As a new year creeps up on me, I typically like to take stock of where I have been and where I desire to be going forward. This year is no different and my recent theme of Redefining is well suited to this annual tradition of going through old journals. As we look ahead, I have a personal lesson to share with you which, though rooted in my own experience, does not need to be exclusive to health issues. Perhaps this will help with a difficult adjustment you may face in the coming year. At times I am able to really grasp this lesson and benefit from it. Then, at other times, it feels as fleeting and fading as the flowers of my bouquet. But I keep striving to implement it. Join me as we consider a simple basket of flowers, and what it has come to represent to me.
January 4, 2019 — The Lesson From My Journal
I am laying in bed, on my pillow pile, with the calendar app open on my phone, while fumbling with the invitation card in my hand. I am procrastinating the inevitable. Tears are welling in my eyes and threatening to spill out as I think about the reality of my circumstances. I really do have to say, “No.” Again. My RSVP, sent weeks ago, had been a joyful, “Yes!” Yet today, the day of the wedding, I must send a text to my dear friend, the mother of the groom, to tell her I am not able to make it. Oh, she understands and will be quite gracious. It’s me. I am the one who cannot understand why I have to drop out of so much of life. I am the one putting pressure on myself as I unwisely struggle to fit back into my old life. I had been looking forward to this special day, and the disappointment is hard to swallow.
With the necessary text sent, I lay back and close my eyes. My thoughts begin to drift as the following analogy is painted in my mind.
My life with Ehlers-Danlos Syndrome and fibromyalgia is not unlike my great-grandma Willard’s glass basket. Intricate, lovely, unique . . . and fragile. I picture myself gathering a fresh bouquet of flowers. Walking down a winding hedged path, I select a variety of types, colors, and sizes, and place them in my glass basket, a gift on my great-grandparents’ 50th wedding anniversary. “No, not that bloom,” comes the familiar Gentle Voice. Startled, I respond, “Oh, but Father, I like this one so much!” “Not this time, your basket will break.” Perhaps a bit grudgingly, I pass by that flower and continue to walk along the path, passing by a lot of flowers. But I am slowly catching the lesson.
December 26, 2019 — The Ongoing Application (a year later)
In a playful way, the idea of seeing my days and weeks as represented by the glass basket, and my energy expenditures as the flowers, has helped me to be more balanced in my activities. But in a more concrete manner, it is useful to have a means by which to assess my energy outlay. It is somewhat like balancing a checkbook. I need to keep things out of the red! If I load my entire basket early in the week, that is it, I am done. Or, I can spread it out, enjoy them more, and avoid a crash.
It has also helped me to prioritize my flowers. My commitment to Illustrated Evangelism, my continuing part in the ministry in Sierra Leone, takes the highest priority. That bloom goes in my basket first. However, this is also my greatest energy expenditure, so I must bear in mind that there will be times which it cannot be a part of my daily bouquet. Sundays and Thursdays I know that I cannot select that bloom, or I will not have sufficient energy credits remaining for church those nights.
Perhaps I am in a flare and need to remove a previously selected flower, like a wedding, as the load in my basket has unexpectedly become too great. One flower too many, too great an expenditure of energy, too heavy a strain, too many commitments, too many sleepless nights, these can exacerbate or bring on a flare up of symptoms. Sometimes a flare comes without much warning at all, and I need to just hastily empty the whole thing.
With guidance from the Gardener, I am learning that I must make judicious decisions about what goes in my lovely basket. This is essential to my physical and emotional wellbeing. My health is just too fragile right now, and is easily over taxed.
Living with EDS is about management and adaptation — redefining you might say. The challenges come from every side of life: physical, emotional, social, and even spiritual. It can be overwhelming at times. The endless fatigue can be crushing. I have to constantly be on guard to protect my overly loose joints. The way I step and turn. How carefully I roll over in bed. How I respond to a sudden and painful cramp. How hard I push myself. Is there too much on my calendar? Should I drive or arrange a ride? Do I have enough rest times factored in? Is my basket becoming overloaded? It all piles up in my fragile glass basket.
Working with my physical therapist is giving me greater confidence in some of these challenges, as she helps me to relearn life’s basics and carefully strengthen myself with exercise. Through it all, I strive to keep a calm and peaceful spirit, facing my acceptance with a lack of resistance. There is no room in the basket for the weeds of self pity or a poor attitude. I try to respond to the many challenges with grace. I am not always successful in these endeavors. My family and friends are wonderfully gracious and patient, helping me over some really tough places.
Then, sometimes, I have a special blessing, and the Master Gardener allows me to spontaneously add a small, sweet bud such as some baking, or a snatch of time in my garden. Or perhaps it is a large, colorful, very exquisite bloom, like the afternoon when I impulsively took my fun-loving granddaughters shopping for things they needed for their upcoming trip with the church youth group. I’m not at all deprived. Unless I choose to see myself so.
No, I’m not deprived. The Gardener is generous with the beauty and variety of the flowers that fill my glass basket — my life. I just need to be wise and not pick them all at once.