“When Jesus saw him and knew he had been ill for a long time, He asked him, do you want to get well”.
John 5:6 (NKJV)
Diagnosis: The identification of the nature and cause of a certain phenomenon; to identify a disease, illness or problem.
Persistent joint pain, nerve pain, headaches, neck and back pain. Tingling, numbness, depression, brain fog, rib pain, tenderness. Forgetfulness, weakness and more.
Five years of blood work, endless MRI’s, evoked potentials, Lyme testing (twice), thyroid testing, CAT scans, manipulation, specialists and lumbar punctures. Yes, plural. Punctures. The first puncture hole leaked causing me severe, blinding head pain so they had to puncture me again to form a blood patch.
Dangling by a torn rope. I felt a brief relief to have a diagnosis, however, hopelessness began to set in. I was under severe stress at this time that was creating havoc with my ongoing symptoms exacerbating them to the point of my mind unraveling. Melodramatic? I’ve heard that, however, this is my clear recollection of the vivid pain of the past five years of MY life.
From one doctor to another. This medication, that medication. No relief to be found. I’ve said this often and stand faithfully by these words. Pain changes a person from the outside in. What we can do with the pain does not always come in revelation form. No great discoveries, just attempts to find something that works. It’s a process that lasts a lifetime. Management. Constantly tending to each pain, each thought, each failure and then maintain success when some relief can be found.
My diagnosis was not followed by any immediate reassurance that all would be well. No cure, just management. This led to a year of me trudging through the grief process.
Denial. Anger. Bargaining. Depression. Acceptance.
Depression remained present the entire time.
Did I want to resign to the fact that I would no longer have a healthy body?
Was I ready to let go of the things that I wanted to do? The things that I loved doing?
No. Of course not. I just didn’t know where to begin and I truly felt like I was swimming in the ocean all alone giving fear, sadness and lonliness more power than they deserved. There were no cheerleaders on the sidelines or coaches giving me plays, assignments or goals. I didn’t know where to turn. My experiences with my lead doctors was utterly dismal.
Although I am no stranger to emotions, these particular ones laid out a trip wire that was constantly bringing me down. Hopelessness intensified and the heavy clouds just didn’t seem to want to dissipate hovered onimously above my head. It became darker than night. Where was this ‘management’ that I needed? Did I even have what it takes to move forward after these past years that’s have sucked the life out of me? The darkness became darker. I spent many days in bed trying to get past the pain, but the thoughts of all I had begun to let go of, the things I could no longer do haunted me to the point of insanity. I couldn’t see beyond anything but my physical and mental state. My faith was as weak as my muscles and I had no one to turn to. My husband has been by my side from day one and gives me all that he has, but when a caregiver is charged with moving a mountain, they lose faith too. We both became weak and hopeless together. He couldn’t help me and I couldn’t help myself.
There were brighter days every so often and this is when I realized that God has been here all along. I knew this, but I refused to believe it. I was so despondent from feeling abandoned, but God got me through when I knew I couldn’t. I began reading The Word everyday and finished the entire book within the year. I’ve studied the Bible for many years, but the words began to come off the pages and intertwine and weave through my hopelessness. He continued to lift me from the hole I laid in and showed me that even when there are clouds, the sun still shines. I began to pay close attention to what may be a trigger to an exacerbation and realized that stress deserved first place. Although I learn things the hard way (as I occasionally still imbibe in freak outs and meltdown) I gain new tools necessary to deal with the onslaught of physical and emotional pain that I will encounter along the way. From this discovery have come many more and I have begun the process of elimination of all stressors. Although this list is long, I don’t feel as if I am giving them up. I’m making room for newer and brighter things.
Let me say that a diagnosis is a superior time to do some spring cleaning. Some heavy duty housework. I needed to become familiar with my disease beyond just knowing what it was. I needed to learn how to live with it, confront the fears, thoughts and emotions for what they are. My brain has most of the difficulty comprehending and adjusting. It seems I am unable to retain some pretty important things or hold on to memories that fade on a daily basis, therefore I write to remember. I definitely have much more time to lay words to paper. (or should I say screen)?
So, where to begin. It’s all trial and error. Each day brings something different. Acceptance has come at a price, but at least I can see it. God continues to work wonders in my heart and has stabilized my thought pattern so I can see Him much more clearly. I can recognize each day as a new beginning and remember that my control only gets me so far. Slow and steady wins the race.
After 38 years, (the man whom Jesus spoke to in John 5:6) this mans problems became a way of life. No one had ever helped him. He had no hope of ever being healed. This man situation looked hopeless. Don’t let a hardship cause you to lose hope. God may have special work for you to do in spite of your condition, or even because of it. Many have ministered effectively to hurting people because they have triumphed over their own hurts.
If you find yourself in the unique position of being a caregiver to someone in pain, please choose your words of encouragement and care wisely. Do not lecture or point out what you may think their situation looks like to you when you really have no idea. Words hurt the most.
THOUGHTS TO PONDER:
What does it really look like to be and feel well? Am I even ready for that? Hmm….