Often, it’s a formality, not requiring a response. Very seldom is it a question that people want an honest answer to. So why do we ask it? It’s polite. These three words have become a dread for me. I don’t want to lie, nor do I want to tell the truth. It would be impolite to ignore someone, so I am often struck with a bit of anxiety while I try to figure out what to say. My ‘go to’ has become alright, but that is a lie – all is not right!
Here is the truth: I am not ok. I suffer from several chronic conditions. Let me start there. Chronic, according to dictionary.com, can be defined as 1) constant, habitual, inveterate 2) continuing a long time or recurring frequently: 3) having long had a disease, habit, weakness, or the like: 4) (of a disease) having long duration (opposed to acute).
I live with constant pain – every second of every minute of every hour of every day, I am in pain. It hurts to laugh, to hug – it hurts to breathe. On top of chronic (undiagnosed) pain in my lower left abdomen, I have chronic granulomatous mastitis. In short, a granuloma is an inflammatory growth, and I have had one for over thirty months. I have attempted medicine, which has actually harmed me more than it helped me. I also attempted surgery, and the surgical wound from the attempt to cure me refuses to close – fourteen months later. Through all of this, I have discovered that I also have Lupus. I am just going to be honest – that diagnosis came as a relief. Not because I have Lupus – but because there is finally a documented reason for some of the symptoms that I couldn’t assign to one of the other conditions. If you have never lived with a chronic condition, you cannot begin to sympathize with someone who has suffered with pain, and has had a doctor give them a sad look and a shoulder shrug.
I struggle to remember elementary words. “Son, can you put on your socks and….”, ugh what is that word? The things with laces that protect your feet. “My shoes?” Yes! Shoes. This happens all day. I have been blaming it on age, but ya’ll, I am only thirty-eight! I find myself saying that I am at max capacity, as though my inability to remember basic words is just because I am busy, or have a lot on my plate. But the truth is that can be attributed to Lupus.
What I want you to know is that every day is a series of choices for me. Before my feet hit the floor in the morning, I assess my pain level. Maybe half of the days in a month begin with a whisper, “I hurt.” I say that a lot, usually under my breath, and almost always unconsciously. I decide how I am going to get out of bed – either roll over and push up with my arms to avoid using the muscles in my abdomen, or use one arm as a brace and push off of it with the other. If the pain is particularly bad my first thought of the day is usually I can’t do this. Next, I assess the wound in the mirror and drain any fluid that is behind the skin. When I see the wound in the mirror, I always notice that my breast is deformed from the surgery. Sometimes I wish that they had just cut it off. Then I have to decide what type of bandage I am going to use. I am allergic to the adhesive in most band-aids, but when I just use a gauze pad, they shift and fluids leak. Pain usually decides whether or not I am going to eat breakfast. The higher the pain level, the less likely that food sounds good. Some days I feel like I have been hit by a truck – every muscle in my body aches, and I just can’t get warm. Those days usually call for ibuprofen for breakfast. Pain determines whether I will ride my bike to work or drive. I wrestle with wanting to do things and not being able to. Here is the thing, I can do what I want to do, but there is a price. In the past, pride would prevent me from diverting from my plans, because no matter the price, I was willing to pay it. I refused to feel defeated. The problem with that mentality is that rather than just feel defeated, my body began to feel defeated. I can’t live like this, I would think. And yet I would push right on through. Part of growing through what you are going through is to adapt, to accept, and to change. (See my post: I Can’t and That’s Ok.)
Here is the other thing: I don’t want your sympathy. The valley I am walking through is rough right now. I don’t understand it, but I know it has a purpose. I know I am not the same woman who entered the valley, and I also know I am not yet the woman I want to emerge from this valley as. God is working on me in the valley. He has held my hand, given me a purpose, and he will see me through to the mountain top. I am not ok, but that’s ok. I am weary, but this load isn’t more than I can bear. I have learned how to shift the weight of it, to set it all down and take a break when I need to.
I don’t expect my friends and family to understand what I am going through. I don’t even expect that they have done a Google search to see what any of these conditions are. They have their own loads that they are carrying. And let’s be honest, pain that you can’t see is rarely acknowledged. I hope that when I need to vent, or to cry, or a hand to hold, they will be there. I hope that when I cannot put one foot in front of the other, they will come along side me and offer a helping hand until I find the strength to continue. I hope that they pray for me, for God’s will in my life.
Pain is a portal to transformation, it does not knock politely.
Lucy H. Pearce
I am facing a new, long-term regimen of medicine. I have read the side effects, researched the precautions, and sought the wisdom of some brave souls who have taken it. I am more afraid of the medicine than I am of the disease. More accurately, I am more afraid of the effects of the medicine than I am of the disease. I know I am blessed to weigh the benefits, some suffer far more severely than I do, and they don’t have a choice but to take the medicine, despite the effects. At the end of the day, it is well. I choose joy. I choose to hold on to the faith I have in God. I don’t know what tomorrow will bring, but I know the one who holds all of my tomorrows.
Uncommonly Common Mom 