You’re younger, full of energy, and still in possession of a healthy body and mind. How then do you relate with understanding to those you love who are chronically or terminally ill? To add to the difficulty, they may be much older. How then can you ever hope to understand what they’re going through?
The all-encompassing nature of chronic illness and the way it disrupts life and plans for your loved one may be very difficult to understand if you’re not experiencing it. But lacking understanding doesn’t mean you don’t have an opportunity to respond with grace to their situation. You do have choices that can help them immensely and at the same time, help you begin to understand what they are facing. Your choices will include mercy, patience, and kindness: mercy, because you’ll need to forgive their fumbling with new, overwhelming limitations; patience, because you’ll suffer long with their slowness; and kindness, because their wounding may draw away your time and energy.
We are often asked, “How’s it going?” The question is from well-meaning friends and neighbors who know we live day in and day out with Julia suffering from a progressive lung disease called IPF (Idiopathic Pulmonary Fibrosis). The disease is typically terminal in 2-5 years. Julia has lived for almost two years since being diagnosed with the disease and has stabilized at a level that allows Julia to have about 48% of her lungs in use.
What if deep breathing is no longer possible? The benefits of deep, belly breathing are many. Your stress reduces as toxins are flushed out of your body. Your mental focus, posture and quality of sleep improve. You reduce your risk of cancer, raise your rate of metabolism and lower your cholesterol. But what if deep breathing is no longer possible?
In an effort to help understanding, I challenge you with healthy lungs to breathe shallow with the top part of your lungs for 5 minutes, at a faster rate than you normally breathe. I doubt you can breathe like that for more than a minute or two. In shallow breathing the body switches into a flight or fight mode and begins to tire quickly. The brain cries out for more oxygen and focuses on the need to find air. Now, add to that experiment leaning over to tie your shoes, add the dust and humidity in the air, add the normal aging process, add lack of sleep, add etc. I doubt anyone who isn’t forced to live with limited breath can truly understand from experience what it’s really like.
We know it may be impossible for you to understand what it’s like to live with a chronic illness, but that’s not what we hope from you. Mercy, patience and kindness are what we crave most in our hardest moments.
There are days when the radical losses in energy and freedom of movement are almost more than we can bear. There are days when the new normal of dizziness, mounting aches and pains, lack of sleep, lack of memory and mental concentration, and isolation from the world rushing by bring fear: fear that we’re losing who we are; fear that we’re no longer loveable; fear that we’re no longer useful; fear that we’ll ever figure out how to live with this thing that’s got us in a headlock, squeezing energy and time out of all we deem wonderful and good. And on those days, it’s not lack of understanding in our loved ones that we crave so much as grace.
When those suffering the trying moment of a chronic illness are met with unforgiveness, impatience and aloofness they can come to believe that no amount of words of explanation or apology can ever be enough. Their need to justify themselves may become all-consuming, and equally the most desperate endeavor they consider in seeking relief from their fear of losing you too.
Please don’t misunderstand my intentions here. I’m not complaining, but rejoicing in what we’ve been given on the hardest days.
You see, most days we find much to rejoice in because God’s grace is so evident. Since the diagnosis of IPF, He’s given Julia and me more days together than we first imagined possible. He’s given us the Scriptures that continually renew us in faith and hope. He’s taught us so much about trusting Him and finding Him to be deeper and better and greater than we ever imagined He could be. But mostly, there’s you, our beloved children and friends. Your mercy, patience and kindness mean more than you can possibly imagine. Thank you for bringing God’s grace to us as we set our face forward and rise up to face another day.
“Since God chose you to be the holy people he loves, you must clothe yourselves with tenderhearted mercy, kindness, humility, gentleness, and patience. 13 Make allowance for each other’s faults, and forgive anyone who offends you. Remember, the Lord forgave you, so you must forgive others.”
Colossians 3:12-13 (NLT)