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Sunday, January 17, 2010

Shelly and The Brace Man

 For about the past year or so, I've wanted to join a book club. Though I feel ridiculous admitting it, I haven't done it yet because I am scared. My fear comes down to two things: I might hate the other people there, or they might hate me. I want to join a book club because I love reading and I am always looking for other people who have read the same things I have so we can discuss it or who enjoy the same kind of books I do so we can recommend books to each other (and discuss them). In particular now, since my move to Oregon, I also think it would be a good way to make friends, which I have a hard time doing. I have found two book clubs in my area and have even checked out the books they are reading from the library so that, should I have a burst of bravery, I will be prepared to go. And yet, with the meeting time about a week away, I am already talking myself out of it.

I have learned that people are generally scared of things they are not familiar with. As a child with cerebral palsy, I had a lot to fear because I rarely knew what was coming next. Since my family did not have a lot of money, when it was time for my cast to come off after my achille's tendon surgery, we headed over to a clinic for children like me. The doctor came about once a month, I think, so whenever we were there, there were tons of other kids and it was generally an all day event to see the doctor and the brace man.

I met the doctor for the first time when we were ready to take my cast off. I remember him as a very creepy man who I hated to see every time afterward. He was tall and skinny, balding on top with thin grey hair down to his shoulders. I remember thinking that his nose looked more like a beak. After seeing tv shows where people have to do community service for some conviction or another at places like clinics, I have wondered if it was that type of situation with the doctor there. He never seemed happy about his job and I was certainly never happy to see him.

So on that first visit, as we removed the cast, he wanted me to get off the examination table and walk around a little bit. He warned me not to put too much weight on my left leg because it would be weaker since having the support of the cast. At 5 years old, I was convinced that that was the dumbest thing I had ever heard! I was walking just fine (to my knowledge) before having surgery, had finally been able to walk on the cast w/out crutches after the surgery, and walking now would be no different. So I hopped down from the table and would have fallen had not the creepy doctor been prepared to catch me. I was shocked and puzzled by the weakness of my left leg. Though the doctor had warned me about it, nothing in my experience prepared me for it's seeming malfunction. I then walked carefully around the room and the doctor happily passed us (my mom and I) along to The Brace Man.

The Brace Man (the only name I ever knew him by) was one of my favorite people in the world. He was a little overweight and very jolly and was clearly happy working with kids. He had me smiling and laughing the moment I met him and I always looked forward to that part of the visit, even though it was often physically painful to meet with him. He was always saying the kind of outrageous things that kids love, things like asking me if I was sixteen (which, at 5, I found hilarious), asking if I had a boyfriend (when I hated boys), etc. He always explained what he was doing, though usually he'd make a joke about it first. The first time I met with him, I had to be fitted with a brace and later, as I grew, we would repeat the process. This involved lots of measurements on my leg and he would have to draw all sorts of lines all over my leg with blue ink that would not wash off for days. He told my mom when to come back for the brace and would give me friendly admonishments about going easy on the boys as we left.

The Brace Man made an impression on me for several reasons. He knew I was shy and was able to draw me out without embarrassing me (as people sometimes do when they meet someone who is shy--they just comment on your shyness and how you are blushing, making everything worse and your desire to flee merely increases). He explained what was going on so that I knew what he was doing and why, making it much easier to feel comfortable with him. He understood when what he was doing (tightening a brace, for example) was painful and would let me cry, but also make me laugh again afterwards so I always left my sessions with him on a good note and even looking forward to seeing him again.

Depression, I think, is a lot like my visits to the doctor, at that clinic. There are a bunch of other people there, but they don't look exactly like you do, and you can tell some of them are in worse shape than you are and some better. You don't know exactly what's coming during that visit and when you sink into that darkness, it is hard to say that you'll make it out. No matter how many times you've been there, each time is a little different and each time you think "How long do I have to do this? How long will I have to keep coming back here?" But hopefully, while you're there, you find a Brace Man to help you figure out a little bit of what's going on, laugh through the pain, and make it ok when you have to visit again for a new brace (coping skill) or just adjusting the one you already have.

When I met Shelly at Adult Partial Hospitalization, she became my "Brace Man." Never have I met someone who's connected with me so well on what my depression is like in all its stages and been able to reach out to me in that darkness to say, "Here's what we need to do" and "Yes, you will get out" while helping me laugh in the midst of all that pain. My visits to The Brace Man were necessary in helping me learn to walk again and learn to walk properly so that my achille's tendon would not just shrink again and leave me with a permanent limp. Shelly, my other "Brace Man" helped me learn that my visits to Adult Partial were also necessary for my recovery from depression. With depression, when I'd land back in that clinic, back at Partial, I couldn't help but to feel like a failure--like the lessons I'd learned, the skills I'd developed were wasted on someone who could not make them stick. Shelly helped me learn that just like those visits to The Brace Man as a kid were necessary-- because I was growing, so what one brace could accomplish for a time, a different one would be needed for later because that old brace just wasn't adequate anymore--visits to Partial were not something to be ashamed of, but something to embrace as part of my recovery. And though often painful and scary as we adjusted this coping skill or tried that one, Shelly let me be myself, met me where I was at, and helped me laugh through the pain.

For better or worse, I often hear Shelly's voice in my head, giving me a new perspective or catching me in a thought process I know I can (and for my health, should) stop. Lately, as I've thought about this book club, I hear her again and again saying, "Really, Larissa. Just try it. What's the worst that can happen? You are not going to run out of the meeting screaming...and even if you do, so what? Just don't go back to that one again. But you and I both know you won't. Maybe it will suck...maybe you'll hate everyone there and they'll all hate you. But maybe (and this is something she always loves to point out to me)...maybe you will like it! And would it be so horrible to enjoy something every once in a while? I know this is a risk for you, but try it. It's a "safe" risk, in that it's a risk you can take that does not have the world riding on it. It's a chance to make some friends who share your interests. Even if you never go back again, just try it." And at this point, with Shelly in the flesh, or Shelly in my head, I generally get annoyed because either way, she's right. Sometimes risks are worth it just to find out that you can do something, even if you discover you don't like it or it isn't what you wanted or needed...you can do it when you were scared you couldn't.

Thursday, January 14, 2010

On Anger

I am a cautious individual by nature. I fear falling, getting hurt, being embarrassed, making the wrong choice, answering too quickly, failing, disappointing people, breathing incorrectly---you know, the basic fears most people have.

Between my fear of falling and my cautious nature, my five year old self was scared to use crutches on my own after my achille's tendon surgery on my left leg. Doctor's orders stated that I was not allowed to put weight on my foot for a while after the surgery. My 5 yr old wisdom told me that was ridiculous, but found out it wasn't once pain upon standing showed me who was actually the ridiculous one. While I was unaware of it at the time, since my cerebral palsy is on the left side of my body, it also hugely impacts my balance--as in, giving myself even a little credit for balance is being generous--therefore making it even harder for me to use the crutches. As a result, my mom ended up helping me walk around the apartment anytime moving meant crutches would be involved.

At that time, much to my disdain, my mom felt it necessary to include an afternoon nap as part of my daily schedule. On one such afternoon, I was arguing with my mom about something (very important, I'm sure. I argued with her just about every chance I got on anything from whether or not my fancy socks should be pulled all the way up or folded down as designed to how I should wear my hair for the day.) and she decided that it was time for my afternoon nap. She got my crutches and came over to the couch to help me walk to my room as she always did. Furious as I was, I pronounced, "NO! YOU don't help me. I will do it myself!" So, my mom backed off to let me "do it myself."

It was a long journey down the hallway that day. I was scared as I wavered on the crutches on my own, but I was much too stubborn to let my mom help me. I was determined to do it alone. And I did. After that, though moving very slowly at first, I used the crutches on my own, but still recognized that I needed help for obstacles such as stairs. And in her everlasting patience, my mom was there to help me when I needed it.

It would be nicer, I think, if this little story went something more like this: because of my mom's love and encouragement, I learned to use the crutches on my own. Doesn't that sound so...Walgreen's? Or the way it would be if I lived with the cast of Full House...but I know better. All the assistance and patience in the world was not going to get me onto those crutches on my own; it was my anger that finally propelled me to take a risk.

Society often frowns on anger as though it is not ok to experience it under any circumstances. I will tell you that I disagree. There have been times in my life --sometimes lasting months, sometimes up to a year--where anger was the only thing to keep me going. It motivated me to achieve things when nothing else could, to take risks I would normally be too fearful to take, to make a change in my life so as not to end up in that position of anger again.

At Adult Partial Hospitalization, I found people who had experienced the same thing: where anger had caused them to finally get out of an abusive relationship they had been scared to leave, or out of a job that was suffocating them, or allowed them to confront a loved one who was not respecting their boundaries. Whatever the case, there was story after story, heart after heart, who knew that anger was what they needed in order to face whatever bear was in their way.

And yet, I can also tell you that I found people with story after story of how anger had trapped them, how their anger towards their past, their childhood, their present, their situations, their lives was just eating them up and locking them into misery. Even so, I am not afraid of anger and I am not ashamed when I feel angry. Anger is natural and even appropriate at times. It is what we do with our anger, how we decide to respond to it, that defines whether we are propelled to walk on our own or sit on the couch cursing the world for the fact that we need crutches.

I have been there. I have been that person on the couch cursing the world. I know sometimes it feels like the only defense we have--like if we aren't angry, if we get off that couch to try to walk without help, we are going to fall and things will be worse. The truth is, it might feel worse...it was a slow and scary walk to my bedroom the day I refused help from my mom. But once I had done it the first time, I knew I could do it again. Use your anger while you need it, but then let it go.

Let it go so that when you wake up from your nap, when you've had a chance to rest after your anger has subsided, you can say, "Look, Mom! Now I can walk on my crutches by myself!" and see her smiling back at you.

Wednesday, January 13, 2010

Encountering Bears

After discovering that I had cerebral palsy, it was time to decide what to do. After all, my limp was already apparent to those around me and doctors assured my parents (and we would later see examples) that if something wasn't done, not only would my limp become more pronounced, but because I was still growing, it would affect my spine and all sorts of organs and such because of the spine deformity.

My achille's tendon in my left leg was too short and not growing properly, which was the cause of my uneven gait. Therefore, the doctors decided that the best way to correct the problem and prevent further complications in the future would be to perform surgery on my achille's tendon on my left leg to lengthen it, allowing me to walk normally.

At the time, my family was living in Bowling Green, KY and the surgery was to take place in Louisville, KY. We had neither the money nor the vehicle to take the trip and my parents borrowed a vehicle from a friend to make the drive. We slept in the hospital chapel once we arrived in Louisville and awaited my surgery.

I was about 5 years old at the time and there are snatches of things I remember: I remember thinking my doctor was hilarious, but I am naturally a shy person and do not remember talking to him at all, just smiling ear to ear every time he came to talk to him and every time he would comment on my smile and how happy I was. I remember how he and the nurses explained everything they were doing either before they did it or as they were doing it so that I wasn't scared at all. I remember watching the nurse put the needle into my arm after she told me what it was for and getting cold as the IV fluids entered my veins. I remember being wheeled into surgery and the anesthesiologist telling me to count backwards from 100. I remember 98.

I remember waking up and being told I was in the recovery room, my mom there with me and the nurses asking me if I wanted anything to drink or snack on. I remember eating the best cookies I've ever had (to this day, I have no idea what kind they were, just that they were delicious) until they ran out. (Upon reflection, I suspect my mom told the nurse not to let me have any more.) I remember that I had a cast on my left leg and could not walk, but I don't remember it hurting, though I think it must have...the cookies must have been a very effective pain reliever. I remember being told (by someone...who it was was irrelevant compared to what they were offering) that I could either go to the Louisville Zoo or some other place since I had been such a brave girl for the surgery. I don't know what the other option was because even at age five, I was an animal lover to the core and jumped (figuratively as it was not a physical option) at the chance to go to the zoo. And yet, as much fun as I know I had at the zoo, the experience is hazy except for being pushed around in the wheelchair by my parents, and stopping in front of the polar bear tank, where a polar bear was swimming around and I pointed to show my parents, spilling my red ICEE all over my lap, making me sticky for the rest of the visit. 

In ways, cerebral palsy seems so much easier in comparison to depression. I often feel cheated by depression. Cheated by the fact that it so often feels like a guessing game for the doctors and counselors I work with. We try this drug or that treatment that has worked for x number of patients, and x number have had no problems with side effects...but then I am the one person who throws the stats, has that horrible side effect and the search is on again for the next drug, the next experiment. Mental illness cannot be treated the way my cerebral palsy could. Though medicine has come a long way in figuring out information about seretonin and other brain chemicals, it is still unable to say, "this surgery (pill, treatment, etc.) will prevent any further symptom development."

I have mixed feelings about how depression effects my memories. Sometimes I feel like it probably saves me from memories that are too hard to remember...but other times, I feel robbed--like when a hospital visit that I know saved my life is just a fog in my mind, and when I know that what saved me was not necessarily the medicine and constant medical care (though that was certainly necessary) but what someone said to me while I was there that gave me hope again (something I so often lose) but no amount of searching through the fog brings the courage I found there-- the will to live-- back to my mind again.

And as for rewards...it often feels that they are few and far between. Upon release from a hospital stay because of depression, it's like friends and family breathe this sigh of relief, thinking that if the hospital has released you, surely you are now "ok" and there's no need to worry anymore. It is not that I want the kind of worry that makes loved ones hover over me and watch my every move, but the hospital's goal is merely to reduce the level of care needed. Once you tell them in one of the many mood inventories, "No, I am not suicidal." it's goodbye hospital support and hello world that made me feel this way to begin with. Don't get me wrong here; I have very much appreciated the hospital care I've received when admitted after a suicide attempt and for the most part have been moved quite well through the levels of care: hospital stay, Adult Partial Hospitalization, then work with counselor. I just know that when you leave that hospital room it is not usually with the excitement of seeing a polar bear in a tank at the zoo, but the bear of life waiting on the other side of that hospital door.

However, bear in mind: When I left the hospital after my surgery that day for the zoo, I was equipped with a lengthened achille's tendon and a cast to protect my leg while the wounds healed. Though memories of assistance for hospital stays due to depression may be hazy, the support I've found there leaves me better equipped to handle whatever bears are waiting for me on the other side and the security of the hospital is still available to me should I need it again.

Thursday, January 7, 2010

The Beginning

My mom was worried about me at age two when I had not yet started to walk. The doctor told her to just buy me a pair of high top shoes for more support. She did it and I started walking that day, so she stopped worrying, but the trouble was just beginning.
At age four, I was on a trip from Kentucky to California with my mom, brothers, and grandpa to go to my aunt's graduation from college. My grandpa had a pickup truck with a hard top, so the boys and I rode in back. I fell asleep and was rudely awakened when it was time for a bathroom break. As I scooted out of the pickup and climbed down, I immediately fell to the ground, screaming. My left hip seared with pain and I couldn't walk. Grandpa carried me to the bathroom and ended up carrying me everywhere for several days.

When we arrived in California, the tests began. Doctor after doctor examined me and could not figure out what was wrong. Finally, a specialist discovered that I had contracted a rare hip virus. Through all the testing, it also became evident that I had cerebral palsy on the left side of my body, the affects of which had been triggered by the hip virus. Some of us feel that we've gone from doctor to doctor, enduring test after test, medication after medication, from one therapist to the next with little to no results, temporary results, or treatments "for our own good" that are exactly opposite of that. Sometimes the mental illness is triggered by an event, sometimes like cerebral palsy, it's something that we're born with that reveals itself at an inopportune time (because there is really no "opportune" time for mental illness).

Though I couldn't tell the difference at all, I walked heel to toe on my right foot (which is normal), but toe to heel on my left foot, causing me to limp around. While my uneven gait was obvious to others, I was blind to it. I just knew that something was "wrong" with me because of all the doctor visits and the worried looks my parents would exchange when discussing what to do about Larissa. Depression in my life has been a little like that. I've dealt with it all my life, not even knowing that there was another way to live. Though I knew other people were not depressed, I didn't even know that there was any other option for me--like they had some secret I couldn't access but there was something fundamentally wrong with me; something people could point out, but do nothing to fix.

There is no cure for cerebral palsy. It is caused by a lack of oxygen to the brain at birth and the severity of the illness depends on how long the brain is deprived of oxygen and what kind of treatment is administered. There are several kinds of cerebral palsy, and as I mentioned, mine affects only the left side of my body. The earlier the illness is discovered, the better for the patient, as it can be monitored and treatment can be provided to minimize the affects of the illness in the patient's life. As a child at age four, I did not consider my hip virus any kind of blessing because of the physical pain it caused and the humiliation of undressing in front of doctor after doctor for examinations. However, the hip virus was what triggered all the doctor visits that eventually revealed my cerebral palsy and allowed doctors to intervene before it was too late to prevent my symptoms from worsening.

Those of you who deal with depression or mental illness may have experienced that the sooner you are able to start receiving treatment, whether it be through medication, counseling, support groups or some combination of the three, the sooner life starts to get easier. Don't get me wrong here, I am well aquainted with relapse and the devastation it brings, but I do believe (and have experienced) that the more treatment I receive that works...the less likely I am to relapse or the less harmful the relapse is. My point is that for a lot of us, depression is a lifelong companion once it arrives and it sucks. Treatment is often painful and we'd like to avoid it--the undressing of our souls for doctors and peers to examine--but like cerebral palsy, avoidance serves only to worsen the symptoms and prevent recovery.

Monday, January 4, 2010

Introduction

Over the past year, I have been fortunate enough to find an amazing amount of support from family, friends, hospitalizations, and peer support groups to help me deal with the depression that has plagued me all my life. What you will find here is a work in progress--both in my writing and in my life--and possibly the hope that surprised me and the courage I found to put my energy into living rather than dying (as Shelly would often admonish me). Speaking of Shelly...

It was Shelly who first made the comparison that changed my perspective so completely. She said it in passing during group one day, but it stuck with me in a way that lessons in my hours, months, and years of therapy have never succeeded in. I was at Adult Partial Hospitalization--again--after one of my many suicide attempts. I was ashamed and discouraged. I had been through the program twice before and thought about what a failure I was to end up back there again after attempting suicide when I had sworn off it during my last visit at Partial. The general feeling in the room that day reflected mine...we all felt like giving up, like the staff were wasting their efforts on people who would never recover, never be able to walk the way everyone around us seemed to do with such ease.
I think there was a hint of exasperation in her voice that day when Shelly said, "You guys, it's like learning to walk. You would never blame a toddler for not being able to run right away or tell him he had failed when he fell down. We understand that that baby is learning and is going to fall along the way. You have not had the opportunity to exercise these skills since childhood. Go easy on yourselves. It's like learning to walk...it takes time to change your thoughts and your habits, and of course you are going to fall from time to time in the process. And that's why we're here...to help you get back up and try it again." The group moved on to other topics, but I have considered that metaphor ever since the day Shelly mentioned it.

Perhaps it sticks out for me more than it has for others because walking has been somewhat of a struggle in my life. I was born with cerebral palsy on the left side of my body, which was not diagnosed until I was five years old. At times, it felt like the diagnosis did me more harm than good. At times, it was an excuse to keep from taking risks. At times, it opened doors to experiences that changed my life. You will find those times and more in the entries to follow. My struggles with depression have mirrored my struggles with walking in so many ways that you will see the two intertwine again and again. Welcome to my walk with depression.