Hello, my name is Marty Harris, I'm 36 years old and I have Acute Malignant Vasovagal Neurocardiogenic Syncope. In simple terms, I faint - a lot! Well, I used to faint a lot. Not anymore. What's my secret you might ask? I'll get to that, but first I want to share my journey with you.
My first memories of fainting were when I was about six or seven years old and living in Dallas, Texas. I would wake up on the floor of the playground with my best friend looking down at me. My Mom would tell you that I started passing out from the day I was born. She said when I would start to cry, my lips would turn blue, I'd faint for a few seconds then wake up and be fine. I have four brothers and four sisters, all steps and halves, so technically I am an only child. I am the youngest of them all by eight years and the only sickly one in the bunch. So, as you can imagine, I have been a bit of a puzzle to everyone in my life from day one. I remember being dragged from one doctor's office to another from a very early age and watching my mother's growing frustration because the answers the doctors gave were different at each office we went. I was diagnosed and treated with everything from heart conditions (racing heart, murmur and MVP), asthma (due to a side effect developed from being on certain heart medication for many years), stress, abuse, hormones, too much physical exertion, not enough exercise, and - my personal favorite - she's a young healthy girl with nothing wrong with her, "It's all in her head". I think I have had just about every kind of test ever given in and no-one could ever tell me what was really wrong with me until I moved to Boston, Massachusetts, at the age of 31.
At this point of my life I have graduated art school, worked, got married (twice), had a son, lived in four States, travelled to 38 States and multiple countries - England, France, Scotland, Mexico, just to name a few. Basically, even though no doctor had fixed my problem I got on with life. I just fainted through it all. I fainted in every school I attended, while exercising, shopping, travelling, weddings, divorce, births, deaths, mountains, seashores, indoors or out; my fainting had no limits. But the absolute worse was the day I fainted in my son's pre-school in front of thirty or so toddlers and woke to their screams and crying as I was yet again being loaded into an ambulance.
A few days later I walked into the office of Dr James Januzzi at Mass General Hospital and my world began to change. I remember sitting on the white paper covered table, wrapped in a not so flattering piece of thin blue paper myself, when I started explaining my medical history for the hundredth time. He paid close attention (unlike most), nodding and smiling, and asking a few questions when it occurred to me that he knew something that the others did not. He simply said, "Oh! You have Vasovagal Syncope!"
Never having heard this term before, I was almost sure I had just been told I was dying!
After seeing that I was about to faint again he calmly gave me a glass of water and explained that it was not life threatening and many people had what I did. I was put on new meds and told to keep my fluid intake up. I'm not sure why I was so happy after I left his office but I do remember calling my mom and crying because I just knew Dr Januzzi knew what he was talking about. I remember thinking now everything is going to be OK. I had a name for my trouble even if I did have trouble pronouncing it from time to time.
Well it wasn't as simple as that. I kept fainting and kept getting worse as the years went by. My medicines were constantly being altered and my new Arrhythmia specialist, Dr Mansour, was considering a pacemaker. I was even prepped twice for the procedure. I remember Dr Januzzi and Dr Mansour arguing outside my hospital room about proceeding. Dr Januzzi insisted that it was only a small chance that the pacemaker would help me since I have both extremely low blood pressure and a racing heart rate happening at the same time. It was decided that we would keep trying new meds, but the odds were I would be back soon enough to have a pacemaker installed.
One day I was in Dr Januzzi's office; he was doing an experiment where he had me lie down and then sit up quickly while he monitored my heart rate and blood pressure. I started to faint and he laid me back down. After I recovered he wanted me to sit up slowly then rise quickly to my feet. I had a near faint again. So he sat me in a chair and said not to move. He needed to step outside for a moment just outside the door and I should call his name if I felt faint again. Well, I guess I did call his name because I came to on the floor of his office with him kneeling over me saying, "the paramedics on their way". He said that for about ten seconds I did not have a pulse and they were rushing me to the E.R. This was nothing new to me but I think it might have been a first for Dr Januzzi. Later he explained that I did not just have vasovagal syncope, but the worst case he had ever seen. The test run in the hospital confirmed that a pace maker would not keep me from fainting since it would only help with one of my issues.
As time went by I kept getting worse. Dr Januzzi said he was afraid he had run out of options. Nothing was working like it did for other patients and he suggested I look into alternative options. But even he was not sure what that meant.
In steps fate ...
A week or so later I was watching a TV show on dogs that can detect cancer in people before doctors can. This made me remember a Dalmatian dog I use to have who would bring my asthma inhaler to me before I would have an attack. She always knew ahead of time. Then I started wondering if a dog could help me. I called Dr Januzzi to ask if this is an option and he had never heard of such a thing but it wouldn't hurt to explore the idea. So, with his encouragement, I started to call service dog organizations all over the US. Each one said, "No, sorry, we don't train dogs for the heart but try this one ..." and so I would call the organization they recommended. This went on for weeks and the answer was always the same. I was frustrated, scared, angry, sad, desperate, yet hopeful to find help. So I said to whatever higher power would listen, "Please give me a sign that I am on the right path. I don't know if I can take, ‘No, sorry', for an answer much longer."
I decided to go for a walk on the way to pick up my son from school when my plea was answered. I turned a corner on the streets of Boston and tripped over a woman and her service dog. After I got back on my feet I apologized and then begged her to tell me all about her dog and where she got him. Now get this! It turned out to be the last organization I had just called that said, ‘No, sorry, but try Canine Partners for Life' (Aka CPL).
Well, I had asked for a sign and what could be clearer? So I called as soon as I got home and you want to know what they said? "MAYBE!!!!!! I was shocked. Luckily, I did not faint! I spent the next nine months filling out paperwork, doing interviews, attending service dog graduate support classes, travelling back and forth between Philadelphia, Pennsylvania and Boston by train, plane or automobile, never once coming in contact with a service dog, all just for that "MAYBE".
Then a call came from CPL, "We would like you to come meet some of our dogs and see if they could help you." They had never had a dog trained for helping people who faint and were not sure the dogs would be able to help me. Their service dogs are able to alert people with seizures and diabetes but they are not sure about the heart.
Was I ready to be the first? What if it did not work? I have spent hundreds of dollars in travel. I have asked my husband to take time off from his job teaching high school. I have already taken countless hours away from my family. I have had to ask family and friends to watch my son over and over again. I have also asked them to believe in something that might not even happen. I have done everything so far based on a TV show! Well, it's not the first time I was told I was crazy! So, we went.
Jeff, my husband, and I travelled by plane to CPL to work with dogs for my heart.
I was so nervous and tired that the conditions for fainting where perfect. We sat in a large warehouse that was CPL's service dog training facility and watched as the trainers brought in four beautiful Labradors. They made it perfectly clear that whilst all of the dogs were ‘certified seizure alert dogs', this did not mean that they would be able to help me. Also, that ‘none of these dogs are specifically for me'.
I was told to walk around the inside of the warehouse with each dog separately and just see if anything happens. I was so nervous that I did not understand why at times the dogs would just stop walking and stare at me. I would get tired and the trainers would let me rest between each dog. Then we went outside and I was asked to climb a short hill allowing one dog at a time to pull me up the hill while I held on to the harness. Each dog did this in it's own way but one dog, once we reached the top, threw itself onto my feet and refused to budge. I yelled down to the trainers that I thought this dog was broken because she would not do anything I asked her. They yelled back up the hill that maybe the dog was trying to tell me something. So I sat down, the dog stared at me for a while, then eventually she got up, helped me up and we went back down the hill together. The trainers thanked us for coming and did not say much else. Then Jeff and I flew back to Boston very confused, not really understanding what just happened. It was not a very eventful trip in my mind but would prove to be a life altering one before too long.
A few weeks later one of the trainers from CPL called. I was thinking she was just calling to find out more about me when she said, "We would like to offer you Adele as a service dog."
All time stopped ...
I don't know - maybe I fainted, but when I could hear again she was saying, "Um. Are you OK with this?" Is she kidding? I had such a hard time getting my mouth and brain to work together that she must have thought I had changed my mind about wanting a dog. She was saying, "People usually show a little more emotion when told and if I wasn't sure ..." WHAT!!!!!! My brain was screaming, "Marty start talking before you blow this chance of a different life!" Honestly I know I started babbling stupid questions and I don't remember anything that was said. Luckily they did not think I was completely off my rocker and Adele and I were about to become a team.
Now for the hard part ...
I had to spend three weeks away from my seven-year-old son (who lost his first tooth while we where gone) and go train with a dog every day. Three weeks is a long time to live in a hotel thousands of miles away from friends and family. Jeff drove me to Pennsylvania, set me up in a hotel and we went to the dinner at CPL where I meet Adele (she turned out to be the dog I worked with before. The one who, when we got up the hill, lay on my feet and refused to do anything I asked); I thought, "Great! What have I asked for?"
Because Adele was classified as a seizure alert dog she went back to the hotel with us that night. I think she was as confused and scared as I was. I was given instructions not to give her any commands and we should "just get to know one another". Jeff was told "not to touch or talk to her". So we spent about half an hour just staring at each other before we all called it a night and went to sleep. I woke in the middle of the night because Adele was licking my head above my eye. I had a migraine coming on in that exact spot. So, I took some meds thanked her for watching out for me and fell asleep with Adele licking my hand over and over again.
The next few weeks of training together were nothing short of "doggie boot camp". Every day I was reminded that this dog was smarter than I was. Not only did she understand how to turn a light on and off, open then close doors and drawers, pay a cashier, carry things, retrieve items, bring me the phone, understand sign language, do laundry and countless other service skills, she could also alert me every time before I would faint! Now, don't get me wrong, it took a long time before we could figure out each other's language. Eventually, with the help of the trainers, my friends and family (who took shifts coming to stay with me during this time) we figured each other out.
We learned that we are both stubborn. Adele (being the smarter of the two of us) figured out different ways to alert me depending on the severity of my condition. Sometimes she will just stop walking for a moment if she wants me to rest. If I try to keep going she will stand in front of me like a brick wall so I don't move. If it is more important for me to listen to her, she will rub her snout on my legs in different locations depending on how severe. For example...
If she rubs the side of my leg it means wait something's happening don't move. If she rubs between my legs in the front it means, ‘Sit down now, Marty'. When she rubs between my legs in the back and slightly lifts my leg off the ground she wants me down now and most likely on my back. If she jumps up and pushes me with her front paws that means code red get down! If I am sitting and she rubs her head on my side where my heart is she wants me to hang on to her. She will lie across me if she does not want me to get up from whatever position she has put me in. She has also been known to lick my hand compulsively when I am having chest pains during the worst of these spells. Otherwise she will either stare at me or turn her back and ignore me until the danger of passing out has passed. When all is well she will give a quick lick to me (usually on my face) and help me get up. Then we go on until the next episode occurs. Adele alerts anywhere from five to twenty times a day. I have had to learn patience and trust. To say that my life is different now would be an understatement.
Before Adele came into my life? I woke every morning not knowing if I could make it through the day without ending up in a hospital. I would lie there in bed and just hope not to be somewhere alone and pass out that day. Mostly, I would pray not to pass out in front of my son. I started everyday being scared, hurt or confused as to what that day would bring. I went to the best doctors and hospitals but there came a point where even they could not help me anymore.
After Adele came into my life everything changed not just for me but for my friends and family as well. From the moment we met, Adele has known when I am going to faint. Everyday she helps me to stay safe. Sometimes it seems she just likes to be helpful. Whether I am doing laundry or need help carrying items she is always right there to help. She even likes to bring me the phone. Although Adele can take her job very seriously she does like her free time. Her favorite activities out of her harness are to roll around in the grass or snow, run around in circles, chase balls, playing with other dogs and to kill the squeakers in all of her toys.
Adele has been awarded the 2007 MSPCA Hero Dog of the year award.
She has had our story told in the Boston Globe (July 1, 2007), on BBC Radio (August 2007), in People Magazine (December 25, 2007) and the list just keeps getting longer. Because of the publicity we have received, STARS-US got in touch with us and asked me to write our story. I was so excited to hear that I am not alone. It was the first I had ever heard of such a support group. I sit here and try to imagine how different my life and my familys' lives could have been had we had an organization like STARS when I was growing up. Thank you to all involved in trying to make Vasovagal Syncope known and for trying to help others like me. Service dogs like Adele might not be the answer for everyone, just like a pacemaker and the meds have not been the answer for me. But I believe that keeping an open mind and always being willing to try the unexpected can make wonderful things happen. Don't you think?
We have been together over a year now, and my life just keeps getting better.
Since Adele has come into my life I have not fainted but for one time and that was because I was being stubborn and not listening to her. But even that time she caught me and prevented me from injuring myself. Now I always do what my dog tells me to do. Like I said before, she is smarter than I am.
Now, I'm not scared anymore. Adele has given my family and me the gifts of freedom, comfort, beauty, security, adventure, bravery and love.
I only hope that we can do the same for her!
Go to Canine Partners for Life
Now life is quite simple ...
To Be Continued ...
Happily Ever After!