I really do not like the question “what do you do all day long?”
It differs so much from day to day and moment to moment that having a schedule is sometimes a curveball I miss catching; so there is no simple answer.
Before the wreck the answer was a lot more simple. Before the wreck it was wake up and get kids ready for school. Run errands, set appointments, pay bills, clean, organize, manage the household schedule, keep track of the budget…all this before I went to work for an 8-12+ hour shift. Come home check homework of kids, enjoy the family or deal with family drama (any day is a toss up with kids truth be told). Deal with all the things that comes with having a blended family, in-laws, and being a working mom and stepmom.
In my life before I would often be described as independent, bold, courageous, strong-willed, determined, a goody two-shoes, ethical, self-conscious yet perfectionistic, accomplish anything I set my mind to; a great multi-tasker, and adventurous.
THINGS I DID BEFORE: I was involved in my kids schools activities, field trips, PTO’s, on top of my full time work life. On top of all that Rick (my husband and I) managed to still do stuff with the kids and with each other away from the house. Though I have to tell you work was the main part of our lives as we both worked full time+. I loved to drive. Man did I love to drive. I even have my motorcycle endorsement (yep even used to own two of my own motorcycles before I met my husband). I loved going to the movies, the beach, museums, comedy shows, community events, carnivals, fairs, and other community events/fundraisers. I had a life that made me feel fulfilled and though stressful, exhausting, and full – nothing that a good night’s sleep, a warm cuddle, a payday, or a homemade dinner couldn’t fix. In some ways I believe I wore rose colored glasses and saw the potential and possibility everywhere. I also had a LOT of responsibility and my husband always referred to me as his “walking filing cabinet” (cuz I rarely forgot anything and knew what was going on when and where). I feel I always survived grief and stress with some kind of grace.
FAST FORWARD TO AFTER THE WRECK…..
A total cumulative time in the hospital as a patient 6+ months, literally 100’s of medical appointments, 4 surgeries, 100’s of therapy appointments, tons of labwork, and radiology galore. Near death experiences. Enormous and unwavering pain in ways I never imagined feeling such pain. A complete stripping of the body, soul, and mind through harsh realities about how the world works…..or rather doesn’t work if you are in a position to depend on it for your day to day survival.
Pain pain and more pain. The pain is so much that after a while you build a new tolerance to where the pain exists for so long that you almost don’t notice it because it is so much a part of you that you don’t remember the last time you didn’t have it. Then another surgery brings some relief and you get excited and become hopeful and then BAM something else pops up, or it flares up. All of a sudden, you wake up one day and realize that you are depressed, angry, about all that this “wreck” has seemingly taken from you. You find yourself so deeply exhausted, fatigued, and emotionally overloaded EVERY DAY that you want to cry but you have no tears….only sadness and a feeling of defeat. You look at yourself and you wonder what happened to that busy person who seemingly did everything. Where did she go? You entertain dark thoughts that you keep at bay because if you focused on them they would surely overtake you and swallow you up. Radical acceptance is painful you realize. Accepting that your new limitations, your memory problems, your scattered disorganized, lack of focus, emotionally mercurial self is your new normal. Suddenly you have all these rules about what you can and cannot do, why, when, and yet you keep pushing yourself anyway. At what point does the emotional overload – overload you to a point of no return? Every time I feel I cannot take any more…more is given to me by my body, or the universe that pushes me further down the rabbit hole.
The harsh reality and unspoken truths that no one really talks about as your healthcare provider….is that after extensive injuries is how the picture of your sex life changes dramatically; they don’t tell you that your social life, your work life, and your sense of self identity (unless you fight like hell to stay afloat) all changes; but these are real things that I think about.
Will I ever be able to return to a job again? Will I ever be able to think and function like I did before? Will I ever get my memory back? What does my future or life expectancy look like? How can I get value from the life I have now? How do I get away from living a life that I don’t truly get a sense of accomplishment from? How do I live a life for myself that has meaning, value, and matters? How do I not give up when the obstacles seem so impossible to overcome? How do I be for my kids, my husband, my family, what they need me to be – when I don’t even seem to be enough for myself? How much am I willing to do today which takes away from what I can do tomorrow.
I often think how would people describe me now? Brave, a miracle, survivor, pessimistic , emotional flooding, anxiety, impatient, forgetful, hurting, impatient, boring, scattered, obsessive and compulsive, lacking filters, insecure, intolerant, and riddled with panic, PTSD, irritability and feeling extreme waves of helplessness in this enormous sea of HOPE, love, and a desire to overcome, heal, and accomplish.
That me….the one who longs for normalcy….THAT woman seems further and further from my reach some days. Stricken with a deep-seated grief process as my childbearing days have surely come to an abrupt and non-consensual halt and the barren feeling and realization that having any more children would be dangerous to my body and would also require some kind of bodily performance that my body has seemed to have abandoned and I have been in deep grieving about. You know that song called “Someone that I used to know”…..yeah that is pretty much how I feel about sex right now. It’s how I feel about the ability to be a person who has to let go of the idea of bringing new life into the world. It’s also though how I feel about how I identify with myself as this person that exists now only in the shadows.
Here I am….and here is one more thing that the wreck seems to have stolen….. that level of intimacy from my marriage dented…that changed the dynamics of our relationship.
Take, take, take. These injuries just keep taking from me and my family. I need to change my thinking I tell myself and I do; I change my thinking. I need to change my direction I keep telling myself…so I focus on helping others going through this kind of struggle.
THINGS I DO NOW: Sleep, home therapy programs, medical appointments, research my medical stuff, blog to help myself and others with Polytrauma and TBI, sleep, cope, be the best mom and wife I can with where I am at right now (which is not even close to where I want to be), more activities as my body will allow, and did I mention sleep?
Knowing I HAVE to go in a direction of mind and body positivity to stay motivated (huh…what is motivation?) and having no clue how to get there is very lonely and makes me feel lost sometimes.
I have to be kind to myself in order to move on. Dancing through the dynamics that each day brings is sometimes seemingly impossible. Yet somehow, someway between each excrutiating headache or spasm….I scrounge, pillage and plunder and find a wee bit more courage to get me through the day.
Defeat, Depression, cycling grief and a dedicated struggle to excel and never give up – the unspoken truth of emotional overload from a Polytrauma.