The Worst Friend in the World.

To the long list of you whom I have called, intended to call, or still call, “friend”:

 

I know I owe you a novel, and I know it’s been ages.  I think about you so much, wanting to know how you are, what’s happening in your life.  Wondering what life is teaching you, how big the kids have grown… ugh… you know… just missing you.  I feel like I should apologize to you for not communicating, but to be honest…I just have to do the best I can, and I have truly been doing that.  Life is just full.  Full, in an overwhelming, mental breakdown kind of way, and it has been on that ledge for so long, I feel like I can never quite get my footing.

I was remembering the other day about how much life changes when you add a baby to your family. When you have small children in your home, it’s like everything is put on hold… time passes and you feel like you’ve gotten absolutely nothing done.  You lose touch with people, your house is a mess, you often forget what day it is, and it seems impossible to do anything you used to do; and then it hit me:  Five and a half years ago, I had a baby (making me the mom of two beautiful, and all-consuming little girls), opened a business, and was diagnosed with a chronic illness all at the same time.  These are those *events* that turn your life upside down, the kind that change your course and knock the wind out of you.  I know that should be obvious info to me, but though I wouldn’t deny those facts, I don’t give myself the same grace that I give other people.  I still want and often expect myself to be the same me that I was before, and I feel like I owe it to you, as my friend, to be that person.

The baby is in Kindergarten now (her sister about to turn 13 and make me the proud parent of a teenager), the business is bigger than me, and well, the chronic illness… it’s now more familiar to me than being healthy, and what I keep hearing in my head is: “I am the worst friend in the world.”

I know, I know.  I shouldn’t allow negative self talk like this to continue playing on repeat in my head.  I’ll work on that, but for now it’s sincerely a struggle not to beat myself up when I see the gaps forming in my relationships and the missed opportunities to connect with others on a personal level.  So many unreturned phone calls, emails left without response, Facebook messages, party invitations, dinner invites, texts I never acknowledged, cancelled outings, and even a standing list of good intentions on my end to begin cultivating new relationships…I’m pretty sure that to a lot of people, I am perceived as a total jerk, and more importantly than anyone’s perception, I sincerely feel the disappointment associated with the degradation of these relationships.  I want to make room.

My reality is this.  I have a shorter day than most people to work with.  In order to function at a level that my symptoms are manageable, I have to sleep about 14 hours or more a day.  When I don’t do this, my symptoms slowly take over and I gradually work myself into being “grounded” and stuck in bed completely for days or weeks on end.  So, as a rule, I make it my goal to get this much sleep.  To keep things interesting, spontaneously, I get slammed for what seems like no apparent reason, so I am always “on call” to my illness.  But, on the good days, sleep is usually the best way to keep things under control.  Another part of maintaining some sort of control is with my diet.  Processed foods pretty much wreak havoc on my body, so it has become a huge priority to try to keep a more natural approach to what I eat, and that has carried over into how we eat as a family.  We try very hard to primarily eat “real” foods, which of course is a huge transition when this was not a previous way of life, and takes a huge investment of time, organization, and money… which, while we’re on the subject, has anyone else out there noticed a shortage of these things these days, or is it just me??  Weird.   Oh well…  Somewhere mixed in with the health priorities, I get small bursts of drive to seek medical care, and invest into myself by pursuing tests, going for checkups or treatments, though admittedly this gets neglected (ironically due primarily to a lack of energy), and often feels impossible to “stuff” into my day.

Next, I have a family that I love.  When I am physically able, I want to spend as much time as I can, attending my daughters’ school functions, listening to them talk about their day, reading books together, chauffeuring them to activities, being involved.  I’ll take it, whatever I can get.  I have sacrificed so many of these things over the years because of being forced out of the game by physical limitations, but every “good day” that I have, I want to take advantage of the opportunity to spend time with my family (though it never does feel like enough time is spent here).  Dates and alone time with the hubby have recently been re-defined.  Attending the kids’ activities, riding together in the car, watching a 30 min sitcom (while falling asleep) at the end of the day, or having a business meeting to discuss pending decisions are now qualified as “dates”.  For now, we are gonna roll with it and look forward to future seasons of a more romantic scenario.

Filling the rest of my time and life, and constantly threatening to encroach upon the above two areas would be the business.  When my youngest daughter was 3 weeks old, and life was feeling rather simple and peaceful, I decided that it was a great time to go get my DBA, and pursue a dream of entrepreneurship and open my own company.   My dreams and vision have always been *huge*, but I had no idea whatsoever what this journey would mean to our future.  I opened a photography company, intending on specializing in family portraits, working with children, newborns, maternity sessions, etc, though my previous background was in the wedding industry.  Slowly this initial vision evolved, and one step led to another, and the company gradually transitioned into a wedding photography company.  I created a monster.  Seriously.  It is bigger than me and sometimes feels so overwhelmingly out of control I feel that I want to go to the airport and take a flight to an indisclosed location and hide.  That is not a joke, but a sincere feeling of desperation at times.  Obviously, it did not get here overnight… and obviously, there was a night and day effort and investment on my part to create said monster and drive it forward… but… I plead ignorance.  I knew not what I did.  With my husband partnering with me in this venture, we now have a team of 14 of us that actively make up this little company.  We are currently holding interviews to add at least 5 more people to the team within the next few weeks/month, and looking at the growth ahead, I can only see that expanding.  I love this team, and these people, and am devoted to continuing to do everything I can to provide opportunities.  I am completely passionate about this.  But as people generally do… each member of the team comes with their quirks, demands, differences, excuses, strengths, and weaknesses, and at the end of the day… I’m mother hen, and when people want answers, want money, or want to complain, I have to be available in this way.  The number of clients that keep us in business and the demands and expectations that they place on their service from our company, combined with the pressure of handling one of the most important days of their lives, is not something that I can take lightly, and has become severely intimidating to me as we continue to grow.  As a matter of fact, it is a complete discipline to stay in the moment when the time has come for me to rest or spend time with my family because of being so distracted by my emotional ties to this responsibility.  As you can imagine, the whole 14 hours of sleep a day concept often gets compromised and I run myself ‘till there is nothing left, in efforts to keep up.  The scary thing is, we are really just beginning.  This past year has been the most rapid season of growth that we have ever seen, and the growth just keeps coming.  Not to mention that we are expanding into other ventures.  You see, I want to devote my life to providing opportunities to help people reach and fulfill their potential, and I also want to leave something solid behind for my family’s financial future.  I have to say though, had I known that the path to this goal entailed being stretched and pushed in the ways that Derek (my husband), and I have been over the course of these last few years, I don’t know that we would have had the courage to open this door.  The business is a story for another blog…or maybe a book…?

You wanna learn what you are made of??  Get sick.  Or open a business.  Or… hey, do both, and why not add to your family while are at it!

Ok, so there’s my life.  Summed up neatly into three parts.  Somewhere stuffed into all of this, are the intentions to exercise, have a spiritual life, take time to relax, aaaand, you guessed it…among other things… to connect with friends.  Family commitments ebb and flow, as does the business, and as do my health issues.  But I either have to choose to wait for that absolutely rare moment when all of these things align in a way that makes room in life for more, or just try my best to keep reaching out in between the cracks, and in the midst of the chaos in a very messy and extremely inconsistent way.  Usually it’s the latter, and those efforts are so spaced apart and so sporadic that I often end up just opening one side of a two way effort for communication, only to walk away and get caught up and consumed by one the above mentioned components and therefore confirming my theory that I am very possibly in fact the “worst friend in the world”.

One thing that I know for certain that I can always trust and count on is the changing of seasons.  For now, I’m going to put my hope into that, and embrace the “in betweens” that come along.  I guess by doing that, you might say that I’m being a pretty good friend to myself, and in the grand scheme of things, maybe that will make me a better friend to you when our paths cross next.

 

 

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I disappear.

  Just a few things muddling around in my mind right now, as I think of the relationships that I have (and have had) in my life.  Working on consistently being transparent, but my tendencies are pretty deep rooted, so these are just a few words about that struggle. 

Sometimes I disappear

Sometimes it is because I am weak

And I don’t want you to see that

Because I know what weakness breeds

And I can’t handle your judgment

Nor can I handle your pity

And sometimes I think you can’t handle me

Because this kind of weak

Well, there is nothing heroic or beautiful about it

It can get just completely ugly and dark in here

And it will change the way that you perceive me

And that scares me

 

 

Sometimes I disappear

Sometimes because I am strong

And happy, and living, moving,

And I just don’t want to slow down

Because it is just so good

And if I stop

I may not ever stand up again

So I try to cram as much life into this one day

As I possibly can

And I achieve, and I win

And you look at me proudly

And that scares me as well

 

 

 

Not sure how to keep being true

Not sure if I have that kind of strength

I’m going to keep on trying,

Trying to stay here

But sometimes

I feel that it’s best to disappear.

Delicate

I had a dream last night

You and me in the warm sunlight

You smiled as you watched me dance

I sang a song and you clapped your hands

And we laughed, and laughed, and time stood still

 

I snapped back into a memory

You watched as he yelled at me

I saw a tear on your face

You turned your head and wouldn’t meet my gaze

And we cried, and cried, and time stood still.  For me.

 

Here now, in reality

You can’t even look at me

We talk only pleasantries

In your own world of make believe

And my heart, it aches, to hear from you

 

But here we stand

Side by side and yet miles apart

And though I long

I know you’ll never fill my heart

I am whole now

I can’t wait for you

Because time stands still no more

 

Isn’t life just a fragile thing?

We must hold it carefully

It’s all made up of yesterdays

Future seeming so far away

And we watch, we watch, as time goes by

 

Do you ever recreate?

Ever wish that it wasn’t too late?

Do you go back and meet my eyes?

Grab my hand and sacrifice?

Do you ever put an end

To the sickness that crept in?

Ever wonder what would have been?

What would have been?

 

Isn’t life so delicate?

Like handful of falling sand

But I still think it’s beautiful

And you know I’m going to spend it all

And I’ll live, and love, ‘till there’s no more. For me.

Tears of Sadness, Tears of Joy

Tears of Joy because I have had two weeks of feeling well,  and am beginning to re-enter my life

Tears of sadness because I’ve missed a lot of the last 5 years.

Tears of joy because I am excited about what is ahead.

Tears of sadness because I am terrified of the possibility of it all being taken away again at some time.  And that is so painful.  Every time.

Tears of joy because I get to spend time with my children and enjoy them this weekend and truly be present in the moment without the usual fog of feeling poorly that is so hard to see through.

Tears of sadness because my children reject me right now, because they are afraid too. And these things take time.

As much as I have been trying lately to build my home in the center of being sick and being well because of the fear of moving back into one place or the other, the truth and reality more resembles the swinging from side to side of a pendulum, than it resembles me just sitting/settling on neutral ground.  For two weeks I have been resting on the side of being well, and I am thankful for that.  Physically, I have been resting there.  My emotions are still swinging back and forth with the remaining momentum, as are my actions, choices, and plans for the days to come.  This morning I am flooded with all of the emotion that I have been pushing inside.

Tears of sadness, tears of joy. 

Because the truth is, this is the hardest season I have ever been in.  And the truth is that somewhere along the road I lost the damn instruction manual.  So it is just me now making up the rules, taking next steps.  And it always feels that there is so much on the line if I make the wrong move.  But one foot in front of the other is the best I can do.  So here I go again.

Building a Home in the Middle

I am struggling these days to know what to feel.  My inner voice speaks to me that this is not a question that I can find an answer to, but that I need to recognize and accept the feelings that naturally exist, however, one thing that has definitely changed (developed?) within me since the first day of hearing the word “chronic” leave my doctor’s mouth, is this strange ability to bend, hold, and store my feelings and guide myself through each day as if I am a matador guiding them in the direction that I think is appropriate for that moment.  It is such a constant challenge, this tight rope act of balancing emotions without having any idea from moment to moment, day to day, where things will be.  All of us have unpredictable lives to some extent, but in general can usually make some sort of plan and expect that unless some rare, unforeseen circumstance creates an obstacle, that you will most likely be able at the lest wind up in the general direction of where you intended.  With chronic illness, you constantly have to re-route, re-think, or just surrender to what you can or can’t do in that moment.  This creates an interesting dynamic when it comes to emotion.

Often a morning of mine can look like this.  I wake up and I evaluate where I am, before I even open my eyes.  I coach myself to give the morning a try even if I feel horrible.  I start to get ready and realize that it’s not so bad after all!  Today’s gonna be one of my “good days”!  I start to plan for the day as I get my shower.  I am going to get ready, run errands, make a few phone calls, and then go to the park with my family.  It will be a good day.  I make a few calls, send a few texts and solidify my plans.  As I start to dry my hair, I begin to realize that the energy that I felt moments ago while I was taking my shower, is quickly converting into a feeling of fatigue.  I am struggling to continue to hold the brush and hair dryer because my arms are already so week and tired.  Disappointment immediately sets in.  I have already committed to myself, my client, my family, to be available to them, and in less than a 30 min period I see that I am in over my head and I need to rest.

This scenario can be played out in many different ways.  I can begin the day feeling horrible and cancel any commitments, knowing that I need to respect my limitations and get some rest, and then suddenly I can have a burst of energy and relief from my symptoms and a desire to participate.  This may go on for an hour, a few hours, a few weeks, a few minutes, it is always unpredictable and keeps me “living for the day”, which is great in theory, but when you are setting goals, and when you are dealing with people, sometimes you need to see a little further down the road.

I told my husband last night that I feel like I am driving in the fog.  I have a limited view of what is in front of me, and I honestly don’t even allow myself to strain to see past that anymore.  It hurts too much to put myself through the disappointment that comes from setting goals, or making commitments to myself or others in my life and to repeatedly feel like I am having them stripped from me.  Not to mention, this is also hard for friends and family as well.  When my family makes plans, they have learned to plan without me and if I am there that is great.  I have lost many friendships because of my need to have an “out” at any given moment when it comes to social plans.  It is tough.  People have to have some definition.

So, this week has actually, very honestly been a great week.  I feel pretty well, I have been able to get a lot accomplished, both personally, and in my work…. It is a good week.  But yesterday afternoon turmoil began within me when my youngest daughter got home from school and was settling down to watch a movie (which she is used to doing so that she and I can both have some afternoon downtime), and I announced to her that I would like to go swimming with her.  The confused and excited expression on her face both made me feel enthused and at the same time it shot a sharp emotional pain into my heart.  -You see, I can’t usually do things like this.  If I go to the pool, the heat tends to set me back for quite some time, and if I DO go I definitely don’t get in because the pain in my body always feels so intensely aggravated by the cold water.  As we were getting ready to go, she confirmed repeatedly that I was going to swim WITH her.  “Yes, mommy is going to swim too.” I would say, over and over and over again, feeling pleased with my choice and at the same time so sad that I had to reemphasize this so many times because she was afraid to believe me.  As we went to the pool, I commented on how cold the water was and how cold I felt.  She very quickly says “but don’t get out now please?”  She watched me so constantly and cautiously as we played together to make sure that I wasn’t going to get out and cut our time together short.  The time of connecting with my sweet girl was unbelievably precious and touching to me.  It made me realize again how much I miss this.  It made me long for more of this so strongly.  Of course, I always want to spend more time with my girls, but I have learned to compress those feelings and put them aside with the practical reminders to myself that I can only do what I can do… and in effort to not carry guilt around with me all of the time.

So here I am, in this good week, at home full of pain and tears.  I am so terrified of moving into this place emotionally and just absorbing and enjoying it, out of familiarity with how this typically goes.  This isn’t new territory to me.  I have had good weeks before, good months even, and I appreciate them so much, but as I begin to move into them as if they are a permanent place of residence, I put down roots, and brick by brick I build a stronger, more solid structure.  I add to my calendar, invest more deeply into my work, my relationships, and then… inevitably I get hit.  I remember so quickly that I am sick.  I had forgotten for a while.  That solid, beautiful structure that I was building now looks like giant, heavy, and intimidating work that has to be undone.  Those bricks represent progress at work, closer relationships, and appointments on the calendar, and each one translates into a number of phone calls that have to be made as I undo my commitments and explain that I have to push the pause button for an undetermined amount of time.  With each call that I make, with each sale that I lose, opportunity I walk by, and with each explanation that I give to my sweet girls, and devoted friends, it becomes more and more discouraging and painful.  And I feel that it’s possible that I got ahead of myself.  I jumped in too deep.  I tell myself that I need to learn from this, learn to keep an easier, less involved lifestyle…but… that’s very much the opposite of who I am, and I know that.

One foot in front of the other today I am walking on this thin rope that balances between the “sick me” and the me who is living life actively.  I am absolutely full of panic and fear to allow myself to settle into either side, so I am clinging to this rope desperately.  I know there are healthier ways, but I am a work in progress… and today this is what I’ve got.  I look out to my left into the beautiful view of this lovely lovely life full of smiles and cuddles and great conversations and a successful business woman providing for her family, and then I look over and see the view on the right.  It is so familiar, but so trying.  Even when I am there, I sincerely try to have a good attitude and positive outlook, but I never for a moment stop longing for the other side.  Is it possible to build a life in the middle?  Can I sit on the edge of a canyon and build a home there?  If I do, will anyone sit with me?  At least build a tent there for passing through?  At this moment that is all I am ready to do, and all I am hoping for.

 

Thursday – Reblog For Ya… :)

http://www.butyoudontlooksick.com/articles/personal-essays/im-still-me-just-slightly-modified/


Casting the First Stone

Dear friend,

I am not writing this in defense or response to how I have been personally treated, but rather in response to recently witnessing blatant discrimination and selective approval being given to others by people in my life who are basing their actions on their beliefs and convictions.  I know we are all struggling, learning, growing, but it just hurts my heart and surprises me each and every time I see one group “rise up” above another in pride, refusing to embrace and respect others who do not share our beliefs.  It just seems like such an outdated and ridiculous place for us to be in this current time in life.

If you were to examine my life more closely I can ensure you that there will definitely be something within its contents that does not align with your vision for how things “should” be.  There would no doubt, be something that offends you, something that you would do differently, a choice you would not support, a number of things that you do not remotely understand, and much that you could absolutely do and handle “better” and more effectively according to what you see as ideal or what you define to be right.  We could all do this to each other, given the opportunity.

The joy of the FB craze is that it connects us.   All of us really messed up, imperfect, quirky people, are now mingling about and sharing a world with each other that makes us appear to be a network that is walking through the journey of life and doing the best we can to do it well, together.  We observe how those in our network live their lives.  Maybe according to our perspective they are too candid or detailed with the info that they share.  Maybe we are “shocked” at the language that they use, the activities that they are participating in, or the person who they appear to us to be.  Or possibly, they say all the right things… they are clever, they are witty, or just have our stamp of approval because they seem like “good” people.  Whatever your impression, please do keep this in mind.  People are people and were there living their lives before you had the window of FB to peer through.  You were doing life with them, before you knew of the details that you now see.

We are not required to condone, invest in, or encourage any lifestyle that we do not support.  We are not either expected to change our lifestyle and our convictions to that which others in our world (FB friend, customer, co-worker, etc) are engaged in.  But if our personal beliefs cause us to feel justified in requiring another person to change into who we expect them to be as a pre-requisite for being treated with love, respect, or friendship, then I might suggest that the author of those particular beliefs is not actually a higher power, but possibly just the higher attitude of ourselves over others around us.

I will openly tell you (and knowing that not everyone in my life or my FB shares my belief) that I personally believe in God.  I believe in a God that created the universe and who set my life in motion.  I believe that God breathes life into us with a purpose and a plan.  All of us. I believe in Jesus Christ.  I believe that Jesus Christ walked the earth and lived and served as an example of love and God in the form of a man.  Though He did not have a FB page, I believe He did walk along side other people on this journey as we are.  He served them.  He mingled with them.  He met them where they were.  He hoped to inspire them to be all that they can be and to offer them a message of hope and peace.

The God and the Jesus that I personally believe in did not carry Christianity or religion as a tool tucked safely behind their backs and await unsuspecting people that they could attack with this handy tool as if it were a mallet.  Jesus did not wait for people to “clean up their act” before He would associate or be seen with them.  He didn’t offer a relationship under any pretense or guise.  He was sincere, He treated people with love and respect, and He did so knowing full well of whom they were and being completely aware of their quirks, bad habits, tendencies and differences.  He met them, accepted them, and embraced them “as is”.

And, by the way (just a side note)… Bible says that we “all have sinned and fall short”.  Is your sin greater than mine or vice versa?  Which one is worse?  Just because you can relate to (or practice personally) a particular “moral failure” more comfortably than another does not mean that we have the right to judge or call ourselves superior to someone who is struggling in a different area.  Do you know how ridiculous and prideful it is to cast out a group of people because of their “sin”, and then to overlook and embrace those in the category of our preferred “sin of choice” that we are more tolerant of or find more relatable?  There is not a single one of us who can claim to be blameless or perfect.  So how is it acceptable for us to “toss” people away because their faults, sin, lifestyle are more outwardly obvious or apparent to us than another’s!

The Jesus that I believe and the God that I base my life around did not submit that love and respect were to be earned, but that they were given freely and without exception.  So what I do not understand is why so many of us that profess to believe in this Jesus, and walk with God seem to have some perverted belief that the people in our lives are lesser beings then ourselves because they do not share our same lifestyle or belief system.  Shame on us for requiring that others around us “clean up their act” according to our personal convictions before they are worthy of our love.  Shame on us for thinking that we could live someone else’s life better than they can, when we have no idea of their past, the path that they are on, with little to no insight to their circumstances, and when we are completely ignorant of the personal purpose they are created for.

If you knew me.  If you truly knew ME.  You would find that my life does not align with yours as a complete parallel.  Most of those differences, I have to admit, are completely by intention!  I am an imperfect, “messy” human being (and might I suggest…as are you?) J.  I have habits that you would find offensive!  I make choices that I know very well that you would not agree with.  But despite how you think that should or might make me feel… (empty, unhappy, depressed, unfulfilled?), I have never been more whole and more at peace with who I am and who I am created to be!  It is so freeing to know and admit that I could NEVER be perfect, and that I am accepted and loved in spite of this.  I honestly believe that God has better things to worry about than so and so’s foul mouth, love for tobacco, or drinking habit.  I believe He is focused on bigger issues!  And I never cease to be shocked by the disgusting way that WE use our beliefs as a justification to discriminate, label, or cast out others for their differences and their contrast to our life.

And that is my two cents…

An Open Letter to Those Without Invisible Disability or Chronic Illness (Reblog)

This is a very direct, to the point letter written to educate on Chronic Illness and how to support someone in your life that is struggling with one.

http://notdoneliving.net/openletter/id

The Secrets That We Hold Dear

There is a web that often forms with abuse that can entangle you without ever alarming you of the fact that you are caught in its net.  The web is made up of secrets.  Secrets containing honesty, secrets containing pain…secrets that form and contribute to your true perspective and evaluation of a situation.  The most confusing aspect of this web is that its nature is so crafty and completely deceptive that it can very quickly lead you to sincerely feel that the very trap that you are being held in is not a trap at all, but that it is actually protecting you and keeping you safe.   Continue reading

My Toilet Overflows…

There are some days, where everything just works.  The stars align, the gods shine down on me and every bit of karma is sent my way as everything I touch feels natural and takes place with ease and grace.

Ok, ok… so that doesn’t really happen.

But there are some pretty damn good days.

Then, in contrast, there are those days in between, where I have to grab myself by the collar, lift myself out of bed and literally drag myself into living.  It isn’t a lack of interest or desire to participate in my life.  I love my life, and everything and everyone in it.  Every part actually, even the stressful and frustrating ones.

Today the limitation that overwhelmed me was fatigue.  I couldn’t devote the time to getting enough sleep to function well because my priority was getting to my four year daughers’ old’s Fiesta parade at school.  I would have to be physically restrained to miss THAT.  Continue reading