52 People You Need To Meet: #8 Ellen Ayers

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Hindsight is a great view, but who would put it all together as a deadly brain tumor?  In April headaches, in May anxiety, in June company and total devastation.  Mark loved kids and took our company’s bored teen girls to the mall, Burger King and came home with the stupid BK paper crowns.   He asked me to drive home after going to dinner and later my son said that dad had a hard time with the tip.  Mark was a numbers guy and would state “362 x 14 that’s 5096 right?”  I’d get a calculator.  Back at the house life forever changed.  Mark couldn’t work the remote.  I thought he was having a stroke. He couldn’t finish a sentence, couldn’t even put one together.  We drove right past the closest hospital to the heart hospital.  We happened to know and trust the Neurologist on-call.  I work with him, and Mark had done business with Doc.   Mark had a grand mal seizure in MRI.  He worked out at home and at work, lifting weights, tossing 100lb bags, ran daily, didn’t drink and didn’t smoke.  Mark was combative and wanted to get up and go, and they thought I could calm him down, but he didn’t even know who I was.  It took 8 people to hold him down.  He finally snapped out of it, and Doc asked “Do you know who I am?”. Mark said, “Sure Jim!”  Our smiles lasted only a few minutes…the results…a brain tumor.  Surgery the next day confirmed it was Grade IV Glioblastoma, and no cure.  Mark fought tenaciously for 3 ½ years on trial meds (average mortality is 18 months).  He was only 52yrs old but many are much younger.

I wish I knew there are many other caregivers going through this savage disease, but am blessed I found some now.  I wish I knew what exactly to do when watching the one I loved so much fade away.  I wish I knew how other people’s kindness could overwhelm you.  Friends, family, healthcare workers touched our vulnerable hearts to tears in so many kind ways (the company we had finished their vacation and took pictures with the BK crown in each in honor of Mark, and we laughed and cried when we saw them). I wish I knew time doesn’t really heal, and I will never be back to my “normal self”.  I wish I truly appreciated what I had.  Mark was a unique man who did so many kind acts. I wish to be more like him.  I was blessed and spoiled.  I would have hugged and made love to him even more because a thousand times wasn’t enough.  I would have taped his sweet voice, I miss it.  I would have held my anger at times when he was paranoid.  I would have taken less time at work and more time with Mark (I worried I would lose my job, though they let me work from home many days).  I would have slept with him more in his hospital bed (his legs had to be elevated and it was hard for me to sleep that way).  I would have held him as he died instead of being next to the bed.

I would not have changed the love – always holding hands.  I was honest along the devastating stages of his disease.  We said “I love you” but for 25 years we always had.   You get over grandparents and parents leaving this world before you as expected.  No way can you prepare for years of empty pain, losing a spouse, best friend and lover.  Even in a crowd I feel alone.  I pray I’ve never judged other peoples pain due to loss.  It’s unique for all.  I still talk to Mark several times daily and miss his laughter.  I know what I had was special and some never will experience that kind of love.  I know I was/am blessed but it doesn’t change the pain.

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