If You Could Really See It
This is an actual picture of my current handicap placard. Looks in pretty bad shape, doesn’t it? I have had this one just a little over two and a half years, with a year and a half to go. I have my personal identifications blocked out, but the things that should stand out to you, are the number of cracks this placard has (there is actually another located above the white portion holding the card to my rear view mirror), and the amount of tape I have used to hold this thing together.
Being someone who loves music, I often try to to quote some sort of lyric to connect my posts, but all I can really come up with, is the nursery rhyme, Humpty Dumpty. Now that I think of it, this might actually work.
Humpty Dumpty sat on a wall.
I completed 8 cycles of chemotherapy and 30 treatments of radiation therapy for Hodgkin’s Lymphoma back in 1988-1990. Got to remission, and was living life.
Humpty Dumpty had a great fall.
I was only watched by my oncologist for a possible relapse for five years. At that point, I was considered “cured” or likely free of it coming back, and nothing to worry about. But unbeknownst to my doctors (I was not being followed up anymore), my body was developing late side effects related to both of my treatments. The first of many issues, was discovered in a big way, a “widow maker” heart blockage of one of the main arteries of my heart, appropriately called that, because normally, someone does not survive that condition. Imagine if you will, Humpty Dumpty not only scrambled from his fall, but cooked in the sun on the pavement below.
All the king’s horses and all the king’s men,
An emergency double bypass for that main artery to my heart, the left anterior descending artery, literally saved my life. Comparing my life to Humpty Dumpty’s life, that heart crisis was just one piece of broken “shell” that would be discovered over the years. I have had two additional heart surgeries, I have several other conditions with my heart, a pending lung cancer diagnosis, I have a pre-cancerous condition with my esophagus and my thyroid, my carotid artery has been repaired, and the list goes on and on and on, literally. Take another look at my handicap placard. Then look at my recent photo. Of course, the main difference, you can see the horrible condition of my placard, but not what I am dealing with in regard to my health.
My “shell” looks pretty good (as far as health goes), as good as when Humpty Dumpty when he was still sitting on the wall. So you can guess, when I have to use my handicap placard in certain parking situations, and it is really not often but not without reason, I get stares, glares, and often times some pretty rude comments. My reactions or responses depend on my mood, or physically, how I am feeling at that moment. And if I am not feeling well, I am likely to respond quite negatively. Though I realize my outer appearance, “my shell” does not show my handicaps and disabilities, those unable to mind their own business or those who feel or suffer vigilantitis will bear the full brunt of my frustrations. Sure, “how could they know?” Of course, but it is also none of their business.
I have nearly a dozen doctors involved with my survivorship care from the late effects of my treatments: cardiology, pulmonology, cardiovascular, endocrinology, gastroenterology, physiatry, and many more including a primary care and a coordinator of my late side effects. This “Humpty Dumpty” has quite a few King’s men. If I were to walk around with all of my health issues on the outside, where everyone could see them, I would resemble my handicap placard. And then, you would be able to accept what I deal with. But then you would have to accept the burden that only I carry, the feelings of “that sucks” or “I would hate to have to go through all that” or anything else that may interrupt the good life you may be able to enjoy. So, I give everyone a smile when they see me, if you will, the tape that holds my placard together, you just won’t see the cracks. That keeps you safe, untraumatized.
Couldn’t put Humpty together again.
My doctors cannot stop what is happening. They cannot reverse anything that is happening. But what my doctors are able to do, is deal with each issue as it is discovered and repair what they can. I am enjoying a lot longer than I expected I would when I was told I had Hodgkin’s Lymphoma, cancer, and definitely more time than Humpty got with his four line story.
“But Paul, why not just get a new placard since that one is in such bad shape?” you might be asking. And a reasonable question, a simple question. I wish it was that simple. But just as it is with my body, the best I can do is get a replacement, however it will still have the same expiration date, and inconvenient paperwork still needs to be filled out. I wish my health were as simple as just “replacing” things. Unfortunately, there are so many extra risks associated with any corrective actions than if they were done to normally healthy people. And sometimes those risks are too risky to take.
So yes, I try to take the compliments “you look great!” and such, but it is hard because inside, my body could not feel further from it. If we are spending time with each other, family or friend, I do all that I can to not show you, or let you know, I am not okay. It is not how I want to be remembered. But… next time you see someone taking a handicap parking spot, climbing down from a monster-truck, thinking “that person can’t possibly be handicapped,” first, you have no idea what is under that person’s shell and the most likely legitimate reason they are parking in that space, and second, it’s none of your business. I do not get any satisfaction out of letting anyone know that if and when I get confronted. But if you want to make it your business with me, I will unload everything on you that I carry so that you can know the mess that laid at the bottom of the wall where Humpty landed.
Paul's Heart 