We all have fears, and for many of us they rule our day to day. For my son, they have ruled the night for weeks. In three weeks, there were only 2 nights when he did not tap me on the shoulder between 3:30 and 4:15 to report he had a nightmare. On those two nights, he woke A to play. He needed reassurance we all live. In the middle of the night, his worry blots out any ability to make good choices.
For A, it is a fear of not being accepted and loved which seems to concern her most. It’s a fear which seems aggravated by uncertainty in her ability to read emotions. I have lost count of the number of times I have heard, “Are you mad at me?” Yes, we get frustrated. Try as we might, I don’t think we understand or remember the built in pause her brain has when stressed. I keep trying to remember the built in pause might serve her well later. Taking the time to work through stressful situations is a good skill to cultivate, even if we don’t understand why she is still processing how to take off her shirt while the rest of the family waits for her to get dressed in her PJs. What is simple for one can be difficult for another, and the difficulty meeting the expectations of others is stressful. I feel that stress too. The stress makes things more difficult, and suddenly fears of failure and the social reactions to such failure become a heavy burden making everything harder.
For me, I fear what my MS will do to me. Recently on patientslikeme.com there was a thread on why those of us taking Tysabri continue to do so in light of the risk to develop a brain infection (PML). Evidently, the risks increase over time on Tysabri, but I have never seen a risk greater than one in a hundred. Meanwhile, I know how I was progressing prior to Tysabri. I had terrible balance to the point of the only exercise I did was use a rowing machine (falling 6 inches is no big deal). I had terrible distracting headaches to the point of puking on the side of the road more than once. I had greatly decreased sense of touch below my belly button and some bladder issues which I now know is frequently a precursor of trouble walking in the future. At one point, I was hospitalized when I lost the ability to swallow. So while I fear PML, I fear my MS more.
I fear not being able to provide for my family. I fear not being the father and husband they deserve. So I take what risks I can to give me the best chance to stay “me” for as long as I can. For while I am taking tysabri, using the most aggressive treatment available, I fight the only way I can to retain any ability to help, to matter in some positive way.
I suppose we all fight our inner monsters. We do what seems most reasonable at the time whether it is seeking reassurance from our loved ones, freezing in thought and body, or acting aggressively to forestall the source of our fears. The hard part is maintaining the perspective from which we can discern when our actions are working against us, costing too much. For this, we (I) need the help of our trusted family to set us (me) straight.