I was sitting in the hallway at the hospital. I’d been living there on and off for weeks, unaware that I was existing in a state of traumatic hysteria and exhuastion. I called a friend, who was trying to reason with me about my need for a break. Her words moved like bees around me buzzing. “If you’re really going to run this race for the 2 years the doctors are talking about.. you’ll need your rest.”
Two…. yeeeeaaaars? I thought. Two entire, whole years, complete with four seasons, Christmases and Easters and summer vacations? TWO WHOLE YEARS FOR US TO RETURN TO NORMAL LIFE? It can’t possibly take that long.
I’d been running the race for 6 weeks, so two years seemed unfathomable. I was operating on a powerful combination of ignorance and unfaltering love. I began researching brain injury, ferociously gobbling up anything I could learn about it, and talking to brain injured people and their caretakers. I met other people in the race; ragged runners with over-worked muscles and tired hearts. I met spirited runners putting one foot in front of the other as the terrain before them unfolded. I met runners new to the race like me who were sprinting, unaware of how long they’d need to run. And as time passed, I began to realize that 2 years was the “early stages” of TBI. Recovery was a life long process.
Today, May 8th, 2015 is a day I’ve meditated on for a very long time. In the TBI realm, the 18-month mark is significant in those precious 1-2 years that doctors give for healing (I’ve learned that this is a myth btw – healing continues though slower for as long as you are willing to pursue healing). When we reached 6 months and 1 year, I took stock of our pace of recovery, accomplishments and how far we had to go, and I wondered at 18 months where we would be. Today, I am doing that again, looking ahead to that 2 year mark, but more with a feeling of fierce accomplishment than of fear or worry. I feel like we deserve purple hearts of bravery for getting to this point. Seriously. We are warriors battling TBI every single day. I was so woefully unprepared for this journey that I almost have to laugh thinking back to my early expectations. And if I could go back and talk to my former self, curled up in a ball on the floor of the hospital just 6 weeks in, I’d give her these thoughts to chew on while she laced up her sneakers.
1. You will become a fierce advocate: A brain-injured person needs someone who will go to bat against the doctors and insurance companies. Without this, they will fall victim to the system. This is where you’ll put 50% of your energy. You will learn how to speak up, stand up to bullies, and how to get what you need for your boyfriend. This will make you a much stronger person, & will spill over into other areas of your life.
2. Don’t bother trying to keep a normal life: You will begin to feel like a Martian. Your life will no longer resemble that of your peers. Drinks on a Friday night with a friend will feel perhaps uncomfortable, because you won’t know how to add to a conversation entailing a saga over her husband’s beard trimmings in the bathroom sink. TBI will make you realize what matters and what doesn’t matter. This is a blessing, but you won’t feel like it is, and you won’t feel like you fit in many places anymore.
3. TBI will bless you with enormous gifts: You will learn a level of patience that you didn’t know existed. You will learn to surrender control over almost everything. You will become a student of life. You will learn where to expend energy and where to hold onto it. You will unlock profound truths about the nature of suffering. TBI will increase your compassion. TBI will increase your gratefulness. TBI will tear your heart open every day, and the pain and love will fill it to bursting.
4. You will witness a daily miracle: Miracles exist in what is possible when two human beings exchange sacrificial love. You will watch the love in your heart resurrect Patrick, and you’ll watch his love for you heal your wounds. The robust, animated man you knew will be reduced to an infant-like state, and you will help him find that strong man again. He will be a mirror for you to look into; you will see your weaknesses and your strengths. It will be the most important work of your life.
5. Almost everyone will leave you: In the early stages, people will be very present for you & him. They will call. They will visit. As time passes, they will begin to disappear. Eventually, they will never call, visit, or help at all. You will do it alone. Your exhaustion will play with your emotions. You will feel abandoned, but angels will present themselves to help when you think you can’t go on. Do not let resentment or bitterness creep into your heart.
6. You will wear many hats: Girlfriend. Advocate. Caretaker. Accountant. Occupational, Physical, & Speech Therapist. Cognitive-Behavioral Therapist. Physical Trainer. Researcher. Mother. Lover. Confidant. Maid. Chef. Jailer. Psychologist. Teacher. Role Model. Bread-Winner. Chauffeur. Life-Coach. Enthusiast. Encourager. Healer. Fierce Protector.
7. TBI will test the limits of your physical, emotional, mental & spiritual strength: You will quickly realize why TBI destroys families and relationships. You have never been as tired as the exhaustion you will soon experience. You will drag your body through the day. You will experience cognitive decline; forgetting words, unable to finish sentences, unaware of what day it is, and unsure how to go on. You will try to focus harder and harder on the tasks ahead, unable to process actual thought. Your body will hurt. You will doubt your faith.
8. Doctors are not infallible: You will have to be so well educated about brain injury that you can tangle with any doctor you might meet with about any topic they will want to discuss with you. Don’t take their opinions as Bible truth. Get second and third opinions. Be extremely wary of over-medicating your survivor. Approach recovery as holistically as possible. Look into HBOT, acupuncture, Brucker Biofeedback, Nuerofeedback, Tumeric, Fish Oil, Reiki, Massage, Yoga, Medidation, and CranioSacral massage. Listen to your gut. Always remember that while they may know the procedure, YOU know the person.
9. Recovery is incredibly slow: Go out today and plant a seed for the most beautiful tree you can find. Cushion it gently in the damp, rich soil. Now sit in front of it and watch it grow for 567 days. With your eyes so fixed on the sprout, you will not be able to see the growth, because it is happening so slowly. This is TBI life. You will stop seeing the growth. But he is growing. And so are you.
10. You can’t heal him if you destroy yourself: Perhaps the hardest lesson for you to learn, will be how to take time away from caregiving to practice self-care. This will be nearly impossible at first, but as he recovers, your world will expand enough for you make room for this again. Please do this. Please honor the temple of your body and spirit. You can’t destroy yourself and heal him with nothing left but your own ashes.
As I reflect on these 18 months, I am amazed at how enormously far my Patrick has come. After his TBI, he couldn’t breath, eat, talk, or move on his own. So when I see him walking, talking, laughing, eating, playing drums, and regaining the use of his left hand, my heart never ceases to appreciate every gain. Patrick is more in his body again; the fog keeps lifting, and the nuanced quality of awareness keeps returning. We have far to go, but flashes of the intangible qualities that make him “him” keep coming back. I never cease to feel gratitude, even when I am at my worst.
Tonight we are going to dinner and a movie. Only those who are running this marathon with us can understand the significance of something as mundane as dinner and a movie. We’ll be out with all the “normal” couples on Friday night, who think nothing of the normalcy of their date. They’ll likely will take it for granted. But we won’t. We will enjoy every moment. And we won’t try to be normal. We are warriors after all. Warriors who are gobbling down two dixie-cups of water as we turn a corner, and are pushing on for a finish line we’ve been told doesn’t exist. Warriors who will keep running, as we reach our two-year mark and beyond, accepting gains wherever possible on this life-long marathon together. Warriors leavings four footprints on the track instead of two. Warriors 18 months in, and still in love.