My mind is like Twizzler candy, all in a twist. Two weeks ago, I finally got up the courage to make a doctor’s appointment and have two spots that people keep telling me to see a doctor about checked. One, I have had for twenty years (I got it checked once ten years ago, and the other, has been growing on the side of my face for six months to a year).
At the dermatologist, I whooped and squealed when they said, the spot on the side of my face is a barnacle and is benign. I got up the courage to show the doctor the other, older, more ominous spot on my shoulder and she said, “Oh, that! Of course, people are concerned about it because they see a pocket of blood, but it is just a grouping of broken blood vessels. You will probably see more of them on your body as you age.”
For the first time in over two years, I don’t have a major medical concern that might be cancer, lead to surgery, or need medication for treatment. Right now, I am relatively free from serious medical concerns except schizophrenia. That hasn’t helped my mind, though. My mind is still in, “I’m probably going to need serious treatment, and I might die mode.” Considering chemo, radiation and two different types of surgery for over two years has caused a type of catastrophic thinking in my brain that is now automatic.
I am a big believer in trying to rewire the brain to break destructive habits and create a more positive, happy, productive existence. Not only does it take time and effort to break negative thinking patterns, but it also takes some calm, some peace, and some distance from the crisis. I just started to get that distance on Tuesday (four short days ago).
When I look in the mirror, I still catch myself avoiding looking at the left side of my face to keep from seeing the round patch of discolored skin there, because I tried so long to trick myself that if I didn’t see it, it wasn’t there and couldn’t be cancer. I also catch myself avoiding drying my breasts with a towel after a shower because I don’t want to accidentally feel the 14 cm (or one of the smaller) masses that have lodged there, thus reminding me of the tests I still need or that I am waiting for results.
Most of us with schizophrenia know the statistics. On average our lives are twenty years shorter than the national average. I am keenly aware that I am in my fifties and will be celebrating another birthday in three short weeks. I am a few short years away from the bleak statistic.
Nevertheless, I want to go from crisis mode, from catastrophic thinking to believe I will live until I am at least eighty. So, every morning I tell myself, “It is possible for me to live until I am eighty.” I know this seems almost childlike in its simplicity, but it is helping untwist my very tired and traumatized mind. Thinking that you might have to deal with life-threatening medical problems for two years straight is exhausting. I believe it changes the way the brain functions and it has a huge impact on our future outlook.
I told my husband the other day; I am tired, so deeply tired. This should be of no surprise to me or anyone else. I don’t need physical rest; I need emotional rest. I need not think that death is looming or surgery, chemo, radiation, etc. are right around the corner. My mind has been like a warrior preparing me for the worst for over twenty-four months.
I have so many friends who have faced these things and received worse news than me and had to go through these treatments. I am not trying to compare my negative diagnoses to their more difficult positive ones. I am not trying to insinuate that my experience is more difficult or even on par with theirs, I am not. I am only saying that my brain has now been trained to be in crisis mode, in preparation for the worst mode, in bad news and worst-case scenario mode, and I can see and feel the consequences of that.
Now, it is time to retrain my brain and like I started out this blog piece saying, my mind is twisted. I keep telling myself positive things and keep catching myself doing frightened, scared, nervous, uncertain things.
I went with my husband to the doctor to get a bump on his back checked out, and I told the doctor, “I’m sorry, I have schizophrenia, I worry about everything.” The doctor said, “That has nothing to do with schizophrenia, I worry about everything, too.” I believe that, and that’s why I’m sharing with you.
I don’t know ninety percent of my friends on social media in real life. I can tell you that I have watched some of their children grow from birth to toddler. I have seen them adopt puppies and cats, and I have frequently read about the loss of a loved one. I don’t know most of the people on my “friend’s list,” but I would recognize them at a writer’s conference (which frequently happens) or in a workshop.
All that is to say, I read what people are posting, and I have been for years, and the level of comfort that most people toss out about anxiety and depression is amazing. It seems like the majority of people I connect with on social media have a diagnosed anxiety disorder or depressive disorder, or they have diagnosed themselves.
In the circles I am a part of it is perfectly natural and well accepted to discuss social anxiety and panic attacks, it is a little less prevalent to discuss depression, but I still see a post about it almost every day. The way people toss out these two disorders has always left me wondering if people are “claiming” them or if they are taking medication for them? If everyone who is posting about social anxiety and panic attacks or depression is being treated for those disorders then the statistics on mental illness are far from accurate – it is a crisis.
I suspect that not everyone who uses the phrase “panic attack” actually means that their heart was racing, they thought they were going to die and thought about going to the emergency room. I also suspect that not everyone who uses the word depression to describe their mood has trouble with daily activities like showering and brushing their teeth. Please, don’t get me wrong, I know that many people suffer and suffer quite silently or we wouldn’t lose famous people to suicide and drug overdoses as often as we do. I simply think that phrases and words like panic attack, depression, social anxiety are incorrectly and way overused.
The point, I want to make though, is can you ever imagine a time when people (lots of them) would casually throw out that they have schizophrenia? No, you can’t. Schizophrenia is like crossing a line. Depression is acceptable, anxiety is acceptable and isn’t that bipolar disorder the one that makes you so creative? I am so tired of reading people’s essays, and books where they say, “At least I don’t have schizophrenia.” Well, an article came out today (link here) that claims that research shows that ADHD, bipolar, schizophrenia, major depressive disorder and anxiety disorders share a lot of similarities genetically.
I’ll be waiting for the day when people are also self-diagnosing themselves with schizophrenia the way I suspect some of them do with anxiety and depression, and that schizophrenia is openly talked about, acceptable, and almost the cool thing to be. If current attitudes are any indication, I will probably be waiting a long time, but still, I will be waiting.
In the city where I live in California, we voted to ban plastic bags. The plastic bags were ending up in the Pacific Ocean, in storm drains, and on the beach, threatening wildlife and causing damage to the environment. I have been concerned about the environment and lessening my footprint on it for over thirty years (my first husband was an environmental scientist) so, I was 100% behind banning the bags.
It turns out that banning plastic bags increased the cases of Hepatitis A in our city. How are the two related? People who live on the streets and in encampments were using the plastic bags as toilets and then disposing of them. When plastic bags were no longer readily available people started eliminating on the street and in places where people walk, sit, sleep and walk their dogs.
Fecal contamination spreads hepatitis, and the best way to prevent it is to wash your hands frequently. People on the streets don’t have access to hand washing stations (they do now). So, the lack of a proper way to dispose of waste combined with no accessible hand washing stations created an epidemic in our city. It wasn’t just the lack of plastic bags that created the health risk, but it contributed to it.
The plastic bag example is a case of unintended consequences and most of our actions, words, etc. even if well-intentioned have unintended consequences. I once warned someone about the lies and manipulation of another person, and the person I warned turned around and told the other person causing me continued problems for over three years. My desire to protect the person I gave the information to turned into an opportunity for her and her husband to hurt me and my relationship with several people. This example might sound like a small example but the stress the situation caused contributed to me being psychotic for over six months.
They happen in our lives every day, all around us. There is no way to foresee them or to avoid them without living a completely sheltered life. As long as you are talking to people, going out in public, etc. there will always be unintended consequences.
This reality, these possibilities, this path that we can go down without ever intending to, these ripples we can cause that can go on for miles, over mountains and for years, can create anxiety in people. I know they can create anxiety in me. Even though I have had bad results with unintended consequences, I choose to keep moving forward, but if I am more cautious, slower to make a move, more guarded don’t be surprised.
Unintended consequences can occasionally make you sick and can cause you hesitate before moving forward in case the landscape in front of you is about to burn.
People with schizophrenia (and those without) frequently have difficulty in social situations. I figured out what the big deal is behind some of the anxiety, discomfort, awkwardness of social situations for so many of us, and what I discovered was that it has to do with risk. We all have to risk something to be around other people and interact with them.
I am in a class right now, and I am required to critique other writer’s work. I critiqued one woman’s essay and completely misunderstood what she wrote. She may have thought that I am dense, or that I am a poor reader, others in the class may have thought that my schizophrenia impacts my cognitive abilities or many other things. The point is, to be in the class, I have to take risks. I have to risk looking stupid. I have to risk misunderstandings of all kinds. There is so much to risk just by taking a class.
Going to parties, or having a job, or going to coffee with a friend, all of these things require risks on different levels. Having a job involves a lot more risk than going to a party, and having coffee with a friend requires less risk than that of attending a party. But all social interactions require us to take risks. The better we are at taking risks, and recovering from flaws, mistakes, failures, etc. probably corresponds with our level of anxiety about being with people.
Before I was on medication, making a mistake or being embarrassed could cause me to spend the whole night awake thinking about what a fool or failure I was, and I would play the incident out in my head over and over again. I would torture myself. Now, that I am on medication, and my inner voice is very subdued, if not almost non-existent, I am not as hard on myself. I wonder if some of this has to do with age and the fact that I am more gentle with myself in general? I’m not sure, but for whatever reason, I recover much quicker from social “mistakes” than I used to.
I think this “recovery” from slip-ups, missteps, accidents, misunderstandings, etc. is what keeps me from slipping into complete social isolation. I am not “horrified” that I am an imperfect person and that those imperfections play out in the social arena every time I enter it. I also don’t consider myself a complete failure or idiot for making a mistake or looking foolish.
This discovery felt very relevant to me this morning after thinking about my class and my interactions with other people.
I had an experience on Monday that left me reeling. I’m not going to explain exactly what happened, but I will say that I felt ignored, pushed aside, and avoided. It was the first time I was meeting this group of people, and they were all aware that I have schizophrenia. I have never felt like having schizophrenia caused people to treat me differently, so this was a new situation for me.
It is clear when someone comments with something like wacko, sicko, psycho, etc. that they have ignorance and possibly intolerance about people with a mental illness. If someone ignores you or avoids you, it isn’t obvious why they are doing that. For example, I can’t say with one hundred percent certainty that people were avoiding me or pushing me aside because they didn’t want to interact, recognize, or give space to the person with schizophrenia.
I spoke to a coach/mentor friend of mine and told her the whole story, and she said she didn’t think it was intentional. I know her advice and her perspectives are good ones and healthy ones, but there is a nagging feeling in me that says, what I felt was real, and true, and valid. (Just to make a note she wasn’t trying to invalidate my feelings, she was trying to be objective).
Now that I am thinking about rejection, there was a time, on a psych ward, that the attendants made me feel less than. It was after I was admitted, late at night and I was in my room. The attendants were obviously going over my paperwork, and one of them said, “Did you see where she works and what she does?” Someone else answered, “Yes, she is a social worker for the State.” The first person replied, “I hope that doesn’t happen to us!”
At my job, during the day, I would have been these women’s equal, their coworker, or even someone with more authority than them, but while I was in bed, on a psych ward, I was someone they didn’t want to be. I was someone they hoped they would never become.
I am going to try to be more aware of people in social settings I find myself in. I am going to look for those people that hang on the fringes, that sit by themselves, that seem awkward, anxious, or scared. And if I know something about someone like that they are battling an illness, or have recently lost someone, or anything that can make other people feel uncomfortable talking to them, I am going to gravitate in their direction.
I know you have heard it a thousand times, I have heard it that many too, but it truly is the little things that make the difference. I am capable of small things, and let’s hope those small things I give, and that we all give, turn into the force that keeps others from feeling lost or alone.
No matter what, we all have the little things to give. Give them with wild abandon.
This blog post is a public service announcement (PSA).
I know that many of us with a mental illness or other disability don’t travel much because we can’t afford it, or because of all the details that go into it, or the fear of being far from our doctors, or a familiar pharmacy, etc. But we do travel, and this time of year more people are traveling than ever.
My husband’s father and his wife came to visit from overseas. They arrived on Friday night. So far we do not know where their luggage is. Thankfully, they put a week’s worth of medication in their carry-on, but they are staying for three months, and the remaining pills are in their checked bags. If you have an illness that requires you to take medications every day and you are traveling, never put your medication in your checked luggage. I always separate my medication into two groups. I put enough to get me through the vacation or trip in both places. I put one group in my purse and the other group in my carry-on. I always take twice as much medication as I need.
We took my in-laws to our pharmacy last night and asked what we needed to do to get them more medication if the airline is unable to locate their luggage. The pharmacist said that they couldn’t accept prescriptions from overseas so we will need to make an appointment and have my in-laws see a doctor here for new prescriptions. Obviously, this takes time, effort, and money. This is not what you want to be doing when you are far from home.
I know we will be able to take care of this situation for my in-laws (thank goodness), but not without stress, worries, etc. Also, it is possible we will need to go to a couple or a few doctors before one will prescribe medication to someone they don’t know. UGH.
Traveling can be a rewarding experience for anyone, but it can be particularly rewarding if you have a mental illness and you find your world is shrinking (my doctor has said this is what is happening to me – doing less, and less, taking fewer and fewer risks and trying fewer and fewer things). I need to take the opportunity to travel to open up my world, but there is a lot of planning that goes into taking a trip for me, and I can easily say that the handling of my medications is the top priority.
One last thing about this, if you live in a disaster zone, please keep an emergency kit by your door with at least a week’s worth of medication in it. I live in earthquake country, and I keep some cash, copies of my ID, and a week or more worth of medication in a bag in the hallway by the door.
Having a chronic illness of any kind takes so much work and care. It isn’t enough to simply get a diagnosis, take your medications, and visit your doctor every six months. There is a lot of work that goes into managing an illness, and I hope we can all be successful at it because our health and possibly our life depends on it.
I have frequently written about caregivers and their role in helping, assisting, loving, organizing treatment, taking care of finances, etc. for those of us with a disability (whether it is schizophrenia, autism, or any number of other disabilities). Caregivers are essential, and I know they need their space, their groups, and their support, and they have every right to tell their stories.
Here is the thing though, and I say this with caution (as not to offend any caregivers): we have our voice, and many of us would prefer that the public learn about our conditions from our perspective and not always the perspective of the caregiver.
Recently on Facebook, a freelance writer who I am in contact with on social media, accepted a job writing about schizophrenia, from an online site (she doesn’t have schizophrenia). I know at least a dozen writers with schizophrenia who are trying desperately to make a living doing something they can do (because there are many jobs they can’t do) and this freelancer is not only taking a job from “us” but is going to be “our voice” as well.
I am a little tired of the story of parents of a child with schizophrenia turning up in the New York Times, or other prominent newspapers or magazines, (anywhere actually) because inevitably it is a story about how “awful” it is to have a child with schizophrenia. We have all read the story of the sad “before” – great athlete, great student, popular, outgoing, to the “after” – withdrawn, unable to read or attend classes, etc. I for one, am tired of that story – extremely tired. There is another story to be told. There are thousands of other stories to be told.
I think there is a place for caregivers, and their stories, but I think the ones who should be given precedence to tell the story of schizophrenia, or autism, or anxiety, or physical disability, are those who live it. Our stories, our voice.
I don’t want to see another Hollywood script about the creepy killer having schizophrenia. I don’t want to see another newscaster or journalist speculate about the possibility of a mass shooter being mentally ill, and I don’t want to read another story by a parent of someone with a disability about how that disability is lived out.
I want those of us with schizophrenia to define schizophrenia – not Hollywood, not the media, not parents or siblings. There are huge misconceptions about schizophrenia held by the majority of the public; I want to be on the front lines dispelling those misconceptions and myths.
I am thankful for every single person who cares and is an ally to anyone who has a mental or physical disability. It is time, though to allow us to speak for ourselves. And won’t that speaking, that writing, that telling be one of the most powerful tools in getting rid of stigma, ignorance, and all the other negative perceptions? Besides, allowing us to do and get a paycheck for the jobs we are capable of doing, it also lets us define our lives and what they look like – something people have been doing for us (incorrectly) throughout history.
I have frequently written about social media – people curating the “perfect life” on Instagram and Facebook, ganging up on people on Twiter, and of course, the mind-numbing time suck it can be. I have also written about my love of social media. Snapchat has added so much humor and connection to my life and is a positive addition to my days.
Of course, I have written that social media can be a savior to those of us who isolate socially, or are homebound, or have social anxiety. But there is something I found out this week that made me realize why I spend so much time reading the posts of others on social media – I find people with similar experiences to me.
I have written a little about the fact that while I am going through my breast cancer scare (that has lasted almost a year now) that I have found comfort, information, and support by reading about women in all different phases of breast cancer. Some of those women recently diagnosed, some in the midst of radiation or chemo, some survivors for over ten years. I have read story after story and followed some people’s journey all the way from diagnosis to their final treatment. I have learned about all the emotions that go into a cancer diagnosis, a mastectomy, hair loss, the thoughts of mortality, the fear, the sadness, the brain fog, etc. And on the other side, I have seen comments by hundreds of women, who like me, have had long drawn out tests that ended up being negative. I feel educated about this topic by a group of women across the globe. I can’t say how much this has comforted and kept me sane during this process (my next test is on Dec. 13th.)
It hasn’t only been breast cancer, though. Earlier in the week, I read a post from a woman asking for suggestions on how to get through her anxiety. She wrote that she couldn’t tell the difference between excitement and fear/anxiety and her upcoming trip to Spain was causing her problems. What? I thought I was the only person on the planet that hated to be excited because I can’t distinguish that feeling from negative feelings. Excitement makes me nervous, anxious, shaky, uncomfortable and scared.
There are also the people I have met on social media who have schizophrenia. I can read what they post every day, and the things that they like and are concerned about and what they are doing with their time. Knowing other people with schizophrenia, and getting to experience bits and pieces of their lives, helps me feel less alone and not so different in the world. The people I have met on social media with schizophrenia are like me – they read, they socialize, they grocery shop, they have pets, and they do average and “normal” things. See, I’m not an exception, or an anomaly, I am like so many other people who experience symptoms every day but go about living a full life.
For all my complaints about social media, I think the benefits; I gain from it far out weight any criticism I have of it. If something can educate, comfort, support, and help you feel a sense of belonging and community, that is not a bad thing. And it is all at my fingertips twenty-four hours a day – you can’t beat that, doctors and therapists don’t keep those hours, and I get every bit as much from social media without the office hours or co-pays.
It’s the holiday season. An exciting and enriching season for some, and for others, the most difficult time of the year.
For those of us with a mental illness, it can be hard for various reasons. Being alone, or being away from friends and family is only one possible problem. There are those of us with anxiety issues that can become worse during the hustle and bustle of holiday parties, shopping, crowds, etc. There are those who suffer from depression that can deepen this time of year. There are those of us (and we are many) who isolate, and that means that invitations to parties, gatherings, happy hours, and volunteer opportunities, etc. can create stress.
I happen to love the holidays, but things at my house look very different than anyone else I know. My husband and I used to travel to relative’s houses and go to big family parties that included cousins, aunts, uncles, nieces, nephews, grandparents, and the occasional friend. Now, we decline invitations to those family functions.
A day or two before Christmas we check into a hotel, and the only traditions we recognize are the sharing of Christmas stockings (I fill my husband’s Christmas stocking, and he fills mine). On Christmas day, we take a picture of ourselves by the ocean and post it to social media (if you follow me on social media you know this is highly unusual for me because I never take selfies and I am not one to post too many updates on what we are doing).
Not sharing the holidays with family has created a few hard feelings over the years, but my husband and I have become more comfortable with saying no to people and taking care of ourselves as the years have passed. I guess you could say we are more selfish now than we were the first ten years of our marriage, but selfish seems too harsh a word for something you do to avoid stress, negativity, anxiety, drama, etc.
I like the no expectations of our holidays. I don’t have to cook, or shop, or bring presents, or be involved in anyone’s drama. We celebrate a drama-free Christmas Southern California style, and I love it.
My advice to anyone who has difficulties with the holidays is to make choices that make you happy even if those choices don’t make everyone else happy. I am all for spending time with family and friends and sharing my life, time, etc. with other people, but I will no longer do that at the expense of my mental health and my husband won’t either.
So, I am sure that some people think we are Scrooge number one and Scrooge number two, but they can think that while we walk on the beach Christmas day sipping coffee, holding hands, and wearing sunglasses to keep things from being too bright.