Going to the doctor and hearing that the problem you’ve have been having is “all in your head,” is devastating.
I remember when my mom got sick that’s exactly what happened to her. She spent two years trying to find the answer to her pain, nausea, exhaustion, and rashes. It took a trip to a dermatologist to finally discover she had dermatomyositis, an autoimmune disease. Finally being believed was such a relief.
People who suffer from brain injuries and mental illnesses often deal with the same thing. For them, it really is all in their head, but with very real consequences.
When I first had my accident – the physical symptoms were the most obvious. I had difficulty walking, I was dizzy, the light bothered me, I was weak, there was numbness and tingling in my legs and arms and constant migraines Those things are easy to see. But, what happened after I had done my due diligence to rectify the physical problems was, in some ways, much more difficult to deal with. The brain problems remained.
Slowly, I got stronger. Gradually, I regained my balance. I lost some of my light sensitivity. So, I began to look like my old self again.
But, I wasn’t.
Planning, organizing, reading, comprehending, multi-tasking, remembering, and speaking coherently for more than a sentence or two were still challenging. My brain would simply shut down when it was overloaded and I’d just fall asleep. Lots of Occupational, and speech therapy helped with these, but I constantly ran into the problem of setbacks from overdoing it.
It has been a very long process – much longer than I ever anticipated. If adequately rested, undertaxed, and in a familiar setting with few distractions, I can now write and have decent conversations. Take me out of my living room, add a few people or some noise and my abilities begin to suffer.
These issues may be fairly easy for an outsider to recognize, but what about a family who has grown accustomed to turning down the radio, speaking in turns, and lowering expectations? What happens when your current function is mistaken for your former? The cascade of problems that can occur when you interact with people who expect you to do what you have always done because you “look ok,” is very real. And now they are beginning to present themselves indignantly.
Important conversations and plans – long forgotten by me, long assumed to have been acted upon by others, are being revived to extreme dissatisfaction. “I don’t remember.” “I believe we did talk about that, but…” “I have no idea what you’re talking about.” Have frighteningly become all too frequent utterances for me. These problems go beyond leaving the stovetop or oven on – they are more impactful than forgetting to purchase a yearbook or remembering where important items were placed. As I improved, I was able to understand more of what was being asked of me while being spoken to – and I said so. I did not convey the fact that five minutes afterward, I had forgotten all about it. I couldn’t – I forgot.
Now, more than a year and a half into this mess, things everyone assumed I’d taken care of because my outside looked ok, have been left unattended to. A year a half into this mess, they are only now figuring out that there are huge holes – I’ve lost time – I hadn’t done what they thought I’d done – I wasn’t who I appeared to be. This is as much a shock as biting into a beautifully crisp and delicious looking apple only to find it decayed and worm-eaten from the inside out.
It’s not just shocking for them – it’s shocking for me. How could they not see? How could they not perceive the tremendous difference? Was I too good at pushing through, figuring it out, hiding my struggle? Or, were they not paying attention? Did they momentarily forget the monumental battle it was for me to even get out of bed – to walk – to speak – to remember? Did they forget because the biggest problems that remain are all in my head – my brain – my eyes… because they couldn’t see? Did they revert to their old expectations without realizing my support beams were still under construction?
Perhaps it is unreasonable to assume that they could be as intimately aware of my internal struggles. They don’t see when I write the wrong words over and over, my frequent pauses when I forget mid-word how to spell the simplest things. They don’t hear me whispering the items I need to remember over and over and over until they are accomplished. They aren’t around when I do my brain exercises and don’t see when my eyes close uncontrollably because of overwork. They aren’t linked to my multitudinous reminders programmed into my phone. They only see that, usually, I am again capable of making dinner with more than one dish and have it all ready at the same time. They no longer have to eat in stages – here’s the meat – 20 minutes later the rice – 10 minutes after the vegetable. They do not feel my inner sorrow at not remembering a “shared” memory. They are unaware of the times I scrambled to do what I had forgotten when I was reminded in passing.
It is tempting to shrink, explode, lash out, or despair rather than to keep struggling through. Then my mother’s voice permeates my consciousness, and I hear her call down this blessing upon me, “I will restore the years the locusts have eaten,” and I am encouraged. I am not in this alone. Though my struggles are unseen by man – they are known by God, and He can restore me.
So I will restore to you the years that the swarming locust has eaten,
The crawling locust,
The consuming locust,
And the chewing locust,
My great army which I sent among you.
You shall eat in plenty and be satisfied,
And praise the name of the Lord your God,
Who has dealt wondrously with you;
And My people shall never be put to shame.
Then you shall know that I am in the midst of Israel:
I am the Lord your God
And there is no other.
My people shall never be put to shame.