Following posted with permisson from next of kin


This story is about Raymond P. Hasher III, who passed away from epilepsy at the age of 23 years old.
It all began back in 1995 when I was pregnant with our daughter, Colleen Rae. How excited Ray was but always disappointed when I got my ultrasounds done because, for some reason, Ray would black out because of the lights in the room so he would never go in. We never thought much of it. From 1995 to 2000, Ray always complained of certain lights and blacking out. "Maybe you need glasses?”, I used to think. Who ever would have thought that Ray was showing signs of epilepsy?

In January of 2000, Ray woke up one morning and had a grand mal seizure. This happens when the whole brain is suddenly swamped with electrical energy. The seizure often starts with a cry caused by air being suddenly forced out of the lungs. The person falls to the ground, unconscious. The body stiffens and then begins to jerk. The tongue may be bitten. A frothy saliva may appear around the mouth.

Breathing may become very shallow and even stop for a few moments causing the skin to turn a bluish color. The seizure should end naturally after a minute or two. When consciousness returns the person who had the seizure may feel confused and sleepy. Ray was in the hospital for three days after his first grand mal seizure. All tests came back normal. "We don't know why Ray is having seizures", said one neurologist from the hospital.

From January of 2000 to January of 2002, after hundreds of doctor appointments, ambulance rides, emergency room visits, hospital stays, changing medications, Ray's seizures got progressively worse even with medications. He would tend to have his seizures every other day and always in the morning upon waking. Some days Ray would have two or three seizures in a row. Ray’s seizures would first start out with a myoclonic seizure, which consist of sudden, brief muscle contractions that occur singly or in cluster and usually involve the upper extremities without impairing consciousness. Ray usually would spill or drop things during a myoclonic seizure. Then his myoclonic seizure would turn into a grand mal seizure.

Through these difficult years with learning to deal with his epilepsy, Ray and I felt as if the doctors' would not treat Ray because he had no health insurance and was told by his doctors’ that he should apply for Medicaid, which is a jointly-funded Federal-State health insurance program for the needy, low-income, aged, blind and/or disabled. After getting numerous doctors' notes stating that Ray could not work because of an uncontrollable seizure disorder, again and again, Ray was turned down for Medicaid. It finally got to the point that Ray would have a hard time getting a doctor’s appointment or getting his prescriptions refilled because he did not have the money and Medicaid would not approve him for coverage. And at this time Ray’s seizures were getting more uncontrollable. "I'd rather have cancer than to go through this", Ray had once said.

A couple days before Ray's death he ran out of Diazepam, which was one of three different medications that Ray would take for his seizures. Diazepam is a widely used drug for acute management of all types of seizures. Ray always used to say "I don't know what I'd do without my Diazepam. It's the only thing that helps calm my nerves." Nerves were one thing that would trigger Ray’s seizures. Ray called his doctor and tried to make a doctor's appointment and to get his Diazepam refilled. His doctor refused because he had a balance with the doctor's office. After that, we found Ray another doctor but the new doctor couldn't see Ray for another week. I then had to take Ray up to a local hospital to get his Diazepam refilled. The hospital told him that, by law, they can only give him 10 pills of Diazepam which would only last him five days because he would take one pill in the morning and one pill at night. "What about the other two days?", Ray and I both thought. "You'll be okay Ray. It's only two days", I told him.

The first day that Ray was without the Diazepam, he had a severe grand mal seizure when nobody was around that turned into status epilepticus. Status epilepticus is when a seizure lasts more than thirty minutes or it could be the occurrence of serial seizures between which there is no return to the same level of consciousness as occurred prior to the seizure. Ray ended up suffocating in his pillow during this. Ray was only twenty three years old.



Special Hugs to Bridgette and Colleen