Remembering Daddy

My father was diagnosed with MS when I was 1 year old. He had been sick for many years before his diagnosis. While the diagnosis was depressing, it was a relief after various specialists had found nothing wrong with him and psychiatrist's had reported that it was all psychosomatic. He was able to work full time for about 5 years after that from what I remember. By that time he was almost completely blind, wheelchair bound and his speech had become slurred.

Instead of wallowing in self pity, my father took this time to become more active in my life. He always volunteered to be a chaperon on my school field trips. I distinctly remember my father telling stories to my class to keep us all quiet while we were waiting to leave. Because he couldn't see, he made up stories with a central character named Oscar. Looking back on things now I think the Oscar stories were partly based on experiences from his childhood and partly his fantastic imagination of things he wished he could experience. I attended a small private school so all the families knew each other. My father became something of a local celebrity. The teachers always counted on him to come on field trips and keep the class entertained during down moments. At that time he was able to get around with a cane or walker so getting him on and off the school bus wasn't that difficult.

As I got older and my father's disease progressed, he was no longer able to come on school trips but he still came to all my school plays and events. One of my favorite memories was going to the YMCA with my father for his aquatic therapy. When he was in the water his joints worked and he could walk for short distances. It filled him with so much joy. We went twice a week and it was one of the happiest times in my life.

My brother was born when I was 5. Unfortunately by the time he was 3 my father's illness had progressed to the point that he was no longer able to be as active as he had been with me. I was sad knowing that my brother would never have the experiences that I had. I did my best to do for my brother what my father had done for me but I know it wasn't the same.

My father was always a very devout Catholic. He went to Catholic school from nursery school through college. When it became difficult for him to go to mass, the Fathers would come to our house once a week for communion. I always struggled with Catholicism but I was very devoted to my father. I would read him passages from the Daily Word every morning before I went to school. When I got older and started going through my father's books I realized that he was fascinated with eastern religions, in particular Hinduism and the idea of reincarnation. I had always though that reincarnation must exist because it wouldn't be fair for people to suffer horrible tragedies in one life and never get the opportunity experience true happiness. Finding those books helped me understand my father's upbeat attitude. Yes, he strictly adhered to Catholic beliefs and truly felt that there was a reason that God had dealt him such a difficult life, but, at the same time, he found hope in reincarnation and the possibility of having another chance to lead a different life.

When I was 21 my father died from complications from MS. The hospital called the house just after 11 pm on Wednesday June 18, 1998. Father's Day was that Sunday. The gift and the card I had sent him from college arrived three days after he died. I was at peace when he died because I knew that his suffering had ended and that his new life might be reborn some time in the future. Every Father's Day has a special meaning for me since it is also the anniversary of my father's death. Sometimes I cry as I pour through old photo albums and books of his. Other times I dance and act silly because he would of loved that. But I always honor him and remember all the joy that he brought to me life. It wasn't always easy having a disabled father but I am proud that it was my life. I love you Daddy.

Insomniac Cafe

I have never been much of a sleeper. Even as a child, I had problems sleeping for more than a few hours at a time. I think I can blame half of it on situations that I have been placed in and the other half on bad genes.

My father was diagnosed with MS when I was 1 year old. At a very young age I realized that this disease was going to kill him at an early age. We had nurses in our house all the time and made several scheduled and emergency visits to the hospital. As his disease progressed, he became more dependent on my mother and I to take care of him. I remember several times when my mother woke me up in the middle of the night to call 911 or to wake my brother up so we could go to the hospital. Eventually, I became paranoid that I was going to wake up one morning and find my father dead. So pushing these thoughts out of my head so I could sleep became increasingly difficult over the years. I started keeping a journal when I was 5 which helped me cope with the stresses of having a chronically ill father and all that came along with it but it didn't alleviate my sleep problems.

I was always a hyperactive child. Maybe if my parents had enrolled me in more activities I would have had an outlet for my energy and started to sleep. But my mother worked full time and had to deal with the stress of raising my brother and I and having a chronically ill husband so she just didn't notice. I had tons of books, a TV and a phone in my room and enough toys to keep my occupied all night while my parents slept. My brother and my mother attended therapy religiously for most of my childhood so I'm not sure why professional help was never sought out for my sleeping problems. I suspect that because my insomnia didn't lead to serious behavior problems, like my brother had, she didn't feel it was that big of a deal.

Very early on my lack of sleep helped me develop a strange cult following. At every sleep over, camping trip, school trip, I was the last one asleep and the first one awake. I liked this attention a lot because I was very insecure and wanted everyone to like me. I found myself obsessing over maintaining this trend. I don't think I intentionally didn't sleep but by worrying about maintaining this image I definitely made the problem worse.

By the time I went away to college at 18, I was a severe insomniac. Sometimes I would struggle to get 2 hours of a sleep a night. My mother got me these herbal sleeping pills that she heard were very effective but they didn't work for me. I went from the minimum recommended dose of 2 pills per night to an unhealthy 8 pills a night and still couldn't sleep. My insomnia allowed me to be very active in sports and clubs in college in addition to carrying my major and two minors and partying every night. It was probably the most unhealthy time of my life.

In 2001 I became a homeowner for the first time, one year after I got my first real job after college. Within 2 weeks I had adopted a wonderful German shepherd from the local Humane Society. The Humane Society suspected that Chale (pronounced like Charlie without the R) had been thrown out by a local breeder because of his obvious hip displaysia. He was 45 pounds and about nine months old when they picked him up as a stray. I grew up with a German shepherd (Rin Tin Tin, I know not original) who lived to the ripe old age of 12. He had hip displaysia and still managed to live a full and wonderful life so I knew Chale wouldn't be that much of a challenge.

Three years later my wonderful dog and I had settled into a nice routine. He was a healthy 85 lbs and the frequent target of rough play from my 6 year old tabby cat Tiger. One morning when I was walking Chale he started having a seizure. It was the most terrifying moment of my life. He was diagnosed with epilepsy and put on medication. Occasionally I would come home from work and find evidence that he had a seizure while I was gone. I felt very guilty when I left the house because I feared he might be dead when I got home. Very quickly I noticed a pattern with his seizures and was able to anticipate when they would happen within a few days of the actual date.

He usually had seizures very early in the morning or late at night. The seizures were very loud and woke me up violently whenever they happened. I would get up several times a night whenever Chale rolled over or did the normal things a dog does at night because I was terrified that he was having a seizure. Luckily, I have been blessed with having "dog people" as bosses at work and they allowed me to use my sick time to stay home with Chale on particularly difficult days. I can't count the number of times I fell asleep next to him on his dog bed or in the corner of the room on the floor. I usually passed out from exhaustion and woke up dazed and not completely sure how I ended up where I was.

Through years of trial and error and trying several traditional and alternative treatments, I am happy to say that Chale has been seizure free for over a year now. But that hasn't helped my sleep deprivation problems. I still jump out of bed every time he moves. My husband (who joined our crazy household in 2006) is very good at telling me "He's okay.", "He's just dreaming"; etc. when I jump out of bed but I can't undo these nervous habits that I have developed.

I have turned Chale into a bit of an insomniac as well. He is so used to getting up early with me that he gets up in the middle of the night expecting to watch a movie or go outside because that is what we had done for years when he was really sick. This morning I got the "doggy stare" at 2:45 am. Chale (now a thick 110 lbs due to the seizure medicine) is sitting at my feet as I click away like we have done on so many other mornings. Unlike him I don't get to sleep on the couch all day to make up for the interruption in sleep.

As I have gotten older I learned that my mother cannot sleep without the TV. The only way she can push all the stressful thoughts out of her head is to fill it with All in the Family re-runs until she passes out. I have also learned that my mother's side of the family has a history of metabolic disorders that can cause sleep problems. I have been tested for everything and haven't been diagnosed with anything that requires medical treatment. I have been told that I have a couple of "syndromes", which have no treatment but have many of the same symptoms as the full blown diseases that they could develop into as I get older. This, of course is no consolation to me.

I have not given up hope and will continue to try different alternative treatments that I have read about in magazines and on the Internet but I suspect that I will suffer from these problems for another 33 years.