I often see “everyone remembers exactly when the pain began.” What they were doing, day, minute, even to the second.
But do you remember the day when the seriousness of what was happening hit you? A moment of clarity. When you realized you were screwed over by your own body?
That moment is clearer to me then the day the pain began. Which is understandable I suppose because the pain made me pass out.
I have a twin brother. We did everything together growing up, almost inseparable. I was the crazy imaginative irrational rascal and he the stoic rational calm brat. We made a great team. When something was amiss Mom and Dad automatically yelled for the “twins”.
Collage and the Air Force separated us for the first time. I had been trying to call my brother since my first seizure with no avail (time zones, phone tag), so a week later I e-mailed my brother the details of my adventures and warned him that I needed to speak with him the evening of my first neurologist appointment and to call me with no regards to the time. The appointment did not go well.
Brother demanded a full account of my pain and why he wasn’t told the seriousness of it. He sounded angry, he never sounded angry. He was talking fast and rambling a little. That is what I do when I get emotional. He has a facial expression and a slight tone, not a slightly raised voice and short pauses. I hadn’t even told him how awful the appointment had gone yet. When the time came that he paused for that account I was surprised by my calm tone and reassurances that we had a game plan. It would not do. I needed to transfer to university down the road and live with him. He needed to care for me. Suddenly I am reminding him that he was awaiting orders to ship out. That the plan is irrational. For the first time my brother said something irrational and had deviated from his calm air. For the first time I told my brother no without being persuaded or reaching a compromise. (If he was not awaiting orders I would have transferred.)
My brother was scared and at a loss of what to do. It scared me. It made everything that was happening sink in. I realized that my internal dialog was referring to myself in third person. I wasn’t going through this, it was “Crystal” from “The story of her life.” I was confused, why did my brother just behave so? Why do did we to go against our characters? I wanted to go but couldn’t, he should have said that. It was the first battle lost to my illness. I realized my illness is forcing my relationships to change. The illness had taken a few things away, this made me acutely aware of them. That brought it all together. The reality, seriousness, gravity, life changing tragedy that has darkened the doorstep of my family. This moment was worse then the moment the pain started. The wave of emotions set off a migraine and I cried myself to sleep.
To give you an idea, I remember him loosing his calm and treat me this way only once before. I almost drowned while white water rafting when I was about 8 years old. He pulled me out of the water and when I woke up he was rebuking me. I did not respond with rationality. I saw I lost my oar, afraid of getting in trouble, I tried to go back into the water to retrieve it.