Earlier in the week, my husband and I watched the movie, “The Impossible,” about the 2004 tsunami in Indonesia. The story was based on the real experiences of the Belon-Alvarez family. It’s a harrowing hour and fifty-four minutes. During the film, I sat with my hands by my face, periodically covering my mouth in horror. It was the knowledge that such an event could happen and that, had various people not risked their own safety or well-being, many more people would have died. As it is, the death toll was over 150,000.
Why bring this up? Thankfully, very few people are forced into such extreme scenarios where life and death literally hang in the balance on a moment to moment basis. But many of us are forced into seemingly impossible situations constantly. I can only speak for myself, and this RSD warrior’s experience, but anyone with a chronic illness can tell you: we face the impossible daily.
Between treatments, medications, surgeries, legal issues – all of these decisions have serious implications. Finding the right doctors, physical therapists, lawyers… if you haven’t been put into the position of being a chronically ill person – or their caregiver – you cannot know.
Every time I opted for surgery, I had to sign papers acknowledging the possible consequences. Those included, but were not limited to, paralysis and death. But, backed into that much of a corner by extreme pain, I felt that there was no choice. I had to make that choice countless times over these 13 years. Some smaller procedures, some major surgeries. All involving my nervous system, my spine. THAT is terrifying.
That’s what pain does. It leads people down different roads of treatment. Some remain under a doctor’s care. But then there the darker paths some patients feel compelled to take. When doctors drop them, meds are cut off or decreased, treatments have failed. Well, people have died as a result. Families are left picking up the pieces. No one should be put in that position. But it happens more often than we realize. One death is too many.
In nursing school, and I’ve said this before, we learned that pain was exactly what/how bad/where/when a patient describes. We tried to keep people comfortable. Pain is insidious sometimes. Yes, there are the obvious examples. “I fell and hurt myself, now I’m in pain.” But then there are the “I was in a car accident ten years ago, the nerve pain is at the site of the injury. But it’s also down my arm and on the left side of my face” We deal with pain spreading far from the site of injury, IF you are able to pin it on a specific injury at all. My RSD started in my foot, as the result of a heel spur. The doctor treating me didn’t believe the amount of pain I said I had. Said there was no way, no reason, the pain would shoot up my leg. Guess what? It did. Two poorly placed IV’s later, I now also have it in both arms, my hands, the left side of my face. And, I believe, in my back. But there’s also the arachnoiditis, so who knows?
My point is, this is an extreme disease. There are choices we have to make, some folks have to carefully measure out their pills because they can’t get more. Sometimes they have to wait a few weeks, some won’t be able to get a new prescription at all. And so they suffer. Doctors around the country are dropping patients, or changing the dosages they’re prescribing, as a result of the ongoing opioid crisis in the country. Here’s the problem, WE are being thrown under the bus as a result. Legitimately diagnosed patients are being waylaid by a broken system. Tossed into a group suspected of abuse. I’m not a drug addict. I don’t abuse my prescriptions. But I have to sign paperwork each time I see my doctor attesting to that fact. And they can spot check my urine whenever they want, just to be really sure. Ok, that’s fine, if that’s what laws and regulations demand. But don’t dare make me feel like a criminal, like a “less than,” because of my diagnosis.
The impossible. RSD seemed impossible. When no one knows what the heck something is, but they’re sure you’ve got it? THAT seems impossible, a “no way” situation. But it isn’t. And so, over these years, I’ve taken my family on this impossible journey with me. Every choice I’ve made? They’ve made it with me. Consequences? Those belonged to them as well.
I’ve learned, the hard way, that nothing is impossible. It’s become a running joke for me, when the medical community describes possible side effects of whatever thing they’ve wanted me to do. They always said, “But that really doesn’t happen.” Or “it’s extremely unlikely,” and then that unlikely thing would happen.
I guess I’m an “extremely unlikely” kind of gal, belonging to an “extremely unlikely” group of warriors. Maybe that’s how I really became a warrior. I’d say it’s impossible, but we all know that it’s not.
Peace and painlessness,