No Funeral For The “Dead”

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Living with a chronic illness like sarcoidosis changes your life in unimaginable ways. You never think something like this will happen to you…until it does. Life inside an unreliable body forces you to live quite differently than you had once thought you would live. It changes your relationships. It changes your career goals. It makes your thinking foggy, slow and dull. It steals your energy and turns you inward. You are physically unable to do things you once thrived doing. You spend more time alone than you ever thought you would. You no longer recognize yourself. You have to be introduced to this new person and you’re not sure you like her at all.

This is what life with a chronic illness is like, especially in the beginning. Everything changes. It’s as if someone beamed you out of the world you know and put you on a planet you’ve never seen before. You don’t know how to find anything and everyone is speaking a foreign language. It’s confusing and forsaken and sometimes downright terrifying. Everything you once knew about yourself changes. You change….in body and mind. You must say goodbye to your old life, your old body and your old self. It feels as if a funeral is in order. But, you don’t get to have a funeral for your old self. You have to grieve quietly because even though you are now saddled with all the life changes that come with a chronic disease, other people don’t notice, don’t care or just don’t understand. It’s a solitary journey and a long goodbye to the life you thought you would have and the life you had planned for yourself.

Grieving is a very big part of living with a chronic illness and while harder in the beginning, it remains a lifelong endeavor. You go through many emotions and you follow the stages of grief as you step further into your new and unfamiliar world. You experience denial. This can’t be happening to you. You ignore your symptoms and the advice of your doctors. You might even skip or cancel doctor appointments. You tell yourself it won’t be that bad, that your life isn’t going to change. As your life does change, because it will change, you start to experience anger. It will change because you are physically unable to keep up, because the well people in your life start treating you differently, because you can’t think as fast as you once could, because you are simply unable to manage life the same way. Simple every day tasks like climbing a staircase or taking a shower require you to rest. You wonder why this is happening to you. You don’t think it is fair that you should be losing so much while other people thrive. Then you panic and start to bargain. You make promises to “do better”, to keep those doctor appointments, to be a nicer person if this would all just stop, to give up a bad habit if it would make this all go away. None of your efforts to trade work and so depression sinks in and this is a long stage.

The stage of depression is really when the reality of your circumstances sink in. You start to realize that this is a forever situation. You come to understand at your core, that your body isn’t going to work correctly anymore, that your brain betrays you with loss and confusion, that your energy and strength have been striped and you are now raw and weak and sad. You feel pathetic. You even hate yourself a little bit. You are resentful and bitter and cannot see a way out of this new and unforgiving world you have been plopped down into. There is no light and no hope because there is no going back to the way things used to be. It’s time to say a final goodbye.

Saying goodbye to who you used to be is the only way to figure who you are going to become but, it’s not easy. Acceptance, the final stage of your grief process, is not a simple task. It comes slowly at first. You realize that if you don’t let go of the past, it’s darkness will swallow you and you will drown in the deep sorrow you feel for what used to be. If you want to survive, you know you cannot do this. You must undertake the long process of saying farewell to your old world, your old body and your old life. It takes courage to say goodbye but as you do, you realize that this is very much like the loss of a loved one. You cannot control that this person is gone so you say goodbye, in your own way and in your own time but you say goodbye so that you too don’t die.

While there is no funeral for this kind of death, you experience your own way of parting from who you used to be. No one else is invited. It’s an extended goodbye and a very private affair. As you go through this process, it becomes bittersweet. You let go piece by piece and bit by bit but as you do, this new world you’ve been forced to live in starts to take shape and it begins to brighten. You start finding your way around. You’re not as lost as you used to be. You realize with that with acceptance, you might be able to build a new life, not the life you thought you’d have, but a life none the less and eventually hope returns.

Living with a chronic illness like sarcoidosis changes your life in unimaginable ways. It’s hard to live with a physically restricting, nearly invisible to the outsider, life long, pervasive, unyielding disease. There will always be fear. There will always be times of sadness. There will always be uncertainty. There will always be those who don’t understand. There will always be moments of loneliness. There will always be doubt. There is no way around these inevitabilities of this new life. They are part of your new world but once you begin to say goodbye to your old life and your old self, once you begin to accept your new reality, you begin to realize that it’s time to rebuild, to redefine who you are and to learn to love this new person emerging. You start to find value and purpose in new places and you start to live again.

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Art Lessons

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I’m deeply grateful to the readers of my blog who have recently reached out to me, asking if I’m okay and where I have been. It’s nice to be missed and that my writing is appreciated. I’ve not been away for bad reasons. I’m okay, still fighting the daily ups and downs of this terrible disease, sarcoidosis…but I’m okay.

Taking a bit of time away wasn’t something I planned, it just sort of happened. I love writing and I have missed it but, I’ve recently found another new avenue to express my creative muscles. For some reason, unknown to even me, I got it in my head that I wanted to learn to draw, to become artistic in a new way. That’s where I’ve been. That’s what I’ve been spending a lot of my time doing. Learning to draw takes me out of myself which is why I think I like it so much, even though I’m not very good at it. Creating art has a way of transporting me to a place far outside myself, giving me a new outlet for escape.

Interestingly enough, art has also been teaching me a lot about life…things I probably already knew but forgot or things I needed to be reminded of and even some new things about the importance of patience and time. So, since this is what I’ve been up to and readers have wondered where I’ve been, I thought I’d share some of things I am learning through art because they also apply to life in general and certainly to life with a chronic illness.

Lesson #1: 

Enjoy the journey – This is one lesson that isn’t entirely new to me but it is a lesson that comes up as a theme in my life over and over again. Apparently, I am not a patient person. I have found with art that the process of creation is just as important, if not more so, than the finished product. I have also found that I tend to rush the process and that every time I do, the result is never as good as it is when I take my time and try to enjoy creating something. Joy comes when we are aware of our surroundings and embrace what is, instead of what was or what will be. The same is true when you are creating a new piece of art. When I am paying attention to each stroke of the pencil instead of focusing on the outcome, I make less mistakes, I actually have fun and the creative juices start to flow. This is a real life lesson. Living in the present, the here and right now, makes it easier to appreciate otherwise mundane moments and opens my heart in gratefulness for the life that I have now even if sarcoidosis had turned into a life I never planned on.

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Lesson #2: 

Problem Solving – This is something I am usually pretty good at but with art, it has been a struggle. Sketching is a new skill and I use the term “skill” loosely here as it applies to my artistic abilities but, there are times when you are creating something that you have to stop and think, at least that’s the case for me. Sometimes my brain doesn’t cooperate with my hand. I have a vision for how I want the drawing to look but dexterity betrays me. This is when I have to stop, take a step back and think about how to approach the drawing differently so that I can turn my vision into a real creation. Living my life with a chronic illness is much the same. There are times my body won’t do what my brain wants and yet, I still have to live my life and figure out how to function. Learning to draw has been a good reminder that there is always another way to figure how achieve my goals and accomplish what I set out to do.

Lesson #3: 

Mistakes can be a good thing – If you’re like me, you hate making mistakes. I’ve actually never heard anyone say they like them. Some people are more patient with themselves and others when mistakes occur but I’m not one of those people. I am more patient with other people’s mistakes than I am with my own but generally speaking, this is an area of my life that needs improvement. I was taking an art tutorial online the other day and the instructor said, “Mistakes are important in art because every mistake teaches you something new about your craft and your process.” I paused the tutorial and write that one down.  I’ve always understood mistakes teach us things, how not to be, but it never dawned on me that they also teach us how we want to be. Without the benefit of trial and error, we don’t learn. Brain fog and fatigue alone are enough to make me forget stuff and that puts me in a position to make plenty of mistakes. I now see mistakes differently. When my disease makes me do stupid things because of pain or shortness or breath, I will simply try to embrace them, understand them and instead of beating myself up, I will strive to do things differently. Mistakes are opportunities for personal growth.

Lesson #4: 

There is no such thing as bad art – If you like what you are creating, then it’s worthwhile. This is something art is teaching me that’s fairly new in my thinking and also applies to my life now that I live with a chronic illness. It is said that beauty is in the eye of the beholder and art is meant to be beautiful. What is beautiful to one person may not be to another. That’s okay. So, as long as I like what I am creating, it is meaningful because it is effort well spent. My life with sarcoidosis has changed in ways I never could have imagined and I have struggled to find meaning in it since I left my career and became a stay at home “dog mom.” I was defined by my career in ways that were woven into me. All that changed when my body and my brain decided it had other plans for me, plans I did not agree to. So, I’ve had to create a new life for myself and it is a constant battle for me to accept this change but, art has given me a new outlook. I am creating something new in life and, so long as I can find things about each day that are worthwhile, I can be happy with what I am creating, despite all of the things sarcoidosis has stolen from me. There is no such thing as a bad life, so long as it is lived with gratitude, peace and a little creative thinking.

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So my dear readers, this is where I’ve been and this is what I’ve been up to. I’m sorry that I was away so long. I guess I needed a break that even I didn’t know I needed. I needed to do something new and challenge myself differently so that I could broaden my thinking about what this life with sarcoidosis is all about and, how it impacts every part of who I am and what I do. It always will, it’s like a constant companion now, one I have had to learn to live with even though I haven’t wanted to. Thanks to my new artistic endeavors though, I have learned more about myself and how to cope with life in a body that has a mind of its own. I hope my “art lessons” have been as helpful to you as they have been to me and I’m sure I’ll be back with more of them as this new chapter in my life unfolds.

 

The Only Way To Win Is To Show Up!

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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!

The Power Of Unburdened Truth

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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.

What Is Courage?

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Knowing when to walk away…

Meekness in the face of a bully…

Taking the right stance at a difficult time…

Fighting when the time is right…

Sometimes saying no…

Understanding fear is part of life…

Being quiet at the right time…

Accepting a different point of view…

Waking up to face another day…

Defending the truth…

Setting personal boundaries…

Standing alone in the crowd…

Learning restraint…

Allowing for unknowns…

Finding peace in chaos…

Ghosts, Shadows and Whispers

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I wake up every day a ghost in my own life, shadowless and lost. I know not my purpose or position. I have become a robot of ruthless routine, the mundane awaits. Lurking on the edge of existence, I have forgotten how to live.

An afterthought in my own story, I am a postscript, an “oh by the way”, not thought of sooner, not thought of now and sometimes not at all. I have become invisible, unnoticed, thrown away with worthless disregard.

So far away from who I used to be, so unsure of who I am supposed to be. Confusion and dread settle upon me like a bulky boulder, unmovable and crushing. Weary from the weight of this tedious mass, I am defeated and overcome.

I find myself aimless and meandering, traversing the same ground over and over, wearing grooves in an unpaved, poorly marked path. Directions are meaningless. I have forgotten the way home. Nothing looks familiar anymore. I feel forever adrift.

Lonely isolation has become an unwelcome companion. It finds me daily and like a bully in the schoolyard, it taunts me without mercy, leaving me bruised. Its ridicule embarrassing me beyond all explanation, striping me of any modicum of pride left inside me. I am a skeleton, a shell, a whisper longing to be heard.

The Juxtaposition Of Life

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I have been thinking a lot about grief and loss and death lately. This time of year holds a lot of difficult anniversaries for me in that regard. What I have figured out about loss and grief and death is that even though they feel very much like the absence of life, they are actually in fact the essence of it.

We cannot appreciate what we have to its fullest until it is actually gone. We may try very hard not to take the people and things in our lives we hold dearest for granted, but then life gets in the way. The monotony of day to day living often finds a way to overshadow the depth of our gratitude. The “To do lists, work and worry over our troubles clouds our best efforts to live a thankful life.

Life can only be fully understood through the complex prism of its contradictions. We can experience joy but we don’t really understand how important it is until we come face to face with pain. We require the juxtaposition of these things in order to better appreciate the value of each of them independently.

As much as loss feels like the absence of something, it is really the presence of it at its most basic level. Loss can feel overwhelming. The depth of our grief can feel insurmountable but this is actually what makes us who we are. If we did not grieve we would not understand the value of life. If we did not feel terrible sorrow from time to time we could not appreciate the delicate nature of love. It is our very sadness in loss that makes life and love so fragile in the first place. So, we need loss, grief, sorrow and even death in order to truly understand their parallels… recovery, joy, happiness and life.