Good Grief

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I’ve had cause to do a lot of grieving in my life. Some people feel sorry for me because of it. They like to pity me and tell me how sad they are for all the loss I have been through. This used to annoy me but now, now I realize that their pity says more about them than it does about me. In every life there is loss and in every life there is grief. No one is immune to it, even those who do not recognize it in their own lives. Unrecognized grief, stifles personal growth. I know because I’ve been there too. I’ve pushed it away and I’ve tried to ignore it, hoping against useless hope, that it would just go away. It doesn’t. When grief and loss are not acknowledged, when their value and meaning are not examined, respected and felt, grief numbs the heart, cracks the soul and erodes the foundation of who we are supposed to be. Life becomes impossible to live fully because it is dulled by our detachment and our unexplained apathy.

Grief always hurts but grief does me in when I don’t walk with it, when I do not welcome it as part of love and part of life. Loss is as much a part of living as the air I breath. I have learned that without grief, I cannot love, not truly and deeply and with passion. I have learned that without grief, I cannot better understand life’s regrets. Real grief, honest grief, gives me the chance to change, to grow and to move forward in my own life with a deeper appreciation for how the past shaped me and how the future can change me. I may never get back what I lose in grief but, if I don’t grieve, I don’t make room for anything new. Without grief I am stuck in misery and misery does not really love company. Misery is…miserable.

Grieving well is a skill. It does not come naturally. Good grief requires truth. It requires exacting honesty and this, I have learned, is not only painful, but necessary. In the end, grieving well, perfecting this skill, is freeing. But, it is not easy. I hate that life has forced me to grieve so often but, learning to grieve has made me and, continues to make me, a stronger, more empathetic and open person. Good grief, grief that is real and felt below the surface of my skin, right down through the tips of my toes, is complicated. It doesn’t happen once and then it’s over. It is a process of layered emotion and each new loss triggers memories, thoughts and feelings about previous losses, sometimes setting off a chain reaction. This, I have learned, is all a very normal part of honest grieving, of good grief.

Living with a chronic illness like sarcoidosis and now, my newest diagnosis of intercostal neuralgia, a byproduct of my sarcoidosis, is hard. Life is so much harder than it used to be. I can’t do what I used to do with ease anymore because my physical body betrays me. I am short of breath. I have stabbing pains in my ribs. I easily lose my train of thought. I often lose my balance. I’m not tired but I am physically exhausted in a way sleep does not help. I am doped up on medication. Recently, I am having trouble keeping weight on. I don’t tell you all of this so you’ll feel sorry me. Please don’t. I tell you all of this to share that part of my life’s grief is caused by serious life altering chronic illness. I am not the same person I used to be. My husband notices it. He tries not to look at me with pity but once and awhile there it is, in his eyes. I hate that. As much as I know he loves me, my disease has changed our relationship. It has changed everything.

I’ve had to say goodbye to who I used to be. I’ve had to bury her. I’ve had to let go of certain hopes and dreams for my life. So, I grieve. I have no choice. If I don’t participate in honest grief about this turn in my life, I cannot accept it and if I don’t accept it, I cannot build a new life. If I don’t grieve having become chronically unwell, I will be angry and I will stay stuck in anger or depression. Neither of which seem remotely appealing to me. So, I grieve but, it’s a good grief. It’s an honest grief. It’s grief with full and raw awareness of what is no more. It stings like a thousand bee stings. It crushes me like an avalanche of falling rocks. The weight of it is sometimes unbearable.

Yet, it’s not. It’s not unbearable because, I am still here. I am carving out a new life. Little by little, day by painstaking day, I am learning to redefine my life and as I do, I am finding hope and gratitude in unforeseen places. I recently took up nature photography. The photo above is one of mine. I hope you like it but more importantly, I like it. I love being out in nature and being blessed that it shows me things other people don’t get a chance to see. My photography gives me the opportunity to deliver nature to those who don’t have time in their busy lives, to see what I see. This is an unexpected blessing. This is a new gift that I get to share. It’s one small example of proof that as I grieve, life is renewing itself for me.

So, while grief is a difficult, complicated, sometimes ugly and very inconvenient part of life, good grief has its rewards. Good grief restores us, allows us to evolve. Good grief, while gut wrenching in the mist of it, releases us from darkness and is the very thing that will bring us back into the light.

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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 have 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 go 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.

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.

Five Years Later…

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Today marks an unusual and rather personal anniversary for me but, I’m choosing to share it because any time I can raise awareness about my disease, I feel obligated to do so. Five years ago today I underwent an open lung surgery to find out what was going on with my breathing and to determine once and for all if the images of my lungs were cancer or sarcoidosis or something else. I spent four nights in the hospital. My first and so far, (knocking on wood), only hospitalization for this disease. The diagnosis was sarcoidosis.

There are four stages for pulmonary sarcoidosis. I am stage four. Staging in pulmonary sarcoidosis is not like cancer staging, it does not necessarily predict prognosis. Staging in pulmonary sarcoidosis only determines what is seen by the physician in radiography. Stage four does mean that my lungs are scarred. I do have something called pulmonary fibrosis. I will be short of breath for the rest of my life because of it. I use inhalers to help me cope when my breathing is particularly difficult.

My life has changed a lot in five years. I could say that this disease has been the worst thing that has ever happened to me but it’s not. Even though this disease has changed my life in ways beyond measure and ways I would never have wanted or foreseen, it has also made me realize something fundamental about the importance of living in gratitude. I appreciate my life now in an almost primal way.

Having sarcoidosis has taught me the value of a simple life. I’ve let go of my need to strive and I am so much happier for it. Despite the physical hardships of my life with sarcoidosis, there is an easy joy to every day living for me now, that I did not have before I got sick and, it comes from a core understanding that control is an illusion. Once you lose your health, it puts all other things in new light.

Since my initial diagnosis, we have found the sarcoidosis in other organs and I have been on and off and on low doses of chemotherapy. There is no known cause and no known cure for sarcoidosis and treatment is really only used when the disease begins to impact quality of life or organ function. It has done both in my case.

So, I mark this anniversary with a bittersweet feeling. I hate this disease with a passion but I am equally passionate about what it has taught me about the value of living in peace and love and for the understanding that this very moment is the only one that truly matters.

The Odd Couple

 

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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.

My Sarcoidosis Family

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Like a lot of people, when I was first diagnosed with sarcoidosis, I took to the internet. I needed to learn more about this strange disease. In my quest to find more information about it, I also found other people who have it through online support groups. In these groups, I came to understand the power of grace, the meaning of kindness and the joy of unconditional friendship.

When I was newly diagnosed, I was scared and confused and I had a lot of questions. People who were well experienced in living with this disease held my virtual hand as I began the relentless journey of life with a chronic illness. They patiently eased my anxiety about the unknown. They gently guided my attitude to a better place and they showed me overwhelming amounts of love and encouragement when I felt my lowest. Without them, I would have been utterly alone as I faced a life altering voyage into the world of the unwell.

As I’ve come to know my virtual sarcoidosis family, I’ve observed some pretty amazing things about them. They rarely complain and when they do, they always apologize for it. No matter what they feel or what they are going through, they will always make time for someone else in need. My virtual family is brave. They are fierce and they are proud. Having sarcoidosis does not stop them from striving to live their best lives.

My sarcoidosis family sets an example for me about the kind of person I want to be with this disease. I want to be strong. I want to stay positive. I want to keep my faith and I can do all of these things because my sarcoidosis family gives me the drive to remain focused on what is in my control, rather that what isn’t. I would not be doing as well as I am without the collective power of my virtual clan of sarcoidosis warriors!

We are a relatively small community. We have lost members and when we do, we grieve together. We cry for their families and share in their pain. Every time someone in our sarcoidosis family leaves us, we feel the hole they leave behind and their loss only makes us want to fight harder to find a cure.

Having sarcoidosis sucks. That’s just the way it is. It makes daily life difficult. It’s unpredictable. It hurts. It’s hard to breath and it is a challenge to think straight. When you live with chronic sarcoidosis, your world shrinks because you simply cannot keep up with the rest of it. It can be lonely and it is easy to feel abandoned by people you once thought were your friends. They don’t mean to leave you behind. They just don’t understand your experience and as a result, they drift away. For all these reasons, it is important to connect with those who do understand, who have walked in your shoes.

During Sarcoidosis Awareness Month, I want to take a moment to say thank you to this beautiful tribe of people who keep me from feeling abandoned and who inspire me to keep fighting. I’ve been formally diagnosed with this disease now for five years. My goal is to pay to forward. My hope is that I can be the comfort someone new to this disease needs, that I can bring them safely into the fold of the loving arms of this wonderful virtual family.