A Holiday Gift For You…Things My Mother Taught Me

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My mother has been gone for over twelve year. I have a lot of special memories of her and I am often flooded by them around the holidays. She loved holidays because it brought family together and she was the glue that held us close. She taught me a lot about life, that it’s good and that it’s difficult. In my mother’s case, a lot of what I learned from her was through example. She carried herself with a quiet dignity, a humility and beauty that evades most people. I think I miss that about her most of all. I have known no greater person than my mother. Her advice and example have served me well through my life and while I know I will never match her grace, it’s something to keep striving for. As my gift to you this holiday season, I will share some of the best advice she ever gave me:

The day doesn’t start until your bed is made 

You can be happy or you can right but most of the time you can’t be both 

Eat a salad 

Aliens exist 

Find something to laugh about every day 

Strength is not boastful

Learn new things all the time 

Vote…in every election no matter how big or small

Looking good is important because it makes you feel good about yourself

Never kick a dead cat (Translation: Don’t go back to something once it’s over) 

Stay current with news…and with the latest styles

Revenge is a dish best tasted cold 

Follow the rules

If you don’t take care of your own health…No one else will do it for you

Be independent and self sufficient (Translation: Don’t ever “need” a man) 

If you marry…don’t just love him…like him too

Don’t dwell, learn from your mistakes and, move on

Arrogance is ugly

Don’t use fear as an excuse to stay stuck

Daily gratitude is the key to a peaceful life

Find ways to express your creativity 

Opinions are cheap…everyone’s got one

If you can read…you can cook

Take a look around and don’t take what you have for granted

You can re-invent your life if you don’t like where it is headed

Try to always be truthful and if you can’t be truthful…don’t talk

Pop music is awful

Explanations are one thing and excuses are quite another

Have hobbies…lots and lots of hobbies

Don’t talk outside of the family (Translation: Don’t gossip about your family with outsiders) 

You don’t have to express every thought in your head

It’s called work for a reason…It’s not supposed to be fun

Just keep putting one foot in front of the other

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The Answer

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Acceptance only comes after awareness.

Acceptance is acknowledging what can’t be changed. 

Acceptance doesn’t mean liking something. 

Acceptance changes perspective.  

Acceptance is not resignation. 

Acceptance brings peace. 

Acceptance and attitude go hand in hand. 

Acceptance creates opportunities for growth. 

Acceptance requires tolerance. 

Acceptance is humbling. 

Acceptance is a process. 

Acceptance only happens with patience. 

Acceptance is an act of self-restraint. 

Acceptance is relinquishing control. 

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.

Grief Lessons From A Dog’s Life

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A year ago this month I lost my heart dog, my soul mate with a fur coat, my four legged best friend. It’s been a challenging year of grief for me and with every passing day of her absence, I feel Zoey’s physical presence slipping away from me while memories of her continue to flow through my mind like water rolling down hill. In this past year the thought of Zoey is laced into most of my daily thoughts. There are reminders of her life all over my house. I see her sitting on the hill in the backyard and yet she’s not really there. I still step over her when I get out of the shower but she’s not there. At night when it’s time for sleep, I still listen for her snoring but I can’t hear it anymore. I can’t help but think of her when I spend time with my other dog, Abby. They were best friends. Abby misses her too. I miss them together.

Zoey was a beautiful animal. She had a long flowing fur coat and eyes that would melt the heart of even the iciest soul. She had a way about her that made you fall in love with her even if you’re not a dog person. There was a kindness in her that all humans could learn from. For over fourteen years, Zoey was a constant presence in my life and she was there for some pretty major life events…both good and bad. When I was happy, she shared in my joy and when I was sad, she comforted me. She knew me better than most people know me and I trusted her more than I trust a lot of people.

Throughout her life, Zoey had a way of teaching me things. She taught me patience when she was a puppy. Boy she was a biter…especially when she was teething. She taught me how to love unconditionally because there was never a time I got mad at her even when she did stupid things all dogs do. Zoey taught me about living in the moment. Even as she aged and mobility was more difficult, she still loved her walks and she stopped to sniff every mailbox. She never stopped playing. Even on her last day, I have pictures of her outside playing with Abby. She loved life to the very end and this is her legacy. This is perhaps the single greatest lesson she left for me. Cherish life because one day you won’t be here anymore. Love those around you as deeply and freely as you can and always be happy.

Zoey’s death and this past year without her has also taught me about the process of grieving. Grief allows us to say goodbye but more importantly, it allows us to honor those we have lost simply by remembering them. Grief is personal and while no two people do it exactly the same way, it is something we all must to through, if we are to experience love in our lives. If you don’t grieve, you haven’t loved.

I’ve also learned that grief is sneaky. You can feel it even when you don’t think you are! Something seemingly out of the blue reminds you of the loss and bam, suddenly you are filled with unexpected gut wrenching, soul crushing sorrow. I used to hate it when this would happen but now I have learned to accept it. I don’t like it but I know now that it simply means I was actually lucky. I was lucky to have had love so strong in my life that the absence of it cuts though me sometimes. I have learned that in order to have meaningful relationships, with humans or with dogs, you have to allow yourself be vulnerable enough to accept this kind of pain and if you don’t, it means you are holding a part of yourself back. You are missing out on the entirety of love’s purpose, of its gift and all that it has to offer.

Zoey’s physical absence is hard to cope with but the memory of her, the lessons she left me with, stay with me. When I act on these lessons, when I allow myself to love openly and without hesitation, when I seek the true beauty in every day joys otherwise taken for granted, when I put my faith in love and allow myself to experience all of its tender mercy and its inevitable heartache, then I am honoring Zoey’s memory because I become a living example of these lessons. This allows a part of her to stay alive in me. I can’t think there will ever be a day that I stop missing Zoey but, as time goes by, the pain of her loss slowly turns into gratitude for her life. I was lucky. I was blessed to have had the love of a creature as beautiful as my precious Zoey and for all the lessons her love taught me about how best to live my life. I will continue to honor Zoey’s memory and the life that she lived by trying to love and live well with joy and an open heart. It’s what she would want me to do.

Don’t Hate Me Because I’m Happy…

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If there is something chronic disease has taught me over the years, it is that happiness is a choice. Sure, that might sound “cheesy” but it’s not, far from it, in fact. Learning to be happy in the face of constant pain and an uncertain future, learning to be happy when you have been forced to make yourself financially dependent on family, learning to be happy when every breath of air is a struggle, learning to live in constant fear, learning to let go of your career…is not easy. It’s a skill.

Recently someone else with sarcoidosis had a very powerful and alarmingly negative reaction to my suggestion that when we are stressed, it’s a good to “step back, inhale and laugh.” That when we are stressed we should remember that we are never given more than we can handle. She said, “I have lived with a positive attitude, glass is full of golden apple juice, jada jada. It is just more serious than a bunch of platitudes. Coping skills are built with time and character, not a bunch of cheesy sayings.” Being reminded to step back from stress is not “cheesy” and it is not a “platitude.” Remembering to step back during stressful times, in difficult situations and have a bit of a sense of humor, is in fact, a coping skill and a good one. It’s also one that takes time to develop and it is one of many ways to build character.

Whenever I am taunted by someone for being generally happy or for trying to face my problems with a positive attitude, I find it sad. I feel pity for people who choose to be victims. I have been accused of being a pollyanna when it comes to this disease. This is not true. There are no reasons that I can think to be “excessively happy” about life with chronic sarcoidosis and, this disease has taken plenty from me, just as it has anyone else who lives with it. I simply refuse to dwell. I also use my finely tuned, well developed coping skills to find answers to my problems, and perhaps most importantly, I don’t judges others for where they might be in this horrible journey we are all forced to travel.

Give anyone with this disease a chance to tell their story and you’ll be in tears in no time. This disease is a thief. It robs us all of physical comfort, emotional stability, financial security and quality of life. Not a single person with chronic sarcoidosis goes unscathed. We are all scarred. Our scars might be different but none of us escapes its wrath. So, when someone gets pissed off at me for sharing how I cope with stress, for believing that I can handle what this disease throws at me, for having enough faith to know that this is true, for using good humor in difficult times, for knowing that when I change my perspective, it changes everything, I can’t help but be taken aback. It means I am being judged by someone else who is suffering a similar fate.

It is pathetic to be judged by a fellow soldier in the fight against the trials of life with sarcoidosis but, it happens and, it has happened to me more than once. I’ve been told that I don’t know true suffering because I am not completely alone with this disease. I have been told that I don’t know true suffering because I don’t struggle financially because of this disease. These are judgements people have made of me, without facts. These are judgements people have no right to make and yet…

People also don’t really have the right to judge how I choose to look at my life since getting sick with sarcoidosis but some do and, some do so with an angry heart. I have scars. I have simply learned to live with them. I have pain but I have learned to cope with it. I struggle just like everyone else but, I have learned to make happiness a priority in my life and, I actually have this disease to thank for that. I make it a practice to be grateful, just like brushing my teeth every day, regular exercise and eating healthy. I know what my scars are and I know what they have done to me and what they teach me. I’ve learned to cope and by learning to cope, I’ve learned to be happy.

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.

 

Sidelined

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It’s hard to understand that you’ve become a footnote in your own life. It snuck up on you as the person you used to be slowly drifted into nothingness, a faded memory of evaporating mist, you no longer recognize where you are because, now you are sidelined in your own life, benched, removed from the center of the action and, this is not a comfortable or welcomed perspective. You used to be the star, the prizewinner. You used to surpass the weak, the less able, but now…now you’ve become feeble. You’re fail. Despite your best efforts, you’ve lost your step. Your drive has diminished and your self confidence is shattered.

The game of life goes on without you or, is it better to say that the game of everyone else’s life goes on all around you while you’ve stalled, stammered and faltered to keep up? Your position has been usurped. Your place on the team has changed and you are no longer part of the starting lineup. You are alone much of the time, humbled by your new role as a bench warmer but, the playbook has been rewritten because your body and your mind have betrayed you. You’ve been turned into the weird introvert, more interested in the stats of the game than being a player. You are on the outside, unwanted solitude your constant companion. You’ve become that uncoordinated, awkward, self-conscious loser who’s been taken out of the game because you’ve become a liability.

When did you first notice that life ejected you from the game? How did this star player end up here, on a splintery wooden bench, with the other misfit players who just couldn’t handle the action? What happened to the hero who broke records and often had the highest score? What nightmare brought you to this place of second best? These are questions that are not easily answered because they are also difficult to accept. It’s hard to accept the loss and sorrow that comes from a body, mind and soul irrevocably changed by a dubious disease that hollowed out your lungs, physically scarring you in ways that are seen and unseen.

Sarcoidosis has stripped you of your status. It has taken your championship mentality and reduced you to the easily squashed opposition, at best a runner up but defeated with every effort. Brutal in its reality, this disease has made you insignificant and small. You’ve become a minor league player, an amateur, no longer deserving the prestige of a pro. Your glory days are far behind you. You have been sidelined into obscurity, fading, fading, fading until history has forgotten who you are and even who you once were.

A Different Kind Of Quest

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You often hear people talk about life needing a purpose, that direction is important and, that without purpose, life is meaningless. Books are written around this idea and people buy them by the thousands. Professional motivational speakers make good livings from trying to sell the idea that life requires intention, that there is some thing, some magical thing, out there that we all must seek and then strive to live up to. People spend years questioning the value of their lives because they question if they are living up to expectation, expectation that is often manufactured and placed upon them by the pressure they feel to excel in their quest to find meaning.

There was a time in my own life when I engaged in the chase, a mad desire to make sense of it all, to find a way to leave my mark on this world and to aspire to be more. There was a level of determination behind my impulse to seek some great truth in life that bordered on obsession. I was restless, anxious and always on the look out for signs that I was doing the right thing to reach a higher design. It was utterly exhausting and, knowing what I know now, a fruitless waste of energy.

My quest started to come to an end back in 2011, around the same time I started the long journey into the world of chronic health problems. Before I was formally diagnosed with sarcoidosis, there were lots of other theories about what was wrong, each one scarier than the last…lupus, MS and even cancer. There were lots of doctor visits and hundreds upon hundreds of dollars in co-pays for various tests, scans, labs and procedures. It was during this time, suddenly thrust into the world of the unwell, a medical mystery no less, that I started to take a different kind of stock in all this business about life’s purpose and meaning.

Over the years that I have become “alternatively well”, have struggled with shortness of breath, body aches, unexplained fevers that come on without notice, nerve damage, bone pain, massive brain fog and fatigue, I have also come to understand a very simple truth. Life has no one set purpose for me. Concepts like purpose and meaning have taken on an entirely new significance for me. I am simply trying to stay alive now. Having sarcoidosis has distilled and purified the essence of life for me. Every day adds up to one thing for me, a gift. I no longer have a need or even a want to chase some great goal and, I find living my life purged of the anxiety to live up to some made up expectation that I am supposed to figure out my “gift” and share it with the world, actually makes life far more meaningful now than it was when I thought I had to figure it all out and achieve something profound.

Having sarcoidosis and living inside a body that doesn’t work properly, has taught me that life’s purpose is not reason or passion or dreams or longings. Life’s purpose is survival in the here and now. I have come to appreciate that health, security and time are not promised, even when you try to do all the “right” things. Now, I live each day, not like it was my last, I honestly don’t have the energy for that, but I live each day with a quiet gratitude, that I am here…that I get to experience another sunrise, a walk with my dog and a hug from my husband.

Life is not about purpose. Life is about gratitude, simple gratitude for the things that are actually taken for granted by those chasing a fabricated higher calling, a deeper meaning, a drive for excellence. Sarcoidosis has taught me that my previous quest for betterment was a wasted effort, that what I thought I should be doing wasn’t really important at all. I was good at my career but I rarely watched a sunset. I hugged my husband but I took it for granted that he’d always be there to hug. Once you face the perils of poor health, you also come to understand time differently. There are only a limited number of sunsets to watch and hugs to be given or had. Live with gratitude and you live with purpose. It’s as simple as that.

This Is Not Political…It’s Personal.

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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.

 

As Real As It Gets…

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I have to just say this, while it’s fresh on my mind, right now, this moment…I have to admit that living with a disease like sarcoidosis is hard. What makes it hard isn’t the physical pain, although it’s unpleasant, but the fear of what this disease is going to do next. Not every day is hard, not every moment is scary, but just generally, it’s difficult and sometimes overwhelmingly so. Often, I can shove it into the recesses of my mind, to will it out of the way, so that I can live as normal a life as possible. I’ve learned to cope in ways I usually take for granted, like budgeting my time and energy where I need it most and like tuning out constant annoyingly unpredictable levels of pain. I have learned to forget what was once normal, what healthy was. I’ve adjusted to a new way of living. I won’t call it a “new normal.” I hate that expression. There is nothing normal about life with a disease like sarcoidosis. There is nothing normal about gulping for air or arguing with yourself to accomplish simple tasks like folding laundry or grocery shopping.

Despite my built in denial system, there are times in my life when this disease smacks me in the face and reminds me that it’s real, it’s part of me and it’s not going anywhere. Times when I get sick or injured and it takes me eight million times longer to heal than someone who doesn’t have a disease like sarcoidosis is one example. Another, is when I fall down from dizziness because my pulse oxygen level drops into the “danger zone.” I find myself reminded that this disease is a stubborn shadow lurking in my life when my husband looks at me with pitiful eyes after I’ve been coughing and wheezing for several minutes or when I am too weak to stand or climb stairs on my own.

As hard as I try to keep the fear of what this disease can and probably is doing to my body at bay, as hard as I work to combat this disease and the side effects of all the stupid medication I take to manage the symptoms of it, the fear patiently loiters, like a peeping tom it watches me and waits and, even though I can often quiet the fear, push it into the depths of my core, it never really goes away. The fear remains with me always, like the hum of a fluorescent light bulb. My fear is really just one more symptom of this disease, one more thing I have had to learn to manage.

Once and awhile though, something happens to kick that fear into high gear and it doesn’t even have to be something that happens to me. It can be something that happens to someone else in my small community of friends and fellow soldiers who wage their own private hellish war against this mean monster of a disease. I am experiencing one of those “once and while” moments now. I found out just a few days ago that a friend of mine with this lousy disease had a double lung transplant. This news is both exciting and terrifying. I am thrilled her moment has finally come to try to get a second chance at a better life, of course. And, this is something she must do if she wants a fighting chance at being around for any length of time for her family and loved ones.

I find myself feeling both hopeful and enormously anxious, terrified really. This is major surgery and that’s always scary but, couple it with a chance of organ rejection and it’s spine tingling. At the same time, if all goes well, she will be free of supplemental oxygen. She will be able to breath on her own and she will reap the rewards of what could truly be a more normal life. Whatever happens next, the journey will be long and the healing slow. I will hope for the very best for her because she deserves it. She is an inspiration to a lot of us with this disease and her legacy always will be.

My feelings about her journey are also selfishly personal. Whenever I hear a story like this, it is an acute reminder of the reality of how dangerous this disease is. No matter how I run from it, sarcoidosis is always one beat away for catching up with me. Stories like this remind me that sometimes, sarcoidosis could not only catch up to me but it could overtake me and leave me with limited options. There are times sarcoidosis has already left me blooded and bruised, beat up and worn out. There are times sarcoidosis has already forced me to make very difficult health and lifestyle decisions. Sometimes sarcoidosis refuses to live in the background and when this happens…sarcoidosis is as real as it gets.

The fact of the matter is that this disease is always as real as it gets, even while I attempt to squash it down, to accept the humiliation it forces upon me with some modicum of dignity and, even as I make necessary lifestyle changes to accommodate it, sarcoidosis never takes a break from its desire to reek havoc on body or in my life. It never stops it’s quest to send me into madness. Sarcoidosis seeks to do me harm and regardless of my best efforts to ignore it, sarcoidosis isn’t going anywhere. Sarcoidosis is a reality and it is woven into the fabric of the story of my life…and it always will be.