WOW. Just wow. The things that I see people say in social media are stunning sometimes, and I really struggle some days to process the dissonance. Some of it is personally hurtful because of my own illness/disabilities. I’m not into letting it bring me down. It’s just eye-opening as to how big of a task we still have. I find the level of ignorance about disability and illness in society shocking.
I have in the last few weeks seen 2 stories about young ladies with a severe form of Porphyria. It is a rare disorder, so I’m not surprised there is less general knowledge about it out there. What I find disturbing however is the number of people that are willing to either crack jokes about catastrophic illnesses, or brush it off like it is not important to anyone else (“is this news-worthy?”, they ask). They even go so far as to remark that something is not life-threatening, without researching to find out whether it is or not – and for the record, both Porphyria and Lupus can lead to complications that ARE. Why should that be the defining characteristic though… for someone to care? Worse still are the people that have an actual COMPLAINT about the way the ADA is set up to protect the people that need it, or any suggestions on our part to modify it for better protections and provisions. It is already a travesty that we ever have to invoke the ADA laws to get provisions allowed in certain situations. The law is there as it is needed, but what a shame that it is needed SO MUCH! That does make my heart a little heavy at this moment. Enough to sigh deeply with the emotion. Where then do those with disabilities that are not legally defined as such fall? Those cannot even invoke the law… without which there is not only no compassion, but no provision or protection. This is sickening.
I have tried to address some things on video recently that I hadn’t previously. Not in-depth anyway. Tried and to my own standards, failed. It’s hard to talk about 2006 with a camera on me, and maybe more so than if I were face to face with a friend. I mention it, and share a few details, but I never just really fully reveal the intensity of what I went through. The reason I keep trying is because I know that I am not alone, and there are other people with intractable pain that are going through it or have in the past like myself. Some of them do not know that they are not alone. Isolation comes with the territory, especially for rheumatic autoimmune diseases. We hide from the sun. We hide from viruses and bacteria. We hide from criticizing people. We hide from the weather. We hide from distressing crowds. We end up hiding from damn near everything at some point or another. Then people want to joke about us being hermits or vampires… like our situation is funny. I’m not laughing.
In psychology there is the belief that people make jokes or laugh as an outlet for nervousness or discomfort. At this point, I think that is being used as an excuse for bad behavior. We as living, breathing humans are perfectly aware when our words, tone, actions, and body language are offensive or inappropriate, but we have raised 2 or 3 generations of citizens that no longer conduct themselves with any level of personal responsibility. Everything is about the entitlement to “free speech”, opinions, viewpoints, and individually crafted ideas about proper social conduct. The children that we watched mouthing off to their parents, saying “You can’t tell me what to do. I’ll do what I want!” is a problem that has now come home to roost. Now they are adults with less respect for any form of authority, and nearly zero regard for anyone that they see as somehow less than them for any reason. That includes the disabled, the challenged, and the catastrophically ill. It includes…. me. As a child, I can remember being the one that couldn’t keep up. I remember exclusion, whether because I was ill or in pain, or because I wasn’t strong or quick enough, or purely because there was something different about me. Even if seemingly imperceptible, I never fit in. The fact that I was unable to run and participate in games like the others only served to separate me more. I have gone from a misunderstood child to a misunderstood adult. It’s not like it is anything new for me. Thank goodness for the few close friends that have taken the time to really know me. Not fitting in with some of what I have seen is perfectly fine by me.
The time frame in my own life when I was barely functional enough to be on my feet, and times that I was unable to be at all… is a blip in my nearly 48 years. That year however seemed interminable. The things that we take for granted… the ability to walk, to see, to hear, to use our hands, and to be entirely self-sufficient.. can be so easily taken away. It is perfectly natural for someone that has started life with all of their faculties to expect them to remain in tact. For the most part, that was me, except that I have always had chronic pain. It never occurred to me to try to explain that to anyone because I didn’t know any differently. I was sick so much and for me, that was just how life was. Someone once said to me that they “couldn’t live like that”. I guess they wouldn’t want to, but I will continue to insist that is because the situation has never been a part of their life. You do not know what you are able to endure until it IS you, and we are far more adaptable to survival than what we even credit ourselves for in capabilities. That said, it brings me to a point. “How do you live like that?” I wasn’t aware I had a choice. Not as a child. As an adult, I became aware that I did have a choice, and it was a grim one. Most people that have been down to the bottom of the dark pit that I was in with intractable, nightmarish, continuous pain, have considered that out the same as I did before turning it all around finally. I have survived the loss of a cousin, a grandparent, and two friends that took that out. One of those happened in my home and I dealt with the bloody aftermath. It changes you. It’s entirely possible that those events are part of what stopped me from ever following through. I couldn’t inflict that aftermath on the people that I love. It is enough that I carry those memories myself. So how I live like this… or how things were in 2006… or in my childhood… is by taking my next breath. By choosing to take my next breath. By just deciding within myself that there is still a reason and I still have purpose, even when it is difficult. I choose to live.
I was crawling when I could not stand up. Even that was agonizing, every inch that I moved. The reason this is so impossible for me to speak about on camera is because of what it took for me to endure that year. My mattress was in my living room, where the TV and the air conditioner were… and the heater on the wall when it was Winter. My whole world was that small space for the most part.. just me, and the pills that kept me from screaming when I had to move (not saying they made me comfortable). Listening to the birds in my yard only made me sad that I couldn’t get to the window to see them. My kitchen had hard tile floors, and I couldn’t even crawl on those so I was at the mercy of having meals prepared and brought to me. I couldn’t retrieve my mail, because the mailbox was out at the front wall of the property. I had to wait till someone came home for everything I might need. Days seem endless when you can do nothing but stare at the ceiling, and it hurts to even take a breath.. hurts even when you don’t. I couldn’t drive, and even once I crept assisted to the car to be driven to Dr appointments, I had to lie down in the back seat, curled painfully around a pillow. Then it required a wheelchair to get me to and from the car. One fun trip to the ER we discovered I am allergic to Phenergan. When they injected me with it. Yeah. I got a few hours of sleep on my floor at home thanks to Dilaudid in that shot (after they got my BP stable again), and when I woke up the nightmare started right back up for me. I try not to dwell on the negative memories and events, but for my fellow autoimmune patients I think that it is sometimes important to hear that you’re not the only one that has been down that road. I truly believed after months of no relief, and losing more and more control over nerves and muscles, and the pain just increasing, that this was permanent. Fortunately for me, it wasn’t… but it took a long time, and a lot of hard work to recover. Let me say that I hope that I never have to do that again. The possibility is always there, but I hope I don’t. I am still fighting. I am still climbing out. Maybe I always be.
Apparently, I thrive in adversity. When the pressure is on, I hit warrior mode and heaven help anything that gets in my way. Any autoimmune patient will tell you that they go into reserve mode whenever they can. We call it saving our spoons (look up “The Spoon Theory” by Christine Miserandino, it’s posted on the LFA website). It’s how we keep enough energy to deal with fatigue and any other symptom. Lately, I have struggled to remain consistent with training and it finally occurred to me that I have programmed myself to idle in reserve mode when there isn’t a pressing need to “fight”. Once I felt a little better, my subconscious patterns kicked in and I slowed down. For the record, that is a mistake. I even got slack about a med that helps keep me functional. No pressure = no sense of urgency. Managing this type of illness correctly takes some serious mental discipline. I have it, but I shelved it for a bit. I lost my way. Frankly, I got tired.
Chronic illness can be BORING… seriously boring. Then every so often something terrifying happens, just to keep us on our toes. (Best description I ever read, paraphrased.) I let my guard down, I did. I can’t do that anymore. I set goals for myself, so it’s time to start fighting again. In my heart right now, I am intently grateful for friends, both new and old – the people that are there when I need a sounding board, or a reminder. Recently, I have had reminders about why I am on this path from friends that shared with me the improvements in their life and that something I said or posted made a difference. Then along came someone else to remind me about visualizing where I want to be, and about confronting fears in that way. The conversation was simple enough, but for me it was very grounding and I needed that right now. It came from someone that completely understands adversity and challenges, and that I admire for his tenacity to adapt. I speak often about adapting and have been impressed seeing his determination not to be limited or defined. (Having myself been told there were things I could never do again.) Remembering that one day that he first popped into a conversation thread and stood by me in what I was saying to someone, from our mutual understanding about the topic, will ALWAYS put a smile on my face. The number of people that will throw down with you when you’re trying to educate the world out there… it’s very slim. For someone that did not even know me, that’s rare.
Those various encouragements have taken a bit of weight off my shoulders. These things can turn the light back on in a person’s life. The world may not really see us yet, in spite of the calendar date.. when we should as a society be far more enlightened, but maybe the time when that changes is not terribly far off either. I keep expecting a time when we no longer have to explain ourselves, or invoke anything other than human compassion and intellect for needs to be met. We have to believe that it will come.