I went from believing I could do anything, and having very few (if any) physical limitations, to being faced with questions like:
"Will I lose the ability to walk? To see? Worse, to swallow or breathe?"
"Will I be around when my kids have kids? Get married? Graduate college? High school?"
"Will I be able to work and drive in 10 years?"
I've been a fighter my entire life: a strong-willed ball buster who doesn't put up with crap from anybody. I've gotten in the ring with stuff that nobody should experience; but, by the sheer grace of God, I faced it and came through it stronger. He has had His hand on me for years. No matter where I went, He was there. And when this diagnosis hit, I knew, in my head at least, that He'd still be there. But I didn't really FEEL it - not in my heart. I felt overwhelmed and anxious and alone. With people all around me, supporting me, loving me, praying for me - I still felt alone. To be honest, there are many moments like that for me these days. The presence of relationships doesn't negate the feelings of loneliness and isolation that creep in on the days when the pain is bad and I can't see past the fog of grief over the way things "used to be."
Imagine being a competitive athlete - the type who could run two obstacle course races in one weekend, the type who just continued to see growth and advances in their fitness level, the kind who loved getting up to workout and wanted nothing more than to guide others on their fitness journeys. Imagine being the mom who spent hours working around the house and doing things with the kids on the weekends, the friend who always wanted to get together and do things. It was great. I was happy with who I was, and I was growing.
What a difference a year makes...
Now I workout maybe 3 times a week, 4 if I'm feeling up to it. My fitness routine has really been stepped down several notches, to try to keep the pain and muscle weakness and fatigue at bay. I struggle to find words and remember names, I drop things constantly, I sometimes need to use a cane or (worst case) a power chair. I have a handicapped tag for my car. My muscles spasm, my legs and face burn from neuropathic pain, my hands shake, and I fight nausea. I struggle to focus and understand things, and I am so very fatigued, almost all of the time.
Sometimes the hardest part is emotional, though. Living with the constant fear of waiting for the next shoe to drop - THAT has been tough for me. I have always been one who liked being in control; I wanted to set long-term goals and plan for the future. With MS, I can't always make long term plans, or keep them. And I DEFINITELY can't control anything anymore; of course, maybe I wasn't ever really "in control" before, but that's another post. This type of uncertainty just leads to a hopeless feeling for the future, combined with fear and just total sadness. You feel like you've had part of you stolen by a vile enemy, and that makes you angry. But this disease in incurable, which leads you to feel helpless. It's just one giant black hole after another, sucking you into hours of depression.
Where's my faith in all this, you ask? It's there. It's still there. It's always been there. It's just harder to find some days than others. The good news? My MS is "stable" according to my annual MRIs; no lesions on spine, and my brain looks the same as it did last year - still have multiple lesions, but no new ones. This is good. This is technically considered "remission," when talking about Relapsing Remitting Multiple Sclerosis. The funny (not funny) thing about that word, though, is that it's not remission in the way you would think about remission. It conjures up images of someone who is symptom free and feels like they did before diagnosis. And, for a few MSers, that's how their disease works. But, for me, and for many others like me, it doesn't work that way. Our current lesions carry symptoms that we still experience, even when the relapses are technically over. MS is progressive, so I have had symptoms that have slowly impacted me more and more, even though I've had no new lesions for a year. They fluctuate, day by day and even moment by moment. I may have a day when I have very few symptoms, and I may have a day when they totally overwhelm me. It's been hard trying to get used to the unpredictability.
I've been reading this book by Craig Groeschel called "Hope In the Dark: Believing God Is Good When Life Is Not," and he talked at one point about Habakkuk, the prophet in the Bible. Habakkuk came to God with a lot of questions about the pain that God's people were experiencing - questions about why God was allowing injustice, and why he wasn't intervening. Questions like "How long must I call for help, and You do not listen?" Man, I have echoed that same prayer so many times over the past year. Friends have prayed for my healing, for symptoms to subside. I have prayed, family members have prayed. I have been prayed over and I have read books and Scripture about healing. I've researched until my eyes crossed, searching for healing and cures. But, so far, I haven't been healed. My lesions are still there. My symptoms still crush me at times. I have yelled at God, I have cursed Him, I have told Him that I don't want anything to do with Someone who COULD heal me, but won't. Someone who would allow a young mother to have to fight this battle for the rest of her life. Someone who would let my kids have a mom with a chronic illness.
Later on, in the same chapter of Habakkuk, God answers the prophet. He says " “Look at the nations and watch - and be utterly amazed. For I am going to do something in your days that you would not believe, even if you were told." People read this all the time and they quote it, thinking it means that God is about to do great and wonderful and pleasant things, that He's about to open the floodgates of blessing. But, if you keep reading, it doesn't mean that at all. Actually, God continues by telling Habakkuk that He's going to raise up a fierce enemy to bring pain and destruction to God's people. Basically, God says that it's going to get worse - much worse - before it gets better. That's a damn hard pill to swallow. But at the end of this conversation, Habakkuk talks about how he's seen God's faithfulness for years, and how he knows God's character is good and His love is strong. He knows that, eventually, God will bring rescue, wholeness, and healing. He says, "Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails, and the fields produce no food, though there are no sheep in the pen, and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights." Despite the loss and pain that is coming, through all of the unfathomable struggle, God was his strength when he was weak, and He lifted his heart above all the mess and the noise.
Basically - like Habakkuk - I've spent the last year trying to reconcile my faith with a future that holds no resolution, from this vantage point. I'm looking out over a path of pain and weakness, with no end in sight. I cannot see the light at the end of the tunnel. Shoot, I can't even FIND the damn tunnel. And, honestly, I don't really feel like rejoicing most days. But I haven't thrown in the towel yet, and I'm not going to. I'm going to keep pressing into Jesus until He gives me words and the peace and the strength I need to get through, because I know He didn't bring me this far just to bring me this far. As my friend Anthony says, "I may not like His plan; I may think His plan sucks. But I know His plan is ALWAYS better than MY plan."
No comments:
Post a Comment