He Turns 70

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What do you give the man who has everything on such a momentous day – a 70th birthday? Material things are a means to an end for this man. And this man has always asked for socks and hangers on gift giving holidays. He’s not getting socks OR hangers for his 70th birthday.

This man turning 70 is a man admired by many and full of love for humanity spending most, if not all of his professional career in the service of others and volunteering countless hours to those in need, sharing and lending his experience, strength and hope with the most disadvantaged.

This man turning 70 is a man brave in the face of challenges and after losing his beloved wife of 20 plus years in the most cruel and abrupt fashion, he forged on looking toward the future while never losing sight of the past.

This man turning 70 is a man able to reinvent himself and not only survive the unexpected but thrive despite it or perhaps because of it. He has a way of taking the darkest of situations and turning them into light.

This man turning 70 is a man full of hope, full of passion and always idealistic even after 70 years of life. He uses this idealism to better his community and where he sees a need, he strives to find answers, to bring relief and end suffering.

This man turning 70 is a man in constant search of peace and happiness and joy and his smile and laugh are infectious.

This man turning 70 is always growing and learning. He reads non fiction like most read fiction, devouring knowledge like M&M candies…always looking for more and never tiring of it.

This man turning 70 is all about loyalty and love and kindness, taking care of step children as if they were his own for which one is particularly thankful because had this man not been there, who knows where she would be now.

70 years of a valued, treasured life.

70 year of a gifted life.

70 years of a life shared with others more grateful than words.

70 years of a life well lived.

Bob, I didn’t know what to get you so I give you these words shared from deep within my heart and with more love than can fill the Grand Canyon.

Happy Birthday! Happy Birthday! Happy Birthday!

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Without

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Without sadness we cannot appreciate laughter

Without rain we cannot appreciate sunshine

Without rough edges we cannot appreciate smoothness.

Without waves we cannot appreciate calm waters.

Without darkness we cannot appreciate light.

Without challenge we cannot appreciate reward.

Without struggle we cannot appreciate peace.

Without change we cannot appreciate consistency.

Without black we cannot appreciate color.

Without boredom we cannot appreciate excitement.

Without illness we cannot appreciate health.

Life is full of contrast and without it we would be lost.

 

“Sarcoidosis Road”

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Like a hilly narrow lane full of pot holes and dead run over animals, riding the road that is Sarcoidosis, has hairpin twists and turns. The pain and discomfort it brings often feels like an on coming 18 wheeler. Every morning you wake up, grip the wheel and hold on tightly, attempting the best you can to swerve and weave your way through the traffic of the day.  A sour stomach. Aching joints. Chest pain. Coughing. And all you see ahead of you is more traffic. Headaches. A raging fever. Bone pain.

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Just as you finally get cruising along, aches and pains dulled for now, the traffic jam safely in the rear view mirror, you suddenly hit a red light. Brain fog. Nerve pain. Leg pain. And this light lingers. You wait, at first patiently as you watch others cruise past you. And you wait some more, eventually realizing the light is not changing. Heart palpitations. Back pain.You creep forward hoping against hope to trigger a green. To feel better.

After what feels like an eternity, the light changes to green and you’re on your way once again. Now late for the rest of your day, the rest of your life, you pick up speed and try to make up for lost time only to be side swiped by on coming skin lesions, rashes and blurred vision. The car is not totaled but the engine is stalled. Fatigue. This time you must pull over for help.

When help finally arrives, it’s not what you had hoped for. No knight in shining armor to rescue you from the daily grind of aches and pains. Instead what arrives is a dilapidated tow truck with an inferior towing capacity that barely manages the mildest of symptoms. Prednisone. Maybe methotrexate. Or if you’re super lucky, both! But you’re told it’s the best that can be offered at the moment so you don’t complain. You hitch yourself up and chug along.

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Arriving at the garage for repair, you’re told the engine has been damaged and some parts can be salvaged with some work but others might need replacing. The cost is staggering and you’re not sure you can afford it. Yet, if you don’t pay the mechanic for his work, your car will never run again. So you do what you’ve got to do and you dig deeply into your pockets for spare change nearly unable to scrap enough together for the cost of the repairs.

After a long delay, missing many days of much needed work, your car is back on the road. And even though the mechanic did what he could to repair it and make it look like new, as often happens after a wreck, the car never runs as smoothly as it used to. But it looks good again so no one notices but you.

Each morning now, since the wreck, you get up, go out to the car and hold your breath as you turn the key. Will it start this morning? When it does you are both relieved and nervous. Relieved because now you can get where you have to go. Nervous because you never know what you’ll find on the road that awaits you. Will the road be full of pot holes today? What type of traffic will you find? Do you have enough gas to get where you have to go or has it been siphoned without your consent?

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Riding the road that is called Sarcoidosis, requires a steely resolve, fit for a race car driver. It’s a road only a dare devil can truly navigate. Someone unafraid of the dangers and unknowns that await. “Sarcoidosis Road” is not for the faint of heart and requires a driver looking for adventure as you never know what is down the next turn.

Those of us who are detoured down this road must remember to watch our speed limit, conserve our fuel and get regular oil changes. We must keep both eyes on the road and never look in the rear view mirror because what is past no longer matters. It’s the present we must navigate, dodging and weaving the traffic in our path, all the while knowing we will never know what’s at the end of the road until we get there.

So…Now What?

Nearly two years ago, I quit an incredibly difficult stressful job not because my doctor told me to but because I knew it was slowly killing me. I was fading away at home, no longer able to keep up with friends or family. And while I was still doing better than most in my career, I felt my skills were slipping. I do tend to have ridiculously high expectations of myself. And physically I was in very bad shape. My life felt like swiss cheese; full of holes I no longer had the energy to try and fill. I was a sinking ship.

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The problem is that I loved my work. And while I’ll admit that particular job wasn’t my favorite, it did challenge me. No two days were the same. It was a job for a problem solver. I keep calling it a job but really it was a career. Something I worked hard to achieve and something I was proud to do for a living. And I believe I could have climbed higher, achieved more if I’d had the stamina. But like a thief in the night who sneaks in your house silently taking your most prized valuables, sarcoidoisis stole my energy, my physical strength and my mental endurance.

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But with the time off, I’ve been able to recover some of my lost vigor, some of that spark I once took for granted. And this leads me to thinking that perhaps, I could, under the right circumstances, find a way back into the work force. And to better yet, make myself a useful member of society again! Get back on the ship, so to speak.

The question is, if I do this, will I be able to keep the ship righted or will I sink it once again? And I suppose the answer lies with the situations presented to me for work and the desire to make the attempt. I mean, how will I know, if I don’t try.

Don’t get me wrong, I’ve enjoyed this time off. I’ve needed this time off and we are in a situation where I’ve been blessed to take it. But I miss working for all kinds of reasons. I miss the mental stimulus. I miss being around interesting people all day. I miss solving problems that end up bettering people’s lives. I miss doing my part to bring in some income.

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So, what to do next is the question of the hour for me. And I really have no idea. Some times this is a frightening question because it is so wide open and so unknown but mostly it’s exciting. I mean, I get to start over…if I want to. I can do anything I want. It’s interesting to think about it. It’s interesting to wonder what the future holds. It’s hopeful. I am hopeful that I can find meaningful work and still not over tax myself. I am hopeful the right thing will come my way because I am open to it.

I think being open and asking “What’s next?” keeps me moving forward in a way that keeps me optimistic. And optimism is a must when you’re living in a body that doesn’t always cooperate with the mind!

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So I’ll just consider this recent question part of the journey…part of the adventure…knowing I don’t need answers yet but only need to be open and answers will come. And I can have confidence that the right answers will find me at the right time no matter what they might be!

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The Unsaid Things

Life is full of unsaid things that sometimes hang in the air like thick soupy fog. It’s hard when you know you’re in a situation with people where this fog densely weighs on relationships that could be so improved if only these unsaid things could somehow find the light of day.

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For me unsaid things often bring rain in the form of salty tears because unsaid things are usually the things that keep us apart from each other. They are the things that create a misunderstood divide. Unsaid things cause us to fill in the blanks, often inaccurately with assumptions that only make the fog grow murkier.

Unsaid things do more harm to relationships than said things. Unsaid things cause more regret than things said because at least you can apologize for things said out of a moment of passion. Things that are said can be explained and explored and let go. Things that are unsaid cannot be.

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Things said bring context, offer clarification otherwise lost without words. Said things provide an account and open a door to communication.

Unsaid things fracture relationships. Unsaid things create distance. Unsaid things create unnecessary tension.

What is it about some relationships that create this smoggy, foggy situation? Why is communication so easy for some and so hard for others? What causes this fog to gather in certain situations? And so thickly that it is so hard to find your way out of it? Perhaps it is fear. Maybe it is apathy.

Unsaid things create a false feeling of safety. If the thing is never said then it cannot hurt me or you. When in fact not saying it creates doubt and uncertainty that leads to more separation, more disassociation and more heartache. Unsaid things fill the air with intangible sorrow and regret.

Overcoming unsaid things requires courage. Overcoming unsaid things requires partnership. Overcoming unsaid things requires openness. Overcoming unsaid things requires words and understanding. Overcoming unsaid things takes two. One person alone cannot fix unsaid things. It requires a talker and a listener. Overcoming unsaid things involves willingness on all sides.

Finally saying those deep, dark unsaid things brings sunshine. Finally hearing the unsaid things will ease tension and melt the fog as it creates mutual understanding.

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Sometimes we are strong enough to say what needs to be said and hear what needs to be heard and then we feel the sun shine again. Other times the complexities of relationships do not allow for things to be said and the fog never lifts and sadly relationships remain stuck in the dark dank mire of unsaid things.

I Control What Button To Push

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There are times when this disease makes me feel like my life is on hold. It seems I am often waiting to feel better to do this thing or that. Every day is a guessing game. Will I feel well enough to function or won’t I and if I do, for how long? How hard will I have to push myself today? How many people will be fooled by my highly developed ability to fake my way through many a given situation? And will I have the strength today to do this or will the hold button beat me?

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I loath that my disease has taken me hostage with only minimal chance of escape. I loath to feel like somehow the hold button can get pressed on my life. I fight this as hard as I can and I must realize that I can control the hold button. It does not have to control me.

Good days and bad days are taking on a whole new meaning. And my life has changed so dramatically. Nothing good in my life is taken for granted anymore. Amazing how this happens once your health is tested. Small moments of joy are treasured nuggets and like gold they are priceless and I cannot experience these treasures if I keep waiting to feel better. I must press on, move ahead and choose joy over forced stillness even on the lousy days.

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Every morning when I open my eyes, this disease grips me, pulls at me and tries to slow me down, tries to put my life on pause. But every morning when I open my eyes, I make a decision to fight, to push, to keep moving, to keep living.

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Certainly some days are easier than others. Some days the tape gets stuck in the machine and I have to rewind and start again. But as long as I know I have control, disease or no disease, then the hold button cannot beat me. I control what button to push! I’m pushing the play button.

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Just Another Day…Living With Sarcoidosis

Woke up after not sleeping well.

Stomach hurt.

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Bones and joints hurt.

Felt light headed and loopy all day.

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Couldn’t eat…no appetite.

Chest was tight.

Coughed a lot.

Napped a little.

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Sat around a lot.

Forgot what I was doing in the middle of tasks.

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Had trouble completing sentences.

Was troubled by nerve pain.

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Felt really cold all day even under heavy blankets.

Gasped for air several times.

Had a wicked fever in the middle of the day for an hour or so for no particular reason.

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Watched the rain fall…was glad the skies were dark and gloomy too!

Blah,blah,blah…

Now, not every day is like this. But days like these remind me to enjoy the good ones! And despite feeling absolutely lousy, a day like today reminds me that I am actually one tough cookie. Lesser people would crumble.  But we – the chronically ill, no matter our symptoms, whether they be loud or soft on any given day, are strong and we need to remember this and give ourselves credit for it!

We must embrace that strength and keep on pushing!

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