F.L.A.R.E (Finding Life lessons Amidst Repugnant Experiences)


If you endure or love someone who suffers from one of the chronic and largely invisible diseases which attack the body, then you will be familiar with the concept of a flare. Working on the premise that some may be unaware of this term and the details assigned to it I will attempt to shed some light on the topic. With many chronic destructive diseases there exists a pattern of destruction, which the disease is likely to follow. Many exceptions and variations could apply to the specifics of the disease and to the individual living with the ailment. However, I am offering a general explanation that could be applied across the board noting that there will be exceptions to some of the conclusions offered here.

A chronic disease can be compared to a long expansive road devoid of a recognizable termination point. The person in possession of the disease walks upon this road throughout his life not looking to the right or left but intently concentrating on the vague horizon hoping to define the end point. Each step moves him ever forward upon his journey hoping and praying that his efforts will bring him to the fulfillment of his purpose and a day where pain is not recognized. Each carries with him a pack representing the level of pain, dysfunction, loneliness, happiness, contentment, and joy that he has accepted as his normal level of functioning. When he had first received the news of his disease he had great difficulty finding, adjusting, and then accepting his new norm. Interestingly, those born with a disease develop stronger coping mechanisms because they quickly learn that their norm is in a constant state of flux and that if they want to be functional then they must overcome and adapt to the progression of the disease.  These folks also understand that there is purpose to their suffering and are more likely to find hope and acceptance. He who has been diagnosed later in life struggles mightily against acceptance and adjustment because he has tasted what the world considers a “normal” functioning life. These folks go through an intense mourning period while their lives are systematically dismantled requiring them to initiate reconstruction within the new parameters. This takes enormous effort and fortitude, which cannot be achieved in a brief time frame. Essentially, the “later-in- life” folks are starting their lives over again with much uncertainty and that fills them with great fear.  Those who have never inhaled the air of a normal life adjust and adapt more readily when challenges, such as flares, rear their ugly heads.   Yet, that is not to say that either group suffers more than the other, they just suffer differently.

One of the most disconcerting characteristics of a chronic disease is its persistent progressive element. The very nature of a disease being progressive indicates two sure things, 1. The disease is going to change and, 2. The change will not be for the better. This point of change is usually kicked off by a FLARE, which encompasses an overactive stimulation of the disease. A flare pushes the individual beyond the norm to a point of distress. The elements of the disease are in overdrive and there is little to be done except for the individual to hold on and wait for the frantic ride to end. The type of ailment, the individual, and the trigger of the flare will give designation to its length and destructive force. During this time of flare, the individual is at the mercy of the disease with little or no recourse. A flare pushes the person so far beyond the norm with which they had reconciled themselves to endure that the battle plan holding the disease at bay, fails. All previous treatments, coping mechanisms, and resolve are useless in the face of a flare. A flare can last hours, days, weeks, or even months lacking both rhyme and reason.  Flares put the person in crisis because their entire perspective must be altered in order to survive. When the flare comes to an end, the disease has taken residence upon a higher plateau requiring the individual to accept or reject the new norm of functionality, pain, and overall dysfunction. The road to which they had become familiar and had accepted as the norm no longer exists. The path is now shrouded by a thick fog of uncertainty and includes more inclines, pitfalls, crumbled sections, and toll booths making the journey ever more arduous and seemingly impossible. Additionally, there are several more critics and “well-meaning friends or family” crowding the shoulders of the road eager to offer advice, criticism, or farewells. Yes, because it is difficult to bear witness to the suffering of those we love, some former supporters will choose to walk away reinforcing the solitude and loneliness that accompanies such a journey.

As with all events upon one’s life journey, there exists both positive and negative elements. The negative characteristics and outcomes of a flare are obvious; however, positives do exist and can be identified if the individual is ready to see them. It is these positives that will enable the person to continue their journey. Through a  readjustment of their parameters and assumptions they can form a new norm. Just as some friends and family choose to flee, others will dig in deeper and help you prepare for the coming storms. Some will not only stay by your side but also lend you their strength. In the face crisis, some will leave while others will become your champion. Just knowing they are there offering support and prayers can be the difference between success and ruin. Crisis reveals the very worst and the very best of you and all others who share your journey. It is during these times where wisdom or ignorance can be earned and spread. Of course, during the flare the only thing on your mind is survival but it is in the aftermath where growth can happen, if you are open to it.

Finding Life lessons Amidst Repugnant Experiences becomes critically necessary if you are to move forward. A person with a chronic progressive disease walks a razors edge using their precious energy to cope with the day to day aspects of the disease. The onset, duration, and level of ferocity of the flare have the potential to jettison him or her from their precarious perch of functionality. The available choices are few, yet offer us the foundation of who we really are and the person we want to be. You can give up or become ever more resolved. You can become the embodiment of rage and bitterness or gird yourself in faith and perseverance. You can wallow in self-pity or find the purpose in your pain.  You can listen to the critics or find the truths within yourself.  Or, you can accept the world’s view of you and become disabled. Otherwise, you can work hard to define yourself on your own terms.

After arriving on the other side of a massive flare, you are likely to be floundering for purchase and the best way to gain it is to begin identifying the positives that followed you through the black hole of suffering. There are a multitude of positives but identifying them can prove to be a herculean task. Everything we see, hear, or feel is filtered through the lens of pain and suffering. Additionally, our psyches will be vulnerable to the concept of injustice within our own lives and throughout creation giving opportunity for resentment and discontent to take root. If allowed, these concepts will fester to the point of rot injecting us with acrid bitterness.  If you allow this to occur then your loneliness and self-loathing will become unbearable creating a toxic environment in which happiness and joy cannot exist. This is a very dark environment in which you do not want to dwell lest it consume you. What should you do then? How can this experience be survived with more positive outcomes than negative?

First, identify any new problems resultant from the flare then concentrate on creating a strategy that can be used to combat the new quirks and demands of the disease. Next, formulate a mental tally of everything that you can still do and make any necessary adjustments that will aid you in the pursuit of that which you have set as your life goal. Thank God that the flare was not as bad as it could have been because a flare can ALWAYS be worse. Unfortunately, something is always stolen from you after a flare. The disease can steal a portion of your energy necessitating a recalibration of the things you can accomplish during a given day.    It is also wise to perform a self-inventory of physical, mental, emotional, and spiritual changes that possess the potential to complicate or aid your journey. A plausible game plan must be formulated and implemented. A deeper appreciation of the costly expense of time and the limits lying therein must be considered and reconciled. Most importantly, appreciate those in your life who cherish you and let go of the ones who need to leave without allowing resentment or dependence to claim a foothold. These examples of give and take, loss and gain, pain and perseverance barely scratch the surface of the complex amalgamation that is chronic suffering.

In the throes of a full-blown flare there is nothing you can do but hold on with every fiber in your being until it subsides. Yet, it is your choices and actions in the aftermath that will define who you are and who you will become. Anyone can be angry, hateful, and bitter but it takes a hero to choose to become more.

Tina Blackledge, MS

4-30-2013

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