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CHICAGO – Jennifer Giesen didn't want to wear gloves 24/7, but her brain kept telling her she had to. After trying almost everything to treat her crippling obsessive-compulsive disorder, the 25-year-old opted for an experimental treatment, where electrodes are planted inside the brain. Deep brain stimulation has long been used to treat movement disorders, like Parkinson's disease, but the Mayo Clinic in Minnesota is pioneering its use for psychiatric disorders. If successful, they hope the procedure could be a critical breakthrough – not just for those with OCD like Giesen – but for a host of other conditions, including depression, schizophrenia, Tourette syndrome, addiction and even memory loss.
Six months ago, Giesen allowed America Tonight to document her experience undergoing the initial surgery. Below, she shares why she did it, the ways it's changed her life and how she found strength through reality TV. Her comments have been edited for brevity and clarity.
I've had OCD for about 17 years, so it's kind of hard to know what life is like without it. I don't think it necessarily has to control what you do, but it will impact how you do it, how long it will take, when you do it and how much stress or pleasure it will cause or create for you.
Around age 10, it really started to impact my performance at school. I became an absolute perfectionist and it took me so long to complete assignments between the rewriting, rereading and just the general anxiety over it being just right. It got to a point where I was spending anywhere from four to seven hours on homework – and this was in elementary school. Honestly, at first, it enhanced my performance at school, due to the thoroughness and preciseness, but it didn't take long for me to get overwhelmed to the point where I was pretty much immobilized in fear.
By the time I was in junior high, I avoided going anywhere that might cause me anxiety, and would only leave my house if someone I trusted was driving – always keeping my hand on the door handle in case I needed to jump out because they drove "the wrong way." I spent so much of my day avoiding anxiety-producing tasks (which at this point was pretty much anything), doing rituals and just trying to complete daily care tasks like getting dressed, showering, brushing my hair, washing my hands and getting to bed. I was always in such a heightened sense of anxiety that it caused migraines and I was constantly nauseous or dry heaving.
By the time I turned 13 I was praying for God to kill me, causing self-harm and contemplating suicide daily.
In eighth grade I was in and out of the psych ward due to suicidal ideations and on more drugs than you could imagine. They all caused extreme drowsiness; many caused weight gain. In less than a year I gained more than 100 pounds. I developed constant tremors and became almost numb to the outside world.
High school was a disaster as well. Three schools and approximately an entire year of absences later (combined throughout the four years I was in high school) I finally graduated. When I was 17 and a senior in high school, I went to a residential treatment facility for my OCD.
Three months later, I left and I have to say, it changed my life. It was by far one of the hardest things I've ever done but so worth it. It made me a functioning human being and I will be forever thankful for it.
That is really where I was introduced to cognitive behavioral therapy, and ERP, exposure response prevention. In short, first you expose, E, yourself to the anxiety-inducing situation. Then you respond, R, at first by having a heightened level of anxiety. Then, as you don't do the anxiety-neutralizing activity (or ritual) to relieve the negative emotions, you instead sit with said anxiety until it dissipates. Then the prevention, P, part basically just means that you do the activity/exposure until it no longer causes you anxiety, which in turn prevents you from becoming anxious in the future when that situation occurs again. Sorry, that really wasn't very short at all.
After this experience, I had a lot more things I was able to do, places I could go and things I could touch. I was even able to volunteer at a local animal shelter, apply to several colleges and attend school for two and a half years. But eventually the anxiety became crippling again. I dropped out and came home in the middle of my junior year of college.
This was that changing point in my life where I started to realize, things can get better. I can be a person capable of having a life worth living.
on working to overcome her OCD
Due to my OCD I could not get a "normal" job. There were so many things I couldn't touch, places I couldn't go, strangers I couldn't interact with, and it didn't help that things just took me at least five times longer than the average person. So I was on disability, living at home with my parents, and going to therapy. That was basically my life.
While I was at school, I managed to add another 50 pounds, so now I was over 350 pounds. Besides the mental limitations, I also had physical ones. And because all of my psychiatric medications caused extreme drowsiness, I had trouble doing much of anything. I was more than content at this point to sleep 24/7.
I got really sick and tired of this crap and I decided something needed to change. The only thing at that time I was willing to work on that I thought would impact my happiness was my body. Dieting, drugs, personal trainers, none of that worked. So I went the drastic route and got gastric bypass. I ended up losing about 150 pounds. This was that changing point in my life where I started to realize, things can get better. I can be a person capable of having a life worth living.
After my weight loss stabilized, I saw a show on TLC called "My 600-lb. Life." While I never weighed that much, I saw people who, like me, were depressed, overweight, unable to work and isolated. Then I saw these same people change for the better, some of them getting to weights lower than I have been since early childhood. In this newfound freedom, I saw them reach the goals that I hoped to accomplish one day, things like starting a relationship, having children and getting a job.
I was so empowered by this that I immediately started looking up more-intensive treatments for OCD. I felt like that was my next, and biggest, barrier that I needed to overcome. That's when I found the DBS study at the Mayo Clinic.
When I saw her lying in that casket – cold as ice – I knew how close it came to it being me in there and not her. Honestly, if she hadn't done it, and I hadn't seen the pain it caused and the lives it shattered, I am sure I would have done it to myself.
on how a relative's suicide affected her
It was a long and strenuous process to say the least, but at that point it was my hope, my reason to live, my chance at happiness. To be approved I had to make several trips to the Mayo Clinic, that lasted about a week apiece. The visits included many hours of interviewing, reviewing of all my past medical history including family history both medical and psychiatric, cognitive testing, MRIs, neurological exams, EEGs, questionnaires and many more "fun activities."
I had a lot of suicidal thoughts at this time, which I kept to myself for fear of being denied the surgery. But to be honest, I've been suicidal for most of my life. I remember being as little as 9 and wishing to die. I knew if I told anyone they would probably freak out and send me to the psych ward again, which was the last thing I wanted.
When I was 17, a family member committed suicide. She was the same age as me. She looked a lot like me. We had a lot of things in common, and honestly, when I saw her lying in that casket – cold as ice – I knew how close it came to it being me in there and not her. Honestly, if she hadn't done it, and I hadn't seen the pain it caused and the lives it shattered, I am sure I would have done it to myself.
I'm ashamed on so many levels to say this, but for years I was jealous. She was able to end her pain and because of that I was stuck here on earth to suffer forever. But now I realize that she saved my life. I'm not really sure how I feel about that because my life is still pretty messed up, but I have a chance – a chance I would not have had otherwise. Besides me, she saved my parents, my grandma and so many others. Her parents and grandparents had to suffer so mine didn't.
One thing people ask a lot is, weren't you scared [about the DBS surgery]? The simple answer is no, not really. There have been points where I tried bargaining with some higher being for the opportunity to not wake up. So to me, death wasn't the worst outcome. I was more afraid that, hey, it might not work.
I'd be lying if I said I wasn’t also afraid of the pain. But I've been poked and prodded so many times by so many medical professionals that it doesn't phase me so much anymore; before the DBS implant, I had already had four previous surgeries. I remember them saying they were about to start drilling, and I thought, what if it doesn't stop? I know that the drill automatically stops before it gets to your brain tissue, but what if it didn't stop? And what if I wasn't as numb as they thought I was? What if I felt them digging into my head? Luckily, none of those fears came to fruition.
I can say I'm better. I'm not as depressed. My OCD has gotten a lot better and I'm 100 percent glad I did it.
on deep brain stimulation
Mostly I was just excited at this chance at a better life. I barely slept the night before surgery because I was more excited than a 5-year-old on Christmas morning.
During the surgery I was awake, so they actually tested it out while they placed the electrodes in my head. That was one of the most amazing experiences I've ever had. I had lows, where I wanted to jump out the nearest window, highs where I was just laughing for no reason and times where I couldn't feel anything. And all these changes simply by the doctor clicking a screen. It was a pretty extreme phenomenon that I can't really describe as accurately as I'd like to.
Setting up the device so it works for me and my individual OCD symptoms, that has been a way-larger endeavor. That honestly made the 8- to 12-hour-long surgery seem like just a blip on the radar. I had the surgery a little over six months ago and I am still going in for adjustments every two to six weeks. I've tried hundreds if not thousands of settings and I'm still a work in progress.
One issue I experienced early on is that I would get to a good setting but it only lasted approximately 10 days. Then I'd crash and burn, becoming an irritated, bitchy, depressed, unmotivated, sleep-obsessed person, who was just plain angry.
But for those 10 days I was higher than a friggin' kite! I was so happy. Like actually happy, not depressed at all. I was smiling, laughing, skipping, and hitting on anyone that came within a 5-mile radius. I was super sweet, affectionate, extremely giving, talkative and someone who at times could swear more than a drunken sailor.
But as they say, all good things must come to an end, and so did this "happiness." But, I'm now working with a new psychiatrist who's programming me for more lasting results. While it may not be as extreme as the super-happy bubbly me, I can say I'm better. I'm not as depressed, my OCD has gotten a lot better and I'm 100 percent glad I did it.
People also ask all the time, would you do it again? And I say, "YES!" every time. I really would, in a heartbeat.
Honestly, it is the only reason I can write this right now, the only way I could do all of the things I've been able to do or imagine or try, the only reason I don't contemplate death so much, and the only real reason I know without a doubt that I can be happy. I can feel happiness. I can be a happy person.