Yet, between Dec. 26, 2009 and the first two weeks of January 2010, my dear husband had his first three seizures. There was no warning. There was no family history. He never did drugs, drank alcohol excessively, or engaged in any major vices that can cause seizures.
They just happened to this healthy 31-year-old father who had sacrificed a career to care for his infant daughter. Four years later we still don't know why. We have theories, ideas, possible causes, but they are all simply guesses. And that is likely how it is to remain.
We are not alone in wondering why. Whether it's seizures, the untimely death of a loved one, or dreams that are crushed, I dare say we have all wondered why in life. Then you realize that dwelling on that question can ruin you more than the tragedy itself. You cry at night, then put on your big girl panties in the morning and live each day that's been given you. Just focus on that day. One day at a time, you will get through.
And focus on the good times. I took this precious video of little Adria in early January 2010, around the time of the first seizures. It should make you smile as you read this difficult story...
His second seizure, which was the first time we realized what was happening, came on New Years Day 2010. What a way to welcome a new year and a new decade!
Adrian relives the first time we realized he had seizures...IN HIS WORDS
Within a week following the first strange episode, I had
another seizure and there was little question as to what it was. That night I
couldn’t sleep and didn’t want my restlessness to keep my wife awake so I had
gone to the guest room to lie down. I must have gone to sleep at some point
because when I came to I was sitting on the edge of the bed crying and in more
pain than I had ever experienced. I think Julle was there with me. She had woken
up and realized that I wasn’t in bed and come looking for me. My shoulders were
in excruciating pain because I had seized hard enough to dislocate them. I had
bitten a thumb size chunk out of my tongue during the seizure so there was
blood everywhere; all over the bed, floor, walls, ceiling and me.
Julle called
my parents who came up right away and they unanimously decided to take me to
the emergency room. Once there they gave me morphine for the pain and started a
battery of tests. Shoulder x-rays, EEG, and I can’t remember what else. They
were able to tell us for sure that we were dealing with the beginning of
seizures and told me that I needed to get set up with a primary care physician
and a neurologist immediately. This was a foreign concept to somebody who had
never had a doctor before.
The next few weeks went by with a flurry of activity. We
found and set me up with the necessary doctors and had the first appointments.
Yes, the neurologist assured me I had seizures and more than 90% of seizure
victims never find a cause for their condition. “You shouldn’t worry though,”
he said, “It’s just a simple matter of finding the right medication to control
the seizures and you will be able to resume your normal life”. HA! And then the
hammer fell. The state of Delaware, most states actually, requires seizure
patients to surrender their driver's license for a minimum of six months and are
cleared by their attending neurologist. On top of that, the meds I was put on
had side effects that were almost as bad as the side effects of the seizures.
I can’t really describe how we felt then. We were lost,
confused, helpless…….., and I was hungry. When there is a hole in your tongue
big enough to put your finger in you are very limited to what you can eat and
steak is definitely not on the menu. We talked and talked and talked as we
drove here, there, and everywhere. I had more EEG’s, MRI’s, and I gave blood,
blood and more blood. I did standard MRI’s, high resolution MRI’s , maybe even
cartoon and anime MRI’s. It was hard but I just thought that now I was on the
meds it was all over and I could try to get on with life. And then just as the
hole in my tongue was healing and I could start eating again, I had another
seizure. Again it was at night with extreme pain and I bit my tongue, but I was
in bed with my wife so she saw it from beginning to end for the first of many
times. This time we didn’t go to the E.R. because we had realized already that
there wasn’t much they could do except charge us a lot of money so we just
called family to come over to be with us and waited till morning to see my doctor. This time was bad enough I needed four months of
physical therapy to function again. Thank God for yogurt and apple sauce.
(This is Julle interjecting for a moment...I never change anything about what Adrian writes. He shares his heart and I just check grammar, that is our agreement. However, Adrian did go to the ER after this third seizure. He just doesn't remember it. In fact, there are many things from our lives he doesn't remember now but especially events that have happened within months of a seizure.)
Some of you, or maybe of a lot of you, may be wondering why I
am writing about this. I actually am wondering the same thing and the honest
answer is that I am not exactly sure. Oh, there are a myriad of reasons that
all put together may be the collective reason but there is no one specific
reason. One reason is, seizures can strike anybody, anywhere, at any time and
my hope is that by posting my story and our experiences it will help somebody
be prepared for a time when either they see a seizure or they experience it
themselves.
There is nothing I can say to help you understand what it’s
like to have a seizure and I don’t want to because they are different for each
person. I can’t even really make you understand what it’s like to have to live
with seizures. But having seizures and living with seizures is something that
most of you can’t and hopefully never will be able to relate to. As I continue
to share my story about living with seizures I would also like to focus on
talking about things that you can all relate to; loss, anger, addiction, bitterness,
forgiveness, why me?, hope, change, etc. The challenges that life throws at
each of us are different but I think that the things we face as a result of
those challenges are very similar. More importantly I believe that we can find
the love and support that we desperately need from one another to face those
things.
I definitely won’t be writing from a Seven Steps To
________, fill in the blank, point of view because I am still on my journey
through all of it and in no way an authority on anything. I am just going to
share my journey in the hope that doing so will help others find strength,
courage, and hope for their journey. If nothing else then hopefully sharing my
journey will help me find the strength, courage, and hope I need to continue
it. 
The Blizzard of 2010 hit Delaware just after seizures hit our family.
Adria is in the sled with Grandad Seely and Max behind her and Adrian up by our house.
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