Invisible disabilites, or "Walk a mile in my body"

     I have a disability placard, two canes, and a walker.  I have a pain doctor I see every couple of months, at least six prescriptions involving pain (four of which are opioid-related), three supplements specifically dealing with pain, a medical marijuana card, a TENS unit, heat packs, multiple braces, CBD topicals and edibles, physical therapy treatments, and several otc medications I use as well.

    Yet, most people have no idea how much pain I am in on a daily basis.  I only use the disabled placard when I feel my level of disability on any particular day necessitates its use if I want to get everything done that day.  Even on the days I use the placard, it is unlikely you will see me using my cane or walker even though I may badly need them.  I look like an able-bodied person to most people.

    Why on earth won't I use my mobility aids if I need them?  It seems counter-productive. doesn't it?  However, when I use a cane or a walker, I am putting weight and stress on my wrists, elbows, shoulders, arms, and neck.  I had double cervical disc replacement surgery two years ago and I have carpal tunnel in both wrists.  While the surgery means I still have the use of my arms, it also means that certain types of stress and pressure to my arms or wrists cause me pain.  To use my mobility devices to prevent pain, I have to cause myself pain.

    My physical therapists have warned me about using my braces too often or for too long.  On one hand, they will lessen the muscle strength I need to keep my joints stable to counteract the damage my hypermobility syndrome causes.  On the other, they will reduce flexibility and motion in my hands, but they do help with pain and stability if used as prescribed.  

    The other thing the physical therapists have pounded into my head is NEVER limp. Ever.  Limping causes so many long term problems, so even when the pain is bad, my goal is to not limp because while it might help ease the pain now, I will absolutely pay for it later.  Even when my pain numbers are well above 5, I still try to do my physical therapy exercises every day through the pain because if I don't I won't be able to do anything very quickly.

    All of the pain medications come with side effects.  ALL of them have noticeable side effects that impact my daily life functions.  I have prescriptions to deal with the side effects of some of my pain meds.  Most of them impact my ability to drive safely which makes dosing medications dictated by my (and the children's) day's schedule more than by my pain levels.  

    What it comes down to is that on any given day at any given point you are seeing me at between a 2 and 7 on the pain scale.  I am never not in pain.  I am rarely not in pain that actively affects me even if I am on multiple medications for it.  The pain makes me tired.  I am also never not tired.

    The thing is, I am just one person whose story you haven't personally experienced, simply one person who, from a glance, seems able-bodied and healthy.  Any person you meet could be me.  Any person you meet could have dramatic, life-affecting situations they are dealing with while smiling at you and chatting about the weather.  Be kind.

Why Saying "Not All X" Makes the Problem Worse

For people who wonder why saying "X isn't all bad" (ie. "Not all Cops" or "Not all Men") is an issue, maybe this will help.

Let's say you live in a neighborhood and there is a fire. Several houses are on fire, but not all of them. The firefighters come and start spraying down all the houses, on fire or not. Some people whose houses are not on fire are very adamant about getting an equal spray down for their houses, even as the ones on fire aren’t getting enough water to slow the infernos. This seems silly, right?

The houses that need the water are ON FIRE, the others aren't benefiting from it and might actually be being harmed (water damage). In addition since the firefighters are not all focusing on the houses on fire, the fire could grow and spread and take out the entire neighborhood. Obviously the people whose houses are actively burning down are going to be upset in this situation. After all, it's their houses burning down, but it isn't just an issue just for the houses that are on fire either though. No matter how you look at it the entire neighborhood is at risk if the fires in those particular houses that are actually on fire aren't put out quickly, efficiently, and permanently.

Basically by saying "X isn't all bad" you are being the firefighter shooting water at a house that isn't on fire or, if you are being completely insensitive, one of the short-sighted and selfish home owners who insists on their house being sprayed even though it isn’t on fire. You are turning the focus away from the very obvious issue (houses are on fire). In addition you are actively harming the X's that aren't doing the bad things by making it seem like the innocent X's are against addressing the issue and dealing with the non-innocent X's obvious problems. Yes, not all "X’s" are generally never ALL bad, although exceptions to rules always exist. Generalizations are generalizations after all. However when specific houses are on fire it really doesn't matter that others aren't, you know? Everything could end up burning down if you don't actively work together to solve the problem while it is still manageable.

Masks and Manliness

I've been thinking about "manliness" and the whole "hold my beer!" mindset. I see fewer men than women wearing masks properly (or at all) in public. I've seen enough commentary to know that some guys think (in a very paraphrased for public consumption way) that wearing masks isn't "manly." This hurt my brain for a bit.

I think I get it now though. I think it's part of how toxic masculinity is affecting our men. They've been taught that to be "manly" you cannot show fear even in the face of terrifying things. You need to be able to work an 80 hr work week, pay all the bills, gun down all the baddies, chug a 12 pack, burp the alphabet backwards and then face down a charging lion, assured by your own male superiority that you WILL WIN! NO FEAR!!!


If you were raised steeped in this toxic stew of fear, even healthy respectful fear, equating to weakness then it makes sense to not wear a mask. It makes sense to want to reopen before safety measures are in place. You are the bread winner. You are the protector. You HAVE to be safe and prevail because any other option means you are weak and you can't be a guy and be weak...

It's so sad how much damage our culture has done to our men.

Sitting with Fear: Covid-19

Fear.

Fear is a thing most people rarely have to sit with.

Fear is a thing people avoid. They run from it. They close their eyes and pray it will go away.

Sometimes fear doesn't go away. Sometimes it is there to stay and nothing you do or say will convince it to leave.

Fear makes people want to lash out, to find a scapegoat, to find something, anything to blame and punish that might possibly make the fear go away so they no longer have be there, soaking in it, marinated by tears and anxiety and what ifs.

Fear is an unknown. It is about the unknown. It is about lack of answers, lack of stability, lack of safety.

Fear is that moment when you were little when you lost your parent in the store and had no idea where they were and if you would ever find them again. But then you did and all was well. That can't happen right now.

Right now we have to live with our fear, hold it's hand, comfort it like we would the little child crying because they lost their parent.

The thing is, it will get better. It might also get worse. It will very likely do both and possibly at the same time. That's a hard thing to digest, much the less accept.

Change happens. Change is scary. The unknown is scary. But Time also happens. Things change. You never step in the same river twice.

This isn't where we want to be. This isn't the life we want to be living, but it is the one we were dealt. We get to choose the cards to play, make the best of a bad hand and do our best to find some little bits of good among the fear.

Like with a chronic illness, it's not about what you've lost. It's about what you are still able to do. Mourn your losses and then focus on your strengths. Focus on what you CAN, not what you can't.

You have the choice every single moment of every single day to choose good. You aren't perfect. You won't get it right all the time and that's ok. Just try to choose the good over the bad as often as you can.

Learn to live with your fear, to comfort it when it cries out in terror at our current world. Know that you aren't alone. We are all here in this together. The world will get though this and will keep on turning.