Unexpected Endings

My sweet husband and I celebrated our eighth wedding anniversary this week. With a graduation the previous month, and several unexpected expenses, (or bad spending habits of yours truly... whatever) we decided to keep it low-key. My mom kept our little ones for several days, so we had some quiet alone time.

We decided to hit Fork & Screen for the movie "Me Before You." We had seen the previews, and although I was interested in seeing it, I didn't figure my man would be up for it. I assumed that it might hit a little close to home. From the trailers I viewed, it appeared a story about a young man with a sudden spinal cord injury that found he could still find love and happiness despite his profound change in functionality.

Three and a half years ago, my able-bodied, risk-taking, tenacious spouse hit a jump on the ski slopes harder and faster than he intended. He windmilled his arms to regain control, but flew past the hill and landed on a flat spot. His ski tips hit first, and he did what they call a scorpion. If you are familiar with that deadly little arachnid, you will recall that their tail appears to flip backward over the top of its head. Bob's face/head hit hard, and his entire body flipped over his neck, while his head remained face-down in the snow. It happened in a split second. It was the last hill of the day, and of the entire trip. They were headed down to eat dinner and to fly home the next morning. One last jump recorded to show his children that their dad still had it.

An unfortunate combination of bone spurs, natural degeneration, and a congenital condition called spinal stenosis created a situation where no spinal fluid was present surrounding the cord where the full impact occurred. His spinal cord had no cushion to protect it. Swelling began. He required surgery to decompress and fuse his cervical vertebrae from C3-C6. He is medically classified as an incomplete quadriplegic with Central Cord Syndrome.

Most of you know the details of our lives over the last few years. Bob spent a total of sixteen weeks hospitalized; he was in Utah for three, and here in Kansas City for thirteen. He went through intensive physical and occupational therapy, learning how to feed, groom, and bathe himself again, first power wheelchair-bound, then walking with an auto-ambulator, then a platform walker, a regular walker, and now a cane. I had to go through training on how to transfer him from a wheelchair to bed, chair, couch, and back again. I had to learn more about medications than I ever really wanted to know. I became educated in how to catheterize him, to give injections to prevent blood clots and some additional unpleasant tasks (for both of us) that I won't mention here. I became a full-time caretaker when I was already a full-time mom to both a one and four-year-old. Dressing an adult male at 6 feet and nearly 200 pounds is surprisingly more complicated than clothing a baby and a toddler.

It has been hard but oh-so worth it. We celebrate every milestone. Social workers informed us early on that a high percentage of marriages wouldn't survive this type of circumstance. Having lived it, we both can understand why (although it twists my soul into knots when I consider others whose loved ones left) because it is HARD. We are good. We have joy. Most importantly, we have Jesus, which gives us hope. We have a new normal. It certainly isn't how we had planned or hoped that our lives would be, but we have so much gratitude. We received blessings beyond measure on more than one occasion. We love each other. We have seen each other at our absolute worst and love each other despite our mess and humanness. It is a choice. Love is a choice. Joy is a choice. Surviving Is. A. Choice.

All that to say, I knew this movie would be a tear-jerker. I was surprised when my man suggested that we see it. "Its almost like it's us."

No. No, it isn't. SPOILER ALERT If you haven't seen the movie, and you're planning on it, stop reading right now. I'm going to tell you the ending. Put this down, set it aside, and come back to me after you've watched it.

As it happens, "Me Before You" is about assisted suicide. You're given a glimpse into that early on, but if you're like me, you may think that surely they wouldn't end the movie like that. You'd be wrong. At the end of the day, after waiting for six months to fulfill a promise made to his parents, after falling in love with this sweet girl hired as a caretaker and who LOVED HIM BACK, he still decided to fly to Switzerland and end his life with medical assistance.

Before I stir this particular pot, please don't send me ugly comments. If you are a proponent of medically-assisted suicide, good for you. We'll have to agree to disagree. I'm not looking for a fight; I am sharing my opinion based on a particular circumstance of which I have a thorough understanding. I can empathize with both main characters and certainly sympathize.

I was angry when I left the cinema. Furious that I just sat through a film that at the end of the day, attempted to invalidate our lives. A movie that pretty much just said to my husband, "You don't have enough value to continue living now that you aren't physically able to be the same man you were before your accident. If you loved your life before this happened, and are never going to have that same life again, you might as well pack it up, big guy, because it's just not worth it. You have no hope." A film that said to me, "You may love him enough to stay and help take care of him, but if you REALLY loved him, you'd stand by and let him die. Real love wouldn't want him to be sad about his condition. True love would 'let him go' and as an added bonus, maybe you'll be able to have this great second start and maybe go to Paris on his dime and get some new perfume."

Okay, that last part was over the top. If you've seen it, you'll know what I'm referencing. They weren't married; they didn't even know each other before his accident. I get it. He wanted her to get to go to school and experience a life she couldn't have. Very sacrificial. Blah. Blah. Blah.

On the way, home, Bob reminded me that I can never actually understand what it is like from his perspective. He reminded me that he was athletic and bold (some may say cocky) and vivacious. He never questioned his abilities. If you don't get it right the first time, you get up and do it again. He was driven, ambitious, and on top of the world. He did a swan dive off the top of Black Rock in Maui. We went zip-lining and rappelled in the Sierra Madres. He would roller-blade eight to ten miles at speeds that were ridiculous. He traveled for work, ran a company, and was 'large and in charge.' He now feels some level of pain every single day. He can't sit for extended periods of time. He can't stand for long periods. There are no risk-taking activities in his future other than walking the length of our house and hoping he doesn't catch a toe on the carpet. Bob felt for this character in ways most would or could not. He said that if he didn't have hope or didn't have Jesus, he could easily imagine himself in that boat.

While I can not fully comprehend everything Bob goes through every day, I certainly can recognize what it is to have to the entire course of your life suddenly and drastically veer to the left. I can picture the fatigue and doubt and overwhelming sense of anxiety. I can recall exhaustion and inexplicable anger.

I would never wish this type of trauma on a single soul. If I could go back in time, and change Bob's trajectory on that slope, or better yet, keep him from making that trip at all, I would do it. It's hard. I love him. I don't like to see him in pain. I don't like to see his pride take a hit if he stumbles. It hurts my heart for him to see people occasionally assume that physical disabilities automatically mean there must be a mental impairment. A man with the best of intentions once continued to call my larger than life husband 'Buddy' and did everything but pat the top of Bob's head and call him 'good boy.' He didn't realize how condescending he was, and apparently believed he was very helpful. My husband was gracious and kind, and took it like a champ while I seethed quietly.

I certainly do not want to minimize the loss. We have grieved. We have had to develop a new normal, but let me be clear, neither Bob's value, nor the value of our relationship comes from society's view of us, or from what either of us can physically accomplish without device or aid from other sources. He has merit and worth because he is a creation of the Most High God. He has children who adore him. He has a wife (ahem) that has no interest in walking through this life without him. We have friendships that strengthened over the course of this journey. We have friendships that developed because of this journey. We have grown more spiritually than we would have otherwise, because, let's be honest, it is a lot easier to rely on God and trust Him when your feet get knocked out from under you than when you think you've got it all within your control.

I wonder how many quadriplegics, paraplegics, or anyone suffering from an illness that leaves them wheelchair bound or dependent upon others for their necessities feel watching a story unfold that ends with the character they identify with deciding that it just isn't worth living if he has to be like them. Maybe they would feel differently if they were shown as they are...fighters, warriors, courageous and dignified. Unwilling to be told they are unworthy of breath. They empathize. Definitely. I am guessing that most of them realize their story isn't over. Perhaps if they could see an ending where they recognized that just because life AS THEY KNEW IT was over, that LIFE ITSELF is far from over, it could be uplifting.

I know it was just a story, and I'm just telling you ours. Our non-fiction, still wading through it, still getting murky on occasion, saga. It's far from over. We're just getting started, and it's a good story, dare I say, a great one. I will cherish every single moment of it, even the hard ones. I will eagerly anticipate the next eight years of life with this man, and hopefully another eight after that, and so on, and so forth. We aren't over yet, we're just at a new chapter.

No Kidding, Interuppted...

I keep telling myself (in my head, that is) that I MUST start writing again. Of course, then I find a reason to do something else. Occasionally, it is something totally worthwhile. Periodically, it may even be momentous occasions that distract me from my goal, but more often than not, it's something completely and totally trivial. I may need a nap. (Who am I kidding... I LOVE NAPS!) Perhaps there has been a TV series that I'm not completely caught up on. Perhaps my ADD has kicked into high gear, and I actually sit down to write but then forget what my topic was going to be...or start a sentence and remember that I forgot to start dinner, or forgot to stop the timer on something. In the end, excuses are excuses, and I need to get back in gear.

Those of you who know me, ok, all of you know that my sweet man had a spinal cord injury three years ago and that last year, well... last year sucked, to put it mildly. We thought he was regressing, the doctors had not a clue (someday soon I'll write a fabulous story about the importance of being an advocate for your loved one that requires intensive medical care) and we were clueless as to where our life was headed.

Isn't it amazing that after witnessing miracle after miracle, watching our sovereign God work in unexplainable ways, that your trust in Him can still waver when you're in the thick of it? I was swallowed up in depression, as was my man. He very literally could have died. Doctors thought he was in neurogenic shock. Want a real heart-stopper? Google that mess while you're sitting in an ER with your man. Lucky for me, I had a senior pastor that googled it on my behalf and sent me a text telling me not to.

I am lucky and grateful to have friends that love me enough to make me aware of when I'm having a pity party. They encourage me in my faith. They remind me of where we've been and what we've overcome. They smack me around a bit to help me get my head on straight.

Last week, I finally started the process of getting off medications that helped me cope with the last three years. It's time. It's time for a lot of things. Time for me to get the extra 40-50 pounds off my hind end. Time for me to live abundantly again. Time to be free of any bindings I may have allowed myself to be trapped by. Time to remember that my identity should be wrapped up in Jesus, and not in my junk. Time to hit Reset again, as many times as is necessary going forward. So on that note...

*reset*

Anxieties & Answered Prayers

For the past few months, my man has been struggling with a myriad of issues surrounding his spinal cord injury. With two years having passed, we had expected his recovery to be much farther along than it was. More than that, he was deteriorating at a level that was both frightening, and just so stinking odd.

Last summer, he was rockin' and rollin'. His gait was barely altered, and our biggest concerns were about his hand strength and wrist flexion. He had moved over to a new medication to prevent blood clots. They took him off Coumadin, and moved him over to Xarelto. The plan was that we wouldn't have to have blood checks every week, and still rest easy that there weren't any new DVTs.

A few months later, he started to rapidly lose weight. His walking worsened, his knees began to bow inward, and he had difficulty lifting his feet. His balance, which was already awkward, became more difficult. He began to have quite a few falls. I would be in one section of the house, and suddenly hear an earth-quaking thud. Due to his initial injury, he was never able to get his hands up to help break his fall, so it was literally like a tree going down in the woods.

He lost all his muscle mass, along with a fair amount of body fat (which by the way, I found and promptly reallocated to my back-side) and this increased his pain level. Now bones were protruding. This made sitting or lying down for any duration excruciating for him, as it instigated nerve pain. His bowels and bladder regressed. His joints locked up, and his energy levels waned. It was scary, and it was suddenly visible to others outside of our immediate household.

We eventually agreed that the risk of potential blood clots was much less than the risk of a brain bleed after a simple fall. We took him off Xarelto. He had some instant improvements with how he felt overall, but no strong improvements in the walking or pain levels.

Last month, he had a fall that pretty shocking. He broke his nose, and had a slight non-displacing fracture of the C7 vertebrae. We finally found a physiatrist that didn't shrug his shoulders and say "I dunno why that is happening." Our family doctor (who is AMAZING) diligently went to work on pain management, actually found the new physiatrist, and coordinated care with him to determine our next steps.

The physiatrist mentioned that there was a slight possibility that he may have a syrinx, which is basically a cyst, or bubble in the spinal fluid. He wasn't presenting with typical symptoms, so we were unsure.

A week ago Saturday, he had an MRI to see if that was present. We have been not-so-patiently waiting for those results. His doctor got in touch with him late last night, and we scheduled an appointment to discuss the results.

Today, we learned that he does indeed have a syrinx, 6 mm, in the C3-C4 area. He also has a very large bone spur in the C7 area, that is impinging on the spinal cord. According to the results, it is contributing to "severe right neural foraminal stenosis and moderate right paracentral canal stenosis." Easy peasy, lemon squeezey, right?

Our family doctor (did I mention she is amazing?) is coordinating with the neurosurgeon, and the physiatrist, so that we can get in quickly for a consult and then schedule surgery. While it is nerve-wracking to have him go in for another spinal surgery, it is also SO AWESOME that for the first time in I can't remember how long, we have answers.

Here's the cool part... we have had many people specifically praying that this MRI would give us answers, and that the results would require a surgery or a treatment that would fix what he has been experiencing. Last night, the two of us prayed together, and our specific prayer was that there would be answers. I can't tell you how often there IS NO ANSWER where the spinal cord is concerned. Answered prayer. I love to reflect on specific answered prayers.

Now, of course, I'm giddy like a school girl, because I feel like there's a solution around the corner, and my man is one step closer to full recovery. Then again, I'm not the one getting ready to once again go under the knife. AND there's some documentation to suggest that the removal of the syrinx can stop the progression of the deterioration, but not reverse it. Let me be clear. Our God is bigger than that. Bob wasn't supposed to be able to walk again at all. There was a chance he would always rely on bowel care and catheters, and medicines that I can't even count. He's walking. He's managing (although right now with a high degree of difficulty) his own care, and driving, and a ton of other stuff. If our God wants him to be fully recovered, if it brings Him glory, then he will be fully recovered. I have prayed since February 2, 2013 that he would be 100% restored. Doctors have said that's impossible. They also said that he wouldn't walk. They also said that he would always have to do this or that.... that he would NEVER do some things that he is clearly doing, even in a weakened state. While I will trust our doctors, and follow advice, I will RELY on the only One who has all the answers.

Specifically pray for strength and peace for my man. He is the one that has to endure the surgery, and go through all the aftermath of healing up... I just have to watch. I believe that this is going to be amazing. I believe that he's going to come out with crazy miraculous results, just like his original accident. I believe it with every fiber of my being, but I am also going to say that even if he doesn't, our God is bigger than this whole mess, and we will stand firm.

So there you have it. Prayers are always appreciated. I will update as we have new info. Love you all.