It’s nearly 8 o’clock at night, but the sun is still shining. Below our apartment balcony, the beach is still full of life and activity. The sun is reflecting off the waves, and tipping everything with a beautiful, golden pen. Tonight there will be a full moon, to welcome in a new season on the longest day of the year. Summer is finally here.
For going on three years… I have been without a sense of the seasons within my own life. The natural forward momentum that a person in their late twenties and early thirties would experience, was suddenly halted by TBI, and has been halted forever since. I shelved my dreams, music, friendships, and just about everything else, to pour myself into the task of bringing Patrick back to life. And that is what TBI caregiving is by the way: Doctors may keep them from dying, but we, their loved ones, bring them back to life.
Despite the sudden stop-sign, I still grew immensely as a person through caregiving. My patience, my understanding of love, my wisdom, empathy, and knowledge of what truly matters (not to mention TBI).. has all grown. And yet somehow, these lessons were learned while in a state of total disconnect from myself, my own voice, and my own needs/wants or desires. I lost myself in a way, so that Patrick could find himself again.
Over the years, people have been ever eager to tell me to “take care of me.” With varying degrees of genuine concern, they would tell me,“you cant take care of him if you don’t take care of yourself” or “make sure you make time for yourself” etc. Hiding my fatigue, frustration and sadness, I would smile and say “Yes, I know. You’re right,” but inside I wanted to scream and punch the walls. Because they were right. But that didn’t make the advice any less plausible. It was, as is many pieces of advice given to a caregiver, an impossible idea, dished out to me with love, but also ignorance.
Without aide, respite or help, I cared for Patrick alone. I don’t recommend this as a means of recovery, but some people no doubt, like myself, had no other choice. God gave me a strength I never knew I had, and an unbelievable support from our church, and I persevered. But I used everything I had in my arsenal to do it.
By the grace of that same God, Patrick has kept improving. To think that just a year ago, he was still in a wheelchair, missing half of his skull, and unable to walk with the walker unguarded. He had no Bioness and wore an AFO. His left leg was incredibly weak. He was on so much more medication. And he couldn’t really be left alone for more than an hour.
Our summer this year, looks beautifully different from the summer of last. But if Patrick had stayed at that stage of recovery, (as many TBI survivors do), I don’t know what I would’ve done. There are so many amazing people out there, who care for survivors who are low-functioning and aren’t improving 2, 3, 5, or 10 years out. I don’t know how they do it alone, honestly. Because at least in our case, we were able to keep moving towards an increasingly expanding light. We are still moving towards the light. And that keeps hope alive for us.
Still, it is only when your survivor has reached a certain point in recovery, that “take care of you” becomes possible (or even on your radar). I’m excited to share, that recently, Patrick and I reached that stage! I recognized and greeted it with tremendous gratitude, acknowledging with an exhale that I’d been holding in for years, my own spirit dwelling in my beaten body. Exhaling gave way to space, and I saw just how awful I felt, living in a vessel that was depleted, and had nothing left to give. So, I bought health insurance for the first time in 4 years, and decided to get a check up, and some blood work done.
I didn’t expect anything from it, but this one small step, lead me to a four week journey, in which I, not Patrick had the doctor’s appointments, testing, and waiting rooms. And it was Patrick this time, holding my hand, and encouraging me that things would be alright. The roles were shifted, and I learned a valuable lesson very quickly: I am far more uncomfortable being cared for than I am being the one who is doing the caring.
About two weeks ago, on a random Tuesday, I got some sobering news while sitting in my paper gown and socks on the doctors table. Elevated liver enzymes. Hyperandrogenism. Hypothyroidism. Poly Cystic Ovarian Syndrome. Elevated Bea Creatinine levels. They said “chronic” and “incurable” but “treatable through medication.”
As I drove out of the parking lot, my head was swimming.
I went home, armed with all this information, and a script for more testing. And a strange thing happened: the same woman, who had spent almost 3 years scouring the internet and devouring anything she could on brain injury, felt no real desire to research her own damn medical issues! I was shocked, and kind of appalled at my own disinterest.
Upon further reflection, I realized that I simply didn’t remember how to care for myself. I couldn’t turn off the switch and get out of “caregiver mode.” Nothing else was on my radar, and I almost lacked the ability to shift gears and put the focus back on myself.
I wondered….Was a caregiver the only thing that I had become?
It was a question that deserved real exploration. And I quickly found that just because Patrick was well enough to warrant this shift, that doesn’t make it an easy transition. In fact, it’s hard as hell. Because despite the fact that he is doing well, he still has impairments that require a huge effort to face head on. But faced with the knowledge that my own health had taken a huge hit, I made the only choice I could: I shifted the focus onto myself. Or at least, I began to make a real change.
I went to a nutritionist. I figured I should take the same holistic approach that I had taken with Patrick, and encouraged so many others to do. I gave her my blood work, symptoms and diagnoses, and she came up with a nutritional healing program to assist me. She took a live blood sample, from which she was able to determine many things about my health – primarily that my gut, adrenals, and thyroid were shot, and I was completely depleted of minerals.
“If you were a car, you’d be on E.. nothing but fumes,” she told me.
“Duh.” I thought.
I also had an almost toxic level of yeast, candida and fungus in my blood. Though I drink almost no alcohol, my liver enzymes were high because my liver has been converting the yeast into alcohol to process it. As a result, I have very mild cirrhosis of the liver. It was all rather shocking, but for the first time, in a very long time, I realized how large the disconnect had grown between how bad I felt, and how sick I had become. (Note: I’m sharing this rather personal information with you guys, with some trepidation, but with the hopes that it can help another caregiver out there).
The good news, is that my nutritionist felt confident that my medical conditions could be healed without medication. So, like I had so many times in the past few years with Patrick, I shelved the suggested meds, and went rogue.
I’m on a seriously strict, 90% plant based diet, and taking some supplements. Patrick has been tremendously supportive. He’s trying his best to do as much of it with me as he can. I couldn’t ask for a better partner.
I usually work my tail off in the summer, playing as many gigs as I can to make extra money. But I’ve opted this summer, to instead focus entirely on my health. I want to sit on the beach and watch the sunset. I want to swim. I want to go to yoga. I want to eat nutrient dense foods. I want to sleep. I want to listen to the waves crash. When I play the piano, I want to be present at the bench, and the gig. I want to explore my health; physical, mental, spiritual and emotional.
My summer mantra is “I Matter.” Two powerful words. And though it’s still very, very challenging for me to embrace them, I am making it my full-time job, to find the balance I need between myself and the man I love, so I can continue on this journey as a kick-ass caregiver.