Normal. Normalcy. Normality. However you want to say it, there is a certain connotation behind it. But what is normal? Is there one person somewhere who is considered perfectly “normal” and the rest of us are just measured against them? Or is it about taking the middle slice through a population and coming up with the average and considering that “normal”. Like when it comes to a “normal” body temperature. How many people really have a temperature of 98.6° all the time? I know there is naturally variation among people, but someone draws the “normal” line somewhere and says that is what we should all strive for. Personally, when my temperature gets to the “normal” 98.6°, it’s time for me to keep an eye on it and worry if it climbs higher since my “normal” temperature is about a degree below that.
And when it comes to other “normal” things…well, who determines what is considered normal and what is considered abnormal? When it comes down to it, it’s all relative. What is “normal” for me would probably be seen as strange, weird, bizarre, or somehow abnormal in your eyes. For me, normalcy involves being in the medical world and having that on my mind pretty much 24/7 because pills have to be swallowed at certain times of the day, IV infusions have to be scheduled and hooked up on time, shipments of supplies need to be timed so I don’t run out of supplies, refills on medications have to be called in and picked up on time, doctor’s appointments have to be scheduled and gotten to, and so many other medical things that I have to be aware of. And that doesn’t even go into the constant reminders with the symptoms that are there all the time – the fatigue, the joint and muscle pain, the gastrointestinal pain and nausea, the brain fog, and everything else that goes along with these chronic illnesses that I carry around with me all the time.
I am sure that for most of you, “normal” doesn’t include carrying around a backpack with portable pumps in them and have tubing coming out from under your shirt and be out and about in the world (or not) while infusing various medications and hydration. And because this isn’t your “normal”, you may be confused and taken aback when you see me (or someone else like me) walking around in the grocery store with this backpack set-up. When I go out with my little backpack, of which I have a very large collection (I just took a count and I have 12 in all but I don’t use all of them, I have a few that are my favorites and the rest are around for other occasions and just to have options), I feel like I get weird looks from people who just don’t know what it’s all for. I’m somewhat self-conscious about it all, but I’ve learned to be grateful for the fact that I can be out at the grocery store while infusing because without the backpack, pumps, and medications I don’t think I’d be able to be doing any of that. I would be stuck at home hooked up to an IV pole or, worse yet, in bed without the precious medications that have kept me alive for the past 10 years (well, not 10 years of IVs, it’s only been just over 5 years since the beginning of my first round of IVs). Instead of being totally embarrassed by the loud sounds my pumps make and having people ask about the sound, I am so grateful to have the pumps in the first place because I know how much more difficult my life would be without them.
My idea of what is “normal” is so different from what the…well, “normal” view of “normal” probably is. But is there really a normal view of normal or is that an oxymoron? If there really isn’t just one “normal”, then wouldn’t we each have our own unique idea of what “normal” is? For you, normal may be caring for an ill child, an aging parent or grandparent, having a house full of pets, having to work 2 or 3 jobs to make ends meet, raising children on your own, or learning to deal with a difficult prognosis of this or that disease. So who has a right to say that something is normal or abnormal?
Granted, a view of what is normal has a place like in lab work. It’s helpful in that instance to have parameters of normal defined so that you know if things aren’t right for one reason or another and you can try to fix them. But even there, what’s normal for one person isn’t necessarily normal for another person. For example, my alkaline phosphatase (a liver function) is chronically low and we’re not sure why but perhaps that’s what my “normal” is right now and maybe it doesn’t really matter that it’s low, maybe it does. We don’t know everything there is to know about the human body. And with things like blood pressure and cholesterol constantly having their “normal” numbers lowered and lowered, how can someone possibly seek to be within the parameters of “normal” that are being redefined on a regular basis? I know that my blood pressure is good when it’s 120/80 but that is now considered prehypertension whereas it used to be the normal value that everyone should strive for. When my blood pressure goes down to, say 100/65, that’s not good for me and usually it means I’m not feeling great. But the problem is, many doctors (and nurses and just regular people) don’t take the time to realize that one person’s “normal” is probably different than another person’s “normal”. So if I went to a new doctor’s office and they took my temperature and it was 99.0°, they probably wouldn’t think much of it but I would know that it’s bordering on a real fever.
I think I’ve strayed from what I was trying to focus on. It’s not about those medical values of blood tests, temperature, blood pressure, etc. It’s about what we consider “normal” in our day to day lives and how they are so different from one person to the next. It’s hard to get weird looks while at a store with my little backpack and tubing coming out from underneath my shirt. It’s hard to get funny looks when I have to park in a handicapped space because I don’t look handicapped. But the truth of the matter is that no one knows what is going on within anyone else. There’s a great quote by Miller Williams that says, "Have compassion for everyone you meet, even if they don't want it. What appears bad manners, an ill temper or cynicism is always a sign of things no ears have heard, no eyes have seen. You do not know what wars are going on down there where the spirit meets the bone." And along with that, who are we to say that our lives are more “normal” than someone else’s? Normalcy is all relative and looking down on someone else for their apparent abnormality and seeing that as a problem just hurts ourselves because we are developing assumptions that shut us off to the world.
Seeing the world narrowly in any way cuts us off to experiences that could be valuable and possibly life changing. Just because something is different, doesn’t mean it has to be scary.
Yours,
Penguini
