Depression

Depression is a insidious disorder. Often you don’t know how bad it really is until something triggers such a reaction that you say “oh dear heavens, I want to die”. Depression and thoughts of death go hand in hand. Not always, but chances are if you’re thinking of your own death, you’ve been suffering from depression. That’s my experience anyway.

Insidious because often it’s just a cascade of things dragging you down until the feeling of drowning is overwhelming. Maybe it is your job, money, family, friends, school, health or something else that drops you down into the Blue Meanies. I’ve always called my depression the Blue Meanies, probably because of my love for Yellow Submarine by the Beatles. In the movie, the Blue Meanies are trying to destroy all music and color in their world, turning it grey, dull and hopeless. I have that feeling quite a lot, ergo the Blue Meanies have invaded my spirit. I often don’t see them coming until they have a pretty strong hold over my spirit and I’ve become quiet, less animated, more prone to dark thoughts. (see https://www.musicmusingsandsuch.com/musicmusingsandsuch/2018/7/17/feature-blue-meanies-and-the-liberation-of-pepperland-celebrating-fifty-years-of-yellow-submarine)

Dark thoughts can take many forms. These are some of mine.
* Feelings of unworthiness
* The world would be better without me
* My health means I can’t work, so what do I contribute to the world?
* Who would notice if I just wasn’t here?
* I’m a burden to all around me, financially, emotionally and sometimes physically.

I write these down so people can see MY thoughts. While I think of death regularly as a friend I would welcome in, I do not have suicidal thoughts. If you do, please call 988 in the US for help. Trained crisis workers will help figure out how best to help you. Suicidal thoughts are not bad, not abnormal. They’re honest feelings that have to be allowed space to live. All feelings deserve to exist, but for some reason, feelings of death, self harm and hurting oneself is considered taboo to talk about. I’m not the person to talk about any of those, as I’ve never felt any of them in a way to truly talk about it well. But I can remind people that any and all feelings are valid.

Some of my depression is caused from my genetic disorder. Knowing you live with something that makes every day a challenge is hard. Many days I force myself to shower, because it’s the only thing I can do that day. I don’t cook anymore, I bake very rarely, but I do clean up after meals. Headaches that are so bad that focusing on anything is close to impossible, but what do you do all day if you can’t read, crochet, type etc? You choose sleep, but I can’t spend my entire life in my bedroom. Believe me, I’ve tried. So I get up, take that shower, eat, read a book on my iPad (easier to hold and I can make the font bigger), crochet, watch TV (I try not to do this until late in the day) and talk endlessly to doctors and their staff about symptoms or next steps.

Add in being a highly sensitive person, for whom the slightest raised voice or unkind word is like a wound, and you have a person who doesn’t feel like they fit in anywhere. And when someone feels like that, then depression is close by and the Blue Meanies are smothering the world to you. Fitting in isn’t exactly easy all the time. I struggle with where my place is, who AM I without being able to work. I have no children and no partner to be responsible for. Sometimes I feel “less” because I don’t have those typical things being very close to 50. And I’ll never have children, which I don’t necessarily regret, but I also wonder what I’ve missed because of it. How much did my depression play into my choices not to get married or have children? Quite a lot. I never felt that I was “good enough” for the men in my life. Or I thought that I was enough, but they weren’t. Being a HSP, I’m very good at reading people’s facial expressions, body language, etc. Which means I sometimes can feel what someone wants from me without them telling me. And that sometimes means that I’ll change myself to fit what that person wants or I think they want. It’s a conundrum, and it’s part of who I am, to try to fit what I think people want from me. And it’s a hard thing to recognize that is one of my personality traits, as I refuse to call it a flaw. It’s who I am, and I have to recognize it. I was watching Ted Lasso for the 3rd time and I thought of how Ted and Rebecca use a codeword of “Oklahoma” to say if something is true or not. To talk about their honest feelings, which is hard to do. Fo many people, I wear that mask of “it’s all ok” and very few people see the Oklahoma version, the true feelings and emotions I have. For most people, I wear a heavy mask, as if to say “I’m ok, really I am” when the truth is hard to admit because how many people actually want to hear that your day, week, month or year has been shitty and death could be preferable? VERY few people want to hear that. I don’t know how many people truly want to hear it. Even if they say it, very few actually want to know it. Because in my experience, telling the truth on how you feel only sounds like complaining and I don’t want to be someone who only complains. I would rather people think of me as someone who fights through things and rarely complains, but also rarely goes out because of pain. But that’s part of me. And I’d rather be quiet and respected for being “strong” than have people say that I only complain.

This is essentially what depression means to me. It’s hard, lonely and quiet. But as long as I talk to the Blue Meanies and welcome them and don’t pretend they aren’t there, then I can accept them and live with them and work on how to work through them. I accept them and will always have these feelings, as long as I live. I just need to know they’re there and try not to let them take over. As long as I don’t let them take over, then I can live on.

However, I know several people who chose not to get vaccinated on a religious basis (and this was also confirmed by our Coyote in Zebra Clothing that heard it from several people in their area). They say that G*d will save them. My theory is that G*d taught humans to be smart enough to follow the damn SCIENCE! There’s even a past article about leaning on how leaning too much on faith has been harmful! As humanity has spent so much time learning how to save ourselves, why do some have to choose to help themselves live? Or at least not get sick?

We don’t question our use of seat belts anymore (the law was instituted when I was a kid, and now I feel horrible not wearing one 50 feet up the road). We don’t fight not smoking in a building. Stop signs and lights are laws of the road. These are public safety laws. Ones that have existed for quite a while and probably 99% of the people around follow these laws! Yes, there are always law-breakers, but for the laws above, it is rare here in the USA. But the choice not to get a vaccine or refusing to wear a mask is not helping public safety. In fact, you may be killing others. And these laws aren’t just to help protect your neighbor, they’re for those responders that are responsible for your care. The seatbelts so first responders didn’t have to have as many mangled bodies to scrape off the road, and the covid mandates were SUPPOSED to also be for our doctors and nurses to not be overwhelmed while put at constant risk. The lack of care for them in favor of this blatant selfishness is horrifying.

Vaccines are safe. While statements of vaccine injury are popping up in social media posts, the documented number of TRUE VACCINE INJURIES are one for ever million vaccines. One. And that come from a legal team that represents injured patients. 99.99% of the people alive in the USA have had a vaccine for Measles, Mumps, Rubella, Chicken Pox (or lived with it as I did in the 1980’s), typhoid, polio, and more. Smallpox was eradicated in nature thanks to vaccines. The COVID vaccines are new, but the disease is also new. Some are made using a newer technology – mRNA, others using existing technology. But let’s also take a moment to remember that the mRNA isn’t completely new, as this article from 2018 illustrates. The reasons we get a vaccine is not only for ourselves (protecting us from severe illness, death etc) but also to contribute to herd immunity in our world. Herd immunity saves lives. Most young children don’t have all of their shots, and depend upon others to have shots.

Herd immunity occurs when a large portion of a community (the herd) becomes immune to a disease, making the spread of disease from person to person unlikely. As a result, the whole community becomes protected — not just those who are immune. Often, a percentage of the population must be capable of getting a disease in order for it to spread. This is called a threshold proportion. If the proportion of the population that is immune to the disease is greater than this threshold, the spread of the disease will decline. This is known as the herd immunity threshold. What percentage of a community needs to be immune in order to achieve herd immunity? It varies from disease to disease. The more contagious a disease is, the greater the proportion of the population that needs to be immune to the disease to stop its spread. For example, the measles is a highly contagious illness. It’s estimated that 94% of the population must be immune to interrupt the chain of transmission.

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/herd-immunity-and-coronavirus/art-20486808

More information about just the vaccines can be found here https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html and here https://vaccines.procon.org/

As someone who has multiple health conditions, I am immune-challenged. For folks like many of us here, with mast cell issues, The Mast Cell Society has been giving constant updates for us about the safety. But I have friends who have little to no immune systems due to cancer, genetics and more. Some of these people are medically unable to get the vaccine under direct orders from their medical team. Those are the people I get my vaccines for. Yes, I get it for myself, but I also get it so that the people around me can be safer. I also choose to wear a mask around people inside a shop or anywhere I don’t know people. I do these things so that I can live a life that is full and happy – but I also do not want to be stupid. I am careful. I also don’t want to be the one who causes someone else’s death. And honestly, without the vaccine, you could be causing someone’s death or serious damage. Can you be okay with that? Truly okay with knowing that throwing your tantrum over individuality and sometimes utter nonsense science about “breathing only CO2” wearing a mask…could directly be how someone dies from contracting this disease?

I am just apoplectic at the lack of care for other people’s lives. How can you say that your religious beliefs in G*d will save you? Look at the bloody statistics!!! Look at the fact that more than half the ICU beds in the entire US are full with COVID cases. And those cases are from unvaccinated people! The CDC posts an update on data every day – I have posted it as the second link.

https://www.wired.com/story/the-dam-is-breaking-on-vaccine-mandates/?utm_source=pocket-newtab

https://covid.cdc.gov/covid-data-tracker/#county-view

Please think about the others around you. Important surgeries, such as ones for cancer, orthopedics, so called “elective” surgeries are being postponed all around the world. For someone with cancer, this means their treatment may be delayed months or years. And how scary is that? Because beds are not available because people are in the ICU with COVID!

I am not a religious person. I choose not to write G*d as I personally do not have a relationship with religion. I believe in something more like Buddhism where kindness is what people are to follow. I try to be kind in all things – this is the first time I truly can not be kind to people who refuse to vaccinate. I won’t interact with them, I won’t be around them, and I will still continue to mask around people I do not know.

Friendships, in general, can be ephemeral. They can wax and wane and sometimes disappear with age, changing locations, and just life in general. I am very lucky to have two friends who happen to be sisters that I have known since we were 5 (well, the younger was 4). They are more like my sisters, and we share our joy, pain and laughter often. Many other friendships came in high school, a few in college (I didn’t have a good experience in college, which I will go into in a future post) and more from jobs later in life. While it’s normal to gain and lose over the years, I have lost more friendships than I would like to admit in my 7 years of chronic illness. It’s a strain on the dynamics of a relationship of any sort when you can’t go out or visit as often as they’d like. Constantly hearing that the friend you want to spend time with declines time after time, I’m sure it can make them feel unwanted or under appreciated.

I’ve made the decision to accept that it isn’t my fault that people move away from my friendship. These have not been easy things to accept. I miss the shared history, the fun times we have had. It isn’t easy to accept the loss of friends, but after I’ve reached out multiple times and don’t hear back, then I have to accept that they’ve moved on. I’ve cried over these friendships leaving me, but I also know that I didn’t do anything wrong. I do try to talk to my family and friends when frustration strikes to discuss and find a resolution. I ask people to tell me if I do something they don’t like at the time so that we can work through it. Please remember that these are MY experiences and feelings, and can be very different than someone else’s. The friends I have retained still ask me to do things, even if they know I may cancel. They are okay spending time on the couch just being in the same room. I may still say no, but it is the ACT OF BEING ASKED that makes such a difference to me, and my friends. Just the simple action of letting us know that we are still accepted and welcomed in their space. That we are wanted. It’s such a basic thing yet something most often forgotten, because they assume we will say no and that no means we don’t want to be included anymore.

Being asked means you feel included, even when you physically can not do it. To me, that is what is important. And when I do attend something, I need to build in recovery time. Normally for ME that is a day, but I know people that for every hour of being social, they need a day to recover. So if they go to a 4 hour event, it can take 4 days to recover.

It is the rare occasion that people see my pain and challenges for themselves. I have other friends who use aids sometimes, and others who are full-time wheelchair users or other types of aids. These aids, no matter if we use them occasionally or every day, are our lifeline to the outside world… but it’s complicated. This is why zoom was so important. The pandemic has done some good things in this world; allowing people to talk via Zoom, FaceTime and other apps has offered a world of accessibility that people like me would otherwise not have the energy to accomplish. This is something that needs to continue long after Covid passes into our memories, because it’s been a game changer for many people.

Remember that at the end of the day, friends can be support, become your family or also leave our lives. All of these things are acceptable, it is just how life can change all of us. And our lives may be a struggle, but unless someone tell us, we may be missing what the friend is experiencing. No one can walk in our shoes, nor can we walk in others. Kindness is the important thing in all aspects of my life, and I try to help others by being kind about what I may be missing.

Derek Redmond hurts himself, and he refuses to quit, even though his face clearly shows his agony. His father RUNS to him and helps him, sometimes forcefully shooing the officials away.

Life for a Zebra can be like these runners. We come out of the starting gate with our peers, and at some time in our lives, the injury slows us and eventually, our peers are so far in front of us that we are straining to even see their dust. We lose friendships. We lose jobs. We lose our livelihoods. Some lose almost everything.

For me, my mom is like Derek Redmond’s father. She holds my arm and supports me while I hobble along attempting to run the race of life. She comforts me when I cry, shoos people away who may doubt my pain and issues, and generally helps me keep going. I want to finish this race of life in my way – helping others and staying as strong mentally as I can.

Mental strength is HARD. Imagine that you spend every single day fighting insurance companies for approval for every thing you need, talking to multiple doctors about the many issues that plague you, trying medication after medication to manage conditions, trying to explain to anyone that yes, you agreed to dinner but the day was hard and now you need sleep. All of these things are draining. Most people find just one of these things hard, so multiple things in a day, and every day, feels like that Olympic runner.

Zebra (or any chronic condition) life is HARD. It means you may not be able to work, but you work every minute of the day to function. Sometimes just getting out of bed for an hour is work. Sometimes the victories in our lives are so minuscule to other people, and so gigantic to us. Those victories range from making more than one meal a day (cooking is hard due to standing and repetitive motions with the joints) to walking a block to getting a much needed medical test done. To some people, these victories are meaningless. To me, and many of my Zebra friends, they are huge. Some days, one of these things is enough. Some days you get multiple things done, but pay for it the next day. Those are days I just say to myself “I am strong enough to weather even these bad days”. I know that my words can seem trite to others, but it works for ME. But what works for me, may truly hurt others. That is the nature of a Zebra life – we are all covered in different stripes, and we all struggle in different ways. I think everyone has a different journey to go on, and what works for me, may not work for anyone else. This just happens to be MY way.

This is a quote from the Derek Redmond interview. Derek’s father came down from the stands and ran alongside Derek. As Redmond later recalled:

The old man put his arms around me and said, ‘Look, you don’t need to do this. You can stop now, you haven’t got nothing to prove.’ And I said, ‘Oh, I have — now get me back into Lane 5. I want to finish.’

Derek Redmond, 1992

I want to finish the race, and I have to prove to myself that being a rare disease person isn’t the only part of me. I am also a friend, an aunt, a daughter, a fighter, and a chocoholic.
Thank you all for reading my first note.
ZebraSarah