“It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever, is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one.” ― George Harrison
How was the period of time you spent “preparing yourself for the worst” before the operation? –Lindsey Zimanek
A lot of my memories during that time are from notebooks I kept and pictures I have seen. I nearly died eight months prior to the surgery when I experienced status epilepticus. My body began having one tonic-clonic seizure after another without recovering in between the seizures. Following this event, my life was chaotic. I was experiencing a learning curve unlike any I had ever known before due to amnesia caused by the status epilepticus.
The memory loss caused me to have to relearn everything I had learned in the past eighteen months. Our house, where I returned to after the hospital, was one I never before remembered entering. I was dependent on stories people told me, pictures people could describe to me and Post-it notes we left out for me to keep track of my daily routines. Yet, with these stories, pictures and Post-it notes to help me compensate, it is amazing how efficient a person can become.
The upcoming surgery was an event I looked forward to rather than something I was dreading. My seizures had only gotten worse over the years. With the recent bout of clustered seizures, I fully understood seizures were able to take my life. Yes, there were risks with the surgery, but I was pretty convinced seizures would end my life. I reached the point where I knew the risks of surgery were nothing compared to having my children lose a mom, my husband lose his wife, my parents lose a daughter and my sister become an only child.
One of the concerning consequences of this surgery was more memory loss. To help me prepare for this, I created a notebook filled with all the memories I did not want to lose again: who my children were, what the floor plan of my house was, to whom I was married, my parent’s name – my sister’s, etc. This was written so I would not lose any more of my past. In the end, everything I prepared for did not happen. The stroke, which I had not even considered preparing for, happened.
What was your outlet or stress reliever when you were first trying to figure out how to live this new life? Was there ever a moment when you were at peace with what had happened? –Emily Harmon
I was so busy learning how to best utilize what still remained after my stroke, I had neither the time nor the need to find a stress reliever. I was filled with awe after understanding the ramifications of having a stroke. Before this, I had never truly understood what a paralyzed person felt. Now, better than a textbook description or a movie portrayal, I am able to fully understand what it means and what it feels like. I had never understood the degree of how strongly another sense takes over when you lose one of your five.
My ability to hear returned first. It is amazing how fine-tuned your hearing can become when you can no longer see. I learned little bits of knowledge that would help me later. I could hear how feet hit the ground differently with every step an individual takes. When you have time to really listen, you become acutely aware of whose feet are walking close to your doorway just by the sound their feet create. I knew the nurse who walked so softly her feet barely made a sound and the other nurse who took too long to lift her feet which created a shuffling sound. Doctors, on the other hand, walked hard and stopped abruptly at my doorway before I heard the chart being pulled out and my door being pushed open.
I think my competitive spirit also helped me not get too bored or stressed. Many nights – many, many nights – I laid there awake in my hospital bed trying to figure out how to get my left hand to move again. I am still grateful for the two doctors who helped me by being brutally honest. One told me, “You may never walk again. We are going to have to wait and see…” Another later said, “You still have challenges ahead of you. If you don’t continue to exercise, you will probably end up back in the wheelchair again. Next time it will be a lot harder to get out of it.” These men both offered me challenges. My competitive spirit came alive. I was (a) going to walk again and (b) never going back into a wheelchair.
Hospitals have a policy to wheel you out when you are discharged. I fought this tooth-and-nail. I walked into the hospital on the day of my surgery. When I left, I was determined to walk out and not sit in the wheelchair. I did just that. I walked out on my own. My stress relief came with the determination I would be able to keep up with my young children again someday.
I was at peace from the start. I had my memory. After the surgery, after the stroke, all of my memories remained. Not walking, not hearing, not seeing, not being able to touch things and feel what was there… These things can all be overcome. I had my memories still. From previous experience, I knew I could not have gotten those back if they had been lost. Everything else, I was sure I could learn again.