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


Family Friends and Dumbasses: Part II

Family Friends and Dumbasses: Part II

Family and friends usually try not to hurt you and there are things that they will do or say now that will cut deeply but did not phase you before your life changed. There is a clear societal expectation that we all will become lesser versions of ourselves as we grow into the twilight years. It is almost expected and accepted; however, when a disease “suddenly” hits you in the prime of your life ( including any age thought to be “too young”) then society looks at the afflicted as if they deliberately changed the rules of play. People are dismayed and shocked showing ample degrees of pity and compassion at first until the realization of what ‘chronic’ really means. Most individuals will hang with you during the short-term but as time and the disease progress their resolve becomes shaky. Finally, you will find yourself with  one, maybe two people who “get” what you are going through and be willing to join you on your arduous journey; however, most will flee. They will flee either physically, emotionally, or spiritually from you as they feel they are being “dragged” down by your ailment.

Now, to be fair, some who develop a chronic aliment become impossible, hateful, and spiteful human beings. They choose to be miserable and make everyone around them miserable. If you know someone like that then I say run…run as fast as you can from them because more than their body is broken and if they are not seeking help to heal then they are condemning themselves and all those who love them to misery and heartache. However, I will discuss the monster disease-ridden personality in a subsequent post, for it is lengthy.

We humans must find an answer, a reason, a solution for the problem we are facing. We have great difficulty accepting that there is nothing we can do or accepting the limitation of what can be done. We want more, we want healing, we want an explanation! The scientific/medical community can give us a plethora of data detailing every facet of the disease that is trying to destroy us. But no one can answer the question that burns deeply within our core, “Why me?”.  If you have a belief in a creator then you begin lamenting toward God, blaming, questioning, accusing, even hating. Your faith will be shaken daily and may break in the wake of a nasty flare or when you are sitting alone trying to figure out how you are going to make it. As if you were not struggling enough with your faith and self-worth, others in your faith community begin to question the cause of your circumstances.

If you are a Christian, as I am, you are familiar with the story of Job. Job was a man afflicted by Satan, robbed of everything God had given him including his health. Job was desperately miserable and struggled greatly with his relationship with God. Three of Job’s “friends” came regularly to see him. First they tried to encourage him but as Job’s problems worsened and continued their own faith became threatened. Because of their own fear, they began to berate Job accusing him of not having enough faith or of possessing some un-repented sin in his life. You see, what was happening to Job made them fear that such turmoil could happen to anyone, unless, Job was to blame for his own misery. In the end, God ended up punishing Job’s “friends” and restoring Job ten times better than was his lot the first time.  The story of Job offers great solace to me because it has helped me to understand why people attack me because my illness or my life, for that matter, fails to get better. FEAR…it is a cruel master and uses it’s minions to spread misery, disdain, and mistrust. This group of people can do more damage to your emotional, psychological, and spiritual health than most others. If you encounter a stranger who is ignorant, it stings, but you move on. However, if someone who calls him or herself a Christian and then allows the fear to make them use scripture to make you feel poorly about yourself or your ailment then the wound left behind remains a gaping hole, raw and seeping. You are struggling already and now others are suppressing your spirit with the error-filled idea that sin or lack of faith is keeping you ill. It is too difficult to comprehend that sometimes the answer to our prayers is , “No”.

My mother was terribly and chronically ill for most of her adult life and I was her caretaker. I, with my ailments, and she with hers made quite a pair. She was a very strong woman of faith but that fact did not deter the  “well-meaning” believers to take it upon themselves to show her the error of her ways so that she may be healed. I prayed diligently for healing for both my mother and myself for over 35 years until I woke up one morning realizing that I had succumbed to the majority mentality. If God had wanted to heal my mother or myself then he would have done so; instead, the diseases progressed. I finally understood that I should have been praying for strength, endurance, and wisdom through the pain and disability because my suffering had/has a purpose. Would I get off this fast moving train if given the option? Hell yeah! However, I have learned that after a lifetime of struggling with my faith and relationships, some will never be able to “get it”, others will rationalize it away, some will blame me for my ailments and poverty, and still others will be vicious and openly cruel. The motivator to each reaction: Fear. After all, if something like this can happen to me or you for no apparent reason, then it could happen to anyone. Faith is not a guarantee of safety; instead, it is a call to arms. God will call upon you to play your part. Disabled people of faith know or learn this fact far sooner than the average Joe. We know we are not ill due to a lack of faith. We are called to challenge the ignorance of  humanity because we know that God did not afflict us but he will utilize our affliction for greater good IF we allow it. I say none of this lightly as it took me a very long time to come to these conclusions and the journey nearly claimed me time and again. There are so many hurdles within our own beings with which to contend but we must also navigate the negativity of family, friends, and dumbasses.

Regardless of whether you use your ailment to help others or wallow in self-pity it  will not change the fact that there will ALWAYS be someone, somewhere wanting to tear you down. You will be able to handle more pain and misery in one day than some do in a lifetime, you will be the unsung hero because you will conquer the effects of your ailment and the impact they have upon your life, your mission, your purpose. You will not win every battle, and many will stand against you.  There will be casualties along the way but you are not alone on your journey. There are many of us standing against the darkness and moving forward…together. The war has already been won, we only need catch up to  the victory party.

So, do not let people tear you down. Do not heed their criticisms. Do not take their hatred and ignorance into yourself. It is theirs, let them keep it because it will do you no good. If friends or family give up, then it is on them. You cannot accept their defeat as your own. You cannot accept their lack of faith and decision to be ruled by fear as your own. You know better…your life, your suffering, your heartache has a PURPOSE and they will NEVER get that. How could they? Pity is all we should offer to them, for the road to understanding is hell on Earth.