When I read this article…I thought it perfectly and entirely summed up what others need to know about me because of my chronic sarcoidosis. All eight items describe me and it’s as if the writer reached into my head and stole my private thoughts. Number six is especially true for me. I hate to ask for help but more than that, I hate the thought that others might believe I am weak, so I soldier on and sometimes it gets very very very lonely.
Those of us with invisible chronic conditions often hear that we don’t look sick and within our circle, we have a lot of conversation about how this makes us feel. Many talk about how it makes them feel discounted, like what they are experiencing isn’t real or doesn’t matter, simply because it can’t be seen. Plus, we’ve all gotten very good at hiding the subtle side of being persistently sick.
I used to get annoyed when people would tell me that I don’t look sick. I understand the demoralizing feeling that comes with not feeling validated for your experience simply because someone does not understand it. I think this feeling is the strongest when you are newly diagnosed with a chronic disease/disability. Your world is turning upside down and it is a very scary time so validation is very important and, to not get it because you look better than you feel…hurts.
Now that I’ve been diagnosed for several years, I have a few new thoughts to add to the “You don’t look sick” conversation. I no longer get mad. I know how I was before I become chronically ill and while I never meant any malicious intent, I am sure that I said and did ignorant things to people who were in the boat I am in now, without ever realizing what I was doing. So, I cut people who don’t get it a lot more slack. Plus, I just don’t care anymore. I don’t care what other people think about the way I look. I know the truth and that is all that really matters. I also know that just because I suffer constant pain, I have every right to look as good as I want to look!
Recently though, I’ve had a newer thought on the subject. Not that long ago, I saw a person in a wheelchair outside of a store, probably waiting to be picked up. The person that I saw was clearly disabled, cerebral palsy maybe, I don’t know for sure but, whatever this person was living with was not invisible. As I looked at this person, a thought struck me like a thunder bolt and it’s one I never had before. I became grateful that my disease is invisible. I’m not being remotely critical of anyone with a visible disability here. It’s not this person’s fault their disability is visible any more than it is mine isn’t but, I realized that when your disease is invisible, at least you have some control over it. You have control over it in a way you simply don’t when it’s just out there for all to see.
I have a choice to let people know I am chronically ill/disabled or to blend in. I don’t ever have to explain myself to anyone or to receive pitiful looks from people who might wrongly believe my life is harder than theirs just because I can’t do everything I want to do. There is something to be said for being able to blend in when you want to. There are times that blending into every day society is just easier. It gives me an escape from my own reality that the visually disabled never get. I can forget. They can’t. They are reminded of their physical challenges constantly. I am not. I mean I am, because of how I feel but not because of how other people react to me. That’s what I mean when I say, at least I have some control. I can avoid other people’s pitiful pity whenever I want to. I’m actually grateful for that and I’d never thought about the fact that there are actually some advantages to having an invisible illness. This is one of them.
Because my disease/disability is not obvious, I have the advantage of living in two worlds. People don’t stare at me. I don’t feel their glare as I do my grocery shopping or try to enjoy an evening out with friends. I don’t usually have people automatically assume things about me unless I tell them I have an invisible chronic disease. It’s only then that I am sometimes forced to deal with their ignorance but for the visually chronically ill/disabled, dealing with ignorance is a constant. One may not better than the other, invisible versus visible, they are just different. Being chronically ill/disabled is hard but the realization for me that having in invisible illness actually gives me some control, is a new and empowering thought!
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.
Acceptance, Attitudes, Awakenings, Awareness, Balance, Blessings, Choices, Courage, Friendship, Grace, Gratitude, Inspiration, life, Love, Openness, Perspective, Sarcoidosis, Strength, Truth, Willingness
Yesterday was a strange day for me. We made big plans to go to a state park that we had never been to but had been told was beautiful. The park is about an hour and a half to two hours from our home, most of that journey taken on back country roads through tiny towns that are nearly deserted. We packed the camera, some sunblock, our water shoes because there is a creek there with a rock bed that is supposed to be fun to explore. We also packed a towel and some water to drink. We opted not to bring our dogs since this was our first time adventuring in this particular place. We figured that if we loved it, we’d want to go back again and we’d know from this visit if it is really a good place to bring them.
The beginning of our journey started out fine. It was fun actually. We were driving a loaner Lexus since my husband’s is in the shop and it’s pretty sweet ride. We cranked up the tunes and the was sun shining brightly. I was excited to get out of the house and do something different. Sarcoidosis tends to keep me close to home, so these small adventures go a long way toward picking up my spirits.
Half way through our ride to the park, the clouds started to roll in. They were big white puffy ones at first, so we didn’t think much of them and continued to sing along to our own version of “carpool karaoke”, in a happy oblivion. Life was feeling pretty good. I was looking forward to getting out in nature with my camera someplace new. I always enjoy seeing new places through my camera lens. I think I see things I would not otherwise see this way and capturing just the right shot gives me a feeling of pride.
Then it happened. Lemons. The clouds turned darker and soon it was dark as night at 2 pm in the afternoon. At first the rain drops were big ones and my husband mentioned that big rain drops usually means it will pass quickly. I don’t know if that was denial or hopefulness but either way, we were closer to the park than we were to home so we felt there was no going back. By the time we arrived at the park’s gate, we were in a the mist of a torrential downpour with no end is sight. The clouds were low, black and thick. We sat in the car, disappointed and wondering what to do next. I was particularly bummed because this was going to be a nice outing for me, a way to reset my spirit in preparation for another week of the tedious nature of life with my disease.
My husband got over the rain pretty quickly. He turned to me and said, “We are 30 miles for an outlet mall. Let’s go there and shop and then we can go out to eat.” He reminded me that we were together, we were out and about and that it didn’t really matter where we were so long as we made a conscious decision to enjoy ourselves. So there it was…lemonade. And, so easy to make out of a disappointing situation. I needed him to be the one to make the lemonade too because, I fully admit that the rain really bummed me out. I had high expectations for the day and I wasn’t going to be able to turn it around without some help in seeing things a different way.
This made me realize that sometimes, it is okay for someone else to help us see things more clearly. It is okay to feel letdown but it is better to let it go whenever we are able and to try to find the brighter side of unexpected disappointment. It was a good reminder that sometimes the only thing we have control over is our own attitude. Being chronically ill is hard and I am often faced with various disappointment…my body doesn’t work the way I want it to, I lose my train of thought, fatigue and pain cloud my judgement, I do stupid things, I forget words. This disease has changed me. My shine has been dulled. I am aware that I am irrevocably damaged in a way I wasn’t before I was diagnosed with sarcoidosis.
The irony is that because of this, I am by nature, a much more positive person now. Sarcoidosis knocked me down and cracked my ego but I got back up and dusted myself off. Sure, I am bruised and batter but I haven’t stopped trying to live my life despite the challenges thrown my way. I think this disease has generally taught me how to be a kinder, gentler, more understanding person. It has forced me to become much more patient with myself and now I find I am that way with others as well. I know that life is short and life is fragile and that life is a thing to be cherish and appreciated. I don’t take small joys for granted anymore. For all these things I am, in a strange way, grateful for this lemon called sarcoidosis. I have for the most part learned how to turn it into lemonade. Every once and awhile though, when my own reserves are low, I need the benefit of someone else’s wisdom to turn my disappointments into something sweet. Lemons or lemonade? The choice is ours to make.
During difficult times, I like to think about the power of the sun and how it gives us light and makes things grow. It almost seems like magic how it transforms death into new life by its constant presence every spring. It makes me realize how small I am and puts my troubles in perspective.
Whenever I feel down, I contemplate all the colors of nature and wonder of our animal kingdom. There are so many deep greens and vibrant plants and flowers and crazy creatures. I like to think about the sloth or the giant coconut crab or the red panda. Beings who are far more amazing than I could ever be. I then begin to realize little is worth my sorrow for the world is full of wonder.
Sometimes if I don’t know what to do, I look up at the night sky and take in the glory of a starry night and the madness of a full moon. It is then I realize how small I am. I know that whatever I do will have little consequence in the bigger picture. I need only follow my conscious and my heart to know what is right and good and just.
If ever there is a time I forget to be humble, I need only marvel at the grace of a penetratingly beautiful blue sky or the ramble of a winding and then raging river to know something far greater than me is at work in this world…bigger and much wiser than I could ever be.
I’ve said this before and generally it’s true, that I don’t like to make my blog political. I am however, having a very difficult time since our most recent mass shooting in Oregon. I’m having a hard time because this is becoming all too routine. Honestly, I can’t even keep track of them anymore and no matter your personal stance on gun control, you have to admit that it’s beyond ridiculous.
My stance on gun control is simple. Less guns..not more. Now, before all the gun lovers out there go crazy that I said that…just listen to me…please.
First of all, just because I’m not a fan of guns and just because I’d like to see less of them on our streets and in the wrong hands, does not automatically translate to…me wanting to repeal the second amendment. But, whenever anyone even attempts to broach the subject, they are immediately ambushed for wanting to change the constitution and then the entire conversation gets lost and there is absolutely no hope for a reasonable discussion.
I know some people’s answer to the gun violence question in this country is to add more guns and I want to be able to listen to their argument without judgement, but in truth, it’s difficult because I find this argument utterly absurd. When you are trying to put out a fire, you don’t throw gas on it, right? But, when I fail and I often do, to listen to this side of the issue, then I become the one who shuts down any possibility to discuss an issue that desperately needs to be discussed.
So, there it is…the vicious circle we find ourselves in…the black and white…the entrenchment. And we cannot begin to solve the problem of gun violence in this country if we cannot even have a reasonable debate, a meaningful conversation, some kind of compromise and meeting of the minds.
I don’t pretend to know the answer. I suspect that it is complex and that the best solution would be something that everyone finds just a little objectionable but until we get to the point where we can actually listen to each other, respect one another’s viewpoints and be reasonable…nothing…absolutely nothing will change and innocent unsuspecting people, just going about the business of their day, will continue to be murdered…continue to be slaughtered.
We can blame politics but when push comes to shove, we have to blame ourselves. Because we allow this. We elect and re-elect people who are unreasonable. We elect and re-elect people who hold fast to party lines and refuse to budge. We make them fearful because we tell them that they will lose their job if they try to compromise. We can blame politicians but we better take a long hard look at ourselves first because we are the ones putting them in office.
As a nation, we need to step back, let go of preconceived ideas and work together for the betterment and safety of one another and we need to do it now. We need to relearn the importance of the art of compromise and we need to elect a government, a body of people, who can carry out this art. It is the only way our country can move forward…no matter the issue.
I get asked this a lot, more than I think is reasonable, especially since I don’t ask people why they eat meat. So…here’s my final response to this question. Keep in mind these are MY reasons. I don’t expect others to eat this way. This is not a diet for me. It is a way of life.
- I am a vegan because I don’t want to eat animals.
- I am a vegan because I don’t like the taste of animals.
- I am a vegan because I prefer to eat a plant based diet.
- I am a vegan because I enjoy eating this way.
- I am a vegan because diary makes my sarcoidosis symptoms worse.
- I am a vegan because this diet helps minimize my sarcoidosis fatigue.
- I am a vegan because I no longer crave unhealthy food.
- I am a vegan because I don’t want to be obese.
- I am a vegan because I don’t want to develop diabetes.
- I am a vegan because I don’t want to have cardiovascular disease.
- I am a vegan because I want to reduce my cancer risk.
- I am a vegan because it is more environmentally friendly.
- I am a vegan because my body is not a graveyard.
What drives our desires? What pushes us to reach a little higher or dig a little deeper? These are interesting questions to me because as I look back on my life, my motivations change as I age and as my life circumstances change.
What drove me as a twenty something isn’t what drives me as a forty something. When I was younger, I thought I knew it all. Now that I am older, I understand that I don’t really know anything at all.
My youthful determination to prove myself has turned into self acceptance.
What motivates me now is different as my health has changed. My idea of what is important has changed and as these expectations have changed so too has my motivation.
I am still a driven person. I have great enthusiasm for life but I no longer feel ambitious. I no longer feel competitive. I am still determined but I am no longer hungry for success. I no longer need to achieve big goals to know myself.
Even though I know now that I don’t really know anything at all, there is one thing that is certain. Life is short. Life is precious.
I’ve already wasted too much time being motivated by the wrong things. No amount of money is going to make me happy. No amount of career success was ever going to be enough.
My biggest goal now is to live a quiet life surrounded by the love of my husband and my dogs in my beautiful home…one day at a time. This might seem simplistic to most people but I am happier now that I have ever been.
My motivation is to experience love.
My motivation is to a good wife.
My motivation is to know gratitude.
My motivation is to be free of regret.
My motivation is to be at peace.
A vast unending spectrum of color, lite up by the power of imagination, ingenuity, joy, faith, fear, love, happiness, war and peace.
A huge gaping bottomless crater void of understanding, full of invisible uncertainty, relentlessly lonely, impossibly vast.
A flicker of promise, a split second of hope, a flash of light, a snap of the fingers, illusive, swiftly flying by, no way to slow its ever charging speed.
A raging river current, flowing against a rocky shoreline, pushing and rushing forever forward in one direction.
A state of complete purity, without regret and free of remorse, like freshly fallen snow, unpolluted and glistening, white and glowing, beautiful against the hard cold ground.
A maze of meaningless direction going nowhere, going everywhere, searching, seeking, lurching, and hoping, changing all the time.
A dew soaked valley of haunting beauty, foggy with memories as day breaks and recollections fade, lost in the emptiness of time.
A gravelly dirt road filled with potholes, divots, hollows and pits, bumpy and uncomfortable, moving the journey along to its inevitable conclusion.
A downy soft meadow of fragrant flowers, peaceful and serene, restful and wondrous, full of the gifts and bounty of creation.
A paradox, a contradiction, incongruous, undetermined, vague, mysterious…
Fascinating, extraordinary, terrifying, striking, expansive, restricting, unknown…
Shifting, adjusting, sorrowful, marvelous…
One of a kind…
My life is small now, no longer the ever important administrator, reining supreme over my poor put upon employees, no longer toiling day into evening fretting over this corporate decision or that.
My life is small now, no longer energized by analyzing potential problems from every angle in a foolish attempt to stay ahead of the next crisis.
My life is small now, no longer interested in the bottomless pursuit of perfection, constantly striving to be better than my peers, ever eager to surpass my supervisor’s wit and wisdom.
My life is small now, no longer in need of approval for a job done exceedingly well at the expense of valued time with family and friends.
My life is small now, no longer obsessed with the mad pursuit of the next great opportunity, defining myself by what I do instead of being who I truly am.
My life is small now from a strange disease, rarely heard of by most and without a cure.
My life is small now because of a chronic condition that waxes and wanes and ebbs and flows like a constantly moving sometimes raging river current.
My life is small now, no longer having the stamina to pursue my once all consuming goals that I mistook for having great purpose.
I can be sad that my life is small now but I’m not.
I can dwell on what used to be but I don’t.
I can cry over lost plans but I won’t.
Instead, I celebrate my small life and I rejoice in the stillness for with the quiet comes insight and insight brings new perspective and new perspective brings peace and peace brings real, boundless and lasting joy.
My life took an unexpected turn.
It took an unscheduled stop.
My life is small now.
I love my small beautiful life.