Finally, I finished my latest painting, “A New Day.”
As I mentioned in a recent post (VIEW FROM MY WHEELCHAIR: RENEWAL), my disease robs me of energy. Still, I make plans, and even if I am waylaid, I am content in every situation. However, my life is not only a mirror of what I say and do. It is also a reflection of the light in my soul.
So, I continue to wage a war against my disease – not in anger but in determination. I know that my moments are strung together. It is as if time were paint, and I hold the brush by which I make bold strokes on the canvas of my life.
Each response applies a color. Beauty and depth are created with blues, yellows, and reds. Carefully, I work to avoid muddy colors that can dull or darken my life. Reactions such as anger and hate destroy the picture and leave my dreams unrealized.
Hoping to start a new painting, I make preliminary plans for the day. Lately, my energy has been in the toilet. But not today! Finally, I feel 75% of the old me. Not wanting to lose my burst of vitality, my caretaker helps me to get dressed, and off we go to my painting space.
These moments are precious. They can slip away without notice and fall away. It is as if I live on the edge of thin, spring ice. My footing is tentative on the slick surface of promises.
Living with a deteriorating, chronic illness requires me to assess everything I do. All the time, I need to make sure that I am not operating under the wrong assumptions. One day I can open a container of yogurt, the next day, I can’t. Then, suddenly, a week later, I can again. As time creeps forward, the “I can days” are being outnumbered by the “I cannot days.”
It can be quite maddening – plans need to be conditional. Without notice, I have to rearrange my schedule to accommodate my body’s demands. I have started to say, “If I feel up to it, I would like to . . .”. Every day, the counting of energy expended on any activity of daily living needs to be examined. “Is it a good day for a shower? What else would I like to do today?”
Finding the way through the uncharted territory of my new life, I know that there are two rudimentary reactions to the fickleness of my days. I can view them with as robbers of my life, or I can dig deeper and discover new ways of being me. For me, the option is obvious.
So the process begins: my new life is defined. I am renewed.
Every experience, skill, or career has foundational basics. When you were in school, before you could solve an algebraic formula you needed to learn basic math skills. Foundational skills, truths, or assumptions have an impact on everything we do. We live out our lives using these elements as the groundwork without giving them much thought.
For example, imagine you just walked in the door of your home, and it is time to make dinner. You don’t know exactly what you will be serving, but you toss some onions and vegetables into a pan and let them work their magic. These basic ingredients for a savory meal can morph any ingredients you choose. As the onion and peppers release their delicious aroma into the air; everyone who catches a whiff is enticed with the promise. Sometimes, the ingredients are determined by what is available in the pantry. If you are an experienced cook, then as long as you have some foundational elements, you will cook with confidence. You have faith in your basic ingredients and in your skills developed through experience.
Living with a chronic disease is similar to being a cook with a limited pantry. What we do each day is determined by what energy or help is available to us. Yesterday has no bearing on today. We do not know what we will have at the end of each day. We create our experience as we go along. Nevertheless, we always start with the basics of our beliefs based on our experiences.
So, what do we believe, and what interpretation do we make based on our experiences? It seems that it would be to our benefit if we could find a way to articulate our basic beliefs about what we need, want, and expect. I know that it would help me. For example, last night just as I was going to sleep, I mentioned to my husband that I wanted to take a shower before heading off to church in the morning. I had already mentioned it to him the day before, but I wanted to remind him so that he would set the alarm clock to allow us enough time. Because I need his help to get showered, dressed, and hair dried, the time required is significantly different then days when I skip the shower before church. He responded with a less than enthusiastic reply. At the time, I let it go. Now, hours later, I am playing the events over in my head.
This is the moment where I begin to cook my experience. What are my basics, my onion and peppers? What do I believe, and what interpretation do I stir into the mix? Do I tell myself that my husband is unhappy or frustrated or some other emotion? How do I respond to my belief? What type of meal am I making? Will it be savory or bitter? Now is the moment of decision. All realities are available. All avenues of emotions are ready to react.
By conscious decision, I need to reign in and take a survey of what ingredients will I be using from the pantry of my experiences. Why would I choose an interpretation that is less than favorable about a man who thinks about my comfort and needs all the time? Just maybe I heard something that wasn’t there. What I expected and wanted was an acknowledgment of a previously agreed to activity. What I need is more tenuous. This is the thin, tender layer that covers my heart. I need to feel as if I am not a burden. So, any little imagined or real indication that I might, just might, be a bother puts me on edge. Nevertheless, I need to respond and not react. I don’t even know if I am correct. Even more important, even if I am correct and he was less than enthusiast about helping me shower in the morning, so what?
There are times when I am unable to think rationally and clearly. This is not one of those times. The more that I practice asking myself the critical questions (What are my basic beliefs? What do I need, want, and expect? What is my interpretation?), the better I will get at responding and not reacting.
Our lives are complicated and arduous. We face demanding situations every day. Let us choose to add love, hope, and peace to the mix. Onions might be a basic to making a savory meal, but love is a basic ingredient to living a life that has a pleasing aroma; everyone who catches a whiff knows that a promise is being made.
Living with a disability presents daily challenges. Not all of them are obvious. In fact, most of the time, the trials are small, little aggravations that accumulate over time. The over-arching experience will distill the personality of those in the midst of a struggle. The distilling process will eventually leave us with a solution of vinegar or wine. We have all met someone whose temperament is sour and others whose temperament is sweet.
Not all disabilities are of the physical world. Many belong to the psychological, financial, or familial impairments. For example, many people are suffering silently from depression or other forms of mental illness. Everyone lives with a chronic condition. We are all partners in our struggles.
Sometimes, a little fun, hope, and faith can lighten the load. My goal is to engage you in a dialogue about all that matters to anyone living with a chronic condition.