Oct 11 2012

Survivor Spotlight – Ellie Neff

Ellie Neff – Portrait of a Dedicated Caregiver
by SCTA Volunteer Joanne Glosser Jaeger

Note from editor– Usually, I take the notes I get from the spotlite person and rework them into a story. However, in this case, Ellie’s writing was so eloquent, and from the heart, that I left the story in first person, in Ellie’s own words, with some slight editing.

Home: about an hour north of Johnstown Pennsylvania in a very small community called Westover.

Married: 25 Years

Family: two boys. Christopher is 20 and lives at home and works for a lumber company. Dustin is 17 and will be a senior in high school this fall. Both boys are very good kids. They are very helpful when it comes to taking care of Dad. Dustin is Daddy’s boy. Always has been.

Chris is very quiet and Dustin never shuts his mouth.

Denny’s background: Worked 18 1/2 years in a deep coal mine. Mines closed and Denny went to nurses training. Worked 6 years as an ER and Critical care RN in Clearfield Hospital, Clearfield, PA. Denny was always very active. He was an outstanding baseball player! (Catcher) Won several athletic awards while in high school. He played baseball and/or softball until he was 36. He was a member and president of our boro council for 12 years. He was very civic minded. He served unselfishly. One time I almost killed him because he actually went down town and plowed snow on our oldest son’s 4th birthday. He was gone all day! . He initiated an elementary basketball program in our school district when our oldest son was in kindergarten so that there would be organized basketball at his level. He successfully coached that team for 7 years. He coached Little League.

Spinal Cord Tumor History:

1st diagnosis – astyrocytoma surgery 2/00
2nd diagnosis – ependymoma surgery 8/01

Many complications later:

Denny has what they call non-functional movement from the neck down. He can move his left leg, foot, right foot, left arm, left hand, and right index finger. He just can’t do anything with them. He has total feeling from head to toe. He has bladder control. SOOOOOOO, what is the problem?? Well, that is the big question.

Ellie’s background:

I was born and raised on a farm. My father had a dairy farm and also raised Percheron horses. There wasn’t much time for me to get into too much trouble because Dad always had plenty of work for me to do. There were a lot of responsibilities early in life. My parents always taught me to be strong. AND, my Mom always told me to get an education because that was the only thing in life that no one could ever take away from me. They always taught me to independent.

I have just completed my 30th year of teaching. I have taught 6, 7, and 8th grade reading, 9th grade career research, 9th grade applied literature and graphic arts through the production of the school’s yearbook. I am also the librarian for kindergarten through 12th grade. During my 30 years of teaching, I have also been involved in many extra curricular activities. I have coached the softball team, the golf team, been yearbook advisor for 25 years, the student council advisor for 25 years, senior class advisor for 7 years, drama director forever, junior class advisor for 2 years and several years of cheerleading advisor. I have my BS degree in Elementary Education and Library Science from Slippery Rock University and a Maters of Education with Reading Specialist Certification from Indiana University of Pennsylvania.

Ellie’s interests: I love to read, I play the piano/organ and I love country crafts. I founded a local community theatre group; The Harmony Community Theatre and we have performed wonderful shows such as “The Sound of Music”, “Hello Dolly”, and “Oklahoma”! (I love the theatre!) I am also the President of our local community homecoming committee! I served on our boro council for 4 years.

Ellie & Denny: I knew I wanted to married Denny the very first time I ever saw him. I can still remember exactly what he was wearing. I met Denny in the fall of 1974 at a basketball game at the school where I was teaching. I was the ticket taker at the door and when he walked in, I just said to myself, “Someday I will marry him!” Isn’t that funny???? Anyhow, it took me until July of 1978 to land a date with him. I never told him or anyone else that I wanted to go out with him. He just asked me one Sunday night if I would go out with him. AND of course I said “yes”. We went out the following Wednesday night and we have been together ever since. Exactly one week from the day he asked me out he was at work in a deep coal mine and a HUGE rock fell on him and smashed his left arm. Needless to say, he was in the hospital for a really long time. He had a total of 6 operations on that arm over a period of 4 years. We were married on June 23, 1979. And again, the day I got married I was very confident. I knew when I stepped into the aisle of that church with my Dad on my arm that the man at the altar was the person I wanted to spend the rest of my life with. I always tease him now that he is so lucky that when I said “I DO” that I meant it.

Now for the tumor thing and our life! Well, I want to tell you that I do not worry. I really don’t have time to worry. Worrying will NOT solve one of our problems. I have total trust in God but I must tell you that I have at times been awfully mad at God. I can’t tell you why I feel the way I do, but I feel with all my heart that Denny will get better. It is just a feeling that I have. I believe in miracles. I have seen miracles. God leads me every step of the way. AND he has done this all of my life. That is why I told you how I was raised. If God had not given me the parents that he did I would not be able to handle my life today. For you see, I am now the mother, the wife, the plumber, the gardener, the electrician, the financial advisor, the nurse, the doctor, the carpenter, the dad………..you understand what I mean!

People look at us, and who knows what they think. Yes, I am sad as we all are at times. Yes, I would love to be able to go on vacation. Yes, I would love to be able to just get up and go when and if I wanted to BUT I can’t! We can’t. Have we adapted? Yes, I guess we have. Have we accepted it? No. Will never accept what has happened.

Am I angry? Yes, most of the time. But, I hide it in my heart. I smile. I treat people like I want to be treated. I look at life in a whole different way now. All the kids’ clothes turned inside out in the laundry no longer bothers me. Stuff that does bother me is how many people complain about EVERYTHING. Getting up in the morning, over the hump day, thank God it’s Friday blah blah blah. Please I have a husband who would love to be able to get up and go to work.

What makes me cry???? I can’t walk down the street with my husband holding my hand. I can’t roll over in bed into his arms. He can’t give me a hug. We can’t go dancing. What would I give anything to be able to do? Go to bed when I wanted to go to bed, and actually sleep all night long!

Impact on the kids: Having a Dad with a tumor is a part of the lifestyle now. All the kids’ friends are so wonderful with Denny. It has been very difficult at times for them I know, but they never talk about it. When Denny had his surgery in NYC we were gone for 30 days and the boys didn’t know if they would ever see Dad again. That has to be scary for a 12 and 16-year-old kid. They didn’t have Dad or Mom. Then there were the months of hospital stays when Mom was with Dad and there was no one to cook or do the Mom things. Dustin plays every basketball game for his Dad and he pitches ever pitch for Dad. Chris on the other hand was a pitcher but he never expressed his feelings about Dad through his sports. Chris is very, very close to my Dad and I think he just keeps everything inside just like Grandpa does.

About me and how I handle it: I just do it. People always ask me how I do it and I honestly can’t tell them anything other than I JUST DO IT. I have to do it. No one else does it. No one else offers any help. SOOOOOOO, I just do it. Has it been difficult? Yes. I was sent to NYC by myself with Denny in a wheelchair. I had never been to NYC before in my life. But, I did it. I was alone. And, yes it was hard but there were no choices. I drove 2 hours one way each day for 6 months to be with Denny when he was in the hospital here in PA. WHY- Because I love him and he needed me. My kids didn’t have me and I had to make choices and I hope with all my heart that they boys understood. Not one of his family members or not one of his friends ever offered to fill in for me so I could stay home with the boys.

Denny is very bright and it is so sad to see this wonderful terrific mind trapped in this body that won’t move. Denny had always been a very healthy person; built like a house and on the go all the time. That very strong willed, never at a loss for words guy now just sits. He never complains. He never is demanding. He just sits broken hearted. He fights his battle very silently and never talks to me or anyone else about his problems. It rips him apart to not be able to be in the front yard playing catch with his sons or shooting the basketball in the driveway. He never says anything but I can see it in his eyes.

The bottom line is: I do it cause I love him. He is Denny. He is the guy who was standing at the front of the church. The guy whom I knew I would marry and he is the guy whom I will go to my grave loving. Maybe go to my grave taking care of him. But he will always know that he is safe here at home, paralyzed or not till death do us part.

God has placed many, many angels in my pathway. I live day to day with the touch of these angels. This terrible illness has been difficult and tiring but never the less it is so much easier for me to love the smaller things in life today because of the tumor. God works in strange ways. I don’t understand why Denny has the tumor but I know I am a better person today because of it.

When I retire from teaching I want to do some kind of work in the medical field where I can be with people facing a similar situation as ours. I want to be there for them so that no one ever has to sit in a waiting room alone like I did and wait for the doc to come out and tell you where your loved one is alive or dead.