“You Sound Fine to Me.”

“You sound fine to me.” It’s been said so many times in the last 2 year years. Yes. I know I “sound” fine to you. You are not inside my head. I don’t sound fine to me. I am not fine.

I put images and highlights of my life on Face Book. That recipe I made that looks amazing? It’s something many moms I know could whip up after work while supervising homework, finishing up a work call, making sure the dog is fed and walked and also doing double prep for the crock pot dinner for tomorrow. It was the thing I did today. I made an 8 ingredient recipe with 3 cooking steps. It involved inventorying the pantry, measuring 4 things, chopping 3 things and pre-cooking 1 thing to add to the rest. And it took me all day. I had to rest my brain in between so I would not lose attention and focus and burn it all in the final step. I had to measure everything ahead and then take a 90 minute nap before I did more because measuring is cognitively exhausting. Reading a simple recipe leaves me with a fuzzy brain, feeling confused and overwhelmed. It seems crazy to me, but it’s my truth. Following a checklist for a recipe, checking and rechecking my steps, wears me out, causing me to feel like my mind is slogging through pea soup. We have turned into a “heat it back up” household, because the pressure of having to create a meal on a timeline for the same day it’s eaten is so often beyond me. We bought a deep freeze. Now on the days I’m functional and can cook, I try to make recipes in double batches so we can freeze meals for the days I can’t function, or have something else I have to do, like try to keep my job.

Thank goodness for Kroger’s click list. picking up groceries from the Kroger Click list has been happening since the accident. I simply cannot shop and check out and walk to the car and put groceries in the care and safely drive home and put groceries away. I don’t care if It is $30 in groceries or $130. That kind of output finishes me for the entire day, or maybe two.  I am now that person who sometimes parks in reserved disabled parking depending on how I’m functioning on a given day. Yes I’m that person who looks fine, like I’m taking a spot reserved for someone with a “real” disability. You can’t see that I’m hanging on the cart for dear life because my balance sometimes sucks, or that as soon as I get into the store I’m on a tight timeline because those commercial fluorescents burn my brain to the ground like a roman candle, or that by the time I get to the cereal aisle, all the scanning of shelves to find what I need has pushed me to the point I almost feel drunk I want to lay down and nap in the floor, or that by the time I get the dairy aisle or through the checkout, I’m on the verge of tears from exhaustion and so desperate to get home that it’s all I can think about.

Things normal people do every day but that I simply cannot think of right now as I search my brain to try and offer examples to you, cause me to need extra hours of sleep, rest, and keep me from participating in life.

I feel good this morning, so I spend an hour on the phone catching up with a friend. I’m so glad I did. But now I have lost brain time I had banked for something else today and that thing will have to go on hold, or possibly just get partially done and become yet another of an endless  list of partially done projects and tasks throughout our home that I want to complete, but lack the consistent initiative to do. I lose the attention and focus between steps, become lost in or overwhelmed by when I try to organize the process so I just do something else that is easier or sometimes, nothing at all.

I used to work 40 to 60 hours a week: running an adult day program I designed and started and providing a counseling practice for families navigating the daunting and heart wrenching experience of dementia. It was not uncommon for me to go visit angry or agitated clients late at night, or take calls or make visits on weekends-helping people through crisis and stressors that only the health care system and the trauma that the role change of becoming the caregiver of an aging family member can bring. Now, on a good week, I can see a couple of care givers via telehealth for maybe 90 minutes sessions. If it’s a very good day, I can then follow up via email with a few resources. That almost never happens. It’s not generally wise to try because I make mistakes. Most likely I cannot do the follow up and will need a serious nap or a time of deep rest doing yoga nidra or just nothing for the remainder of the day. Those freezer meals sure come in handy on those days, because I absolutely cannot cook and see a client in the same day.

I get lost. Not while driving. Not in the community. But in my own house. Not geographically lost, but I get fuzzy and distracted during tasks. I often require a check list to stay on track. What I am doing today? How I am I doing it? What are the steps. Okay, good. That is where I left off. What is next? Okay, go do that step. Now, what was I doing? Where is the list? I know where I am in the overall task, but what is next? Oh boy. I am getting tired. I don’t know if I can finish this. Where is John? Maybe he can help me figure this out or make sense of this. Now I feel tears welling up. This should be so easy. I have done this a million times. John can help. He asks me questions so he can understand what is happening and help me complete it. But I can’t answer his questions. I can only look and point and give partial information. Words and whole phrases elude me. He’s getting pretty good at contextual clues and charades, but it takes a while. Now I’m actually crying. I’m fine I tell him. Ignore the tears. Let’s just get through this and then I simply have to be done.

I feel guilty. John does so SO much now. He keeps the momentum in our house going. He picks up my pieces so often. He goes the extra mile all the time. He never complains. I mean it. Never. I seriously don’t know what is wrong with him. How he does not get angry, or resent me, or think I’m lazy or pathetic or whatever I’ll never know. In the now almost two years since the accident, he has never once said anything to make me feel guilty. I think maybe he’s broken.

I miss multi-tasking, especially around the house. You know: waking up and tossing that load of laundry in before or right after the shower, moving it the dryer before you get dressed, setting up the French press for coffee and cooking some eggs and toast while you boil water for the coffee and putting extra slices of bread aside for the sandwich you will make for lunch as you pull those ingredients out with the eggs and put the sandwich together quickly while the coffee steeps. Nope. Now I can at least boil water without panicking. John got me a whistling tea kettle for Christmas last year so I it’s harder for me to burn it up. I put a slice of breakfast casserole in the microwave. I don’t try to make eggs and toast for breakfast, at least not when John isn’t home. I haven’t made a “real” breakfast by myself since before the accident. Breakfast requires a lot of quick multi-tasking and timing. I can’t handle that very well, and especially not until I have been awake for a few hours.

After the accident, I stayed at home and John went to work. I would make my way downstairs, eyes unfocused and feeling woozy. I wanted hot tea and toast. I tried. But it was too many steps. I could barely make one or the other, and often enough, neither. If I did make tea, I would then sit at the table, exhausted, staring into space, drink it and crawl back to bed for a few hours. Then I could come down and struggle through making toast. I could have tea or toast for breakfast, not both. John’s parents began making us breakfast casseroles each week. This way John and had an appropriate breakfast that was protein based and not pre-packaged and sodium loaded. Being able to microwave a piece of that instead of trying to make something was an absolute gift. I struggled even with that some days. I have no idea long how they did that for us, weeks and months I ‘m sure. I don’t remember much for the first few months because I was sleeping 20 hours a day. At some point John and I were able to take over making those casseroles ourselves. For over months and months now, breakfast is almost always a slice of some kind of simple breakfast casserole, because that is what I can handle in the mornings.

The anxiety is better these days. I am not so hard on myself. For months after the accident I was in a haze. I didn’t really think much about how I felt emotionally. At least I don’t think I did. I don’t remember if I did. It was so hard to think about anything, that I tried not to think. It was really all I could do to focus on what was right in front of me. Eventually I began to panic. What If I couldn’t recover my speech? What if I couldn’t rehab enough to manage my own basic activities of daily living? What if I couldn’t work? What if my brain didn’t heal? What if my eyes did not begin focusing together ever again? Oh this thinking and adrenaline is exhausting. And it makes my brain begin to fog over. Now I’m exhausted again and need to sleep.

Sleep. Hours of sleep. Countless, endless, hours and days and weeks and months of sleep. 18 hours at time. 12 hours at a time, 3 hour naps  between only 15 minutes of activity or a couple hours of being awake. Going to therapy appointments: speech, occupational, vision, and later, driving rehab.  Trying to go to a friends birthday party or some social event and coming home and absolutely blacking out. My brain would simply stop. Just stop working. I would feel blackness swirling in around me from all sides and I would know I had to crawl into bed before I literally fell over and passed out.

Naps are the new normal. I nap almost every day between 4 and 6 p.m. Sometimes that stretches to between 3 and 7p.m. It depends on a lot of factors. My “functional day” is necessarily encapsulated between 10 and 2. I actively and assertively plan to not have to leave the house before 10 a.m. or do anything that requires cognitive sharpness after 2-3 p.m. I can have a dentist appointment at 10:30 and come home and function for a few hours (assuming I wear my sunglasses, because looking in the light above the dentist chair burns my brain to the ground like a battery that will only stay charged if it’s plugged in). If it’s anything that requires my active engagement, then I cannot count on being able to do anything else when I get home except rest.

I color. I use soft Prismacolor wax pencils and I color in adult coloring books. Often I do this in the evening for a short or long while before bed. It quiets my brain. It moves physical energy and anxiety, it has a clear beginning and end point, the quality is not judged like my professional work is. Depending on how my brain is doing, I can choose what to work on. If my brain is super tired, I choose an easy pattern and just color. If I have anxiety and need to try and focus then I can choose something more complex that requires more of my attention to follow a pattern or attend to smaller spaces. If I’m angry or filled with guilt for not actively contributing to our household, income and lives the way I always had before the accident, I can use dark, bold colors and press them hard into the paper. Some days my brain is so fuzzy or the anxiety so great, which creates more brain fuzz, that coloring is one of the few things I can do. It’s safe. I won’t burn anything. It’s not dangerous, because I clearly should not be driving today. If I do enough of it I might be able to actually listen to an audio book or podcast while I do it which will pull my brain away from being anxious because I no longer have the cognitive energy to attend and focus on something outside my brain while also examining how I feel inside my brain. It’s both embarrassing but honest to say: some days I color likes it’s my JOB. I guess, in a way it is. If it helps my brain, if it helps me to heal, then it is my job. I must heal.  If I can.  It is absolute insanity to let myself compare a day spent largely coloring to the crushing it badass clinical professional I was before the accident. We are not the same people, she and I. We are not comparable.

I have been a licensed clinical social worker for many years. I learned long ago to hear incredibly ugly and painful things with little expression on my face. I know how to pre-select responses for therapeutic and social situations so I am not so pressed in those situations. I seldom truthfully answer “How are you doing?” because most people don’t want the real answer. I think that most of you mean well. I do sound good most of the time because I choose to be in the world and interacting with others when I’m most functional. I have planned my day or potentially even my week around being functional for this situation that we are in together right now so I could sound good to you. It’s all the other hours of the day that I’m struggling.

So thanks. Yes. I know I sound fine to you. I sound fine to me too. But I am not fine.