Sometimes I step back and kind of watch myself for a minute, and I see that what I am doing is not at all healthy.  This running thing.  I see it, but I sincerely am addicted.  You see, if I can run at a pace that is fast enough, I can actually “beat” my illness.  I can temporarily feel like I’m winning.  I can achieve things that have previously seemed impossible, and the gratification from that creates such a high, that I am not sure that I am willing to let go of. 

  Sometimes I even take pride in this ritual.  Well… often, I take pride in this ritual.  It is self destructive in one sense, and valuable in another.  I’m not sure how this all ends.  I don’t want it to end with me being counted out, and leaving a mess that I’ve created for those around me.  I’m pretty sure it ends with me being counted out though.

  I feel like in all of this madness there is this amazingly powerful denial.  I feel like I am doing my damndest to act as if I don’t know what’s coming.  But I know.  I see it happening.  I am *literally* falling apart.  I see the changes.  I do see them when I look, but I spend my time trying to look elsewhere. 

  I just want to live.  I want to live my life.  I want to buck all of the excuses, and I want to leave an impact on this world.  I want to better the lives of the generations that follow my time.  I want to influence you in a positive way.  I want to live to serve.  I want to live to love.  To better others, to bring peace. 

  The truth is.  I could just stop.  At any time.  I could just stop this running, and my body would be where it should be.  I should be resting.  I should be living simply.  According to these rules.  Sometimes I come so close to pulling the whole thing down and coming to a place of “acceptance”.  But is taking care of myself worth the investment, if I can no longer have any impact?  What am I preserving myself for after all?  Isn’t that what life is about?  Spending all you have?

  And then.  Then there’s that word.  That word that makes me feel like putting my fist through the wall, because I think it’s a total crock and really that it just hangs out to make us feel like we are always off kilter. 


  A little of this, a little of that.  Slow and steady.  Balance.

  Here’s the deal.   The scale is tipped my friend.  I am internally created with a dysfunction that causes an extreme bias towards one side of the scale.  In order for me to achieve so called “balance”, I have to work two or three times as hard just to get to zero.  So ya… I’m running.  I’m running a mile a minute and exhausting everything I’ve got to tip the scale even slightly towards the other direction.  And I know from the outside it may look like some twisted game of self sabotage, and honestly, I suppose it is… but… I wasn’t put here to sit under the radar. 

  I will keep running until the weights that are currently creating pain and slowing my pace, become too heavy to bear.  And the whole time I’m running, I will be carrying a torch, and I will be starting a fire with every fucking step I take, because some day I will have to stand there and look back, and all I want to see are flames.    



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.


Health of a New Kind

I’ve been waiting for the blog fairy to pay me a visit and sprinkle a little inspirational dust my way, but it’s been a while and I am beginning to realize that she may just not show.  So with or without her, I shall proceed.

Today I find myself feeling hopeful as I look towards a new week and what I also believe is a new chapter in my life.  I realize that I have been in a very lengthy “waiting period” as I have been waiting to find solutions, waiting for recovery, waiting for healing, for answers.  And life, as it tends to do has continued to go on around me and has not waited for a moment by my side.

So that brings me back to today.  Today I recognize that I have been neglecting a number of areas in my life.  Areas that contribute to making a person feel like a person, a woman feel like a woman,  an individual feel like an individual, and I know that is not acceptable and nor is it helpful to me as I try to grow and go forward.  This realization didn’t actually start today.  I move way slower than that!  I have been processing and analyzing these feelings for a number of weeks and am just now beginning to give all of this a little shape and meaning.

I have been taking some new steps with my health, which I will write about in another blog, but the bottom line is that I am beginning to see little glimpses of hope in the possibility of becoming stronger physically.  As I began to let this hope slip in (which for the record, at this present time “hope” has to be very persistent to get through the walls I have created over the years in this area in order for me to even acknowledge it slightly), I simultaneously,  gradually began to feel more and more unsettled inside. In fact, I felt so absolutely conflicted and unhappy with my present circumstances and longing for newness that as I was walking out of a store with my daughter I suddenly and impulsively grabbed an application and applied for a job there!   Mind you – Intellectually I know that a new job is not the answer, and particularly one with such limited flexibility, but the need to feel qualified and capable, and the need to feel   human was becoming so strong that I just wanted to grab on to any change as if it were a string tied to a helium balloon and just float away with it.  I actually went on to apply and get offered several jobs over the course of the next few weeks, only to be reminded that the opportunity for income and the flexibility that I require is at best where I am, in my own company.  I am thankful for the gift of being able to do what I love to do and do it in an environment that is accommodating to my physical limitations, but if not a job… what was I looking for?

So here I am, after several weeks of this unsettled search for something, and I am recognizing that neglect is in fact the source of my deep agitation and dissatisfaction.  I have slowly learned to make my health and medical care a priority and though that requires our financial resources and time, I have a greater feeling of peace about this than I have in the past.  Not guilt free yet, but maybe a little less guilt than I previously inflicted on myself for watching these resources be used.  This is progress, and I am going to continue to try to invest in these areas and do so with more confidence and peace.   I have however, failed to notice that as this one area has developed, I have slowly decreased the value and investment into other areas in my life.  It’s as if I made a trade in order to ease my conscience.   So the remaining parts of me and the balance in my life have become quite depleted and off kilter.  Even in the very simplest of areas.  No wonder I have felt so unsettled.

I have recently resorted to merely existing and taking up space, but not actually putting value into that existence or treating myself with the respect tending to other areas in my life.  I am aware that I don’t have unlimited resources to make up for lost time and take care of everything in one fail swoop.  But I do have some resources.  And in the same way that my two beautiful girls have their hair cut, their clean & presentable clothes, are current on their dentist appointments, & have plenty of “extras”, and just as my husband feels confident in his clean, dependable car and his personal appearance as he goes about his day, I have a need within me to be respected in this way as well.  And the lack of respect has not come from those around me.  The lack of respect has begun within me, and will only begin to change with small adjustments, little investments and acknowledgements, until it becomes a new habit and perspective.

So today is a new day.  It is Monday, A start of a new week, a start of a new awareness, and another step towards health of a new kind.

That Dirty Two-Letter Word…

One of the most difficult lessons for me as I am learning how to live this new life with my illness is learning how to set boundaries, and when to say that dirty, two letter word… no”. Most likely the reason it is so hard now is because it was not necessarily my strong point before I got sick!  It takes a clear vision and direction, the ability to prioritize, as well as having self-respect to know when to draw a line and when to give or bend…and self-respect is still a developing quality in my life.

My tendency is to avoid the issue rather than directly say the word “no”.  I will drop hints with the hope that the other person will understand and back off by reading between the lines.  I will dodge phone calls and go into hiding rather than directly face the situation.  I can get amazingly creative in coming up with ways to communicate my feelings without ever actually saying the “N” word!  But of course, I am seeing that there are many instances that this tactic fails and it just prolongs the inevitable and causes a simple issue to be drawn out and become a complicated and confusing one for both parties.

Ugh…     my backbone is there…     somewhere

Because I have so much love and respect for the people in my life, it seems that currently, the best way for me to recognize when it is time to draw a line is to try to pull back and view the situation as how I might advise a friend who is going through it.

For example:

If my friend were in this position would I think she should feel guilty for saying no and setting a boundary in place?  If my friend said no, would she deserve to look like the bad guy in her own eyes or anyone else’s?

Usually the answer is very obvious and clear to me if I look at it this way.  And the truth is, that I deserve the same respect and freedom to make decisions that I feel best serve myself and my family.

No questions asked.

I assume the best way to continue to grow in this area is just to practice doing what I feel is best.  Even if it means I have to call the person right back because I didn’t have the nerve initially to say what I should have said.  If I handle myself with self-control, with kindness, and am true to myself by recognizing that I have limitations and they are there for a reason (to protect and preserve the priorities that I have defined and to enable me to invest in and cultivate the relationships and goals that are most important to me), then I can have peace and leave the other person’s reaction and response to them and feel comfortable with my decision. I also have to accept the fact that the reasons that I have and the basis for my decisions may never be satisfactory to the other person, and that I do not need to explain, justify, or expect them to be in complete harmony with my choice before I can make peace with my decision.  As much as I love people and I love to give of myself and resources,

Generosity, when not partnered with boundaries, can quickly turn into self-deprecating and counterproductive behavior.

The line is an absolutely fine one, and is difficult to recognize, but I am going to continue doing my best to train my eye to pinpoint that place where the former transitions into the latter.