I am scared. I am not scared for the reasons one may think. I am scared of SUDEP every time I wake and Ryan is sleeping incredibly quiet. I am scared that the anger will take a toll on our relationship. I’m scared that I won’t be able to hide how scared I am every time Ryan has a seizure.
So yes, I’m scared of coronavirus but not for the same reasons everyone else is. We are both working still, albeit remotely. The daycare is still open, for now. We buy in bulk and stock up routinely so we have food and paper goods. We practice good hygiene and universal precautions on a regular basis.
Coronavirus scares me because Ryan can’t get the surgery that could have alleviated my fears of SUDEP, of anger issues, of my strength, of epilepsy. It scares me because I question what type of treatment will Ryan get if he has a seizure that goes too long or causes him to seriously hurt himself. It scares me that the funds we had to cover what we could now will be gone by the tentative new surgery date. Most of all it scares me because there is no telling when all of this craziness will end and that it cause the surgery to be postponed even longer.
It has been a very stressful couple of days these past few days. It all started with the call to Ryan to tell him that the surgery is postponed to next year. There is no treating this quarantine like a party or like it’s a good time for family bonding. Joking about it doesn’t even relieve the stress. No, we are struggling to run each day like always…because we have no choice to keep routine the same…but coronavirus is making it more and more difficult.
My writings were never intended to focus on the impact of coronavirus on epilepsy. Rather they were intended to help others learn about epilepsy from a person who doesn’t have it but lives with it. Now it has all become commingled. And that is a fear come true.