In late November, my doctor suggested that I should begin seeing a rehab specialist for brain cancer patients. I dismissed her suggestion, reminding her that I am totally fine and functioning normally.
A few days later a scheduling office called to set up an appointment. It's amazing how my doctors and nurses hunt me down. They call to remind me to get blood work. They call to remind me for prescription refills. They call to set up all of my appointments. I guess that with my diagnosis they can't rely on forgetful, recovering people to remember all of these things.
When this scheduling office called I didn't even understand who it was because I was determined not to go to this doctor!
But, at my first appointment, I started to realize why I was there.
Through all of this I have been trying my best to keep it together and to get through the days as normal as possible. I push myself very hard to keep up with tasks and to take care of my family.
After a few questions and some routine exams, the doctor started pointing out some things that have not been going so well.
I know that everyone is forgetful and everyone loses their keys. One particular week I lost my keys and wallet multiple times a day and Paul searched and searched the house with me, trying to help me through my frustration. He patiently looked with me every time, never getting annoyed or exasperated. He could see how much sadness it brought me to feel like I couldn't make it through simple tasks.
When I flew home from Thanksgiving, I realized the night before my flight that I had misplaced my license. I thought I wouldn't be able to get home. If I waited another day, Paul could send my passport in a same day air transaction. He sent copies of my passport. We looked online to see what to do.
When I arrived at the airport, Delta refused my luggage because they could not have bags for an unidentified person on the plane. Kelsey had to swing back around after dropping me off to get my bags and take them to her house. In the airport I had to go through a special TSA screening full of drug and bomb powder testing, many identification tests, thorough investigation of my check book, credit cards, etc. After all of this, and two scared kids in tow, they let me get on the plane (Thank God!) I was praising God for this undeserved grace the whole time.
When we got home I had to go and buy all new underwear and pants for the kids because I had packed them in our luggage.
That same week I left my flat iron on for two days, I left a burner on for an entire afternoon and I took a nap after Paul had pre-heated the oven (as I asked him to do).
I was feeling overwhelmed by all of this, as if each day something else was slipping out of my control. I also started to notice a slight inability to recall words and events which was also scary to me.
The last straw was that at my kettle bell class I couldn't follow the directions for the work out. The trainer kept explaining it, but I just couldn't hear her and comprehend the sequence of the moves.
I started to tear up in the class and I wanted to leave. All I could think about was how disappointed I was in myself.
So, after discussing all of this with the doctor, I started to realize that there was a pattern that I hadn't previously seen. I kept telling her that I was just trying to get back to my old self.
She explained that my brain simply can't do what it used to do. Though I was not in a car accident, my brain is responding as if it had severe head trauma. A brain cannot distinguish between a tumor/craniotomy and other head trauma.
She carefully and kindly explained to me that I need to stop focusing on my old self and let it go because I likely will never get back there. That was a hard blow to hear. She worked with me to find some new ways to begin to live in to my new self.
She asked me to consider regular help with the kids, even if it means taking them for a few hours so I can have extra time to finish things I need to do. She also encouraged me to use a meal service occasionally and to consider hiring a house keeper. I was pretty adamant that I didn't need these things. I don't work and so I should be able to take care of these things.
She shared stories of other brain tumor patients and their struggles. For most people, it used to be easy to run multiple errands and fit in social events, free time and more. For head trauma patients, the brain slows down significantly and can't withstand a long day of errands.
The reason I have generally felt so good is because my brain is working extra hard to compensate. She shared that I don't have the capacity to do as much as I think I can and so my brain shuts down when things are complicated or confusing.
We worked on tangible solutions to help me to make it through routine days. Paul ordered me a tracker for my wallet, keys, phone and purse that allows me to know where they are at all times.
When I travelled for Christmas, I had Noah ask me every ten minutes in the airport to check for my wallet and phone.
Another dimension of this is that because I am so high functioning, no one (except Paul) can really see my struggle. If I mention my forgetfulness, often people downplay my experience and compare it to their own forgetfulness. I totally understand this type of empathy, but the confusion that I experience is quite different than an average lost wallet. In addition, it is emotionally hard for me because I know what is going on inside my head and I am constantly reminded of my limitations.
Having said all of this, my energy and joy is true and real and not diminished. I am not "faking it" when I appear normal. I really do feel great. But the patterns and the consistency of my limitations will continually need to be addressed and I need to focus on new ways of coping with all dimensions of my outcome.
I know in theory that none of my friends and family are disappointed in me. But in reality when I don't return letters or keep up with emails or remember the details, I feel a sense of loss and I can't help but think that in the routine of daily life, others notice my lack of response.
Perhaps mostly my children. When they want to play a game in the evening or want me to do one more thing, there simply isn't anything left in my exhausted state and their sweet, loving faces beg for more of me.
And so my doctor and I are working on carving out that space as well.
These weeks have been both eye opening and a great struggle for me.
And so I ask for your prayers as I work on moving forward instead of looking back.
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