The Answer

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Acceptance only comes after awareness.

Acceptance is acknowledging what can’t be changed. 

Acceptance doesn’t mean liking something. 

Acceptance changes perspective.  

Acceptance is not resignation. 

Acceptance brings peace. 

Acceptance and attitude go hand in hand. 

Acceptance creates opportunities for growth. 

Acceptance requires tolerance. 

Acceptance is humbling. 

Acceptance is a process. 

Acceptance only happens with patience. 

Acceptance is an act of self-restraint. 

Acceptance is relinquishing control. 

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Five Years Later…

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Today marks an unusual and rather personal anniversary for me but, I’m choosing to share it because any time I can raise awareness about my disease, I feel obligated to do so. Five years ago today I underwent an open lung surgery to find out what was going on with my breathing and to determine once and for all if the images of my lungs were cancer or sarcoidosis or something else. I spent four nights in the hospital. My first and so far, (knocking on wood), only hospitalization for this disease. The diagnosis was sarcoidosis.

There are four stages for pulmonary sarcoidosis. I am stage four. Staging in pulmonary sarcoidosis is not like cancer staging, it does not necessarily predict prognosis. Staging in pulmonary sarcoidosis only determines what is seen by the physician in radiography. Stage four does mean that my lungs are scarred. I do have something called pulmonary fibrosis. I will be short of breath for the rest of my life because of it. I use inhalers to help me cope when my breathing is particularly difficult.

My life has changed a lot in five years. I could say that this disease has been the worst thing that has ever happened to me but it’s not. Even though this disease has changed my life in ways beyond measure and ways I would never have wanted or foreseen, it has also made me realize something fundamental about the importance of living in gratitude. I appreciate my life now in an almost primal way.

Having sarcoidosis has taught me the value of a simple life. I’ve let go of my need to strive and I am so much happier for it. Despite the physical hardships of my life with sarcoidosis, there is an easy joy to every day living for me now, that I did not have before I got sick and, it comes from a core understanding that control is an illusion. Once you lose your health, it puts all other things in new light.

Since my initial diagnosis, we have found the sarcoidosis in other organs and I have been on and off and on low doses of chemotherapy. There is no known cause and no known cure for sarcoidosis and treatment is really only used when the disease begins to impact quality of life or organ function. It has done both in my case.

So, I mark this anniversary with a bittersweet feeling. I hate this disease with a passion but I am equally passionate about what it has taught me about the value of living in peace and love and for the understanding that this very moment is the only one that truly matters.

The Tranquility Credo

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Resist what is wrong even when what is wrong is the easier thing.

Rise up for what is right even when it is the harder thing. 

Seek truth in the face of absurdity.

Seek to be kind even to those who are not. 

Be curious.

Be brave. 

Find peace because another’s chaos does not belong to you. 

Find courteous goodwill in the face of disagreement. 

Resist the need to be right rather than happy. 

Rise up in principled purpose for those most in need. 

Strive to be honorable in your actions and accurate with your words. 

 

A Question Of Transcendency

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Here’s what I don’t know. I don’t know if we assign meaning to the random out of sorrow when we are longing for those we lost or, if there is something truly transcendent that happens when we need it to. Maybe it doesn’t matter. Maybe the only thing that does matter is that these otherworldly events bring us comfort when our hearts are heavy, that they make us feel connected to who we lost and what we miss.

I’m in the mist of grief right now. The loss of my Zoey, my precious 14 year old Old English Sheepdog, to sudden death has rocked my world. Some have said that I will feel her presence around me if I am open to it. I’ve suffered profound loss in my life before and I admit, this has not generally been my experience so, to hear this yet again makes me skeptical. That being said, I’ve had two moments since Zoey’s passing that have given me cause to be more open minded.

The other night, I was walking my other Old English Sheepdog Abby. An evening walk was something Zoey, Abby and I did every night together before bed. It was never a long walk, just enough for them to do their business and get a little fresh air before bed. This particular night, was the first time I took Abby alone. I knew it would cut through me and it did. I felt Zoey’s absence intensely, just seeing the bush she usually stopped to sniff every night brought tears to my eyes but, in my desire to keep things as normal as I can for Abby, I swallowed my sadness and we slogged along, a knot in my throat.

Then, I looked up. The sky was full of clouds blurring even the half moon but there was one star that shone brightly. It danced and twinkled in the mist of the dark night sky and as I watched it, a feeling came over me like no other. I felt enveloped by warmth and for the first time in the past two weeks since Zoey’s passing, I felt calm. I didn’t want to cry anymore, at least for that moment and, I knew that star was Zoey. I felt that it was her letting me know that she would always watch over me.

Today, I spent most of the day feeling very numb. I thought I was done weeping, that there was no more use for tears. Crying was feeling like a pointless undertaking, like there was no more cathartic value in it. I don’t want to be numb but when the tears don’t come, they don’t come and you can’t force them. I also don’t want to be crying all the time. I can’t really have what I want, which is Zoey back at my feet, by my side or playing with her sister. So, I spent most of the day going through the motions, functioning but not really present. I even attempted to go to the grocery store but on the way, I turned on the radio and the song, “I will always love you” by Whitney Houston came on. It’s a song I have not heard for years.

The song begins like this…”If I should stay, I would only be in your way. So I’ll go but I know I’ll think of you every step of the way. And I… will always love you…” I burst into tears. I immediately thought of Zoey. I thought of Zoey being old and deciding it was her time to go, that she felt she was in the way long enough, that she didn’t want to be a burden anymore, not that she was but she always thought of me first. I know she did. She only wanted my happiness. Her love was completely unconditional. I think she knew my greatest fear for her was that she’d lose her independence. So, she did the last loving thing she could do for me and died quickly, without ever losing her dignity.

The song goes on…”I hope life treats you kind. And I hope you have all you’ve dreamed of.  And I wish you joy and happiness. But above all this I wish you love.”  The tears continued to pour down my face. I had to pull the car over. I wasn’t numb anymore. I was a puddle but, again I felt this incredible feeling of Zoey’s spirit. I felt like she wanted to tell me one last time so that I would have no doubt, just how much she loved me because she really loved me. As I did her. This was not nearly the comforting moment I felt looking at that twinkling star in the sky the night before but, it was poignant and profound and somehow made me feel yet again, that perhaps there is something to being open to allowing the spirit of those we love to surround us in our sorrow, that maybe it’s a good thing to be open to the idea that our love transcends all earthly understanding. Love is in fact forever and, it will find its way to us after death…if we allow it to.

If You Can’t Be Healthy – At Least Be Happy

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I know. I know. The title of this blog sounds pretty cheesy, trite and perhaps even platitudinous. Stay with me and hopefully the message will be worth the cliche. The idea for this blog came while my husband and I were walking our dog, Abby. She has a pretty serious heart condition called sub-aortic stenosis. My regular readers already know this because I’ve written about her before. She is at risk of sudden death. This is scary of course, but it is also a daily reminder to live life to the fullest and boy does she. She often inspires me and that is point of this post.

We’ve been told that Abby is “exercise intolerant” because of her condition but someone forgot to tell her that! She’s full of life, forever sassy and a buzz with energy. We do limit her exercise because we were told to but sometimes, we can just tell that she needs to burn off a little insanity. The other day we took her for a walk and she loved it. She pranced and frolicked about like any 2 year old dog should but, about half way through the walk she just sat down. She didn’t fuss and she didn’t cry and she wasn’t panting excessively. She just wanted to take a break. She knows her body better than we do and what she can and cannot tolerate. So, we pulled her off the middle of the path and to a shady spot and just hung out with her until she was done resting.

When she got up again there was a spring in her step and she was as frisky as ever. Noticing this, my husband said…”Well, if she can’t be healthy, at least she is happy.” These words spoke to me personally given my own health situation and I looked at him and said…”Hey, thanks for the blog idea.”

While it may be hackneyed to say this, happiness really is a choice. I’ve written about the concept of happiness being a choice ad nauseam, I know. Forgive me, please. But, I do so because it’s easy to forget. It’s easy to fall victim to everyday difficulties thrown our way. It is natural to lose hope when nothing is coming easy. It is way too tempting to find fault in others when we are too afraid to face something within ourselves. For some reason, we as human beings seem hardwired to notice the bad before we appreciate the good. I’m sure there psychological theories galore about this but none of that really matters. All that really matters is to get up every day and make a decision about how you are going to view the world and I’m not talking about through rose colored glasses. I’m talking about being brave enough to stare what isn’t right about your life right in the face and then flipping it off.

We have to acknowledge our challenges in order to make peace with them. Accepting something doesn’t necessarily mean liking it. We have to accept what is out of our control in order to find serenity and we can only find happiness when we have found peace so, we have to be realistic. I think Abby is realistic about her heart condition. She rests when we push too hard and she does it matter of factly, like it is perfectly okay with her that this is her fate. She doesn’t grumble about it. She is unapologetic. She takes it in stride.

I’ve not always taken my sarcoidosis in stride. For me, finding happiness despite this disease, has come in stages. Even so, I still have to make a daily conscious decision to be happy. It’s easier now than it used to be but my constitution is such that happiness isn’t always my first reaction when things are difficult. Gratitude takes practice. So, when I see how my dog lives in the moment and just enjoys her life, however long it may or may not be, I am reminded that how I respond to my own illness is a choice. I can be sour and resentful that it has taken my self confidence, my physical strength and my career, to name a few, or I can embrace that this is the challenge I have been asked to endure. Even while some of us are good at making life look easy, none us escapes hardship. Abby makes it look easy. I want to be like Abby. I want to live like Abby. I want to be happy with my day to day life. I want to be happy in the moment and watching Abby reminds me that I can be, that the choice is mine.

My body may not move with ease and I might struggle for air but, these are things outside my control. What is in my control is really rather simple. It is my attitude. I control how I respond to my disease and I don’t have to feel guilty for the things in my life that have changed because of my sarcoidosis. When I am tired I should rest without regret, knowing that when I am refreshed I am much better able to cope. Living with a chronic illness isn’t my fault. I did not do this to myself and there should be no self reproach for the fact that my body and brain don’t always cooperate. To be happy, I need to accept these things as just part of my reality. I’m gong to learn a lesson from Abby and if I can’t be healthy, I am at least going to be happy!

But For The Grace…

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The past week has been difficult in the sarcoidosis community. First there was a suicide and then there was a death from complications from this disease and finally children of a person with this disease found their mother on the floor of her home in need of immediate care. These are only the incidents I know about. I am sure there are many more quietly suffering. When things like this happen, I am reminded that I am sick, that I have a very serious disease. Most of the time, I try not to dwell about it. I try to act as if everything is normal and I am okay. But, I am not okay. No one with this disease is truly okay. We are all on the verge of the unknown.

Staying positive and striving to live the best that I can is the only way I know how to survive the “sarcoidosis life.” Once and awhile though, reality finds a way of seeping into my otherwise protected world of self preservation. I don’t live in denial that I have this disease. Far from it. After all I write about it, frequently sharing my trials, challenges and frustrations with anyone who is kind enough to take the time to read about them. I try to live in harmony with my disease. I strive to balance the uncertainty of it all with gratitude for the life that I do have. I work daily on finding hope and I make a choice to be at peace as much as possible. I have found the only real way to have a life and have this disease is to live with a thankful heart. Things could always get worse tomorrow but today is all I have.

When disaster, death and sorrow rip through my sarcoidosis community, I am made painfully aware of the saying…”But for the grace of God go I.” At any moment, I could be the one being written about because I’m no longer here to be the writer. This reality, this knowledge, this awareness is humbling and deflating. It takes my breath away and strips me of that small bit of comfort I know is perilously built on the hope that there is more to life than my disease. This cannot possibly be what I have become!

When the reality of what this disease is capable of smacks me in the face, my shields come down and I am laid bare, made vulnerable by the depth of destruction this disease is capable of inflicting. It is probably important to be immersed in this reality from time to time, to be reminded that none of us knows what is in store. This truth, while incredibly painful to acknowledge, gives me a resolve to press on, to continue fighting for my life and look for the joy in small everyday things, to remain vigilant that I am fragile and to know that grace is with me when I remember to look for it.