Wednesday, June 25, 2014

Not Saying Out Loud

May 17,2012


I’m not particularly superstitious, but I always hesitate to say how long it’s been since Michael’s last extended tonic seizure because I’m afraid I’ll put the jinx on things and somehow by just saying it out loud this current peaceful spell will be broken. So…shhhhhhh.  It’s been over three months!! Wow. I think this is the longest stretch in several years.


Mind you, epilepsy still hasn’t taken a back seat in this household. Michael still experiences frequent, milder tonic seizures during sleep so his brain and body are still assaulted on a daily basis. The ingestion of Felbatol, Zarontin, Zonegran, Lamictal XR, Diamox and Clobazam every day often causes fatigue (duh), makes it difficult to focus and remember and alters  mood just to mention a few of the med’s effects..


Michael is finishing up another semester at Cal State San Marcos today. I remain amazed that he can concentrate on any course at all, never mind two. It takes just about every spare moment of nearly every day for him to study, prepare papers, post to education blogs, and generally just be ready to attend two courses two days a week.  


I know we are luckier than a lot of families dealing with epilepsy. After all, Michael IS attending college. He WILL graduate someday and hopefully secure a job in media; so he has a good chance of realizing his dream. If his seizures eventually are controlled---and I just have to believe that they will be---he may be able to live independently one day.


On the other hand, as I have previously ranted on many occasions, no matter how much better off Michael may be than others with epilepsy or for that matter, other chronic health conditions, the current status remains absolutely unacceptable to me!   


I will not- cannot- stop talking about this fickle, callous condition which takes moments, days, weeks, and years from lives with reckless abandon.  How can I possibly stop when I know EPILEPSY KILLS MORE PEOPLE ANNUALLY THAN BREAST CANCER yet receives a mere fraction of that cause in research dollars, public awareness and compassion and understanding? I am NOT saying we shouldn’t pay attention and  promote funding to obliterate breast cancer. What I AM saying is that somehow, some way- one by one and united together- individuals with epilepsy and their parents, spouses, siblings and friends must work diligently to raise epilepsy awareness to another level.  We must.


I may not want to say how many days since the last seizure out loud, but there is no way this voice will be silenced until the motto of the Epilepsy Foundation is achieved.


“Not another moment lost to seizures”.





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