Depression and anxiety can be so frustrating, not only for the horrible, uncontrollable thoughts they flood your head with, but also the way in which people who don’t suffer from them respond to you.
“Well, you shouldn’t feel that way.” And of course, there’s always the shot-to-the-chops-deserving “Snap out of it!” Seriously…if someone ever says that to you, just smack ‘em in the face. They’ll be lucky if it’s open-hand.
Even my husband’s attempts recently were frustrating to me. He tried what I always try to do myself – keep my mind on others, and the suffering they’re going through. I have a younger cousin who is helping her husband fight leukemia, keeping her away from their three children. Recently she’s had to hear her daughter crying on the phone because she missed her and needed her so badly, and she missed her youngest son’s first steps. On top of that, this horrible disease keeps them up-and-down. At one moment it looks like he’s in remission and going to get over this…the next he’s throwing up, feeling awful, and back in the hospital. As of yesterday, he is in the ICU, intubated (on a ventilator, like I was), and not doing very well. We all keep praying for him and my cousin, hoping he will pull through this. It’s helping because he’s doing better today...it’s just so up-and-down for them. Whenever I start thinking about what my cousin is going through I start tearing up. I’m going to go see them tomorrow.
If it weren’t bad enough that a father of three were fighting that awful disease, my cousin’s friend Deborah is helping her six-year-old daughter to fight leukemia. SIX YEARS OLD! That’s why those St. Jude’s commercials are always so heartbreaking: we hate to think of such a horrible thing befalling an innocent child. This little girl Jessi is beautiful, a fighter…the epitome of strength. She will NOT give up, prompting the hashtag #Jessistrong to catch on with her many supporters. I have never met them, but I have prayed for her and her mother daily, and been brought to tears by their story many times. I cried the most the time I heard that Jessi was scared and crying that she wasn’t ready to die yet. I don’t know how a mother stays strong when she hears her daughter like that. But Jessi WILL NOT give up…she WILL NOT stop fighting. She would rather yell at God, warning Him not to give up on her, than give up on herself. She is an inspiration to everyone who comes across her. I encourage you to check out the Facebook page her mother set up, and to pray for and help support her through this fight. Her page can be found at https://www.facebook.com/groups/712546025544301/.
I keep my cousin Kathy, her husband William, her friend Deborah, and Jessi in mind when I start getting down on life, and feeling like I don’t want to be here anymore. I try to think of Todd Crawford, whose wife Lisa Colagrossi wasn’t as lucky as some of us are, and who was killed so suddenly by a hemorrhaged brain aneurysm. Todd and their two boys are left to get through this life without her, although she will never be far. One thing I pray when I pray for them is that they always be able to feel her presence with them, right alongside Jesus, and that they be able to draw strength and comfort from that. My heart breaks for them, though. Their lives can make me feel very unworthy of the two miracles I received. Theirs, and the fifteen-year-old boy I heard about soon after being released from the hospital. I will never forget him, even though I don’t know his name. He was helping his mother to move a piece of furniture. Suddenly he said something like, “my eyes hurt,” and fell down dead from a hemorrhaged brain aneurysm. That’s the way I heard the story from the person we were living with at the time – they worked with one or both of his parents. I could not get him out of my mind. How had I just survived two massive brain aneurysms hemorrhaging, when this kid five years younger than me (and probably in much better health) had been ripped so suddenly from his family by one? It seemed so unfair, and it put into perspective for me just how big of a miracle God had granted my loved ones. Not only did they get to keep me, twice…but they got the real ME back. So many others don’t even get the first blessing. It was a humbling and saddening realization, and one that on many days can help me out of my funk.
On other days, I go further out of my own circle – to the parents living on the streets with their children, wondering how they will feed them and keep them dry and safe. To the homeless old man who’s been on the street so long he can’t even remember a better life. To the people living in shanty villages in India, still managing to sing and find reasons to smile. If those people can live shoulder-to-shoulder, sleeping on dirt floors, and still sing…why can’t I?
The problem that people without depression and anxiety don’t understand is that it is a serious illness, and something you cannot just turn off. Many days, thinking about the plight of others will do the trick…thinking of Jessi’s strength will make me feel guilty enough to pick myself up. But other days, I just can’t shove the dark thoughts out. That’s what happened recently when, after a few days of me just feeling down in general, my husband tried in vain to remind me of the struggles others are facing at this moment that I am not. I had him, he reminded me, a home, plenty of food in the pantry, and a big family that cared about me. I had so much more than so many others.
I told him, and not for the first time, “I want you to know, I thank God for you every day, and you mean everything to me, so I don’t want you to feel bad when I get depressed,” but, I explained to him, some days all the positive thinking in the world just can’t pull me out of my rut. The dark thoughts just keep creeping back in and clouding up the positive ones.
He tried before to tell me to do a “Star Wars shift,” to move my mind from the bad thoughts to happy thoughts. You know how Star Wars shifts from one scene to another…the camera just pans over? That’s what he’s talking about. He deals with anxiety, and can be prone to panic attacks, so when his mind can’t get off something, he “Star Wars shifts” his mind to a happier thought. I’ve tried this before, but the feelings of depression can be so deep and dark inside my head…I’ll “Star Wars shift” to something else, but my mind jerks it back to the other scene, before the camera even has time to focus on the better thought.
When I couldn’t get out of my funk for several days, I decided I’d devote my next blog post to dealing with depression, especially in a life after strokes, or more specifically, after hemorrhaged brain aneurysms. In that case, not only has there been blood on your brain, causing brain damage, but likely your whole way of life has been changed, and it’s hard to come to terms with it.
I spent the last few days researching depression after aneurysms, and while much of it was information that I had already experienced myself, one fact caught me by surprise. While researching depression after strokes on webmd.com, I found that while many people become depressed after a stroke or “mini-stroke,” up to 2/3 are not getting the proper treatment, according to researchers in the journal Stroke. Chad Miller, MD, an associate professor of neurology and neurologic surgery at Ohio State University, said “Depression needs to be added to the checklist of things that [stroke] patients need to be evaluated for.”
I just couldn’t believe that it wasn’t already at the top of the checklist…not only is it not at the top, but it isn’t something all stroke doctors even check for, although Miller says they are all aware it exists. “Each stroke doctor is somewhat aware of this [risk], but it may not be one of their priorities,” Miller says. Often, stroke specialists are more concerned with addressing risk factors to prevent another stroke from occurring, as well as the patient’s rehabilitation. Well, I am here to say that depression is something that needs to be addressed early on with each stroke and aneurysm patient, as they may not realize it…but it’s coming. And depression could be very hazardous overall to one’s rehabilitation, as well as their ability to get on with life overall.
I was diagnosed with clinical depression at the age of seventeen, following a breakdown in my junior year of high school. After walking around the house like a zombie for two weeks, refusing to go to school, my mother took me to her psychiatrist, who referred me to a psychologist next door so that I would have someone to talk to. After a few visits, they determined it would be best for me to get out of high school. Impressed by the maturity I already exhibited, my psychologist said “You’ve gotten everything you’re going to get from there, you just need to move on.”
My parents spoke to my principal, and were surprised to learn that I was one of at least three girls who’d had an emotional breakdown that year. We got everything worked out – I signed up for extra classes and summer school to finish up all the necessary credits, and we were able to use my 3 racing school experiences to fulfill my remaining PE credit. I wound up graduating the summer after junior year, going to England and Scotland for two weeks, and then moving into my first apartment. Things went well for about a year, but around my nineteenth birthday (a year before the first hemorrhage) it was kinda going to shit again. My doctor switched my medication from Lexapro (which had worked fine for a long time) to Prozac.
When I was Life Flighted ( Life Flit? Life Flown? I dunno…) to the hospital, everyone had been so focused on saving my life that my antidepressant medication never came up. It wasn’t until two months later, after the second hemorrhage, when I was lying in the neuro ICU pod, literally losing my mind, that the subject came up. I had been diagnosed with “ICU Psychosis” – defined as “a form of delirium, or acute brain failure,” brought about in my case my medications and trauma. I was distraught, confused, terrified, and surrounded by the horrifying sounds of groaning patients, and the maddening out-of-sync beeping of machines.
My one ray of sunshine in that dark place was the short visiting times when my parents could come in and see me. Mom was in there one day, explaining to me why I was in there again, and that I’d been diagnosed with ICU psychosis. In a rare lucid moment, I reminded Mom that I had been on antidepressants for three years before this happened, and no one had given me anything for two months. Hadn’t we been told never to abruptly stop taking them? I was sure that wasn’t helping.
After relaying that information to my doctor, she put me on Zoloft. I at least thought that was hilarious: “I’ve now been on all the stereotypical ‘crazy’ drugs!” I leveled out some after that, but still had my ups and downs. I was confined to a hospital bed, half paralyzed, and my life forever changed – there were plenty of downs. I was just happy when I was finally out of that neuro ICU pod again. But there were always moments when I’d remember the life I had known up until that point, now seemingly so far removed from where I was. I would hear people running back and forth down the hallway, driving me crazy. Did they have any idea what they were taking for granted? To someone who couldn’t even walk at the time, it crawled all over me. At times I’d hear about what my friends were getting to do and feel left out.
This was just my experience as someone who had depression before their injury. Many people go in with a stroke or aneurysm without depression, but will wind up suffering from it because of the trauma to their brain and drastic changes to their way of life. When your whole way of life changes, and you find yourself unable to do so many things, it could cause the sanest person to sink to the lowest depths.
The study which was reported in Stroke took place about 3 ½ years ago. It included 1,450 U.S. adults who had suffered a stroke, as well as nearly 400 who had a TIA (Transient Ischemic Attack, a.k.a “mini-stroke”). The conclusion was that depression does follow strokes and TIAs. About 18% of the stroke survivors and about 14% who’d had a TIA were depressed three months after their hospitalization. The depression also stayed with them: About 16% of the stroke survivors and 13% who’d had a TIA were still depressed one year after their injury. The saddest part is the lack of treatment in many of these individuals. Nearly 70% of people with persistent depression were NOT being treated with antidepressants at either the 3- or 12-month point, according to the researchers. “There is a stunning rate of undiagnosed depression in this group,” Miller said.
I’m somewhat torn on this, as the older I get, and the closer I get to trying to have babies, the less I want antidepressants in my life. When my husband and I start trying to get pregnant, I will be getting off of my antidepressants, as I do not want to take any chances, considering all the studies that have come about in regards to antidepressants and birth defects. I have a good friend from high school who was going through her own personal hell that I couldn’t even imagine during that aforementioned junior year. She had been taking her own mental health cocktail for years, but about five years ago (with help from her doctors – NEVER do this without the knowledge of your doctors) she was able to wean off of them. She no longer wanted to be numbed…she wanted to feel again. She made many lifestyle changes to help her deal with her depression, and she’s doing (and looking, I must say) fabulously. When bad feelings start creeping in, she hits the gym or takes her dogs outside to get some all-important vitamin D. She works out practically every day, or does something to get her body moving and endorphins raised. She’s very active and living a much healthier lifestyle, which helps her to deal with her feelings as they come along. She’s also gotten very good at noticing and identifying her feelings, allowing herself to feel them, and dealing with them in her own way. She’s an inspiration to me, and I’m really hoping she can help guide me to do the same, as I want to make those lifestyle changes before I start making babies!
All of that being said, however, there was a time when I could not have even considered getting off of my medication – I was already too close to the edge. I fought suicidal thoughts back in those high school days, and was no stranger to cutting myself. After I got hurt, the suicidal thoughts came back with a vengeance. If I thought I had something to cry about in high school, it was much worse after two hemorrhaged aneurysms. Dealing with having the same personality, loves, and dreams, but only half of the use of my body was incredibly traumatic. I’m sure that is what causes depression in most aneurysm survivors. I found it interesting, and understandable, that the study found that depression was more likely to last in people who were younger, were more disabled by their stroke, and who were unable to return to work three months after their stroke. Hey! I hit the trifecta!
My first aneurysm struck – as you know – the day I left my teens behind and turned twenty. Man did those twenties start with a bang! And it took a long time for them to get better. Having been more physically disabled by my two strokes, my brain still functioned (essentially) as it had before. I still told my body to do things, and wanted to be able to do things, but I couldn’t. Having the ability to do things you took for granted for twenty years taken away from you hurts almost as much as it infuriates you. On top of all that, being so weak and atrophied, and unable to walk for the first couple of months, made it impossible for me to return to school for over a year.
The idea of work was, and basically still is, impossible. The way in which my mental faculties were affected by the strokes came in the form of what is called emotional lability – defined as “a condition of excessive emotional reactions and frequent mood changes.” This often includes uncontrollable fits of laughing or crying, which I have (somewhat) under control. Right after I got hurt, though, I couldn’t control my crying at all. Anyone at my Grandma’s funeral that December could tell you how I sobbed loudly in great, heaving wails. I will still hyperventilate when I do begin crying uncontrollably, but it’s not as bad as it used to be…I can usually calm myself down. The biggest factor of my emotional lability that keeps me from working is the inability to deal with stress: something a Social Security worker learned firsthand when I became flustered and couldn’t stop crying. Fortunately, my mom was out in the waiting room, and she was able to call for her to help me explain.
When I think about my secretarial jobs before I got hurt I think of answering multiple phone lines, keeping up with who was where, transferring people, taking messages, copying, filing, helping engineers put packages together, typing, and lots of walking up and down the hall. If I tried to do that job now, I think I’d have a nervous breakdown and collapse into screaming cries when a second or third phone line rang.
The changes in your emotional capacity are another way in which you feel weird and different from others, and feeling less capable makes you feel so much lesser than others. You feel so isolated. This brings me to the next valuable information I learned while researching.
My previous information came from studying depression after stroke on www.webmd.com. The following information came from the Brain Aneurysm Foundation, which can be found at www.bafound.org, and it covers depression after aneurysms specifically.
According to the Brain Aneurysm Foundation, depression is common to all survivors, and it’s important that you openly share your feelings with someone close to you, as well as with a medical professional who understands your condition.
While it IS very important to share what your feeling with those close to you, it’s having to depend on others as you recover, and losing your sense of independence, that can cause you to feel so depressed. It chips away at your confidence and makes you feel like a child again.
I had just gotten myself where I was really independent. I could live on my own, I’d been in college, I’d had a job. I went out with my friends, did whatever I wanted, and had to answer to no one. Then BAM! I’m thrown back into dependency on my parents. There was a time when I couldn’t even get out of bed to use the bathroom without Mom helping me transfer into my wheelchair. At least, once I started using a bathroom. Let’s just say there are some very humiliating aspects to recovering from a brain injury…one involves having to regain control over your bladder.
Another part of your new reality that makes you feel less capable and, let’s admit it, inferior to others, is the fact that your daily activities are now affected by mental and physical fatigue-ability. This was a BIG problem for me, and still is from time to time. The Brain Aneurysm Foundation even perfectly identified the things which can frazzle me most: “Intolerance to being rushed, to groups of people, to small children, to lack of order and routine, and normal sound levels.” Although I must say, sitting in between a drummer and a bassist’s amp while a heavy metal band practices will help you get over any sound issues. It also didn’t hurt that I was raised around racecars, dirt bikes, and race tracks. The noises that overwhelm me come from being surrounded by too many people.
I definitely can’t handle being rushed – I react by getting angry. More than once I’ve snapped at Scott to “just go without me,” or threatened “THAT’S IT! I just won’t go!” And social situations, especially those involving large groups and small children, are something I can only tolerate for a short time. My family knows I will often be leaving the party early, as the noises and people will start to stress me out and mentally exhaust me, which leads to physical exhaustion. Sometimes, if I’ve had a few glasses of wine and have stayed for too long, Mom will come over and ask “Do you think you’re over-exerting yourself?” Usually this is because one eye is starting to droop from fatigue, and she can tell I need to get some rest.
And malls? Are you kidding me?? One of my favorite pastimes from my former life is now something I truly hate doing – nothing can make me want to go on a rampage quite like having to navigate morons at the mall. Once a kid screams at the top of their lungs it’s time for me to leave, lest I get in a fistfight because I offered unsolicited parenting advice.
I definitely notice my depression is higher when I have a lack of order and routine. That’s why I always prefer to be in school - despite the stressors it adds, it gives me a routine. I haven’t been back in a few semesters, and I’m sure that’s not helping my depression. I have no real routine right now, and that’s part of my problem.
As the Brain Aneurysm Foundation tells you, “patience and time are your two best allies to the success of your recovery,” and “know that it gets better over time.” That has certainly been true for me. About 2 ½ years after my injuries I was able to move into my own apartment, and since then I’ve managed to keep up a sense of being capable of independence. Over the past eleven years, many of my emotional problems have also improved, although the emotional lability may never go away. Depression, anxiety, and an inability to handle large amounts of stress are what I still struggle with.
A big part of emotional lability is losing control over one’s emotions. Most survivors will experience at least temporary loss of control over emotions. In some cases, like mine, the brain has been injured by blood, which can cause changes in one’s emotional state. One way my family was blessed to get the real “me” back was that it didn’t change my personality. I saw a true crime story where a man who had been beloved by everyone had a stroke and it completely changed his personality for the worse. In the end, he became paranoid and wound up killing his entire family and then himself. It was very sad, because the real “him” had been lost to the stroke. Fortunately for my family I stayed the same [enter smart-assed comment from Dad here], although I did suffer other emotional issues. Loss of one’s emotional control “can manifest itself in anger, frustration, and lashing out at oneself and others.” The Brain Aneurysm Foundation warns that confusion about the trauma is common, so it’s important to talk about it with others. If it becomes too much to deal with yourself, they (and I) urge you to seek counseling, especially with someone who understands your situation.
Soon after I got hurt, I could get so mad I’d fly off the handle at someone, then immediately burst into tears because I felt so bad for doing it. Many things could cause me to burst into tears, and as I said I could not control my crying, or rather, wailing sobs. I never thought the inappropriate laughing was a problem…to me it was just funny! It can be a problem, however, when someone’s trying to tell you something serious, and you just sit their grinning like an idiot, trying not to laugh. I hate it when that happens. I think it’s just exacerbated for someone who always laughed and smiled as a nervous reaction.
All of the things I have referenced going through can cause changes to your self-image, self-confidence, and overall self-esteem. Having new physical and mental limitations that you didn’t have before, whether they make you dependent on others or feel less capable of handling tasks, can do a number on your self-esteem. Any changes to your physical appearance can add on to that. Until I met my husband, I really felt like all anyone saw when they looked at me was the drawn-up arm, the limp, and the cane. I felt like an ugly, lumbering, clomping Frankenstein, and as a girl you can only imagine what that did to my confidence. For a long time, I thought feeling pretty was a thing of my past, but over time I did get (some of) my confidence back. I have to credit my husband for a lot of that…he makes me feel more beautiful and capable than I think I am.
You are never any less capable of living a normal life than you were before, it just takes time to get used to the “new” you, to your new limitations, and to find ways to work with them. I’m still finding new ways of doing things eleven years down the road. It takes time to heal and adjust your surroundings to accommodate you.
Lastly, I want to briefly talk about sleep issues and loneliness. After suffering an aneurysm, many people have changes in their sleeping patterns. Some can’t sleep at all and develop insomnia, while others seem to sleep all day. I fall into the latter category. Between the initial trauma, my many medications (including seizure meds and muscle relaxants, which can knock you out), and exhaustion from the toll my spasticity takes on me throughout the day, I don’t usually have trouble sleeping. More often than not I worry about sleeping too much. If you are having problems sleeping, or any concerns about it, you need to bring it up to your doctor.
Loneliness was a big problem for me after I got hurt. You feel different, and whether it’s self-imposed or just because you haven’t been invited out in a while, you can find yourself being isolated for long periods of time. It can be due to not wanting to deal with others, not wanting to feel inadequate in comparison with others, or it could even be that your friends stopped inviting you out because you shut yourself off after you got hurt, and they don’t think you want to be around anybody.
Talk to the people closest to you and try to figure out why you’re finding yourself isolated. Reach out to your family and friends, let them know you need to be around people. Reach out to someone. You aren’t going to do yourself any favors by shutting yourself in. Take it from me – that only makes the depression worse. My recovery improved by leaps and bounds when I started the TIRR Challenge Program, because it forced me out of the house every day, and into social situations. Going back to school only further helped me to regain my confidence and feel more “normal.”
** If you are feeling depressed, with or without an aneurysm, please seek help. No one should suffer alone. There are many ways to treat depression, and despite my previous comments about antidepressants, some of us who’ve had our brains hemoglobically changed may never be able to feel balanced without them. Everyone’s chemistry is different, and it’s something you have to decide WITH your doctor. I hope at least some of this has been enlightening, either to help you understand your own depression more, or someone else’s. Keep hanging on!