I Never Throw The First Punch

28577313_10156566802895715_4711859719628851040_n

Once a upon a time in junior high school, I was walking down the hall, minding my own business, on my way to my shiny yellow locker when suddenly three girls were in front of me. They blocked my passage. One of them said, “You’re new here and we don’t like you.” My heart started pounding so loud, I thought the gathering crowd could hear it. My throat got a raspy kind of dry and my lips curled from a desperate thirst. My palms were clammy. I said, “I’m sorry to hear that. Could you excuse me though, I’m just trying to get to my locker.” The girls stepped forward further crowding my personal space and refused to let me pass. Soon, I was cornered and felt very much like a trapped animal, backed up against that bright yellow locker I so longed just to get open, get my books and get on to my next class. I could feel my cheeks redden and sweat began to drip, drip, drip down my back. The throng around us grew and everyone just watched as these girls menaced me. They were bullies. They were testing me to see if they could control me. I felt confused and unfairly picked on. I didn’t know these girls. It was my third day of school in a new district. I didn’t really know anyone yet.

Things went from bad to worse as they continued to call me names, standing at an uncomfortably close distance. I could smell their sour breath as they railed at me. I remained quiet. I looked down. I tried not to engage. I just wanted to get out of there and I wasn’t sure how I could manage it. They had me against the wall and I could feel the cold steal of that yellow locker on my back. I didn’t care so much that other people were watching, except that it would have been nice if just one of them stepped in to help but no one did. I hadn’t thought much about how the crowd would respond to the way I reacted to these girls. I only wanted the harassment to stop and I just wanted to be safe. I bit my lip so that I would not start crying. I’m not really a crier but the stress of this most unwarranted attack was starting to get the better of me. I could feel myself shrinking. I hated that feeling more than I hated these girls who were publicly humiliating me.

I wondered how things could get worse or even how I would get myself out of this situation. I didn’t have to wait long. One of the girls spit at my feet and another one slapped me hard across the face with an open fist. I really didn’t see it coming and it stung as sharply as a bee sting and I’m allergic to bees. For just a split second, everything froze. Then, and I had to have this part retold to me by the myriad of observers because I could not remember it, I apparently dropped my books and started throwing punches. I only have a very vague memory of a lot of noise. Shouting mostly, I think it must have been the crowd.

Later in the principal’s office, I was informed that girl who hit me, her nose was broken. I was heartsick. I didn’t think I was a fighter. I’m not a fighter. My knuckles were raw and my head ached from getting my hair pulled…other than that, not a scratch on me. The principle asked me several questions about what had happened and I told him what I remembered, that I’d been unexpectedly cornered and then assailed. He handed down his punishment. Detention for a week for me and suspension for the girl who started the fight. She and her “mean girl” friends, apparently had a history of starting fights. I was not singled out for any other reason than being new to the school. The principle said he didn’t want to give me detention but he had to. I understood and took my punishment without complaint.

When I got home that night, my mother was beyond furious with me. My step father was proud. He asked me how many times I punched the other girl. I told him that I had no idea. He insisted that I give him a number. I told him five or six. He gave me six dollars….a dollar for every punch. I should have told him fifty! He told me if I had started the fight, then I would have been in trouble but he was proud of me for defending myself and told me, in time my mother would be too. I’m not sure she ever was and I was grounded for a month.

I often think about this story and others like it in my life. Just yesterday I was walking my dog. She was doing what dogs do on walks…sniffing and peeing on things. We were at the yard of a well known grumpy old man in our neighborhood. We were down by the curb, in the street, exactly where you’d expect someone to be who is walking their dog. She stopped to sniff a bush when the grumpy old man came out of his house yelling, “Get that filthy animal off my lawn.” I was shocked but, given this man’s reputation, not surprised. I said, ” Sorry…She’s just sniffing a bush. We’ll be on our way.” He said, “What are you stupid or something? I told you to get that beast the #@%#  off my lawn.” Before I even realized it, I said “Calm down and don’t be such an #$%@&*$#.”  The man was stunned. I don’t think he is used to anyone talking back to him, let alone a woman. I do live in the “Deep South” and this man is not only a grump, he is also a typical Southern “good ‘ld boy”, used to women being seen but not heard. He didn’t say another word and my dog and I went off to finish our walk.

That’s how I am though, I guess. I won’t start the fight but apparently if you come at me, I will finish it and I will give it my best shot to win. I’m a peaceful person until I am provoked but apparently, I am not a pacifist. Sometimes, I wish I could respond differently to mean people. My husband often turns the other check. He will smile and wave at people who are unnecessarily rude. He would have smiled at that grumpy old man and probably just waved at him had he been there. I’ve observed him enough to see that this is equally disarming as surprising a bully by fighting back. Sometimes, I wish I was more like that but I’m not. I never throw the first punch but it’s in my nature to defend myself…vigorously.

As I think about this quality as it relates to having chronic sarcoidosis, maybe it’s not a bad thing. Sarcoidosis invaded my life, much like those mean girls, out of the blue and for no good reason. It cornered me and it scared me, just like they did. It cusses at me, just like that grumpy old man. Sarcoidosis wants me to be miserable, just like bullies do. If I am miserable then the disease has the upper hand. I become weakened in misery. If I am miserable, I give my sarcoidosis ammunition to beat me. Sarcoidosis is a menace of a disease. It’s wildly unpredictable. You don’t know what is going to happen next when you’re in the throes of it. Sarcoidosis punched me first, but as I look at how I have responded since my diagnosis, I have been fighting back and I am giving it everything I’ve got. I might not win this war but I intend to put up a hell of a fight!

I never gave much thought to what I would do if I ever got sick, really sick. I’m not sure anyone does until it actually happens to them. I’ve learned that my fight instinct kicked in. Even though this instinct has not always served me well, has sometimes gotten me detention or disrupted my serenity on a walk with my dog, I now see this instinct in a whole new light. I am actually grateful for it because it is saving my life or at least prolonging it.

Advertisements

Five Years Later…

64137907

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.

Sneaky Little Bastard

17796128_1675754719107397_3310528276320830728_n

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yes I Can!

download

Yes I can…Oh yes, yes, yes I can!

These are words that I tell myself daily. This is my private little mantra. I say it when I wake up. I say it when I get out of bed. I say it before I shower and get ready for the day. I say it before I exercise. I say it before I do chores. I say it when it’s time to walk the dogs. I say it when I have to go to functions or parties. I say it before I travel. I say it when I go to the doctor. I say it when I have to take medication I’d rather not take but need. I say it when I go to bed and try to sleep.

Sarcoidosis makes it hard for me to breath, it makes my bones ache, my joints stiff, my nerves burn. It makes my chest hurt and it turns my skin funny colors. Sarcoidosis makes me tired all the time because my immune system sucks all my energy fighting phantom foes.

Life is an effort but it’s an effort that I am not ready to give up on and, I know that each day requires me to make a choice. I can give up or I can tell myself that I can do it. One day at a time is all I have to get though and when that’s too hard, I only have to focus on the hour ahead of me.

I have become my own best cheerleader. I smile when I don’t want to but, this changes my attitude and eventually, I find a little joy each day. Some days, I find a lot of it. Many days, actually. I will not let this disease beat me. I will not lose because there is too much to lose. Loss is not an option.

There are times I have to tell myself that I can tolerate anything for just a day that would horrify me for a lifetime and, I break down my struggles into manageable chunks of time. I don’t have to tackle every problem this disease throws me at once. I am learning to prioritize.

Once upon a time, I could take a big bite out of life and I could multi-task my problems and setbacks didn’t phase me. Since my sarcoidosis diagnosis, I am not able to do this anymore. Now, I try to face what I can when I have the energy and I have to break down tasks into parts and pieces and accept that things may not fall into place as quickly or as easily as I’d like them to.

It has really been about learning to adjust my expectations and if truth be told, I am still very much a work in progress in this regard. I don’t ask for help well. I still want to do it all myself. Asking for help feels like giving up but asking for help can actually be a sign of strength, a concept I understand in theory but am not yet fully comfortable with.

Each day is an adventure in picking my battles. Each day is an opportunity to face life with a can do attitude. Each day is a gift beyond measure. Each day that I tell myself that I can…I know that I will!

The Sound Of Silence

14595726_10154733490510559_4267890854195816357_n

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

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

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

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

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

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

But For The Grace…

14433090_10154635552470559_5135213064476380587_n

The past week has been difficult in the sarcoidosis community. First there was a suicide and then there was a death from complications from this disease and finally children of a person with this disease found their mother on the floor of her home in need of immediate care. These are only the incidents I know about. I am sure there are many more quietly suffering. When things like this happen, I am reminded that I am sick, that I have a very serious disease. Most of the time, I try not to dwell about it. I try to act as if everything is normal and I am okay. But, I am not okay. No one with this disease is truly okay. We are all on the verge of the unknown.

Staying positive and striving to live the best that I can is the only way I know how to survive the “sarcoidosis life.” Once and awhile though, reality finds a way of seeping into my otherwise protected world of self preservation. I don’t live in denial that I have this disease. Far from it. After all I write about it, frequently sharing my trials, challenges and frustrations with anyone who is kind enough to take the time to read about them. I try to live in harmony with my disease. I strive to balance the uncertainty of it all with gratitude for the life that I do have. I work daily on finding hope and I make a choice to be at peace as much as possible. I have found the only real way to have a life and have this disease is to live with a thankful heart. Things could always get worse tomorrow but today is all I have.

When disaster, death and sorrow rip through my sarcoidosis community, I am made painfully aware of the saying…”But for the grace of God go I.” At any moment, I could be the one being written about because I’m no longer here to be the writer. This reality, this knowledge, this awareness is humbling and deflating. It takes my breath away and strips me of that small bit of comfort I know is perilously built on the hope that there is more to life than my disease. This cannot possibly be what I have become!

When the reality of what this disease is capable of smacks me in the face, my shields come down and I am laid bare, made vulnerable by the depth of destruction this disease is capable of inflicting. It is probably important to be immersed in this reality from time to time, to be reminded that none of us knows what is in store. This truth, while incredibly painful to acknowledge, gives me a resolve to press on, to continue fighting for my life and look for the joy in small everyday things, to remain vigilant that I am fragile and to know that grace is with me when I remember to look for it.

A New And Very Different Life

14446052_10154635554960559_6097087134790913576_n

When you live in a body that is broken by chronic disease, there are obviously physical challenges but the hardest part of me, living in a body that won’t cooperate, is not the physical discomfort, it’s the emotional strain of knowing I am not the same as I was before sarcoidosis decided to invade my body.

I don’t waste my time asking “why me?”. I’ve lived life long enough to know that “stuff” just happens to all of us at different times and in different ways. Part of living is learning how to cope, so “why me” becomes a wasted question. It’s not worth the time to lament over. That being said, I do grieve who I used to be. I grieve the ease by which I once ran around on the tennis court. I grieve a lost career because I no longer have the stamina or brain power for that kind of success. I grieve a body that does not hurt all the time. I grieve lost friends who have faded away because they didn’t want to get to know the new broken me and I can’t keep up with them.

Life is no longer what it used to be and while living with a chronic health condition, impacts the body, it also taps into the soul and tears at the psyche. Managing the physical strain of sarcoidosis has become the easy part. I try to get enough rest, avoid stress, see my doctors, take my medications, eat a strict healthy diet and get my exercise. It is the emotional stress of this disease that is trickier, harder to pin down and often more elusive. As I have learned what to do to stay physically healthy, I have also learned what to do to stay emotionally healthy and the two actually go hand in hand. If I am not taking care of my body, my mind gets weak. If I am not taking care of my mind, my body gets weak. Taking care of my mental state involves a conscious daily effort to focus on what is good instead of what is bad, on what I have instead of what I have lost.

Emotional management of my disease, requires that I am honest about how I feel even if that honesty is hard to accept. I have to allow for balance between grief and loss and moving on. I’ve had to make room for a new and very different life than I ever expected. I have had to learn to be more comfortable being vulnerable and I have had to learn to accept help from other people. I have had to learn that pride is no always my friend. Sometimes people fail me and I’ve had to learn to understand that it’s because they just cannot understand my experience. I didn’t before I got sick. So, I also practice a lot of forgiveness to keep my emotional state as healthy as I can.

While caring for myself physically with this disease is pretty straight forward, caring for myself emotionally isn’t linear. While it’s okay to feel upset about having this disease, it is not okay to stay stuck in anger. While it is okay to be sad about having this disease, it is not okay to wallow in sorrow. While it is okay to grieve the losses, it is not okay to live in the past. Finding emotional health when you live with a disease like sarcoidosis, is all about finding equilibrium and learning that there are limits in hanging on to emotional pain and that there is freedom in letting it go.

Today, I spend a lot of time focused on grace, gratitude and my overall attitude toward whatever faces me. I can walk in faith, believing I am up for the challenge or, I can shrivel and wither in its wake full of bitterness and anger over the contest ahead of me. I know this is a battle I cannot fight alone or in the dark. So, today I have learned to ask for help when I need it and to say no when I cannot do something. I am learning to slow down and stop if I have to without guilt because I did not ask for this disease and I cannot always control it. My emotional health depends on my ability to accept that my life has changed and to do so without shame for my limits.

There are things in the life worth fighting for and sarcoidosis has taught me that finding happiness and serenity are among them. No matter what befalls me, no matter the size of the mountain the rises ahead of me, I can take the journey one step at a time, afraid but still functioning, in sorrow but with hope that each step will lead to a better place of peace and light. I know with my whole heart and my entire being that my life is made or broken by the choices that I make and while having sarcoidosis is difficult, even life altering, how I respond to the challenges it presents will make all the difference in the new life that am asked to create because of it.