop my own.
I began to think of a young girl I know, just finishing her first year of preschool, and her almost third year of constant chemo for a rare form of cancer. And I thought, “How could a 2 year old fill her self with enough secrets to make herself sick? How could her story possibly be long enough yet, to tell, ridding her mind and spirit of this ‘baggage’, making her body well?”

Yes, I believe we all have the capabilities to make better choices for our spirits and bodies, to live from a mindset of wellness that leads to true physical wellness.

But there is also a huge component of our diseases that are out of our control. And if we get stuck in thinking, “Why am I not doing enough or the right thing to make myself well?” Along with, “What did I do wrong in my past to make myself ill?” It will only lead to a place of despair.

I have received many messages that I have the power to make myself well. But I do not believe that means I am meant to “fix myself” on my own!

It means a myriad of things: making the right choices for my body, through eating well and exercising; strengthing my circle of support with old and new friends, and accepting their help, without conditions; choosing a team of well-respected doctors who can guide me; doing just enough research to be informed without too much to fill up my head (we all know what I mean!); meditating and doing activities that lower my stress and pain levels; keeping my physical space free of clutter and my sleep space a place of renewal; taking time to laugh as well as cry; and so much more…

I also take time at least once a day to visualize a little army of worker elves marching through my body and fighting off my disease; sending it into Mother Earth to be cleansed, recycled and renewed into something beautiful and useful.

These are tools I think are helpful for any person…well- or dis-abled.

And, yes, I will continue to write my story. Just by being away from the blogging community, I have gotten “clogged up.” There is power in speaking one’s own truth, sharing it with others, and hearing their truth spoken back. This can only aid in the progress of my healing.

But can this, or myself, alone, “make myself well?” That’s a tall order! And all it makes me think is that I somehow made myself sick. And that’s a very isolating thought.

I, alone, can’t fight any of this.

That goes against My Dogma: It takes a village…. To keep the flame alive and pass it on.

I don’t know why I live a life filled with unpronounceable, rare illnesses. But that’s not my job to know or figure out either.

The only difference between me and that precious 4 year old girl is that I know I am sick where she does not (quite yet). Her attitude can teach me, and us all, a great lesson. She just lives each day as it comes. Feeling her feelings when they arrive, asking questions with out shame, playing when she feels like playing, resting when her body tells her it’s tired; and loving everything and everyone around her deeply, with natural childhood enthusiasm. Her disease is a part of her day, but it is not who she is.

She did not make herself sick, and the key to “making herself well” is already inside her: its by going forth one step at a time and not missing a beat when she has a chance to fully embrace and engage in the gifts of life that are in front of her!

It’s as simple as that. Not secrets, not truth telling, Just Living.

Lighting the Unknown Path

As I have said before, it is the “unknown” that is always more difficult than the knowing. The waiting. The wondering. The wandering… of the mind as it tries to grasp on to something concrete.

My last several months have been spent in this suspended state. First we found out that our home of 15 years was suddenly being sold and we had to, in weeks time, find a (hard sought after one story) home, apply for a mortgage (which had become a Big Scary Monster in our heads), sort and pack through years of our life and family “heirlooms,” find the means to buy (and fix up) said house, move and settle, the list goes on.

The only way I survived this process was JUST doing the next right thing.  Nothing more. My husband’s anxiety would reach new and alarming heights and I would have to remind us both, “okay, let’s take a breath. Now, forget ‘The List; ‘ what’s Just ONE Thing we can do in this moment?”

And you know what? One (baby!) step at a time, we walked our way right through the scary terrain of the unknown and into our brand new home.

These are the lessons and skills I so desperately need to remember to apply to my life now.

Because just when I thought I was leaving the path zig zagging through The Woods of Uncertainty, I fell into a Bog of Burdensome Worries! (Didn’t mean to go all Tolkien on you!).

I’ve known since fall that my body was heading into unknown territory again. It’s both a blessing and a curse that I am so in tune with my physical being after years of severe illness and trauma, that I can tell as soon as I start to go off-kilter.

This time, I knew somehing major was brewing.

So, instead of going to the doctors with these worries  (although I didn’t sugar coat my concerns at my appointments either), I turned to internal pep talks, such as: ” Hey, dear body of mine, I know you are giving me warning signs that you’re failing in new and different ways, but could you just please hold on until March? And then I promise I will attend to all of your needs with the upmost of care!”

That wasn’t too much to ask, was it? Guess it was!

Because my “gift” for Christmas Eve was to wake up without the use of both my legs. Totally and completely, from the hips down (yep, includes the bladder, too!). What fun!! For two days, I could  not walk and afterwards, I had complete numbness, like my legs had fallen asleep and could not be stomped, shakened or rubbed “awake.”

Yet, did I go to the hospital? Nah! I had a host of “good” excuses… “It’s the holiday; it’s a weekend” and the creme de la creme: ” I just don’t have time for this right now!”

So my body went from flashing yellow to a blaring red : STOP!!!!!

A little over a month ago, I was reading when half the page disappeared. No joke. I could only see half of every word. A very strange and scary experience. So I shook Dave awake with a, “Honey, I need to go to the ED.” Complete resignation. No questions anymore.

The details since don’t matter as much as the lessons I’ve learned. But in brief, I am in an even deeper state of limbo… not quite knowing the true cause of my weakness and Optic Neuritis (the partial blindness ) yet (MS? CIDP?) and therefore not able to receive the right treatment aside from high dose IV steroids to abate my symptoms.

So nothing left to do but Surrender. Wave the white flag of blind faith (literally this time!).

And to reach out for help. I already feel physically vulnerable, so why is it still so hard to completely crack open and be emotionally vulnerable, too?

If anything, this move was a great practice lesson. My husband is the first to open his door to others when they need a helping hand, but he latches every bolt when it comes to receiving help for his own needs. This time I didn’t let his fear of “not seeming like enough” dictate our choices and I threw open every door and window wide with a sign hung proudly, “HELP NEEDED WITHIN.”

And my friends and family showed up. They packed, they listened, they moved, they cleaned and scrubbed my new abode. All with a smile and an encouraging hug. No expectation of return payment.

This move would not have been possible without this team!

So why should my health be any different?! I need to throw out the old skipping records that get stuck on the refrains filled with shame. Shame over my diseases, over my needs and inability to “do it all” for myself; shame over what I used to be like vs what I am like now; shame over always needing more.

But, most of all: FEAR. Fear that I won’t be able to give back. But we all have our own gifts to offer to the world. And for a long while, mine were coming in the form of my words; of being completely vulnerable through my stories. Through sharing with others and having them, in turn, share with me.

But as soon as life became overly tangled, I stopped writing. Which essentially dammed up my River of Grace… the universal energy that flows into, through and out of me… on to you… connecting all of us on this divine journey of life. So that WE ARE NOT ALONE.

So I think of Buddha’s quote, “if you light a lamp for someone else, it will brighten your own path.” And it helps me remember that whenever someone “allows” me to help them, it always feels like I am the one receiving the gift!

So while my path is now being illuminated by the inner light and energy from other’s  (as I write a dear friend is coordinating meal help for us; fulfilled by those who know me and others who are doing so purely as a random act of kindness); I am holding out my own candle in hopes of lighting just one other’s dark path of the unknown.

There is so much going on beneath the surface of each of our lives.  Let’s look just a little deeper inside.

I know I’m grateful someone stopped and did so for me. All while holding a candle to help light my way, as I take just one next step forward along the path. For as long as I’m moving forward, I’m heading in the right direction.

Namaste.

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!

Hope Heals The Way…

Never give up on hope. I’ve heard people eschew this often overused word as unworthy of attention. A word that only gives false hope, which leads to continued feelings of rejection, loss, and disappointment. But, Hope doesn’t guarantee that life will suddenly become filled with rainbows, leprechauns and unicorns. What it does do, though, is pave the way for possibilities!

Possibilities of a life lived better than the one today. Possibilities for answers to our problems; for solution-oriented thinking.

Because when we have hope, we encourage others to do the same. To not give up… on us. On the situations at hand. On whatever obstacle is currently in front of us.

If I had given up hope 8 years ago today because the doctors told me I had a 10% chance of making it through the night, I am 100% positive I would not have made it through that night. But the doctors, the nurses, all the caregivers saw that hope within me. Because hope burns like the brightest candle in your soul. And it fueled them to work through the night to save me. It is undeniable; a hard to ignore source of personal power.

But I also think that’s what scares people most about hope. Why they begin to shy aware from it, call it out as being “cheesy” or setting oneself up with false expectations. Because they are afraid of their own burning flame… we all have the gift of this, if we stoke it, feed it, let it grow.

But with hope, brings responsibility. Because with hope, you are saying: “I am worthy.” And: “I am worth it… worth the effort.” You are taking responsibility for yourself. You are saying, “I am not ready to give up yet.”

I saw a woman (Cheryl L. Broyles) share her story of hope last week on a daytime talk show. A story wherein 15 years ago she was given 6 months to live as she battled terminal, incurable cancer. But, she said, “NO. I am not giving up hope for survival, for myself, for my life, for my family. And I refuse to let you give up hope on me either.” And here she is, 14 years later, sharing her story. She talks that what keep hope alive for her is making “deals” with herself; “when I reach my 1 year, 5 year, 12 year anniversary marks, I will do the following feat. Or, I am going to stay alive to see my children enter kindergarten, then it was high school, college, and now, have their first child.” And she now helps other people keep their hope alive.

And that’s when it hit me; I’ve stalled out on spreading my hope out to the world. It was the greatest gift that came from my survival; it was my mission statement when I started this blog. It was my goal when I planned to publish my story. And I have done many of those things. And I certainly make an effort to “practice hope” in my individual actions. But there still is a lot to do; there is still a lot a want to share. And that is where I lost my hope.

Because Hope doesn’t mean that life becomes easier. If anything, my life has become, and continues to become, more and more challenging. But what if that’s all part of my story? Who am I to define what hope looks like for me, or for anyone else?

All I do know is that hope means to keep moving forward. To push outside the boundaries of conventional thinking. To look at things in new and different lights. Because it’s not just us with chronic or terminal illnesses, that benefit from this hope. IT IS EACH AND EVERY ONE OF US!

From the smallest daily conundrums to the bigger challenges in relationships with our partners (current and ex!), children, and co-workers. And on to our inner desires and dreams. There are always ways to achieve what we want and need; it’s just not always gained by the conventional route. And that’s where hope comes in to play! Because once you give yourself fully over to the idea of hope (of worthiness), then you can’t help but say, “Well, then, how I am going to make the seemingly impossible, possible?” Once you open the door to new possibilities, you open the door to light.

I often hear hope and faith lumped together. And this, too, can turn some people off to the idea of fully embracing “hope.” Because they equate faith with religion, and that’s not the space they find their hope in. Many people do, and that’s a gift.

But I also want to point out that faith is defined as “belief in, trust in, loyalty to, strong conviction of…” Couldn’t you fill in that blank with so many other verbs and adjectives? “Belief in Hope;” “Trust in something greater than myself;” “Loyalty to myself and my own well-being;” or “A strong conviction in the fact that I am worthy of living a full life.”

My faith lies both in the power of actively practicing Hope, but also in the belief that I am not the one directing what that hope looks like. I may still die tomorrow; but at least I know that I didn’t go down without a fight. That I didn’t live every moment as fully as I could, in that moment. And that I didn’t let others give up on me. Even more importantly, I didn’t give up on myself.

So open your heart to a little bit of hope today. Feel that candle of life, love and energy burn within. You truly are worthy of it… all.

Inviting My Inner Critics To A Tea Party = Courageous Living

I have decided to make friends with the Critical Voices in my head. I imagine inviting them all for tea and a round table chat—welcoming them in instead of automatically shutting the door in their faces, which is what my defense-mechanism gut is urging me to do.

I will let them know that I have invited them over to listen to and hear the value in what they have to tell me, observations they may have after years of “hanging around” my life. But that I will also accept these words with conditions. I honor and respect myself enough now to do so.

Historically, these voices have presented themselves in un-helpful ways:

• They speak in black and white; they tend to have no “grey zone.”
• They show up as voices of reason, which can be confusing. But instead of “You’re not ready yet; maybe later.” I am ready to shift their thinking to:  “You may not be ready right this moment, but let’s see how we can get you  there.”
• They can be repetitive. We know, intuitively, that they are irrational, but their persistency can be deceiving.
• The more we resent these voices, the more they gain power over us. But when we try to form a healthy relationship with them, space opens up; for more kindness, love, compassion and understanding– for ourselves and others (we all have these inner critics).

So, let’s start with an example. It’s a biggie, for me:

My Critic often tells me: “You won’t be able to achieve (or even begin to attempt) this desired dream/goal of yours, until you are physically better. Until then, it’s unrealistic to push forward with this endeavor. It will only be frustrating and create overall, unnecessary distractions in your life.”

I am now going to respond differently to this old introject of fear and negativity:
“I can tell your intention is loving. But the majority of your words are simply untrue. And all they serve by my believing them, is for me to sit and wait for this far off ‘perhaps I’ll be better future.’ Or even more detrimental, they have convinced me to believe that I am not good enough, complete enough, whole enough. Now. As is.”

Then I am going to reframe this original feed-back:
“You have shared some useful information with me. But a more loving and helpful way of speaking it would be …”

“I can see that you have some exciting dreams and desires right now and that your physical limitations have created an impediment to you achieving these goals. So instead of ‘waiting to get well’ I would like to lovingly point out some valuable ways you can achieve your goals: you cannot continue to go this alone. What support, physical and mental, can you access and/or welcome into your life to help you make attainable and doable steps towards your goal? What modifications need to be made to your overall goals so that you can set yourself up for success instead of failure?”

And, here’s the miraculous thing, once I made space for this critical voice in my life, I opened up my heart in new and expansively loving ways. Suddenly I was seeing possibilities instead of roadblocks! And my Inner Judges switched from being critical to critically thinking.

I realize I’ve let this repetitive Critical Voice begin to re-define who I am, and even more so, who I am not (or not capable of being). Constantly telling me what I cannot do, until X, Y and Z happen… until all of my cosmic stars align!

I think we can all relate to this on some level. For we all have Inner Critics. And many have become life-long roommates, hogging up head space since as far back as childhood. Yet, we try to get rid of or ignore these inner voices instead of integrating them.

Kate Swoboda says, “In truth, your Critic is your ‘best friend, with lousy communication skills.’” They are the scared wounded parts of ourselves that deserve compassion instead of distaste.

I, who doesn’t see myself fundamentally as a black and white thinker, had become one. I truly began to embrace these Critic’s voices as my own- as my one true voice- until the point where I thought I was doing myself a service instead of a disservice by listening to and heeding their messages.

They caused me to re-write my story: because my body isn’t currently equipped to truly meet my goals, “reaching for the stars” just isn’t in my current repertoire.

Believing that whole “lower my expectations, so I don’t set myself up for disappointment.” But all this has served is to create disappointment. In life. In my body. In Myself. Leading to resentment.

Yet, what I learned through an amazing workshop called “Your Courageous Purpose,” by Molly K. Larkin is that these critical voices can and do serve a purpose.

Listening to them, welcoming them to my round-table, has opened me up to hearing what’s really going on. How I really feel about the situation; allowing all the big, ugly feelings in first like anger and sadness, before the healing can begin. And then creating some solution-oriented, forward-focused thinking.

So, let’s boil it down to the basics:

• My body has physical limitations.
• I do not know when, or even if, this will ever change.
• Waiting for things to change or “get better” isn’t working. IE: it isn’t serving me or my highest good.
• In the past, when I have reached out to others or openly welcomed their offers of help and support, I have been able to achieve unimaginable goals and dreams, in spite of my physical impediments.

So instead of the “wait and see approach,” wouldn’t it be more beneficial to ask myself some critical questions:

• What do my current goals and dreams look like? Feel like?
• What are some modifications I could make that would allow them to be more manageable? How do they look and feel post-adjustments?
• What are the most important aspects of my dreams (the ones I have the strongest emotional attachments too)? Defining these will help me clarify which parts I can more easily let go of and which ones are the most important for me to hold on to and make work.
• Now that I know the most important parts of my dreams, how can I make them possible now?:
  A. What are small, “bite-sized” steps I can take today to move towards these dreams?
  B. In what ways can others help me in reaching these goals?: Ways others can help/support in the actual achievement of the goal. Or ways they can support in other areas of my life (cleaning, shopping, etc.) so I have the energy to take small daily steps towards my goals.

When doing this process yourself, stay aware of what additional Judges pop up. Old ones, new ones, old ones in new ways. What are they saying? What do you need to acknowledge in their messages? Is there any useful information hidden in the Critical Voices?

For example, just in the process of writing the above exercise for myself, I heard an old judge begin to persistently whisper:
“You’re being selfish. If you have any physical energy on any given day, it should go towards taking care of your home, to supporting your husband and others. Then, if there is anything ‘left over,’ you can reach for your own dreams.” Which translates to: “Your needs/wants aren’t worthy.”

Obviously, this is a multi-layered process. Where did I put that handy-dandy onion peeler again? The one that removes all layers in one swift motion, with no tears? Ha. If only!

But that’s the gift of removing one layer at a time.

So who are you courageous enough to invite to your round table today? I guarantee the process will pay off in the end. Setting yourself free to live the life you are meant to be. Now, that’s Courageous Living!

Is It Beautiful or Useful? Resolution for 2015

I remember hearing this sage Feng Shui advice: when de-cluttering your living or working space, look at everything in your environment with the discerning question: “Does this object bring beauty or is it useful?” If it is neither of these things, then promptly throw it out. I have decided to apply this principle to other aspects in my life in the New Year.

This is my so-called “New Year’s Resolution.”

When you live with a daily chronic illness, as I do, time and energy are hot commodities. I have to make discerning choices as to how I am going to expend my limited resources. But it can be difficult at times to determine what the right choices are. Especially when you start to factor in concerns over other people’s feelings and obligations you feel you “should” fulfill.

Then I realized, what if I ask myself the above question: “Is this activity going to bring beauty/joy into my life or is it useful?”

In the first category are all the activities that bring me the most fulfillment, spiritually or emotionally. They are the things that make life worth living. They are the little bits of sunshine that carry me through the cloudy moments; the Beacons of Hope amidst the storm that will surely come.

The second category may not bring an immediate sense of happiness or beauty, but are necessary tasks for my continued survival. These are doctor’s appointments to maintain my state of being, procedures to treat my health, daily exercise to “oil” my joints and increase my mobility, keeping my living space free of clutter, and taking time to plan and prepare healthy meals. Also, landing here, is taking the time to evaluate things I cannot do on my own, and then asking for help from others.

It’s much easier for me to fill up the list with “activities that bring beauty and joy into my life.” And, as much as I need to look at the pile of activities that bring me joy, and rate them from “most joy” to “least,” just by asking the initial question, I have already weeded out all the things we as humans engage in just because we think it is what we should be doing, or what others expect from us.

Going to work each day, even when it is not the most satisfying, is useful because it brings home money to live and thrive. Going to lunch with a co-worker that generally annoys just because you are afraid to say no, is not useful nor beautiful. That time could be spent doing an activity for 45 minutes that feeds your soul so that you can return to work more light-hearted.

For me and others with chronic illness, we have what has been coined as a “limited amount of spoons” each day. Every time we have to expend energy (any amount), we have to give up a spoon (or two, or three). Once our daily allotment are gone, they are gone. Too often, I forget this. I start trying to hand out forks and knives, items that really are only on loan and carry a steep penalty. I am borrowing against myself. And then I will pay in the days following when I have nothing left in reserve and my body shuts down. Completely.

This year, I want to do differently. I want to respect my body. To honor its limitations. To realize that if I pay heed to the true amount of energy I have then I can enjoy a small amount of truly meaningful activities each day.

I want to recognize that many times the activities that bring the most beauty and joy into my life are ones of quiet solitude. Moments of peaceful participation in painting or writing or reading or just sitting and listening to music.

I want to pause when someone invites me out for an activity and listen inward to see if my heart is singing with the beauty of this possibility. Or, if it is sighing with resignation because I feel like I need to fulfill an obligation.

It has only been just under one day into the New Year, but I have already applied the “Beauty and Usefulness Principle” to each moment of this day. And, you know what? It has both kept me fully present and making conscious choices throughout my day, big and small. I have balanced my choices by spending some time throwing out old clutter (useful) and prepping a canvas to paint sometime in the next few days (beauty/joy). I have kept each activity short, with periods of rest in between.

My heart feels full and satisfied.

Try out this barometer question when facing various choices in the next several days, and see where your heart leads you.

And may reading this give you support if you live with chronic illness, or understanding if you are a friend to someone struggling daily. When we have to say no to an invitation, it isn’t saying no to you, it is recognizing and honoring our own limitations. By staying true to ourselves, we are true to others.

HAPPY NEW YEAR!!

Let Corage and Hope Take On a Life of Their Own

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!

Chasing The Elusive “WHY ME?”

Inevitably, at some point in time, after receiving the news that one is facing a long-term or chronic illness/disease, comes the elusive question of ,”WHY?!” For some, this may be a fleeting call to arms, for others, it becomes a constant refrain of, “Why?” or “Why me?” or even “Why, God, why?”

During my last hospital stay, the progressive pastor of my family’s church came to visit me. After the necessary check-ins were taken care of, he turned toward me, and simply asked, “Do you ever find yourself questioning ‘why?’.” I have wondered since what direction he was taking the conversation in, if he had any expectation of what my answer would be. But this has been fleeting, because in all truth, I think he was just curious.

In that instant, though, there was no hesitation; I didn’t even pause before responding: “Yes. I am sure I have asked, ‘why?’ at some point in this long journey. But I have quickly discovered that this is a fruitless pursuit; a question without an answer; a path that only leads me to remaining stuck in the miserable moment.”

But that conversation has left me with equal curiosity. What is the point in asking, “Why me?” in the face of any number of events (I’ve heard this turn of phrase applied to everything from an unexpected car repair bill to a diagnosis of cancer), when one could just as equally be asking, “Why not me?”

The relentless lamenting over the “why” produces an on-going cycle of strife and depression. How could it not? There are no (satisfactory) answers to this perennial question. But there are concrete, solution-oriented, answers to the question of “What next?” We don’t know the why, yet we do know the how. It’s what we do with the how in the now that defines us.

I know I am sick. I know that there is currently no cure for my autoimmune condition(s). I know that my disease will continue to progress, causing a ripple effect that may require future surgeries and invasive procedures. I know that the mountain of daily meds I take to treat my diseases and conditions also create an equal amount of unpleasant side-effects; and that it is difficult to separate the two apart.

But I also know that I am a fighter. I am creative in the face of challenges. I discover new pathways when faced with a seemingly impassable road block. I am a giver of light, love and energy. My mantra is “Hope.” I know that I do not have to face this life alone, unless I choose to isolate. Which I do not.

This is where I can put in action the “What next?!”

Each surgery may chip away at the person I used to be. But that’s the key, used to be. Not the person I am now. Life is not stagnant and neither am I. In the course of my conversation with the pastor, I shared my views on the River of Grace that flows through me, receiving energy from beyond, recharging my own Soul Beacon, before continuing to flow out into other souls around me.

He smiled and said, that sounds like what Jesus speaks of in the bible, “Our Well-Spring,” that source of God that flows through each and every one of us, just waiting to be tapped into.

I have heard many people refer to this well-spring in their own words. I have heard it be called: Universal Energy, Chi (Qi), Kundalini, Indomitable Spirit, God’s Grace, Life Force, Eternal Flame, and many other monikers.

For me, it is my River of Grace. Because a river is an ever-flowing body of water, that both draws from many sources (is not a singular entity) and pours itself into (nourishing) many other bodies of water. Rivers are not stagnant, they are an ever-changing and evolving path through life. And water is our life’s breath; we cannot survive without it and 2/3rds of our bodies are made of it.

My River is a well that never runs dry. Yet, it is my responsibility to drink from it, to pull from it to renew my spirit when it is lagging.

Which brings me to the Grace part. I think of grace as a gift. As the ability to look for the light in a sea of darkness. To see beauty and gratitude, no matter what the situation. To ask “what’s my next step” instead of getting stuck on the repetitive refrain of “why?!?”

And then I decide to look up the official definition: Grace: “unmerited divine assistance given humans for their regeneration” (Meriam-Webster). To merit something, is to earn it. You don’t need to do anything to earn, or to deserve, grace. It’s there for all of us. A gift from beyond ourselves, to regenerate the mind, body and spirit.

We have all experienced unexplained loss, devastating, mind-numbing losses. We have all had to endure unnecessary pain, physical, emotional and/or metal. Or had to witness, powerless, as a loved one is faced these. We have all encountered enumerable challenges, obstacles and sudden change.

These experiences are what define us. It is what has defined me.

But I have also chosen not to have them be the all of me. They are one part of my story. They are U-turns on the path of my life. And instead of sitting down in the middle of the road and stopping, staring befuddled behind, below, and around me. I’ve decided to look straight ahead. To tap into my River of Grace and chart a new course.

This attitude has carried me and allowed me to see my life as full of opportunities. To say, “What next.” Instead allowing myself to feel victimized, always the punchline, left lamenting the “why?”

Think of one area in your life where you can flip your knee-jerk response of “why?” on its head. Start small. See how this one shift in attitude affects your whole day. Your whole week. Your attitude and out-look on the things that come next.

And if you already embrace an attitude of “what next,” please share your experiences so that they may inspire and encourage others!

Striking Balance and Scheduling “Me-Time”

 

This clear message to focus on self-care appeared on my daily calendar right on the heels of a similarly veined conversation with a friend. We were discussing our recent struggles with being over-booked; striking a balance between committing to too much and leaving enough space for down time.

The struggle with balance is not new. We toss around this subject with regards to our diets; to love, life and work; to our children and our partners; to our hobbies versus our paid endeavors… the list goes on and on.

But what often gets thrown out first is time spent dedicated to just being. To replenishing the spirit. To feeding the soul.

To taking time to love yourself… so you then have the capacity to love and care for others.

To saying, “Stop! Enough is enough; it’s time to fit in some me-time!”

Our society does not encourage this habit of self-care. We live amongst a go, go, go mentality. The idea that if you say no to one opportunity, another one will never come your way. That if you take time to pause and rest, someone else will take your place.

When my body fell off the gerbil wheel and effectively shut itself down as my autoimmune disease announced it was now taking over control of my ability to do or not do, a new challenge arose in the strive for balance. A similar struggle is heard echoed by friends with various chronic illnesses (mind and body). We spend so many days as slaves to our disease, that when we have a “good patch” we want to take full advantage of it. So, we too, push, push, push, until we reach overload and crash.

I recently read about why we have resistance to letting go of these patterns of behaviors. It comes down to one of two fears: 1. A fear of losing something we already have or 2. A fear of not getting something that we want.

When stripped down to this straight forward approach, my friend and I could clearly see the impasses in our behaviors. For her, it was an abundance of exciting opportunities to suddenly participate in the craft she loves. She feared losing this new-found standing in the community as a respected musician. And was afraid to say no to even one opportunity, leading to being “put off the list” and never asked again. As well, she feared losing this dream. She had prayed and the Universe had delivered; how could she turn down that?

For me, I didn’t realize it came down to such a blunt answer until I said it out loud. I fear losing my life. I fear that each day may and well be my last, so I certainly do not want to squander what precious time I do have, and the beautiful opportunities presented to me to spend that time. For me, it was (and is) this insane grasping at all life has to offer after another extended hospital stay.

So where does one go from here? …

The first step is asking yourself that very same question, “What am I fearing right now?”

Then it’s reminding yourself that you are no good to anyone, especially yourself, if you do not incorporate “me-time.” You could say yes to everything, forgetting your own needs in the process. Think back to times you’ve made that choice. Many times we run ourselves into the ground to the point where we may show up for each thing, but are not wholly present for any one thing.

Remind yourself you have choices. My friend decided to keep her present commitments, but to not commit to taking on anything new for the fall. As for losing out? She can let these generous offerees know that she is fully booked now, but is still interested and would like to check in with them in December.

Me? I listed my obligations and put them in order of priority. What is most important? I had to cancel almost half of my “dates” and trust that there will always be something new around the next corner. Also, I will be better equipped to fully enjoy the choices I “kept” because I put moments to pause in between each.

Which leads me to the most important suggestion I have…

Look at your calendar right now and schedule time for yourself. Yes, at least a full hour of “me-time.” Put a big X through it. Do not attach any thoughts to how you are going to spend this time. This is truly down time… you’ll know what you need when you get to it. It is NOT a time to do errands, or catch up on work, or clean the house, blah, blah, blah! Do something that recharges your soul; whether that’s a nap; a walk in the woods; or watching funny kitten videos on YouTube. This is your time — relax, rejuvenate… refuel.

Your first reaction may be the same as my friends, “but what if I schedule it during a day/time that I don’t really need it?”

It doesn’t matter… take the time no matter what. Treat it as responsibly as you would any other appointment with a colleague, doctor, etc. You wouldn’t cancel or double book on someone you respected, so don’t do the same for yourself. Respect yourself as highly as you do others!

Once you get in the habit of honoring yourself with a “me meeting” each week (or several times a week!), your mind and body will start to naturally remind yourself when it’s time to fit in some self-care.

I have shared this idea with some who have met it with aplomb, and others still that have great resistance to the idea. But, can you honestly say you can not find one chunk of time (just 30 mins) that you can dedicate to yourself for just this week?!  At least give it a try…

This is the first step in retraining yourself to put yourself first.

So that you may be fully present in all things and for all others.