When you are confused…Learn 

When you grieve…Weep

When you are divided…Unite 

When you are lost…Seek

When you are stuck…Change

When you are alone…Join 

When you cry…Laugh 

When you are ill…Heal

When you are scared…Hope

When you are uncertain…Pray

When you argue…Listen

When you are peaceful…Trust 

When you are grateful…Share 

When you despair…Hope


The Power Of Unburdened Truth


There are times we don’t talk about my sarcoidosis for weeks at a time. It’s almost as if my disease has just become part of the fabric of our lives. There is little need to discuss it. It is, after all, a known quantity in our lives. I am sick. What else is there to say? Why should we dwell. When all is said and done, we don’t need words to know the impact sarcoidosis has had on me and on us, the loss of income, the slower pace of life, the ease with which I now cry and feel helpless and ineffectual because my lungs burn in a fiery blaze, a blistering ache every time I take a breath and my body writhes in unexpected and mysterious discomfort for reasons no doctor seems to understand and, always at the most inconvenient of times.

Tonight for the first time in quite awhile, we did talk about it. I talked about it. I admitted a rarely spoken ugly fact about living with a chronic disease. I said that it’s hard. I said that I hate it. I don’t like to say these things. I feel like when I do, I give the disease power over me, power I loath to feed that horrible ogre who took up unwelcome residence inside my flesh and organs, my bones and limbs. I do hate it though and that’s the simple truth of the matter.

There are things about becoming persistently unwell that actually make you appreciate life in deeper and more profound ways. Time changes because you realize how much of it you wasted when you were well and worried about stupid, mundane, often petty things, stuff beyond your control, outside of your grasp, the injustice of things not going your way. What I know now because of my sarcoidosis, is that most things don’t turn out as planned and that this is meant to part of the adventure of life, not something to fret over. The unplanned events in life are what build our character because they are what shape us through the choices we make about how we face them.

I am grateful for the knowledge about life that I have gained from being knocked out of the rat race, the constant chase for the next best thing. I no longer have the drive or the need to be the best at everything I do or in the know about every stupid latest fad or fashion. Instead, I find my life of forced simplicity to be an unexpected blessing. There is ease in it. It does give me pause to be still and know that life is not only fleeting, it is profoundly short and when every breath you take is literally painful, well, this just gives you a better understanding of life and death, how the two are intertwined and cannot be unwoven from each other. There is a humanity and a humility that comes with the knowledge that death is forever chasing life. This is a little secret that can only be understood once your very being has been threatened by the mayhem of disease.

Most of the time, in my acute awareness that life is a fragile momentary passage of time on this insanely beautiful planet and, despite the unyielding stumbling blocks of life inside an uncooperative skin, I choose to be grateful. I choose to focus on contentment rather than disappointment. I seek serenity instead of worry. I long for peace instead of disturbance. However, I would be remiss and even a liar, if I didn’t once and awhile admit, despite my abhorrence to the fact that I loath to acknowledge it, having this disease is hard and I do hate it.

So tonight, I let the floodgates open but, only a crack. I released the burden of the all too often unvoiced reality about life with a chronic health condition. I admitted that I feel weary sometimes. I disclosed my loneliness and insecurities. I shed light on the ugly sorrow of a body burdened by disease but I only did this so that these demons cannot swallow me whole. Sometimes the only time the truth can hurt you is when you’re not honest. Feelings are only as powerful as you allow them to be. I do grieve and this disease does make me sad but when I am honest, when I acknowledge my broken heart and liberate myself from being mostly stoic and strong and outwardly fearless in the face of constant uncertain health, I am better able to appreciate the simple joy that is life and I am free to continue living with grace and acceptance of what is rather than what will never be.

Taming the Beast Inside Me


What is it that I should write about, I ask myself? I don’t know echoes the answer in my vacant head as the curser blinks on a blank page of regretful emptiness. If I write about not knowing what to write about, will it clear my mixed up mess of a brain? Given my current state of mind, considering the answer, I’ve come to a conclusion of doubt and resistance. I am angry that words defy me today. I am frustrated by my lack of imagination. Where has my sense of artistry gone and why has it left me abandoned and alone?

My blog is supposed to provide comfort to the chronically ill but in truth, I’m tired of being chronically ill. I’m tired of pushing down the endlessly dreary feeling that my life has come to nothingness. I think I’ve lost my sense of moral outrage that my body has betrayed me. This is my new normal and I fear that I have come to accept it as such. I am broken. I am defeated and I am beaten. Sarcoidosis has subdued my purpose and stolen my determination to continue the fight against the intolerable fact that I am not who I once was or who I want to be.

Sometimes my sarcoidosis feels bigger than I am, like a giant ogre ready to oppress and slay me into submission, taking what little will I have left and devouring it as only a monster can do, striping me of hope and purpose. Sometimes it feels like because sarcoidosis changed my life so dramatically, it has ransacked my identity, my passion and my drive. I don’t know who I am some days other than a person with a chronic disease, forgotten by the rest of the world, left in quiet isolation to wilt and wither away.

I know my disease is not who I am. I know these feelings are only temporary moments of insecurity, brought on by a body changed through disease and a life altered by unwelcome illness. I know that I am more than my sarcoidosis. Though I don’t yet know how, I am convinced that I can tame these beastly feelings inside me because, my spirit may be shaken but it is mighty. I know in the depth of my soul that I am tenacious and whatever demons try to slay my animation will ultimately be beaten. So these heavy feelings I am experiencing, while they impede my ability and even my desire to write for now, they will not cripple me forever and they will not permanently change my want for hopefulness or my inclination to seek joy. I will find my passion once again and words will defy me no longer.

The Texture Of Life


We cannot go through life unscathed. No one enjoys its grace while escaping the darkness. We cannot live if we spend all our time running from pain. Scars are just part of life and if we leave this world without them, then we didn’t live, we merely existed. Life’s grace was never within our grasp. It’s a conscious choice, to live or to exist, to seek grace and accept sorrow. To live, we must make ourselves aware of all of life’s textures, the way it weaves through us in both glory and shame, happiness and sorrow, recovery and pain, comfort and fear.

This journey we are meant to take, this life we are asked to live, was not given to us easily. We must earn its joy through our willingness to accept its heartache. Every emotion we feel has an equal and opposite one, with love comes loss, with grief comes gratitude, with joy comes sadness. To be alive, to truly live, means that we must consent ourselves to receive the good with the bad. We must unlock that part of ourselves that guards against the darkness. In unreserved fashion, we must fling open the door to our heart and let in both fortune and tragedy.

It takes a steely resolve, a deliberate desire to avoid regret, a willingness to be strong in the face of hardship to walk this earth in a vulnerable way, to allow for the mixture of jubilation and triumph and melancholy and despair that life heaps upon us. Oh how it is easy in a way, to build walls to ward off the despondency, the loss and the hardest part of life. Yet, how lonely too it is to live behind such barriers. Life is meant to be felt. It is meant to be messy. It is meant to go up and then down, to grow and then to die and in a time and place of its choosing, not ours.

This is why choosing to live rather than exist is so important. We don’t know what each day, let alone what each hour of our life holds for us. We can accept its beauty with the ugliness or we can later mourn that we missed what it means to love, to hope, to grow, to seek, to know. For when we choose existence, we choose stagnation, we choose loneliness, we choose a sad kind of stillness. Yet, when we choose life, we choose all of the above without remorse. We come to understand the scars we have simply mean that we knew love, we understand passion, we had a purpose, we took a chance and we have nothing to rue or regret.

A Question Of Transcendency


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.

The Truth About Grief


It is universal…

It is lonely…

It does not end…

It changes over time…

It makes other people uncomfortable…

It resurfaces with every new loss…

It is individual…

It cannot be avoided…

It has no timeframe…

It strikes without mercy…

It is as natural as breathing…

It is part of life…

It is inconvenient…

It both clouds and clarifies our thinking…

It should be felt without guilt…

It means we loved deeply…

The Irrevocable Bond Of A Guardian Angel


I was chatting with a friend today, who is not only an animal lover, she also has a serious chronic health condition. She was asking me how I am doing with my grief over losing Zoey. For those who don’t know, Zoey was my fourteen year old Old English Sheepdog. She wasn’t sick when she died even though she was old. According the vet, she had a sudden and unexpected “neurological event.” I have been in shock and sorrow since it happened. If truth be told, I am reeling in grief. My friends have been very supportive since this happened and this particular friend said something that has stuck with me all day. She talked about how our pets, our fur children, as I like to call them, remain loyal to us despite our illness. People often fall away after illness hits us. Their lives move on because the illness didn’t happen them and we struggle to keep up. Our fur kids, they slow down with us. They are more than happy to be by our side, in sickness and in health. They watch over us. They protect us and this only strengthens our bond with them.

Anyone who has a fur kid, loves their animal, of this I am sure, but there is something to be said for the loyalty they do show those of us with chronic illness. There have been times I have been too weak, too fatigued to leave my house because of my sarcoidosis. At those times, I have always been able to count on my fur kids for unquestioning companionship. Zoey knew me in good health and in bad. I think once I got sick, she sensed something about me had changed because the depth of her connection to me, the way she would velcro herself to me became more magnified. She watched over me all the time.

After I got sick, Zoey became my dog. She made herself my dog, a self appointed guardian. She still loved her human daddy but she seemed to make a conscious decision to favor me. We certainly had the opportunity to spend more time together after I stopped working but, the change in her toward me was notable, much more protective. My presence in her life became more important to her too. Her drive to fortify me, to keep me safe, gave her a greater purpose. Her constant attention alleviated the loneliness that only those with chronic illness understand. This was when I think she and I become permanently woven into the core of each other.

Zoey was what another friend of mine called my “heart dog.” I think this describes our bond entirely. She had my heart wrapped up in hers as I did hers in mine. As she aged and needed me more, I was there for her. She had become my security blanket when I needed it because she understood more than any human seemed to know, the depth of my fear from getting sick. I was her protector when age began to steal her confidence. I made a promise to her when she turned twelve that when the day came she no longer had good quality of life, I would do the right thing for her. I had no idea that I would be blessed with two more full, happy and memorable years with her. Nor did I know I would be fortunate enough to have that moment made clear to me. Despite the pain that I feel in losing my security, my “heart dog”, I was able to keep my promise to her. She had fulfilled her purpose, as all dogs long to do. She made my world a better place and she made sure I was going to be okay.

I take a lot of medication for my sarcoidosis. I go to the doctor when I am supposed to. I eat a healthy diet. I exercise and I do all that I can to take care of my physical body since, getting this lousy disease. It was Zoey though, who helped to heal me. I am not in remission from my disease but I know it was Zoey who made me better than I would have been had she not been there during the darkest moments of my disease. She gave me purpose, priceless joy, unequivocal love and a reason to face even my most difficult days. I know now that no matter what happens to me, no matter what this disease does to me, I will always have her spirit to draw strength from. It won’t be the same as having her physically at my feet but she gave me what I needed to cope. She made me a stronger person because she taught me to look for happiness in simple everyday experiences. Zoey and I were side by side in all things. This is what I am most grateful for and also what I mourn the most in her passing. We have an irrevocable bond and I know she is with me always. She will forever be my guardian angel and I can face whatever challenges are ahead of me because I had a love like no other. I had Zoey.