|Humorous headstone in Key West Cemetery--credit to Trip Advisor*|
I wrote to a friend that it had to be a manifestation of God's sic humor, that after years of working to kill off Lyme's superbugs, I feared I would succumb to a mere "killer cold". He enjoyed my sic humor and got the message that it would be an insult to my warrior-like spirit and suggested that I practice writing my own trial obituaries to be sure that what I most treasured about myself, not be lost when I die of something simple and ordinary! He then gave me a example of the fun irony awaiting such writings and wrote, "weakened by decades of fighting Lyme disease, Jane slipped on the ice and cracked her head open" and then added, "I hope you don't mind my macabre humor."
I didn't mind his humor at all, and it made me laugh! I am clearly not as ready to die as I had thought, for as yet my obituary is not written! But I appreciated that when I have worked so hard to fight the good fight, it will take a special obituary to sum up my heroic defiance in the face of Chronic Lyme Disease! Sadly my whole persona has been caught up in my battle with this illness! Perhaps I should hire him to write it? It would at least put a smile on everyone's face to read it and that by itself would be a positive and fun message to leave with my friends and family when I go?!
Years ago, I wrote and delivered my dad's eulogy and am now questioning if I dwarfed his life in the words that I wrote about him, though his final illness was short when compared to his moderately long and productive life so my eulogy of him wasn't all about his fight against his final illness! Nonetheless, how important final words about a person can be!
I just wrote to a friend about my younger brother who died when he was thirty-three from pneumonia, I realized as I wrote that, I just stripped him of the glory of his battle against an atypical and severe MS that had also become the hallmark of his life's journey. He bravely died with bed sores to his bones, and no one could ignore that his character had been formed by his sweet and non-complaining spirit as he took whatever time was left him in his short life! Naming the cause of his death as pneumonia didn't capture his courage and fortitude and I then added detail to what I wrote. and proclaimed his good and courageous attitude and heart as he faced eight years of being tormented by a horrible disease that never let up! Context is everything!
In a six year correspondence with another who has a severe and chronic illness like my own, we often laugh about what isn't funny in our lives and recently we have talked about the irony that we are never seen as the heroines by our family members or friends who are sick of sharing the daily ups and downs of our illnesses. It is those surrounding us that instead get the sort of credit we think we deserve as they put up with us with patience and fortitude!
Many who live with invisible illnesses face this irony! We muster the faith, only to look like the fragile and mortal beings that we are...and our faith, courage and humor are often over-looked despite the fact that we often face diseases that suck the very needed energy to deal with each single day. Some think that the answer would be to find a Dr. Kevorkian to hasten our dying, put us out of our misery and give a welcome relief to our care-takers, but no, we "bravely" carry on instead, though some like me, whine as well! We preciously cling to every bit of life that is remaining in us, no matter the effort it may take to get dressed on some days! We can be teased and even abused by friends that dare to tell us that "we just aren't fun anymore!" There is more irony still that when we are moms or nurses, or in some other caring position, we are not even seen as sick, and are expected to perform the roles we always did, no matter how we feel!
The friend who advised that I practice writing sample obituaries, wrote, "we certainly want to credit your Lyme with your future death, regardless of the exact cause" and added that T.S. Eliot once said that "our world will end, not with a bang, but with a wimper"! He understood the insult of our life ending without drama and fanfare after defiantly giving the middle finger to an horrific life-robbing disease for so many years! I have beat the odds, at least so far!
Sic humor is truly the strength of those of us who beat back The Grim Reaper, no matter that he does get us all in the end! In the middle of my cold, I watched The Walking Dead series, and laughed about how my breathing sounded like their's and that I didn't look too different either! I put myself into all those scenes of giving "the walking dead" their final release by stabbing them through their eye sockets!!
Mind you, no one with a serious illness is out looking for sympathy, but kindness is always welcome and, I add, that respect for the battle we fight is most appreciated. Some are granted good health, no matter what, while others of us may do all the right things with all the wrong results!! As the photograph of the tombstone of the man who at least made his final point that "he really was sick" suggests, even being believed and affirmed is kind!
Restraining from giving obvious advice that diminishes our own intelligence is also kind. We are sick but not stupid! We have tried a zillion times to get well and it is clear that those that offer such simple advice are clueless as to how complicated a difficult disease can be! I can't tell you how many times, "dieting and exercise" have been recommended...Duh!! Even doctors make inane recommendations, and if they don't understand, who will? Fortunately research is showing at last that exercise begets exhaustion versus creating energy for those that are ill! Fatigue surrounding our illnesses means that our bodies are NOT functioning normally! Duh again!
The irony of asking to take care of another when you aren't well is also unkind, or asking that you donate money when you bluntly, but honestly tell the solicitor that you are disabled, on a limited pension, and unable to afford the out-of-pocket expenses that our chronic conditions necessitate! They are clueless and heartless as they persist to squeeze out our last dollar by decreasing their request by five or ten dollars and continue to to push! Sadly, I often have apocalyptic thoughts for unkind or unsympathetic "friends, family and such solicitors" that if I only had a wand such that I could grant them perhaps a month or two of living with an incurable disease to wake their hearts of stone, though they would likely reap the get well cards, flowers, balloons and boxes of chocolate that don't come to chronic malingerers anymore, if ever?
I do plan to register my complaints to God if I get to heaven, though likely he has heard such complaints before. Holy Scriptures tell us God's answer might be like his response to Job, "I am God and you aren't!!"...and then I wonder if He sometimes laughs, after all, He is most likely the King of Sic Humor?
I have heard that Christ actually had a very good sense of humor, and so I hope he will appreciate my own, though I truly want to believe that His response is to come running, administer hugs, share my tears, apply balm and healing miracles, or at least come with genuine sympathy and kindness and then perhaps tell a really good joke to at least make me laugh! Scripture also says that some are healed and some are not. I imagine myself to be the one that He commands to get up and walk, and instead of doing so, simply lies there wondering about his sanity? It really isn't for us to make the decisions as to whether we get well or not, despite our positive attitudes, but merely do the best that we can do with what we have.
Meanwhile for those supporting others with chronic illnesses, I do hope that you will listen and acknowledge their health issues, whether they suffer in silence or are more loud about it, like myself! Appreciate that while you may dread being around those that suffer and are tired of the "same old thing", that we are tired of it as well. Invisible illnesses are very real and may in fact be more debilitating and life threatening than visible ones.
Mockery and unkindnesses are very cruel, along with offering superficial and false reassurances that negate our experiences. Spare us simple advice. We have already tried everything we know and picked the brains of those most knowledgeable already! Recommended treatments are too often ineffective and can even exhaust and worsen our conditions. There are no easy solutions or we would be well already! And if you have good health express gratitude for it, as it is truly a gift that is not equally given to everyone!
For those of you who suffer with invisible or visible chronic illnesses and must depend on others, know that there are many who share your journey and that no matter who around you "doesn't get it", many of us understand completely!...We see the courage and bravery within, the silent heroes and heroines inside those that courageously take each day! Hang in there as I believe that we have a great deal to teach those that take their health for granted! Keep your faith and persevere and never forget to nurture and keep your humor too, no matter how sic it might be! Humor keeps our perspective and is indeed a valuable treasure!