The Sound Of Silence

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I’ve been in a quiet place lately. At first I thought my brain was just empty, devoid of valuable thought, lacking imagination. I have felt inadequate by my lack of inspiration. I’ve not understood the importance of stillness. In truth, the quiet is sometimes so loud that it can be overwhelming. I tend to become uncomfortable when my mind ceases to dream. I’ve always had a busy brain but since my sarcoidosis diagnosis, I have become damped by the sheer power it sometimes has over me. Sometimes I fear how muddled and mucked up my musings become. I was never this way before my disease. It’s frustrating. It’s annoying. It’s downright embarrassing at times to know you are sharper than you appear to be.

Objectively, I know that my mind, despite these setbacks, is still keen. I know that my brain while slow and sometimes uneven, is still capable of cogent thought. Much to even my own surprise, I am still capable of reasoned insights. It just takes me a little longer to get there now than it used to but, I guess that happens to a brain that doesn’t get as much oxygen as it once did.

When I am armed with the confidence of coherent meditation, I am less afraid of silence. In my better moments when I am not feeling insecure by my sarcoidosis, I do know that quiet times are actually a gift. A settled and easy mind isn’t the same as an empty mind. My brain does not have to be in a constant state of motion for me to know that I am still an intelligent person. Quiet is actually a good thing sometimes because often when my mind is quiet, it is peaceful.

The silence in my head is relatively new though and has only really happened to me since my sarcoidosis diagnosis. It is two fold. I am slower in thought, partly because my brain just doesn’t move as fast but, also because I have become more deliberate in my thinking. I see and experience the world very differently now that I have a chronic health condition. Much of what once mattered so much to me no longer does, including for example, the need to be right. Now, I’d rather be happy so sometimes arguing the point just isn’t worth my serenity and silence allows me to keep my peace of mind.

Slowly I am learning that the sound of silence, those quiet places, are actually full of wisdom and it doesn’t mean that I am stupid now just because sarcoidosis has crept into my brain and made it more sedate. I am learning that only in silence comes clarity of thought. I am learning that only in silence comes humility. I am learning that only in silence comes openness. I am learning only in silence can I really hear the truth. I am learning that silence is sometimes the best answer to someone else’s anger. I am learning that in silence there is actually a lot of strength.

So, quiet places are good places and it is really only because my sarcoidosis has forced my brain to slow down that I realize what an unexpected gift silence really can be.

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Unlocking The Mystery…????

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I’ve recently been privy to a conversation about what type of disease sarcoidosis really is. It is often referred to as auto immune but reputable organizations like The Cleveland Clinic’s Sarcoidosis Clinic, refer to it as an inflammatory disease. The Mayo Clinic also refers to sarcoidosis as an inflammatory disease. So, why is it so important to make the distinction anyway and, why do some people get so upset when sarcoidosis is referred to as an auto immune disease? These are questions I cannot answer because honestly, I don’t really care about the distinction and frankly, since there is no known cause or cure for this disease and it is a disease that involves the immune system and also causes inflammation, maybe it really doesn’t matter.

The only reason I can see to make a differentiation is that auto immune diseases are typically described as diseases in which the body’s immune system attacks healthy cells. What happens in sarcoidosis is a bit different. What happens in sarcoidosis is actually an immune response to something real or even imagined, where the immune system goes into high gear and then forgets to chill out again after the threat is gone. As a result, immune cells begin to form in clumps, called granulomas, in and around organs. These clumps are not actually dangerous on their own but they can begin to interfere with proper organ function just by being in the way and because the immune system stays in high alert there is also sustained inflammation in the body, both of which can begin to cause organ damage over a long period of time.

So with sarcoidosis, the body is not actually attacking itself as it does with traditional auto immune diseases. Instead, the immune system is attacking a threat as it is designed to do but then it falters and doesn’t retreat. The “off” button breaks. The reason for this is uncertain, which means the cause of sarcoidosis is unknown and there may very well be many different mechanisms that trigger an immune response of this nature. This could also explain why sarcoidosis is such an individualized disease. It does not seem to follow any particular pattern and patients with it report a wide variety of symptoms with wildly differing degrees of severity.

In the final analysis, what jumps out at me isn’t what classification this disease falls in. It is that since there is no known cause, there can’t be a cure and we need a cure. We need a cure because people do die from this disease. We need better treatment too because the treatment is often worse than the disease. Since sarcoidosis is a disease that involves the immune system and causes inflammation, it is easy to understand why there is confusion about what it actually is. Until better research is done to figure out why sarcoidosis causes such a powerful and potentially life threatening immune response, it will remain impossible to truly unlock the mystery of this maddening, life altering and heartbreaking disease.

Cutting To The Core

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There are times having sarcoidosis doesn’t phase me much. I am able to function with relative ease on every level but, there also times, more than not actually, when having sarcoidosis is difficult on every level. My body doesn’t work the way I want it to. I gasp for air. My nerves burn. I crack and ache and find myself feverish for no apparent reason. My body is slow and sluggish. My brain is cob webbed and dusty. I sometimes feel like every step I take is like trying to walk through thigh high mud. I take a lot of medication and I can’t eat what I want. I don’t work anymore because my body can’t handle the stress and my brain can’t handle the demand to think.

All of that is bad enough, right? Unpleasant to be sure but, the thing that sometimes makes having sarcoidosis the absolute worst is something far harder to talk about than a broken body and a mixed up mind. It’s humbling to admit but the hardest part about having sarcoidosis has nothing to do with the physical or mental challenges. It’s dealing with the emotional ones and, for me more specifically, it is learning to deal with the loneliness that comes with having a chronic condition. There is something about being perpetually unwell in unpredictable ways that is beyond explanation. It’s a private kind of hell that no one else understands. As hard as I try to fight for my life and I do fight for it, there is a part of me that knows I am not nor will I ever be truly me again. I lack confidence in ways I never thought possible because I just don’t know when my body will cooperate and when it won’t. Before my disease, I was not a person who lacked confidence.

The bottomline for me is that now that I have this stupid disease, I am alone a lot, partly because I no longer work but, also because there is a strange comfort it in now. If I’m not around other people, then I don’t have to explain what’s wrong with me when I can’t find the right words and forget my train of thought. I don’t have be embarrassed when my lungs decide not to work correctly and I begin to gag and wheeze and gasp for air. I’m always offered a well meaning but unhelpful glass of water by helpless on lookers when this happens. If I am just alone then I don’t have to think of a good excuse to leave the gathering early much to the dismay of the host. There is an ease in just being on my own and generally, I do like my own company.

There is also a price to pay for being alone a lot and that price cuts to the core of me. It is the danger of crossing over from alone time into the loneliness. There is a feeling of complete inadequacy in feeling lonely for me. There is a feeling of utter failure and there is a deep and quietly all consuming feeling of fear in feeling lonely for me. These are the challenges I find the hardest to face for having sarcoidosis. I try to balance my need to be alone against getting lonely but I admit, I am not always successful. In fact, I fail more than I succeed when it comes to this internal battle. Loneliness has a way of creeping up on me and then blind siding me with profound sadness that sometimes I can’t even explain. This is when I realize that I have once again crossed the line from much needed, often healing time on my own, into the pitiful place of self inflicted isolation.

I feel a sense of shame for feeling lonely sometimes. I feel deeply deficient in some way for being lonely. Successful people should not feel this way and I have generally believed myself to be a successful and fortunate person. I am usually able to overcome life’s obstacles. I am not entirely able to tackle this one though because time and time again, it sneaks up and, deep unhappy solitude takes hold of me. I’ve been in that uncomfortable place of darkness for awhile now again. This time I am shedding light on it. I am writing about it, putting it out there and laying myself bare. I am handling this bout of oppressive isolation differently. I am not going to feel shame about it. I am going to accept it for what it is. It’s just another symptom of life with a chronic health condition. Nothing more. I am going to publicly acknowledge my loneliness this time and as with all other symptoms and hardships of this disease, I am going to do what I always do. I am going to fight. I am going to overcome it. I am going to find balance again. It’s time to move away from this dark place and back into the light.

Raising My Game

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This weekend when my husband and I were playing tennis, he was really working my backhand…ball after ball after ball. I found myself focused, able to stay with each ball as it flew toward me and each time I responded with some pretty good shots right back at him. I realized after we were done playing, that a year ago my backhand, while not exactly a thing of beauty now, was pitiful. It was the worst part of my game…weak. Now, when a backhand shot comes my way, I am able to hit it with a fair degree of confidence, even if not as hard or as accurately as I’d like. This got me thinking about how playing tennis with someone who is and always will be a better player than I am has raised my game.

Tennis is often a metaphor for life for me, like baseball is for those who love that game. When I realized that playing tennis with someone better than me, has made me better too, I also realized that surrounding myself with people who cope better than I do, laugh more than I do and are filled with a sense of gratitude for life also makes me a better person. I am lifted in their presence. I find that I am a more appreciative person around people who understand the importance of true joy. Being around people who are apt to find light in darkness and hope in dire times raises my spirit and makes me want to strive to do the same.

I find that even with my sarcoidosis, I look to surround myself with people I admire. People who have this disease but seek to continue the fight to live a good life. I prefer the company of those who do not allow this disease to define them. I am better able to cope with my own sarcoidosis when I am surround myself with those who do it with grace, humor and a very purposeful sense of gratitude. Being around people who strive to cope with their own disease in positive ways, makes me acutely aware of how I am choosing to cope as well and that I can always do and be better.

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!