Misbehaving in prison is a bad idea. The powers-that-be do not approve of bad behavior, and they have some unpleasant tools to discipline those who break the rules. Solitary confinement is the current punishment—along with extending the time to be served before the possibility of parole, but in the bad old days, they had The Hole.
The Hole was solitary with some other sadistic touches thrown in. It was usually kept dark, and sometimes sound-proofed so that even the noise of the other prisoners was muffled. Unheated and damp cells were often used, along with nothing to sleep on, and a bucket and/or a hole in the floor for a latrine. At Alcatraz, the prisoner’s food wastossed into a blender and reduced to a sort of wretched smoothie with some beet juicethrown in, so that whatever flavor there might have been, became beet. Food was passed in through a slot, so that even that necessary moment of interaction was deprived of all humanity. Guys often came out of the Hole not quite right in the head.
Nowadays, such practices are forbidden as being inhuman and torturous. But the Hole still exists—in the heads of people with depression.
It’s hard to explain to a person who has had the good fortune to never have experienced such a thing. But if you know someone with depression, odds are good that they know about the Hole and that they’ve done time there. The Hole is the place where hope and light and the view of tomorrow have all vanished. There’s just an endless gray expanse of I’m Screwed as far as your brain can see.
In the Hole, we lose the ability to remember what life was like before it. We lose the ability to project life after it. We can’t imagine that there is a way out of it. Life will just continue being a struggle—fighting to remember things, fighting to find the energy to eat (food tastes bad) or to walk (the Hole includes a level of fatigue comparable to having just completed a week of the flu). Interacting with other humans feels too difficult to contemplate—and even if that weren’t the case, the conviction that no one would tolerate one’s worthless presence except as a strained courtesy is part of the package.
It is a fundamental sense of having lost one’s humanity, of being the shivering dog in the ASPCA ads, alone and unwanted and covered in fleas. The Hole is why depressed people sometimes commit suicide.
This is why anti-depressants are life-savers: They put a floor in the Hole. As one sinks into the sense of detachment and enveloping shame—or worse, into the bog of numbness—there is a sudden stop. The sides of the Hole no longer rise so high you can’t see out; with luck—and the right dose of the right meds—you can even see that you could climb out, if you can find the energy. The sense that it will not always be like this is achievable, if not always automatic. Sometimes you can even conjure up a happy memory and think, “Life has not always been like this.”
If your brain is normal, you could take anti-depressants for a month and they wouldn’t give you a high. (You would have trouble sleeping and break a horrible sweat, and much worse is possible, so please don’t try it.) They aren’t the ‘pep pills’ that were used back in the 60’s to try to banish depression. They just keep your serotonin (and in some cases, norepinephrine) levels from crashing below the threshold of functionality. They don’t put you back in the normal world—but they do add a lightbulb and a window looking outside. This is literally life-changing for a person with depression. It’s no longer the Hole, just solitary confinement until we find our feet again.
I have extra experience with the loss of perspective due to brain irregularities, and this is because I suffer from migraine. Migraine is caused by abnormal electrical activity in the
brain—one book I read described it as a wave of electrical potential sweeping out
like ripples from a stone tossed into a pond. It causes some of the semi-automatic functions of the brain to misfire. In particular, it messes with the limbic system which affects memory; social cognition; rage and passivity; and overall emotional function. In
other words, it literally scrambles the circuits that add emotional flavor to our memories and ideas of the future.
There is a moment in the depths of a migraine when one has a wave of panic: “It’s not getting better. It’s always going to hurt like this. I can’t take this much longer!” and it seems as though the pain has been going on for hours. (For me, this moment usually hits about half an hour or forty minutes into the headache—right before the meds kick in.) This overwhelming sense that migraine is not a passing event but is the new reality of life—that is the closest thing I know of to the Hole in any other realm. It’s a comparable level of not being able to access memories or project a future outside the present emotional context. It’s literally not possible with your brain in that state to have the usual processes occur.
I mention this for two reasons. First, because I had a friend suddenly understand what the depression Hole is like, because I drew this analogy and she has migraines. Second, because the lessons I learned from migraine turn out to be useful in dealing
with the Hole of depression.
1) Accept that it is happening. You can’t make a migraine—or depression) better by just telling yourself it’s not real. This is not a weakness of character: It’s a medical condition due to unusual brain activity.
2) Get to a safe place. You can’t make it go away by trying to act as though it isn’t there. You have to take care of yourself and not try to do anything except get home (or to another safe place) and ride it out.
3) You can shorten the course and severity by taking your medication—and if you don’t have any prescribed, by seeing a doctor as soon as you can get someone
to take you.
4) While you can’t make yourself not feel like your life is bad, you can remind yourself gently but repeatedly that this has happened before and it passed. Sometimes that feels like stating utter nonsense, but the act of focusing on the
words, “This is temporary and things will get better” can help you stay out of the whirlpool of panic or sorrow. (For depression, I say that out loud; for migraine, sound is painful so I just think the words over and over.)
5) Accept whatever help you can get. For migraine, that means having my kid or spouse bring me my cold flax bags, going in a dark room, and lying very still until the medication has done its thing. If I am away from home when the prodrome (pre-migraine weirdness) strikes, I need to call someone to drive me home. Being in control of an automobile is not safe when I’m in the throes of migraine; and sometimes, when I’m in the Hole.
6) Have compassion for yourself. This is actually the hardest step to take, and one I am only now getting good at. If a friend was going through a migraine, or suffering from depression, I’d never expect them to be able to maintain a normal schedule! Try to grant yourself the same compassion you would show a friend. It’s not being ‘selfish,’ it’s being reasonable and fair. It’s okay to be fair with yourself, and it’s necessary to be reasonable if you want to accomplish anything lasting in life.
Some people have situational depression, that is, they are depressed because of something bad happening in their lives: the death of a loved one; the loss of a job; getting a bad diagnosis (or worse, having symptoms and tests and not getting a diagnosis, which is very scary). It’s a natural and common reaction to something shitty happening in life. Some people have affective depression, that is, their emotional mechanism (affect) is out of true due to neuro-transmitter imbalances in their brain.
Whichever is the cause, you can find yourself in The Hole. Sadly that’s how it is: You discover you are there. Like stepping on a rotted plank, you know after it happens that you’re no longer on the level but sunk in the mud. That’s okay, you know it now. Take a few deep breaths and then remember the six suggestions above. Accept it’s real; Get to a safe place; Medication; Remember it will pass; Accept help; Have compassion. In fact,if you have a friend or a loved one in trouble, you can help them with any or all of those steps—you can grant that help; you can provide transportation; you can reassure them that it will pass; you can get them their meds or support that trip to the doctor.
And please, share this article with them. It is great solace to learn that you’re not theonly one who has done time in The Hole, and a ray of hope to find that others have found their way out again. You’re not alone; this is not a dreadful fate meted out to you.
It’s a medical issue, and it needs to be treated as one. Nobody would tell someone with heart arrhythmia to “snap out of it.” You’d tell them—or yourself—to take your meds and take action, doing what is known to have helped before. And you would have compassion for their suffering..
The other day I awoke, took my first set of morning pills that have to be taken on an empty stomach (and then no food or drink for 30 minute after), and then did something very stupid.
I forgot to take my other medications, the ones that require food.
My dog decided to go ballistic over a new puppy next door, and I was busy dealing with his barking. I then just went on with my day.
WHAT A DAY IT WAS!
I began to feel very weak and unwell. This was not only physical, but also mental. Now, those of us with a chronic illness deal with a lot of depression. Pain demands a great deal of energy, both mental and physical. I am aware that one of the medications I take does not “build up” in the body and missing even one dose is dangerous. I was about to find out how dangerous.
I had cramping, a blazing headache and started shaking. What I was truly most frightened about was the depression and anxiety that set in quickly. Each hour brought more pain and more anxiety. I felt I simply could not live with so much pain and depression. While not suicidal, I was using all the tools and tricks I knew to keep myself somewhat calm.
I began monitoring my physical symptoms, making sure that they did not escalate to where I would need to go to the hospital. I was ready to go in if needed, and knew it would be important not to drive myself. I had the number of the local taxi service out, and also had texted my husband at work. Thankfully, before I got to that point, I figured out the problem.
Do you have a tool box full of tricks and treatments? The time to “wing it” is not when you are in the middle of a crisis.
So what were the tools I use? What’s helped me in the past deal with a sudden onslaught of pain and depression? Here is the short and the long version! WHAT TOOLS DO YOU USE? PLEASE SHARE! Because you can never have too many tools when dealing with chronic illness!
Cliff Notes Version
1.Depression lies (thanks Bloggess)
2.Laugher is the best medicine
3.Distraction is important. (thanks youtube)
4.Have friends on stand by at all times.
5.Nature is good
7.Stop trying to do stuff, especially stuff you don’t want to do.
8.You have an illness, of course at times you will feel unwell!
9.Share you are having a rough time of it. (this includes sharing with your physician or go to the ER if things really escalate)
10.Don’t forget to take your medications correctly! They can only work well if you follow directions on when and how to take them!
My Tool Box
1.Remember the Bloggess. Jenny Lawson (aka the Bloggess) has blog posts that are helpful in two ways. The first way is she writes about the important fact that DEPRESSION LIES. My depression was lying to me saying “This pain is so horrible, I can’t live with this. Obviously the medication is not working. You’ll never be able to do anything other than suffer….” I just kept remembering it was lying to me and just a few days ago I felt great, and I would feel good again soon.
2.Remember the Bloggess. Again. Because it’s important to DISTRACT YOURSELF. That means avoiding anything depressing, like self help books about depression. Or sad movies. Or the news. You have to laugh, and some of her blogs will make you laugh. Think giant metal chicken, and you will survive. I also recommend the youtube bloggers Simon and Martina at Eatyourkimchi. Martina suffers from a chronic illness. She gets your pain, but she also shares the comedy aspects of life in South Korea. You will laugh.
3.Think “Kitten Videos”. My daughter called me from half a world away, where she lives, and told me “Watch kitten videos”. Anything that makes you go “Awww” works well. Also cats will make you laugh. Avoid anything with Sarah McLaughlin, we want happy videos about animals. This cat site has calming videos of Persians. The most famous is India the kitten. Also call your own pets over, nothing is more calming that our pets!
4.Remember your friends. I’ve recently moved to a new neighborhood, and I really don’t know anyone well enough yet to knock on their door and say “Can I just sit here for a bit, I’m scared.” Instead I have a mental list of everyone I could text and call that would drop everything to be there for me. Just to listen. The list was topped by two great girlfriends, and they also have my husband’s phone number. The point wasn’t that I talked to anyone, the point was I knew I could talk to someone if I needed them.
I would also like to especially thank my friends, who while I did not call them, are always there for me. When you give someone with a chronic illness permission to call, you are doing a good deed. Just the KNOWLEDGE that I could call my friends made me feel less anxiety and safe. Want to be a hero? Just give a friend permission to “call if needed” with no judgement- just support. Even if they never call you, that knowledge “I can call” is a wonderful gift that will help your friend through tough times.
5.Go outside. If this was a real depression, not a lack of drug reaction, this would have worked pretty well. It was a beautiful day and the combination of sunshine and walking the dog would have lifted my spirits. I felt anxiety so I took the dog for a walk in the wooded area behind my house, and nine of out ten times, this makes me feel better and that at the very least I made the dog happy!
6.Break the rules. Dieting? Eat something you like, and forget the calories. Find a great book on Amazon, who cares about the budget! Order that $15 book and munch away on buttered popcorn. Indulge. You are interested in getting through the NOW, and you do whatever it takes. Probably a glass of chardonnay, or a bottle of chardonnay, or heck a barrel of chardonnay, is not a good choice. But for me, food and a book works very well. Also know your body. A glass of wine is very helpful for many friends with chronic illness. If it works, and you feel comfortable with it, do what works.
7.Don’t try too hard. This is the most difficult for me. I hate that when I am depressed or in pain I have a “Wasted day”. NOTHING is going to get done. I’m just going to deal with the illnesses all day! So I keep trying. I cleaned the litter box, and I was “There I did something!” But I was exhausted and felt guilty as that was all I had done. I had to then assure myself “You have a serious illness, and taking care of yourself and dealing with this illness IS YOUR JOB.” I assured myself I would feel better, and it was time to stop faking being well.
8. Give yourself permission to feel unwell. This ties into number 7, if they day is a write off it’s fine. It’s not a write off if you are battling to keep sane and deal with waves of pain. That’s job enough, don’t try to throw making a huge dinner or cleaning all the bathrooms on top of it. If you are not a positive Pollyanna type, accept it. My neighbor with RA is very upbeat. She is “In the past we’d be in wheelchairs!” (I have also hints she is on some wonderful meds I avoid!) I’m not going to be upbeat all the time, and that’s fine. We should not let others tell us how to deal with our personal chronic illnesses. Grumpy cat types unite!
9. Make sure people know you are feeling unwell. Ask them to check in with you. I sent my husband a text, telling him how things were. He called right after he got out of a meeting. If you know someone is going to check on you, especially if you are alone, you’ll feel safer. I even reached out to people in Facebook, just in a PM, “I’m feeling bad, I’m having a bad day.” They checked back throughout the day.
10. CHECK TO MAKE SURE YOU DID NOT MESS UP YOUR MEDICATION! When I felt myself getting worse, I thought, “I’m going to take my next dose of medication early, I can’t wait another 2 hours.” As soon as I saw that pill container with the arthritis drug I felt instant relief. I still felt like crap but I KNEW WHY. Medicine timing is very important. Read the instructions, and be clear with your doctors about WHEN is the best time for taking a medication. My thyroid medication took almost 6 months to figure out. When I took it at night on an empty stomach, I suffered from insomnia! The middle of the night, I awoke about half an hour later with insomnia. First thing in the morning works best. However, not if I forget half an hour later to take the other 3 medications I rely on. Medication juggling is very difficult. We have to be vigilant.
Medication mix ups can also be very dangerous. I was getting ready to call my physician right before I discovered what had happened. I knew that I was getting worse instead of better, and that my “tools” that usually work well were failing me.
…..also you don’t have to have a chronic illness (or two of three) to share your TOOLS that get you through the tough times. I would love to hear more ways people have of making it through the tough times.
My Facebook feed is full of various links to the delightful articles entitled:
“TEN TOXIC FRENDS YOU SHOUD DROP RIGHT NOW AND LAUGH AND DANCE ON THEIR GRAVES AFTER THEY COMMIT SUICIDE BECAUSE YOU REJECTED THEM!”
“TEN TOXIC FRIENDS THAT WILL MAKE YOU TOXIC IF YOU DON’T HARDEN YOUR HEART AND DRIVE THEM OUT OF YOUR LIFE INTO A WINTER SNOWSTORM WHERE THOSE LOSERS CAN DIE!”
“TEN TOXIC FRIENDS THAT YOU SHOULD DROP AS YOU ARE OF COURSE PERFECT AND SHOULD NOT HANG WITH LOSERS!”
The first thing I thought on reading one of these articles was “Wow, there are people that have so many friends they can get rid of up to TEN of them? They even have ten friends? Who has TEN FRIENDS?”
After reading this articles I discovered that I am indeed YOUR TOXIC FRIEND. In fact, almost anyone with a chronic illness is YOUR TOXIC FRIEND. The below is inspired by all my wonderfully brave and strong chronic illness toxic friends.
TEN REASONS I AM YOUR TOXIC FRIEND
Chronic Pain Edition
I will whine and complain a lot. I may not be very positive. I may not find much to be positive about. I probably have just come from my specialist (one of several) who is “In trials this drug helped 80% feel 20% better, however there is a chance you will may catch Ebola. It’s just a side effect though, don’t worry about it.” It’s hard to be your happy positive friend all the time.
I may not be supportive. This is not because I am not supportive of your exciting successful life. If I am honest, I am jealous. I do want to hear about your trip to Madagascar to feed orphan lemurs, and hang with Brad Pitt. Tell me, but part of my heart is breaking that I also can’t feed baby lemurs. (Brad Pitt you can have). So if I’m not cheering about your fantastic life it isn’t that I’m not happy for you. I am. Just give me a few moments to warm up to it. I want to feel part of your life. I just need to mourn the part of my life that is over first. Bear with me, and keep sharing. Remember this is my problem not yours.
. Money. I will be your cheap friend. I won’t be first to reach for the tab. You send me beautiful holiday gifts and in return I send you a home made book mark. I wish truly that I could buy you everything deserve for putting up with me. I wish I could gift you with the knowledge of what your friendship means to me, because I honestly can’t afford to buy you a nice present. Medical bills, especially in the United States, are very high. Co payments for the insured often eat up expendable income. Sometimes money goes for a thumb brace, or a wheelchair, or even just something to make my life easier. I spend too much on books, because I find reading such a wonderful escape. I am cheap as I am broke.
I will not be on time or be reliable. That is because I don’t know what each day will bring. Will I have an arthritis flare? Others don’t know if they will have a killer migraine. Perhaps they will just feel sad, and need a day in bed. Whatever our long term medical issue, the one thing we all have in common is unpredictability. We have no clue if we’ll be able to make that lunch date or not. We may spend time getting ready to go out, to find we are exhausted. We are not to be relied upon, and we know it. Don’t count on me. But know I count on you and your friendship.
I will focus on ME! This means it takes a strong person to be the friend of a person with a chronic illness, because of this we have few true friends. So we will take any opportunity to just dump on you all our miseries, fears and hopes. It is also helpful to talk to someone that is not a close family member or medical professional. Consider listening to someone with a chronic illness a gift to their husband, wife or children. They take the burden of this, and any break is a wonderful gift only you can give them. It is important that I remember to ask about you and your life, and indeed remind me or just butt in with updates about your life. It’s good for me! Also by talking about yourself, and your problems and happiness, takes the focus away from ME, and toward someone else. I can be a good listener also.
I will talk about inappropriate topics. These will include medical stuff you probably don’t want to hear about while eating. I will probably talk about bowel movements and migraines from hell and funny rashes during dinner parties. This is because this is the reality of my life. I’ve had to overcome any respectful distance I had between my body functions and my mouth. I talk with doctors galore about the most intimate and disgusting things, until I become a little too comfortable with it. A gentle reminder that this is gross is welcome, but also, you may just have to put up with my TMI mouth.
You may feel our relationship is one sided. You may not feel comfortable talking about your life and your problems. You may feel your problems are nothing compared to mine, so why would I be interested? This is a common fallacy. I am very interested in the lives of my friends, and while I have to admit I feel overwhelmed at times by my health, I am not overwhelmed by yours. I want to listen. It’s a sign of respect when you are honest and open with me. You will find I have incredible empathy, and if anyone with a chronic illness says to you “Well that’s NOTHING, listen to how awful my life is!” you have every right to drop them as a friend. That person truly is toxic. Most people with a chronic illness do not feel that way. We are indeed happy and glad for our healthy friends. We would never ever wish illness or pain on anyone else.
I probably won’t listen to your well intentioned medical advice. You have something wonderful to share with me. Scientists have found a cure for whatever I have…. IN MICE. My own doctor jokes with me that every article about a scientific breakthrough should be ignored if anywhere in the article it says “IN MICE”. Also, I know you have a friend that found acupuncture so helpful, or an article proving drinking apple cider vinegar cures arthritis. I am sorry if I am not respectful of your advice and caring. I understand it’s because you do care that you share, but if I ignore you advice please don’t be angry. I have a good medical team, and medical science is not able to cure a WHOLE LOT OF STUFF. In fact, it’s shocking how often doctors say “Well, we can manage that, to the best of our ability, but we can’t cure it.” Major illnesses like most arthritis disease and almost all inflammatory illnesses are without cures. Even managing these illnesses is hit or miss. It is depressing, for both patient and doctor. In fact, neurology and rheumatology are the least picked of specialties for new physicians. It’s just too darn depressing to have patient after patient that will only get worse, not better.
I am grumpy sometimes. I may not want to talk. I may withdraw. This is far from the time to pull away. It’s the time to remind me you are still my friend. I could be feeling depressed. Depression is the often deadly companion of any chronic illness. Want to be a hero? Stick with me through the rough times and you could be saving a life. I will be that moody friend. When I disappear for a bit, it’s worth finding me.
I will not be an equal partner in this friendship. I will ask of you far more than you can possibly ask of me. But, your friendship is a gift that makes me feel needed and wanted. It gives meaning to a life of pain and answers that question “Why should I go on?” I should go on as I would be missed by my friends. Plus, you’ll never get empathy and gratitude from anyone like you will from me! Your friendship isn’t just for fun with a person with chronic illness, it may be one of the things that gets them up in the morning. Friendship becomes something so much more than you ever imagined. It’s not always easy, but take pride in how important you are to another person. Your life becomes more important and meaningful through friendship with a person with a chronic illness.
Yes, I am that toxic friend.
But, friendship has an importance to me that it doesn’t to other “normal” people that never make those toxic lists. You will never be more appreciated ,or indeed loved and needed, than by your toxic chronically ill friend.