Chronic illness affects millions of Americans and being a full-time caregiver for a loved one with chronic illness can be taxing to family members. I know this struggle first hand. My son has a brain injury and requires constant supervision. When chronic illness is a part of your life, there is no escape. You may have a temporary respite or retreat, but the burden is always there. When you or someone suffers from a chronic condition, and healing doesn’t come, you have a choice to make. How will you let this impact your life? If you can’t change the physical illness, disease or chronic pain, then all you can do is manage your response to the situation.
My guest today Susan Wilder handles her struggle for her family with such grace. Please welcome Susan as she shares a blog post previously published on her blog, entitled This Is Us. Susan’s blog: https://www.byfaithandcoffee.com
This is us…
by Susan Wilder
This is us…
THIS is hard…
Are you a fan of the show, “This Is Us”? I should have known, but I didn’t, so just checked, and Season 2 begins on Tuesday. We were fans of Season 1, not saying we agreed with all the characters’ decisions during all the episodes or even the writers’ choices in all storylines. Regardless, we were hooked. The title of the show says much and then really nothing at all. If I remember correctly, the pilot episode included the celebration of birthdays… four different people – adults, at first, seemingly unrelated. Not far into the show, we were brought along for the creative story of how each of these lives were so intricately intertwined. Each week brought new eye-opening, tear-shedding moments of the deepened understanding of each character and … usually with a twist… the intricacies of their relationships.
Many moments were sprinkled with scenes from the past mingled with present-day events in their lives, then just with a blink, back in time again.
What might your pilot episode include? Would you share about your “now”, or would a past event be key to understanding the progression of life?
Seems I’ve been busy lately with a time of figuring out… researching unexplored territory… asking questions… discerning much of what I don’t feel qualified to discern.
How did we get here?
Anyone else ever asked that question?
Our family’s journey, really it is Frank’s journey, of chronic, unrelenting pain (we will never forget the gift of that pain-free six months!), has offered little relief and even less explanation. Frank has battled hard often through gritted teeth with a determined resolve to fight with every ounce of energy he could muster. Realizing early on in this 14-year struggle his strength and will simply couldn’t carry him through, his dependence on God’s promise for help and sustaining presence became his lifeline.
Recently our “this is us” scene catapulted with such force, we’ve had a little trouble bouncing back. Let’s be honest… we’ve had a little trouble crawling back. Without bunches of details of what we and some “much smarter than us” experts are trying to define, Frank has experienced a significant, for lack of a better word, my very medical term: brain fog… from days of memory loss, sleep deprivation, confusion, sadness, and honestly, deep despair. This is hard.
For years we’ve laughed out loud at the term pain management. Our discussion seemed to return to we have no interest or desire to manage pain… we’d simply prefer to remove pain. That hasn’t been the case, so management became the goal. With much help, we learned to live in a new normal of the managing reality.
Managing this new normal… that prayerfully, will be short-lived, is hard. Nobody has offered us the rule book, the ABC’s to follow, even a list of “here’s the likely way this will run”.
This is us… and this is hard. We will continue to trust our God is the midst of very hard.
We have prayed much… and will continue to.
We have asked others to pray… and know they have and will continue to.
We have grieved the unknown… and agreed that God knows.
We have feared uncertainty… and know Who conquers fear.
We have pleaded for understanding… and realized His grace is indeed sufficient.
We have asked for clarity… and hear the word of God give grace and peace.
We have looked for help… and know the HOPE of Jesus is our answer.
His word is active and alive… and brings comfort to these weary soul:
I lift up my eyes to the mountains—
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The Lord watches over you—
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The Lord will keep you from all harm—
he will watch over your life;
the Lord will watch over your coming and going
both now and forevermore. Psalm 121
Praying His comfort in your ‘hard’, friend… and thankful for your prayers in ours.
Jesus warned us that we would have tribulation in this world, but to take heart and have peace, because He has overcome the world. Our prayers for healing may not come. Chronic illness or disability may cause a lifetime of struggle, but Jesus promises never to leave us or forsake us. When we are in the midst of the battle we can be comforted knowing He is near.
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