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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Sneaky Little Bastard

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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!)