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I don’t spend a lot of time wallowing in “what ifs”, nor do I allow fear to creep into my daily thinking but every once and awhile with this lousy disease something happens to me or to someone I know with this disease and I get really mad. I got mad today. Someone I know has been blinded by this disease, literally. Yes, sarcoidosis can cause blindness if it’s in your eyes. It can permanently damage any organ it touches and it leaves lasting consequences as a result of that damage too difficult to contemplate, too overwhelming to fathom, too outrageous to be believed. So from time to time, I don’t know what else to do besides get angry.

When I find out these things are happening to people I know, when I learn that someone has been blinded or is on the organ transplant list for lungs or, when some other horrific nightmare befalls the people I have come to care about with this disease, the reality of how monstrous it is hits hard. The reality of how little is actually known, researched or done to eradicate this disease infuriates me. The suffering, the sorrow, the confusion, the uncertainty, the loss that sarcoidosis reeks on the lives of those chronically affected by it can only be compared to what it must be like to fall out of an airplane with no parachute. There is no preparing for the disaster that is life with sarcoidosis.

By nature I am a positive person, perhaps in some odd way even more so now because this disaster is part of my life now too. It has taught me the true value of my time, how limited it is and what is most important. I cannot dwell on stupid arguments, when one day I know I might be lost to a complication from this dreadful disease. My reality now dictates that I be focused on the present, entirely engaged in living and, that I no longer be distracted by pettiness. I know how to get up when I fall with a smile on my face better than most people, thanks to living with a chronic condition. Once and awhile though, this disease angers me and this type of anger is not petty. It’s important. It is necessary. It is the fuel I sometimes need to keep fighting. People’s lives have been devastated, detoured and in some cases destroyed by this disease.

When you live with a disease like sarcoidosis, it is like living life on the edge of a cliff, every step you take could be the rock that falls, plunging you into utter darkness, no one to rescue you. It’s a precarious disease. Once you are diagnosed with it, there is no safety net, there is no way to know how hard it will strike or what it will take down as it blows like a hurricane through your body, leaving unrepairable wreckage in its wake. Sure, you can rebuild, but you’ll never be the same. This disease makes me angry sometimes and while I strive to be positive, I have also learned that we all need an anger allowance, a time to say…enough is enough, we’ve had it, we don’t want do do this anymore, we are sick of what has been taken from us. So, right now I am using my anger allowance. I am letting it out, releasing the valve so the pressure does not blow me up. The anger I feel now, is not just mine, it is for our entire chronic community, all those who suffer with sarcoidosis because we know how cruel life can be.

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