Strength In Unexpected Places

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I’ve been thinking about what it means to be vulnerable. Vulnerability is described as being susceptible to physical or emotional attack or harm. Generally it is a word associated with weakness. Being vulnerable makes you defenseless.

Yet, it seems undeniable that we cannot be ourselves, our truest most beautiful selves, without exposing who we really are and when we do this, we are made bare. All the walls and defenses, the fortresses that we build to protect our raw emotion, to keep our sorrow and fear at bay, must come down for others to know us.

It’s a scary prospect to put ourself in a position to be judged and perhaps even ridiculed but to be vulnerable is to expose, without regret, the core of our being, to tear away the layers of self protection, to put our ego aside.

As I think about what it means to be willing or even able to let down our guard, to put away sarcasm, to drop our ability to dodge questions about ourselves, to let go of humor as a weapon, it makes me think that being vulnerable actually takes a rare inner courage. And, if being vulnerable takes courage then perhaps it is more a strength than a weakness.

Maybe making ourselves bare, making ourselves defenseless is really being brave and if exposing our truest self is brave than maybe being vulnerable is really being strong.

After all, don’t all truly good things come from being vulnerable? We cannot know love without it. We cannot be creative without it. We cannot change without it. We cannot know pleasure without it. We cannot be at peace without it. We cannot have faith without it.

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Doubt…

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A lack of knowing can be a scary prospect.

Indecision is a frustrating thing.

Suspicion can lead to paranoia.

Confusion sometimes creates insecurity.

Wariness is protective in times of uncertainty.

Apprehension calls for cautious maneuvering.

Cynicism begets bitterness when left unchecked.

But a little bit of doubt keeps things honest.

Until It Happens To You…

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Early in my diagnosis, a whole new world was opened to me and I found myself lost and struggling to leave it. I wanted what I thought was “normal” back. I didn’t like what was happening to my body, or my mind for that matter. The world that opened to me was terrifying and lonely. It was the world of the unwell, the chronically challenged, the forever changed.

There were a lot of things about being new to this world that were difficult, but one of the hardest was learning to use language that best helped me communicate my experience to those who were still living in the world of the well. Because, when you live in the world of the well, you have no idea what it’s like on the other side.

You can be sympathetic. You can be kind. But, you cannot understand this strange and other worldly place.

What I know now is that until it happens to you, you’re not really meant to understand it. You’re not meant to understand the happenings in this bizarre world of invisible illness. You see, because that’s the thing, we look just like you. We even act like you but we are most certainly not you.

We are creatures unto ourselves, living in a secret world of unseen seething physical pain. We hide it and we hide it well. We do this for you. We don’t want to make you uncomfortable because we know you cannot communicate with us when we do. So, we do our best to look good and speak of happy things.

We strive for what you call normal, knowing that even at our best we fall just a little bit short. Yet, we know that trying is better for you. It makes you more comfortable with us, with our kind, so we do it no matter how we feel. You don’t appreciate it. You take it for granted. You expect it.

This used to make me angry, infuriate me in fact. Now I just accept it as the social order of things, because what I know now that I didn’t know when I first entered this other world, is that until it happens to you, you don’t just lack understanding of it, you lack respect for its power.

This other world is a very powerful place. It is a place of sickness and pain and sorrow and grief and life altering things. Until it happens to you, you cannot also see the hope in this place. Instead, all you glimpse is the darkness and uncertainty and these are not things of your world.

What I know now is that you are more afraid of the world to which I belong than I could ever be. I am on the other side now. You are not. I am no longer silently tormented by the fear of the unknown. You are.

So until it happens to you, I will respect your lack of understanding. I will not hold it against you. I will put up with your ignorance and inability to communicate. I will do all that I can to make you comfortable so that you don’t have to fear what I know. I will continue to pretend that all is well because this is easier for you. It will always be easier for you.

Until it happens to you…

The Lottery Ticket Doesn’t Tell The Whole Story

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Life with sarcoidosis is not unlike purchasing a lottery ticket. Sometimes you win and sometimes you don’t. Winning means that you have a form of the disease that is mild and remits easily within a relatively short period of time…never to return.

Losing, on the other hand, means a life time of ups and downs from this bizarre illness…a more chronic version of the disease.

I bought a losing ticket.

Right now I’d say that I’m in a bit of an “in-between”. I’m not up. I’m not down. I’ve been better but I’ve also been worse. So long as I take my medication, I hope I can stay in this “in between” place for awhile. My pain is usually manageable. My breathing slowed but not halted. My legs are weak but I am still mobile.

Really, as things go, I’d say that while my disease is chronic, I have at least found medications that keep my symptoms at bay for periods of time. I get glimpses of a normal, or sort of normal life, from time to time.

And when things are not normal, when I have a bad day, I can usually rest my way out of it and start fresh again in a day or two.

Sure, everything is physically harder now but I’ve grown accustom to it. It’s amazing what you can learn to adjust to when you have no other choice. My life may be boring to many. Despite the fact that I do push myself, I am limited in ways I once was not.

I’m okay with that though. I have to be because I won’t let purchasing a losing ticket make me a bitter person. The odds of winning the lottery are generally stacked against us anyway, so what’s the point in being bitter when you don’t win?

If purchasing a losing ticket taught me anything, it’s that I can still be a happy loser because, I decide if I am going to appreciate life and be grateful or sulk and feel sorry for myself.

I decide if I am going to wallow in pity or figure out a new way to enjoy each day.

I decide if I am going to suck it up and accept the pain or moan and groan that I’m not as strong as I used to be.

Generally, I decide to stay positive and when I do, it doesn’t matter what that stupid lottery ticket says because I can still count myself a winner.

Simplicity

simple

Beauty unto itself

Less truly is sometimes more

Graceful in its tranquility

Joyful and free

Clean and pure

A blessing of quiet repose

Unadulterated ease

A state of understanding

Accessible yet sometimes elusive

Natural and plain

Uncomplicated in its spirituality

Happiness and peace

Always stress relieving

Often underrated

Escaping Entrenchment

I write a lot about my dogs, especially since I am now home with them and spend so much time with them. Watching them and being with them has been a gift, not only because of their unconditional love, but because when I watch them and interact with them, they teach me valuable life lessons.

Zoey is my old lady.

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Lately her age is starting to show. Her movement is slower. She has some difficulty getting up from hard slick surfaces now. She’s no longer a big fan of the staircase. She can’t walk as far on our daily walks and she needs more frequent naps after playing with Abby.

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And, we recently started her on daily pain medication.

It’s been hard to watch her struggle knowing there is only so much that I can do for her.

The other day my husband said that he wanted to take a trip and my first reaction was not to go because I was afraid Zoey could not handle the stress of travel. My protective instinct kicked in and I wanted to close Zoey into a safe little bubble, somehow thinking this is what would preserve her health.

Eventually I realized that doing that is actually inhibiting her. It’s not allowing her to live whatever amount of time she has left to the fullest. I don’t want to do that to her. I want her to enjoy her life. And, she loves her life. She loves to travel. She likes adventure. She likes to be wherever we are. So, I changed my mind and I told my husband that we should take our trip.

I realized that this is what I do when I feel fearful or sad or uncertain. I entrench myself in an invisible cloak of control. I mote myself in prison of unrealistic safety. This is how I sometimes survive my life now with sarcoidosis. It’s not a good way to live. I don’t even realize I am doing it until something shows me that I’ve done it again! Were it not for Zoey, I might not have fully come to understand the negative impact this has on my life…and on hers for that matter!

Thanks to my old girl, I’ve learned that I need to dam up the mote and dig out of my entrenchment and change this habit. I’m working on it and it’s not easy but it’s worth the effort so that I can live more fully and freely.

So, thanks Zoey…for teaching yet again…that living…truly and in the moment…is what matters most!

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My Myopic Pathetic Little Life

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Someone recently commented that my husband and my dogs are my “whole world.” I was a little taken aback to hear someone say this, to know this is how they see me, as I see my world as so much more than that. I’m not defined by these things alone. There is more to me. I asked my husband about it and he said that my world was “a bit myopic.”

Now, if you don’t know what myopic means, it means nearsighted, laking imagination and is synonymous with words like, uncreative, unadventurous and narrow minded.

He went on to say this, “…but that’s okay because you have learned the world is a cruel place.”

Really? Come on!

Now, anyone who knows me or regularly reads my blog, knows that I love my husband dearly but this hurts. It stings like a slap in the face. And to hear someone tell me that my dogs and my husband are my “whole world” and that my world is shortsighted back to back feels like a body blow.

The hurt was so great that I actually had trouble sleeping last night. I felt physical pain from being told that my world is basically pathetic, that my husband sees me this way. Maybe I was being too short sighted to notice.

But, I don’t see it that way. I don’t see my life as insignificant. I don’t see my world as pedestrian. I love my life. I love my life more now than I ever have and that’s despite this lousy disease or maybe even because of it.

What I know is that I spend a lot of time at home. I do this because my sarcoidosis wears me out. I do this because I can’t breath with ease. I do this because my legs are weak and my body is uncooperative. I do this because I want to conserve what energy I have for my husband and my dogs…my family…such as it is. If that means I am short sighted or lacking in adventure, then so be it. I thought my husband understood why I do what I do and I thought he appreciated it as I do it large part for him, for us.

I could go back to work tomorrow. I could get all wrapped up in a career again, feel sick all the time and hate life just a little bit. But, I don’t want to do that. I never want to do that again. I don’t think that lacks foresight. I think it is actually incredibly intelligent on my part.

There is no escaping my disease and what it has done to my life. I have learned, I thought, to live with it with a modicum of dignity and made positive adjustments for the betterment of my relationship and our happiness. Am I wrong?

I am not at all unrealistic that my life is difficult. I am not at all unrealistic that I cannot do what I used to do but at the same time, I am not going to justify my small little life to anyone, not even my spouse.

My world may look small and perhaps pathetic to some, maybe even to my husband, but to me, despite the challenges, is beautiful…or so I thought.