Super Sunday

February 5, 2012

 

Dear Michael,

It wasn’t really necessary that on this most over-hyped week-end, you took it upon yourself to have several super-sized seizures. Dark humor aside, of course you didn’t take it upon yourself--- nothing about this fickle, callous condition is a result of anything you did, do or don’t do. But this morning after the third seizure in 24 hours, all of us in this household are feeling just a little bit broken.

After you slept restlessly for a couple of hours you gamely came downstairs, took your meds, ate breakfast and announced “no naps today” even as your eyes were at half-mast.  I insisted otherwise even when you told me “if tomorrow is a repeat of today it’s on you”. You and I both know that sleep is a culprit in your case. Most often your sleep is disturbed by abnormal discharges in your brain and we can’t even see a clinical sign. Sometimes during sleep you bolt upright three, four, five to countless times and settle back down after just a few seconds. And once, twice, sometimes three or four times a month one of those seconds long tonic movements turns into minutes of intense stiffening impacting all limbs, causing you to bite lips, cheeks, tongue, bringing tears to your tensed eyes. And bringing tears to us who watch--- unable to stop the despicable misfiring neurons. Whoa…………………..that sounds AWFUL.

Yes, it is.

I hate that you can’t even get a decent hour’s sleep. I hate that in spite of being on multiple drugs and a VNS, that in your case, seizure control is something we can only dream about and hope for at some point.  I hate the fear that grips me at night because I am so aware that epilepsy does take so many lives in the darkness. I hate epilepsy with the same tenacity as I love you, your sister and your dad.

I will continue to speak out about epilepsy Michael. Because until the stigma is gone, until people understand and view this condition for the havoc and destruction it can create in so many lives, epilepsy will not receive the funding for research and treatments that individuals who have it so richly deserve.

All my Love,

Mom