There is no substitute for experience although the exuberance of youth can overcome many obstacles. If you’re anything like me, it is amazing of how much we learn well after we had our initial exposure or instruction. So many things observed during childhood and my teen years finally make sense, and I can apply those lessons learned to numerous situations encountered today. Jokingly, I’ll tell someone of the timeless Livingston Parish maintenance lesson of put together equals duct tape and pull apart calls for WD-40. Honestly, though, I wonder why years ago it seemed so easy to recognize things but not realize what was there from lack of knowledge and today why it is so easy to overlook things when we supposedly have the knowledge.
National Invisible Chronic Illness Awareness Week is later this month. I’m not knowledgeable about the various organizations and many of the specific conditions which can fall under the umbrellas of invisible and chronic. This link will provide those interested with information as to the specifics. This link from the same site will provide some statistics along with citations for the sources.
I have an invisible illness which struck me severely in 2007 and left me bedridden for practically all of 2009. It wasn’t until 2010 that I actually began an effective treatment plan after making my way to Johns Hopkins and learned that unbeknownst to me, this condition had an impact on my life probably since grade school. Physicians back in 2007 and 2008 misdiagnosed me initially. As I continued to decline, a few physicians asserted that my symptoms as I described were not possible and various tests revealed nothing to them. Therefore, they concluded that I suffered not from a physical condition but from a condition created within my own mind. One even made it clear that he did not think my condition was even psychological, but that I was faking. For someone with specific expertise with many of these tests and results, however, the data for a diagnosis and treatment plan was there in 2007. As bad as I felt at Johns Hopkins, the professor side of me still recalls the statements made to the various resident students of my MD/PhD physicians there about keys to not misinterpreting the test results as the earlier MDs had.
It’s a side note, but I still wonder why I would have been faking in 2007 and 2008 as that MD claimed. I continued to teach and perform my administrative duties, and I never received nor even sought any disability. I had accrued enough sick leave time to continue receiving full pay for practically an entire academic year if I had not previously chosen to resign and move to another state. Even though my performance at that time was not at my usual level, it was as good as, if not better than many of my peers. That may be boasting on my part, but it is not meant as a knock on my peers and former colleagues at the institution. It’s a statement on the environment created by a select few at the institution at the time.
An MD calling you a liar and still submitting bills to medical insurance for reimbursement for “treatment rendered,” friends and colleagues who only know that I “don’t look sick,” but I just don’t seem to be me are events which one cannot describe because even if you have experienced it, it is different for everyone. Even those individuals who stuck by my side can only describe the past as surreal.
It’s like standing in the middle of a room that is completely dark, without sound, and without motion. Is something really present as your senses feel, or is it only a substance within your own mind? That’s any chronic or invisible illness. From the outside looking in, you see nothing and thus reach that natural conclusion that nothing must be the reality. Even when you are the one in the room, you can’t really explain or see, but you know that something is there influencing you. That’s a reality for you. It’s not a false perception, make-believe, or fantasy. It’s real, and if only a light would pierce its way through the darkness it would illuminate what is there for all to see whether inside or outside.
I think of my high school graduating class. One friend suffered an injury which helped accelerate a condition where he must use a cane in order to walk with persistent pain. He looks the same as he did junior high through high school. He’s still appears physically fit. If you see him sitting down, you might envision that he still has the same quickness he had in school. The cane, however, reveals a different story. Still, even though the cane alerts your mind that he is dealing with some physical ailment it is impossible to understand the physical pain that he tries to describe or the emotional pain that you know he feels.
Another friend underwent a supposedly routine surgery a few years back, and complications from that simple procedure have led to dozens of surgeries, months of hospitalization on different occasions, and several times straddling the line between life and death. I think at one point she lost about a third of her body weight, and it’s hard to envision her living at times only through a feeding tube. From photographs, she appeared the same to me in high school with the primary difference being that her hair is longer and straighter today. It took hearing the story and then researching the various medical jargon to give me a clue as to what she has undergone. In person, I’m sure that the weight loss would have garnered my recognition, but still I cannot fathom everything through which she has gone.
Cancer, diabetes, and the additional ailments they bring along with the residual effects of treatments have struck other classmates, their spouses, and children. Heart attacks and strokes have found a few. There are other conditions and diseases which I cannot spell or pronounce and others which I can.
My graduating class is no different than others from that year in Livingston Parish. On the outside the guys like me are just a lot uglier. A few like me have the distinguished gray hairs, but a few have lost even the few hairs they had back in school. Some have shed pounds, a few have put some on, and many are within their high school weight range. The girls do seem prettier today than back in school. It would be nice, however, if some still wore the same hair styles as they had back in high school. I only say that because they did seem taller back in high school and having that spare can of hair spray at all times can come in handy if you need to quiet a mosquito uprising to escape. Smart phones in the purse just don’t have that sticking power of the quadruple super supreme extra firm hold spray of the past must have accessories.
Illness and injury are tough even when everything is visible and painfully obvious. Just because we can’t see the pain or limitations faced by another does not mean those extra variables do not exist. Whether known or not, there are aspects which we may not be aware. A scar might be visible, but the nerve severed below is not. A simple task that we or they took for granted now becomes an intense and exhausting ordeal. Even when the physical limitations are gone, the mental and emotional drain cannot be underestimated. Yes, we all face obstacles, but one that is easy for me to overcome may not be for you and vice versa. To understand is actually more complex than just trying to walk in another’s shoes.
For those facing your own battles with a chronic, invisible, or visible illness, stay positive and take pride in accomplishing any goal no matter how small it may seem. At times, just waking up and preparing for and maybe enduring what will take place during the day is an accomplishment so great that we cannot comprehend. You will hurt. You will feel down. Still, that does not mean that nothing exists which will make you feel pleasure and will bring enthusiasm. It’s a roller coaster with its ups, downs, twists, and turns. Even if you did not choose to ride, if you are already strapped in that roller coaster may take you from point A to point B.
For those who are caregivers or just care about others who fighting their battles, your path is not easy either. Your position can actually be one of the most taxing because even though you do not experience the feelings firsthand, the residuals that you take on are concentrated. That’s another hurt and drain physically and emotionally. Never underestimate or belittle the roles that you play in these battles.
The website linked above provides some specific examples and concrete suggestions. You can search out numerous sources of information about specific conditions and some of the physical and emotional toils which others have experienced.
My goal here was just to show that regardless of how you feel, you are certainly not alone. Your feelings are unique and special because they are yours, but they share an importance with not just you but others who you know and have never met. It’s difficult and while certainly not impossible, impractical to try and explain. Just like standing in a dark room, the realities and perceptions differ even if attempting to stand in the shoes of another. Still, that flash or flicker of light offering just a glimpse of what is or is not there has an infinite amount of sources from which it can emerge.