Sometimes when I sit down to write, my words come out like this, “It’s been a challenging week….” And I proceed to explain. Looking back, it can feelas if every day within the past 2,115 days has been challenging. At times I wonder if we have ever had one good week. But we have, and I need to be mindful of that. That being said, we’ve also had countless hurdles to overcome in recent years, and at times they pile up. They pile in our heads and in our hearts. And while I like to think we’ve learned to handle them better and perhaps are less surprised by them, they are still challenging.
I don’t know what your life looks like. I don’t know if you are a caregiver, survivor, or passerby who cares about traumatic brain injury. I don’t know if you are a doctor, an artist, a mechanic or a teacher’s aide. I do know this, you are a human, and within all of humanity, there is a certain amount of struggle.
In August, we were presented with both high and low points. Our son, Taylor, was able to attempt to return back to work two days a week. Five and a half years after his injury, this is a tremendous accomplishment. But in my heart of hearts, I felt cautious about celebrating or shouting from the mountaintop. I still do.
After getting things settled with social security, his new employer, and feeling grateful for this safe place, we sat back and watched. The watching was difficult. I knew this shift in routine would be far from easy. Working would be a huge undertaking, and there would be a price to pay. We needed to figure out if the risk was worth the reward.
Within fifteen days of returning to work, Taylor lost his brain injury service waiver. The small amount of money he is making exceeds the limits for the waiver category he was previously eligible for. This meant the costs associated with his injury would no longer be covered. It also meant the basics: medications, hospitalizations, emergency transports, therapies and doctor visits would fall solely under Medicare until a supplemental plan could be implemented. There would be a gap in coverage. The gap was about 15 days. We had to hope nothing happened.
And then…it did.
Taylor entered an unexpected medical crisis, which involved needing emergency transport, a visit to the hospital, intravenous medication and numerous tests. The ordeal was beyond frightening, and what was even more disturbing was the fact that when they took him back for a CAT-scan, my mind wandered.
How much was the chest x-ray? The scan? The medications administered? Would he be admitted? What exactly does Medicare cover without the waiver? Taylor was physically safe at that point. And I was thinking about money. The truth is, I already know brain injury devastates families emotionally, but I was reminded it carries heavy financial implications, too.
I also know this: you can't wish hard situations away. You have to work through them. Even if you don’t want to, or don’t feel equipped to, you must. I knew in that moment that every step being taken was necessary. And as I stood in the emergency room with my husband, I let the worry go. (Not forever, but for then.)
While working these internal caregiver struggles out, you discover weaknesses and strengths you were previously unaware of. Both need to be exposed. It is how we evolve and grow into stronger versions of ourselves.
I used to see my caregiver flaws as things to hate and question, but now I see them as opportunities. I also used to have a hard time—okay, maybe I still struggle with this one—celebrating my strengths. But these things are important. It is part of getting through the long haul of this journey, not merely the moments right in front of us. Recognizing the super inside of us, and the areas that aren’t so super. This is how we change. This is how we survive the impossible. And this is how we honor the gift of life.
I value knowing that I can be better. I can be stronger. I can be wiser. I also like to look back and say, "Wow! You handled that well." I don't like seeing myself fail, but I survive it. Failing does not make me a failure. It makes me gain an experience and insight.
Life (and caregiving) seems to be a mixed series of victories and defeats. It is filled with beautiful moments, but then you get pulled back by the cruel moments. Walking through the lovely is easy. Trudging through the difficult is, well...difficult. I guess it comes down to asking, "How am I going to survive this mess?" Sometimes I falter, and other times I soar. But each and every time, I learn.
Each slice of time in life gets to be lived. We have the chance to participate in our response to it. Participating is hard. But it feels empowering when we come through the other side of heart-wrenching events, and it feels good when we recognize what needs improvement.
I recently expressed to a friend that these events make me feel beyond defeated. Watching Taylor suffer. Seeing him weep. Numbing myself to my emotions, while understanding they can’t be ignored forever.
I adore this friend because of her honesty. I find her candor refreshing. She speaks plain vanilla. On this day she said, “Sometimes, I don’t know how you get up in the morning.”
I went home and thought on her words. They were honest and unfiltered, as was the answer inside my heart. I get up each day because I want to.
Caregiver, survivor, whoever you might define yourself to be in this day…I hope you want to, also. Get up. Get messy. Make mistakes. Set goals. Meet them. You may surprise or disappoint yourself, but you are participating, and that is what matters most.
Theodore Roosevelt explained it best, “It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Stephanie jennings replied on Permalink
I really related to your pain. My children’s therapist called this “complicated grieving” . We essentially lost the person my husband was, yet have this new and mostly different person to care for that occasionally seems like a ghost of his former self.
It’s hard to allow yourself to grieve, because technically he’s still here, but factually he’s mostly not.
And the daily drama and trauma of their care does not allow much time for analysis and adjustment.
It’s a marathon, we feel your pain , I commend your efforts !!!
Maria replied on Permalink
You are amazing. Thank you so very much for writing this blog.
Lori Showers replied on Permalink
Hello Nicole! Your words are very moving. I am going to share this with my husband who is a caregiver to his brother. I think this piece here brings to light the problems with healthcare. It is amazing how many people have to choose not to go back to work because they could lose healthcare benefits. I know that is a big topic with my husband as well. I could go on and on about that topic. Thank you for writing this.
Nicole replied on Permalink
Lori, I am so glad it reached you. Please extend my best to your husband. I admire his role as a caregiver/sibling. ~ Nicole