AH HA!

 

I’m frank about my sarcoidosis, that sometimes it’s tough to live with, that sometimes I’m scared or in pain or uncertain and afraid. When I started my blog, I told myself to be honest, to share the unvarnished truth, so that’s what I try to do. That being said, sarcoidosis had taught me one of the most important lessons of my entire life and this lesson helps me cope perhaps more than any medical treatment I receive.

Sarcoidosis has taught me that suffering is a choice. Physical and emotional pain are not always a choice. They are part of life. Uncertainty and grief and loss and change are also all part of life. They can be breathtaking moments of pause. They sometimes crush our spirit for a time. These life altering emotions can also be motivation to make much needed changes. The complex emotional journey we are on in life, with or without chronic disease, gives us choices, not necessarily in how we feel but in how we respond to what we feel.

It’s one thing to identify a complicated feeling when you live with a chronic illness or when you are dealing with any upsetting situation in your life. Identifying loss, being aware of your powerlessness and knowing there are certain things you cannot change, things that are hard to accept, is an important step in letting go of the negativity that comes with these realizations. The danger of it though, is getting stuck in that negativity, wallowing in it and allowing it to define you. This is when you suffer. No doubt it’s a pitfall anyone of us can fall into. The key, at least for me, is to remain vigilant of its power to destroy me and to steal myself against its menacing magnetic pull. In my case, because of all the life changes I’ve been through because of my sarcoidosis and all the ways it has changed my life and changed me, I have to wake up every day and make a conscious choice that I won’t be dragged into that particular abyss.

I am reminded of the old worn out expression that “misery loves company.” Misery doesn’t just love company, misery thrives in sorrow and despair. Misery seeks out weakness and tries to draw it in. If you go there, it can swallow you whole. You could be lost to it. Misery is suffering and suffering is miserable. When I was first diagnosed with sarcoidosis, I was scared. I had no idea what direction it would go, what treatment for it would or wouldn’t do, what I would lose and what it would mean for the rest of my life. I could every easily have and, with some justification become, dejected and depressed and despondent. I’m not talking about appropriate grieving here, I’m talking about all consuming and unyielding despair…misery…into the abyss!

The fact is, my life has changed. I haven’t worked for nearly ten years, a career lost. Friends have withered away, no longer patient with my slower step. My pace is a beat or two off the rest of the functioning world now. My presence in the world feels somehow diminished, sometimes. I find significant comfort being home and, routine now more than ever, helps me feel safe… even before COVID. I am probably, in some ways, one of the most boring people I know. Much of what I do now revolves around what my body and brain can and cannot handle. It can be an emotionally taxing way to live. The redundancy sometimes monotonous. When people ask me what’s new, I often fumble for an answer. Yet, I need this tedious, unvarying, soporific pace to live the best life that I can. The irony in this is not lost on me. Seriously, how do you live your best life when you are living what would be perceived by most as the humdrum life? This is something only another person living in constant pain who deals with the stumbling blocks of life with a chronic illness can truly understand.

I could very easily wallow in all that I have lost, in what my life has become. I used to define myself by my work. I used to be so proud of my accomplishments. I miss my paycheck and the financial contribution I was making to our household. I used to think I had a lot of friends simply because I had lot more people in my life. I felt a part of the world that I am now somewhat separate from. I never doubted my body. I trusted that it would always carry me wherever I wanted to go. I had a swagger and a confidence about myself that I no longer have. I had a sense of freedom that has been lost to me. I am in some sort of physical discomfort or pain all the time now. Every breath feels a little like I am swallowing fire and every movement comes with a stab or a throb or an ache. My body is tender and sore all the time. Sometimes I blood pressure falls so low, I pass out. Some days, I do wonder if it will get me from point A to point  B. I have watched people drift out of my orbit as my world shrinks and my once self described “value” fades. Sarcoidosis had taken plenty from me. I could certainly be resentful but, I’m not.

I’m not resentful because sarcoidosis has also given me things I would not otherwise have. I may have lost my confidence but, I have gained a sense of humility and, with that comes a profound ability to see the world with clearer eyes. This includes a better understanding that the only thing I control is how I respond to my emotions. I can get angry but I can also let it go. I can be sad, have a good cry and, set that sorrow free. I am no longer as ego driven as I was. I can’t fix things that aren’t meant to be fixed. I am better able to accept what I cannot change because I understand I am not in control of what I don’t have control over. I’ve finally figured out that life is full of pain, physical and emotional, for all of us, but I decide if that pain is suffering or if that pain can be put to good use. Pain, physical and emotional, helps me change. It helps me grow spiritually and emotionally…if I let it. 

Living as I do today, with chronic illness in the forefront of all that I’ve become, has made me much more aware that what I choose to think about is what defines me. I made a conscious decision early on my illness, to do what I guess is often my reaction to difficult circumstances. I made a decision to fight. I hadn’t realized though, that in this case, fighting would bring with it such a unique change. I hadn’t realized early on, that a huge part of my fight to live as well as I can, in this altered state, would be gratitude for what is instead of a focus on what has been lost. I didn’t know in the beginning of my sarcoidosis journey that suffering was a choice. I thought pain and suffering were the same thing. They aren’t. Pain is inevitable in life. We all face it, no matter our personal circumstances. Suffering is actually a choice. Suffering takes us to the edge of the abyss and if we all allow it, will push us in, falling into the deep darkness.

What I know now is that I will probably feel some sort of pain every day for the rest of my life…both physical and emotional. Living through the age of COVID, taught me that my life can continue to shrink. The future is unknown but, I can harness that uncertainty to my advantage. It gives me the power to live in the moment instead of fretting about the future…easier said than done but doable! Every day I wake up and make a very deliberate choice to focus on the comfort of my new little world, to accept that life has changed, to know that with change comes opportunity, to find new ways to define my purpose, to focus my energy where it truly counts in my life and in the lives of those I love. Sarcoidosis can take a lot of things from me but it can’t take my ability or desire to love or to hope or to have faith. Sarcoidosis cannot take my will to live and while it might try to drag me into misery, it cannot keep me there because I won’t let it. I understand fundamentally and to my core that unhappiness is mine to overcome and suffering is not absolute. Misery might love company but it is not the kind of company I want to keep.

This Is Not Political…It’s Personal.

I sit here knowing I need to write this but I also sit here at a loss for words. Why I am still shocked when invidious things are said about people with chronic illness amazes me. It happens so often that I should be used to it by now but I’m not. I guess a good place to start is by saying that while some people will only be able to read this blog post as political, it’s not and, if you are reading it that way then you are missing the point entirely. That being said, I am going to reference comments made during the current healthcare debate in America but I’m going to do so through the lens of a person who has a pre-existing condition. I am going to talk about these comments because the rhetoric is simply astounding. It’s extraordinary in how it exemplifies the very stereotypes most of us with chronic illness fight against every single day and it must be exposed for its inaccuracy and discriminatory nature.

To provide context to what I am referring to let me share some recent words from American politicians about pre-existing conditions and people who have them:

Representative, Mo Brooks, of Alabama said that people who “live good lives don’t have to worry about pre-existing conditions” and that people without pre-existing conditions have “done things right.” Senator Ron Johnson of Wisconsin recently compared pre-existing conditions to car crashes and basically blamed people with pre-existing conditions for being sick and for being the cause of a collapsing healthcare system in this country. North Carolina Representative, Robert Pittinger, has said that if you can’t afford healthcare because of your pre-existing condition, you should just move elsewhere. The Speaker of the House, Paul Ryan, has said that the healthy should not have to pay for the sick. The current Vice President, Mike Pence, has said that the healthcare system should, in part, be changed based on “personal responsibility”.  

I share these thoughts from our government officials, not to scorn them for their politics and I honestly don’t care what party they belong to. I have no desire to debate the merits of Obamacare vs Trumpcare in this blog or anything else about the current state of healthcare in America. This blog is about shedding some serious light on the wedge that exists between the well and the chronically ill. When you take these comments and concepts on their face, outside the realm of politics, they speak volumes about the resentment the healthy feel for those of us with chronic conditions and sadly, this is nothing new for us. Those of us who have pre existing conditions and who suffer with chronic health issues have to navigate the complex world of living among well people’s judgements about our worth all the time.

Comments and concepts like these fall into a category all their own in the depth and breadth of the insensitive ignorance that many in the well world feel toward us. The lack of empathy in comments like these is profound, disturbing and quite frankly, morally reprehensible. To suggest that people with pre-existing conditions don’t live good lives is victim blaming and implies that anyone who is chronically ill deserves what they get because they brought it on themselves. Are there sometimes people who engage in unhealthy, high risk behavior that leads to poor health? Yes. Are there sometimes people who refuse to follow medical advice and are non-compliant with their medical care leading them to poor health? Yes. Is this the vast majority of people who live with a pre existing, chronic health condition? Not by a long shot.

I want to spend a little time on this particular concept…blaming the victim. Mr. Brooks didn’t say anything we aren’t already aware people feel about us but, the fact of the matter is, large numbers of us with chronic health issues didn’t do anything wrong at all. I happen to have sarcoidosis, a disease for which there is no known cause or cure, and it struck me down out of the blue forcing me to make lifestyle changes I loathed to make, like leaving a career that I loved. How can you seriously and with a straight face blame someone for contracting a disease for which there is no known cause? No one asks for or engages in behavior that will give them a disease like sarcoidosis or MS or lupus or epilepsy or muscular dystrophy or seizure disorders or narcolepsy….the list goes on.

Victim blaming is simply an easy out for many in the well community to put those of us with chronic health conditions on notice that we are getting what they think we deserve. This type of thinking actually bleeds right into the fabric of all the negative stereotypes about people with chronic illness, that we are lazy, that we don’t try hard enough, that we don’t belong, that we are just a suck on society, that we have little to offer and that we are not deserving of a good life because we brought disease upon ourselves. When you further examine comments that suggest we should just move elsewhere or we should take more “personal responsibility” or when we are compared to car accidents, then you really do begin to see the pattern of demoralizing prejudice that lurks in the minds of many of the well. Those of us with chronic health conditions, through no fault of our own, are unfairly and inaccurately seen as less worthy.

Stereotypes like these are not limited to the comments made by our political representatives. We come up against these types of attitudes every day. We should take better care of ourselves then we wouldn’t be sick is actually a very common theme among the well toward the chronically ill. We are often judged on the way we look. If we look good, then we can’t possibly be that sick. Conversely, if we are overweight or disheveled in some way, it’s assumed that we are lazy and have no self respect or self control. The well fail to calculate into their narrow minded judgement of us, that the medication we take for our illness can sometimes lead to weight management issues, massive fatigue and overwhelming feelings of malaise. Instead of taking the time to learn about our illnesses and what it’s like to live inside our bodies and deal with the hardships we face, the well make hurtful judgements about us based on what they see and not on what we actually experience.

It’s time for this level of vitriol toward the chronically ill and those with pre existing conditions to be exposed and for it to stop. It’s time for the well to show us some empathy and in case the well don’t know what empathy means, I’ll define it. Empathy is “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner.” In other words, empathy is stopping long enough to put aside your judgement so that you demonstrate the ability to better understand and share in the feelings of someone walking a different path than you.

We don’t need the judgement of the well. We need the support of the well. We don’t need to be told what to do to take better care of ourselves, we already know. We simply need encouragement. We don’t want to be told to go elsewhere because we are a drain on the well. We want the well to see that we still have much to offer. We don’t want to be told that what is happening to us is of our own doing. We want the well to understand that we didn’t ask to be sick and that we don’t want to be sick. Our illnesses have robbed us of huge chunks of our lives. We don’t want the well to make assumptions that we don’t try hard enough. We try harder than the well will ever understand which is why we can’t win when we look too good to be sick…the judgement never ends.

I don’t spend much time caring what other people think of me anymore. I’ve gotten to the point in my life as a chronically ill person where I know that well people can’t truly understand my struggles, without experiencing them. I recognize that I was once ignorant too, before my sarcoidosis. That being said, I cannot in good conscience let publicly made comments by our political leaders go unchallenged because they have only said out loud what we already know, that the well judge us and do so harshly. While I may no longer care what other people think of me personally, I do care about my community. My community of people with pre existing conditions and chronic health issues don’t deserve to be treated as sub human, less than or unworthy and that’s why this is personal. When the well view us through that lens, then they don’t see WHO we are, they only see WHAT they think we are and they could not be more wrong.

 

The Sarcoidosis Promise

I promise to rise each day and fight for a life…my life! 

I promise to take care of my mind, my body…my soul.  

I promise to eat a healthy diet.

I promise to get regular exercise. 

I promise to rest when I need it. 

I promise to push when I can.

I promise to be grateful. 

I promise not to cry too much.

I promise to be there for others in need who suffer as I do.

I promise to be voice for the voiceless. 

I promise not to be defined by my disease. 

I promise to seek joy.

I promise to march through pain.

I promise to believe in the power of hope.

I promise not to judge what I don’t know. 

I promise to look my best.

I promise to raise awareness about sarcoidosis.

I promise to advocate for myself when doctors try to belittle us. 

I promise to continue to seek adventure.

I promise to appreciate my loved ones…to thank them every day. 

I promise to remove negativity and unnecessary stress from my life.

I promise to cling to faith that something better waits for us. 

I promise to make love a priority in all my actions. 

I promise to be an agent of peace.

I promise not the hang on to anger. 

I promise to let go of what is out of my control. 

I promise to remember that life is short…too precious to be squandered. 

I promise to hug my dog every day. 

I promise not to give up. 

 

Hope Is The Answer

Hope is defined as “a feeling of expectation or desire for a certain thing to happen.” Hope is a wish. It is a want but, hope is more than this. Hope is also an ambition. It is a a goal. Hope drives us to plan for more and to set our sights on a better outcome.

When you live with a disease like sarcoidosis, you have to cling to hope in order to survive. Hope is the most important ingredient in the fight against any disease. Hope is the fuel that keeps us going during the most difficult days. We have to believe, to know in our hearts, that things can and will improve for us.

Hope is a form of trust, a type of faith. Having hope means that we must believe that light will return to our lives even during our darkest moments. Hope is the unashamed abandonment of common sense. It is a belief that what is yet to be revealed will be make us more whole, restore our peace and bring us serenity.

There is no point to life without hope because hope is what gives us the determination to make better decisions for our lives. We may suffer with a chronic disease, and it is difficult, but we can control how we decide to look at our lives. Will we remain grateful or will we dwell in misery? Hope helps us pick the positive option because, things may not be the way we want them to be, but we can make a conscious decision to believe they will get better.

Hope is a choice.

It is something we can decide to have or not to have. Hope waits for us to choose it. We can be hopeful one day at a time. Hope evolves with us as we grow and change and shift in our own thinking. We must accept what cannot be changed but, we can also have courage to be hopeful even when it feels out of our reach. Hope is never out of our reach.

Living with a disease like sarcoidosis requires a lot of us. We suffer humbling loss in the wake of this disease. Our lives change and change forever. Our bodies are weak. Our minds are muddled. We don’t recognize who we’ve become. We grieve who we used to be and somehow must learn to accept who we are now, strangers in our own skin. How do you do that with grace? How do you let go of the life you once knew so well and learn to embrace the unknown that is now?

The answer is hope.

Hope is the only thing in life that is stronger than fear. Hope is brave. Hope is the only thing that makes miracles happen. Hope gives us the energy we need to keep trying. Hope is the belief that what is to come is better than what we left behind. Hope overcomes confusion. Hope makes all things possible. Hope never surrenders. Hope is limitless. Hope is a renewable resource. Hope feeds courage and courage builds our strength. Hope keeps us alive.

The Odd Couple

 

So far for sarcoidosis awareness month, I’ve written a lot about the challenges I and others face. It’s probably a no brainer to some degree, to understand that diseases are hard to live with, even ones most people know little about or have never heard of. Sarcoidosis is hard to live with and I make no bones about that. There is however, another side to life with this disease and I think it deserves to be highlighted. Some with this disease may agree with me and some may not. I can only speak from my own experience on this one.

With all the darkness that comes from life in a diseased body, there also comes equal and sometimes greater light. That light, isn’t exactly a light. It’s enlightenment. Having a chronic, life changing disease gave me a couple of options. I could either wither and drown in its presence, allowing it to define my entire world view or, I could use my struggles with it to build my inner strength and summon courage I never knew I had to change my world view. Sarcoidosis put me at a crossroad and I had a decision to make…wilt or thrive.

Over the years that I’ve had this disease, I have grieved losses. My body no longer cooperates the way I want it too. Breath does not come easily. I have lost friends who have moved on without me because I can’t keep up and I lost a career that I loved. I would be foolish to deny there hasn’t been emotional pain and real hardship from having sarcoidosis and I’m generally not known to be a fool. Yet despite these losses, or maybe because of them, I have become acutely aware of what really matters.

Sarcoidosis and gratitude are an odd coupling but I have to say that since being diagnosed with this disease and settling into all that it means to have it, I have become an extremely grateful human being. There is something about losing the ease of good health, that made me realize how much I took for granted. I didn’t see that what I thought I deserved, what I thought I earned, really never actually belonged to me.

One could argue that sarcoidosis took my life and it did. It took my life as I was knew it but, I would argue that it gave me a new one, one I did not ask for but one I find myself in a place of great comfort to have. Were it not for this disease, I would still be flitting about fusing over all the nuances in my life that aren’t just so. I would be bouncing from superficial problem to superficial problem, putting my energy and effort into frivolous endeavors. I don’t care anymore who said what to who or why. I’m no longer focused on getting my fair share. I don’t keep score and I don’t compare myself to anyone else.

I’m not saying that before this disease I was shallow and unable to appreciate my life. I’ve always had some awareness that my life is blessed but, there is something powerful in being humbled by illness and disease. It has changed me. The blessings I feel now are far greater in number and much more deeply rooted in the understanding that I don’t actually deserve the good that I have. I am, for reasons not known to me, favored. Sarcoidosis has actually taught me to think this way, to see life as an immeasurable gift, something to be cherished….even when it’s difficult.

This might sound disingenuous, but part of me is actually very grateful for my disease and that’s the truth. This peaceful reality hasn’t always been true. I was angry about being sick once. I was sad about it too. Sometimes I’m still sad about it but I don’t get angry about it anymore. I’ve come to understand that every person carries their own heavy load of something. Mine happens to be navigating a life with a chronic and potentially life threatening disease. It hasn’t been an easy experience but it has been an insightful one.

Sarcoidosis has been my greatest teacher, a mentor of sorts. It has taught me how to accept what is ultimately out of my control and in that process, it has shown me that the only thing that I’ve ever really had control over is my attitude and reaction to any given situation. Sarcoidosis has taken but it has also given and because of this I have learned the value of appreciating what I have when I have it because it might be gone tomorrow.

I don’t know what lies ahead for me in regard to my disease but I know whatever the future holds, I will face it with grace and I will deal with it from a place of thanksgiving for the life I have already had. Having sarcoidosis does not take away my ability to be joyful and to see the what is good all around me. If anything, having sarcoidosis has only magnified my desire to be at peace with the world and to accept what is as what is meant to be.

Sneaky Little Bastard

I don’t know a nice way to say this, probably because quite simply, there isn’t one but I find this disease to be a sneaky little bastard.

Why do I say this? So many reasons, but let me start by saying that its unpredictability is nothing short of maddening. The path it takes twists and turns like a dangerous mountain highway and sometimes it feels like the oncoming traffic is going to smack you squarely to your core.

First there is the path to diagnosis. Since sarcoidosis is a disease of exclusion and a mimicker you can be told you have anything from lupus to MS to cancer to name a few. You are poked and prodded and x-rayed and scanned. You are biopsied again and again. Finally after you’ve been terrified out of your mind with worry that you’ve got the big “C”, you are suddenly and abruptly told…nope…it’s sarcoidosis.

Then, you get told that having sarcoidosis is a good thing. Really and truly…that’s actually what they tell you! How about that. A good thing. A few months of treatment and you should be on your way back to a normal and healthy life. Hope soars that you will easily go into remission. You quickly figure out, however, that your symptoms are not in fact easily managed. The drugs they put you on have wicked and evil side effects. You either become a bloated monster, or in my case, a shrinking violet losing strength by the day.

The symptoms begin to mount. At first it was just a little shortness of breath. Now you cough all the time, wheeze, get wildly unpredictable fevers and, night sweats that make you want to call the fire department for relief as you feel the flames shooting out of your pores. A fatigue sets in that makes you feel like every single step is like trying to slog through a muddy field but the mud is waist high. Eventually, a range of other weird and difficult to describe aches and pains creep up on you like a child playing a prank you never saw coming and it doesn’t make you laugh. Headaches, joint pain, back pain, bone pain, numbness, cold extremities, muscle aches, weird burning sensations and on and on. Your doctors can’t explain these strange symptoms and sometimes they look at you like they don’t even believe you but, it’s real…it’s all real!

To top it all off, everyone tells you how great you look. They say well meaning things that actually cut to the core. Things like, “Gee, you don’t look sick”. Or my personal favorite, “Wow, but you look great. How sick can you be?” Their comments, meant to make you feel good, only leave you feeling more alien in your own skin.

You begin to withdraw, not because you want to but, because the disease is having its way with you. You simply no longer have the energy to participate the way you once did and you realize some people think you are faking it. This only adds to the demoralizing sense of frustration you already feel for having this stupid disease in the first place! A feeling of complete and utter loneliness begins to set in. You are entirely misunderstood by your doctors, your family, your friends, your co-workers, your neighbors, your pets….you name it…no one gets you anymore…some days you don’t get yourself. You wonder where you’ve gone and if you’ll ever be back.

Suddenly you have a good day! You slept well, no night sweats keeping you up, tossing and turning with covers on and covers off and, covers on again after the sweat finally dries and you are left freezing like someone left you out in the cold without your coat and hat. You have energy as a result of sleeping well so you decide to tackle a long overdue project around the house. You’re so happy to feel human again.

One of two things happens next; Either you get through it without incident and are as proud of yourself as you would be by your child brining home their first A grade from school. Or, half way through the project you realize that you bit off more than you can chew and yet another home improvement project only gets done half way. It starts to feel like your house might fall down around you. You never lived like this before this monster crept into your being, leaving “To-do lists” undone and your home in disarray.

If you managed to complete the project and are beaming with pride, you start to ever so subtly fool yourself into thinking you’ve got this nasty disease licked. You start planning for tomorrow’s chores, full of aspiration.  Sadly, when the next day comes, you wake up feeling like you were hit by an eighteen wheeler and realize how wrong you were. You tell yourself that you won’t ever let yourself get fooled again! Resolve in the knowledge that this disease is actually bigger than you are, you tell yourself that you’ve got a handle on it. You readjust your expectations.

A deep despair sets in as you start to notice that life is a house of cards, at any moment it could all come crashing in. You didn’t realize that readjusting your expectations really meant that you had to say goodbye to your old life. You find yourself engulfed in unrelenting grief. You know that you need to fight off the weight of this depressing new reality.

Out of the blue, another good day. This time it’s a trip to the doctor where you are told your CT scan or x-ray or whatever test it is they decide to give you that day looks good. You think, maybe I will beat this S.O.B! After all, you are doing all the right things. You have changed your eating habits, you are taking your medications as prescribed, you are trying to exercise as much as you can. You have learned to listen to your body. You begin to feel like you are the captain of your own ship once again. You’re in control! Remission looks to be around the corner. Brighter days are ahead for sure!

In the meantime, what you desperately fail to realize is that you have only grown accustom to your new normal. You are in fact, short of breath all the time but, you no longer notice it. You are fatigued all the time but, you have learned to slog your way through the heaviness of this strange new world. You don’t realize that most people don’t have pain screaming through their body day in and day out. You have unknowingly put on those waist high boots and are in fact pulling yourself through the mud and the muck every day. It has just become normal. You think you’re doing great and you’re so proud of yourself for overcoming the beast.

When you go to your next six month follow up, take your pulmonary function tests or whatever tests you are given that particular visit, you learn just the opposite. You learn that despite a clearer x-ray, your lung function continues to worsen. Your goals haven’t actually changed at all. You are still in the same place you were when this sneaky little bastard took hold. Now the most you can hope for is stability. Remission is no longer discussed. You can only hope to stay off oxygen as long as possible. The damage is done and it is significant. It cannot be undone. There is no healing in sight.

Eventually, you realize that life goes on, although forever altered. You know that you must continue to do what you can to live as well as you can. You must bury and say goodbye to the old you. Life will never be what it was and as you bury your old self and say goodbye, you realize one thing. You become sure that you will never let this sneaky little bastard get the better of you again. You know once and for all this is serious stuff and that you are now locked in a battle of wills against this lousy disease. You know that you have to accept the new you and you know you will never allow yourself to be fooled by this sneaky bastard of a disease ever again.

(Originally written January of 2014 – when I was only a few years into my diagnosis and still trying to figure out what life was going to be like with sarcoidosis. Now I know…now I know that it’s a battle and I intend to WIN!)

The Only Way To Win Is To Show Up!

When you are part of the world of chronic illness, you often hear that you are a “warrior.” You hear that you must be strong to live like you do, that you have a lot of fight in you. How else could you live with a beast inside your body, day in and day out and not go to war with it? The alternative to warring with the beast inside you is to give up, give in, let go and die.

Perhaps it seems a bit dramatic to bring up death but there is more than one way to die. When you live in a constant state of uncertain health and your body is riddled with unstoppable pain, weird unexplainable aches, massive weariness and frequent episodes of mental obscurity, you can become discouraged enough to isolate yourself from the rest of the world and this is a certain kind of ghostly death. Giving up on your life while still existing is in fact, fatal. Having all of the quality of your life stripped from your world is dispiriting and is the sort of living death that comes with a chronic condition if you don’t consciously choose to fight for more than subsistence.

Chronic illness will kill your spirit by stealing your health first, then your happiness, then your feeling of security, then your income and career, your home and finally your relationships. It will take and take and take from you until nothing is left. Until you no longer feel valued or that you bring value to the world. Chronic illness will seek to shrink your world and your worth until it is so small you have nothing left and no reserves to continue fighting.

Even though there is no disputing life with a chronic health condition can be daunting, there is an alternative to living death. You do not have to live like a whisper in your own story but you need to keep some weapons at the ready. One of them is to put on your battle armor every day. This means getting up and getting dressed. Getting up and getting dressed might seem like a no brainer to those who are not chronically ill but, that just means you don’t have to sit down and catch your breath after you shower. For many of us with a chronic condition, the thought of getting up and looking our best is a huge challenge but if you don’t do it, your disease wins. That isn’t to say that a day on the couch now and then isn’t necessary, of course it is. Rest is important when you are fighting a chronic condition but it’s not an excuse for giving up.

Getting up and dressing up are only two weapons in your arsenal. When you are chronically ill, attitude is absolutely everything. You can see the world as a devastating place, as if everyone has given up on you and you on them or, you can decide to make the best of a difficult situation and even if your world has shrunk, even if people have stepped away from you because you can’t keep up with them anymore, you can still give whatever is left of your world, the best you have to give. You can still make a conscious choice to take pride in your life, even if your life isn’t what it once was and you will feel better about yourself for the effort.

There is no doubt that living with a chronic illness changes you. Accepting that life is different, grieving the loss and change but then showing up, battle ready, for what’s next is the only way to find any harmony, it is the only way of sustaining any peace. It is what must be done if you want to be defined by more than your disease. Careful consideration of your outlook, daily inventory of your attitude and where you are in your ability to accept your current circumstances are basic requirements for combat. These are the things that make you a “warrior.” These are the things that give you the will to fight so that you can do more than exist, you can do more than survive. Having a life with chronic illness does not mean you cannot thrive. You can…if you show up and fight!

Life, Love And The Pursuit Of Air

The fuel of life…

Breath producing vigor…

Our nourishment for being…

Sustenance and provision for growth…

An invisible gaseous gift…

A mixture of oxygen and nitrogen…

Air filled lungs…

Inhaling and expanding…

Exhaling and contracting…

A privilege…

Not a right…

Beautiful cherished respiration…

The Tranquility Credo

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. 

 

When…

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