It’s weird that I’m typing this Title. Kevin Smith as inspiration? Sure he makes funny films. He doesn’t even make the type of films that I am USUALLY interested in (however my husband will try to prove how hilarious he is and make me watch all of his films). I will say that I probably enjoy Kevin Smith’s interviews more than his films. Either way, I wouldn’t normally call him an inspiration but someone who makes me giggle occasionally – but he is inspiration for me today and perfect timing for me (as selfish as that sounds).
I haven’t written this all down, but as a person who comes across like I’ve not got too many cares in the world, and yet was faced with death at the age of 6, with open heart surgery, I find Kevin Smith’s calmness while facing death as a grown man quite comforting.
Not only that, but as I mention that I have had to deal with the fact that I have another risky surgery coming up (which I should have the date of by tomorrow). I’ve been thinking a lot about death lately and I know… how is death at all inspiring? Well… so many reasons.
I have been asked in the past (with multiple life or death situations/surgeries) if I was worried about my health. I would shrug my shoulders and say “well, I could be perfectly healthy and get hit by a bus tomorrow and so why should someone like me who has health issues worry about tomorrow?” It’s true though. Lately someone who is “related to a friend of someone I know” went to go help someone who they thought was drowning last Thursday – he hasn’t returned. He isn’t expected to be found. He was 20, and healthy.
My heart aches for this situation but at the same time… Should I worry? Kevin Smith’s comments about not being scared, and facing fears was inspiring. If you haven’t read them you should. I say this because Kevin Smith is successful, he gets to do what he wants to do for a living (which frustrates me because with my health I have been torn away from so many of my goals), and yet, death has no preference. We all have to face it some day. We all have to face death whether you reached your goals or not. So why not use this understanding to make each moment count?
It sounds cliche I know! But you never know when. The best (and healthiest) people who can be healthy as the best can have heart attacks and strokes at a young age, not including crazy life circumstances that can cut things short).
If you understand this, life becomes more free, and it includes less worry about judgment. We all end up in the grave, just at different times – we might as throw that worry away so we can dance and laugh our way to the end.
So my organization today had to do with myself. I have been neglecting taking care of myself on the outside. So today I got some fancy conditioner and really soaked my hair, Scrubbed myself with fancy organic soap, and oiled my skin.
I feel an improvement. I was actually dreading it. I don’t have much energy left and it felt stupid to spend what little energy I have on some sort of beauty regiment. However, my skin feels sparkling and I feel a bit more optimistic about life.
I have some soy candles I am going to light tonight as it is pouring rain (and a few places around us are flooded).
I bought some of my favorite wine, and as my husband (who isn’t a fan of sushi) is away, I’ve bought some Sushi so I don’t need to worry about dinner.
You don’t have to go to great lengths to spoil yourself. At the moment, I don’t have the money to go to a Spa or get my hair done – but for a few extra dollars you can make yourself feel a little extra comfortable for a day.
So this is what I organized for myself today!
Hope you all take care of yourself this weekend!
(I’m now going to put some fresh sheets on the bed)
So I got caught up in some deep conversations today. Which was strange as I was feeling particularly unsocial (which isn’t like me). A beautiful person in my life who loves when I am just plain honest asked me over and I warned her I didn’t want to talk. She got out a puzzle for me to concentrate on in case I still decided not to talk. After a rant for a good 30 minutes to her about how I felt angry that I had no control over my life I was finally able to settle. I was completely aware that this is not for everyone – That this could have been an overwhelming situation for most. She laughed though… she says “I love it when you get angry because you get the ‘southern accent’ out”.
This is funny because I spent a whole 18 months of my life (as I was born there) in the south – Louisiana. So I have no clue where this southern accent comes from but when I’m angry, it comes out. She laughed (as this beautiful soul is from Texas) and said “you are making me feel like home” (In case you have missed it, I live in Australia – and she does too, two women ‘originally’ from the south in another country).
Anyway we got to have a heart to heart about some really painful things that we had never discussed and was able to deal with some Trauma we both experienced.
When I left, I ran into someone else who had discussed the physical affect of Trauma. How they had been having Panic attacks and had been getting them treated. Apparently there is something in your brain that can associate non-trauma events with traumatic feelings and cause panic attacks.
I discussed how, although not having experienced panic attacks that often – that I found out that when I sought help for my pain after being dragged by a car… that my whole body seemed like a brick. I could barely move months afterward. When I talked to the Physio he had said that if you have experienced physical pain before, that muscle has memory – and even though I hadn’t injured those particular muscles, ALL your muscles can lock up in a defensive position in reaction to one part of the body having trauma.
This fascinated me because I thought if this is true with muscles – how much more could it apply to the brain?
Someone once said that you have a “replay tape” of all the negative things that you have heard or experienced in your head. When you go through emotional trauma that it can be a natural thing to go to this “replay tape” of negative experiences and words.
I know my natural replay saying to myself is that I am a burden. This has been in my head for years, and as soon as I have a negative encounter, I can brush it off – initially – but these words come in my head “Jenny you are a burden”, and I replay reasons why that is true. Is this my brain’s way of handling emotional trauma?
There are methods to letting this “replay tape” change. Psychologists can help, there are videos on the web of tapping or changing your thought. Anything is possible – which I think is demonstrated in the book The Brain that changes itself by Norman Doidge. I highly recommend this book as it gives you the understanding that anything is possible with the brain and changing your thinking and your body.
It’s time to change that tape on replay. Force it to say affirmations (that takes work) over the usual sayings (that it is used to). The weekend is so close I can feel it.
So I haven’t disappeared. I’ve been doing some thinking about how I want to conduct this blog/website and where I want to go with it.
SO far I have come up with a bit more organization and themes for each day:
Monday: Inspiration Monday – Something to inspire you through out the week.
Tuesday: Health related Tuesday – Update on my health journey and recovering from surgeries – I originally wanted to avoid this subject when starting a blog but I realize that for me to be authentic – it’s going to come up – and sometimes a lot – so I might as well reserve a day for it and discuss the reality of my life in this particular blog.
Wednesday: Awesome finds Wednesday – There are some awesome technological finds that I just want and love that I can’t help but talk about. Finding that “next best thing” is in my blood. Having said that… have you seen these Toilet lights (Sorry – bathroom/restroom lights for those that aren’t as crass as us Australians). Aren’t they a must? I want!! (I can’t help myself – it’s in my genes).
Thursday: Spiritual/deep thought Thursday
Friday: Cleaning and organization inspiration
Let me know what you think… but I understand that I just can’t type about anything that pops into my mind on any given day… Also… I’m a day ahead from most of my readers (From the other side of the globe).
Hope your Week is wrapping up nicely!
I promised to write this sooner but as you can understand, I haven’t been feeling the best so it has taken me longer than I had anticipated to write.
So, as people like to joke… that I’ve lived with a high percentage of weird things happening to me. I’m still here and I take comfort in that and it’s something I take comfort in with the surgery coming up. BUT I have been promising the story of when I was dragged by car – which happened July 25th, 2017.
My husband was unemployed for this time, and happily volunteering for other projects. The company he had been working for had gone under and he had received a small payout but we were getting at the tail end of that payout. In this case, he had been volunteering to help build a person’s house with a few friends.
We only have one car (especially with financial difficulties) so this meant that I had to drop him off and pick him up from the building site – with two of my children in tow. The house was on a hill, so I parked on the hill. I got out of the car and opened up the child locked door for my son, and was about to do the same for my daughter on the other side when the car started rolling backward. My first thought was that I did not put it in park properly. The second was that my daughter was in this car and due to child lock she can’t get out and I would have to stop the car somehow. Unfortunately at this time all the workers working on building this house had been packing up and had started witnessing this traumatic event. Some of them running towards the car, I could hear some of them yelling or screaming. They sounded helpless. At this point. I “superman” jumped back into the car to try to stop it – because I thought…. it was my fault but mainly because I had to save my daughter.
The sad thing is… I kept pushing it in park (while having my legs dragged (approx 130 feet) while going down a hill and pulling on the hand break (which of course would do nothing but it was loud enough to alert the neighbors who all came out wondering what that clunking sound was and they watched in horror too).
At this point I didn’t know where my son was, I thought he had already been rolled over by the car – and my next thought was to save my daughter – but it hit me that I couldn’t. The car (I thought) was heading for a forest area and the bottom of the street. Either that or we were heading for a house or a random tree. I had the desperate thought that if my daughter actually survived this (I had flashes of her being in the hospital) that she would need her mother… and yet… I was halfway out of a car – if I let go – I would be under it in an instant – rolled over by a car and fighting for my life. I knew that all that was needed was for the car to roll by a building and I would be in two pieces… It’s amazing how many thoughts go through your head in that small amount of time.
I knew I had to find my way out of the car without being rolled over and in that instant the car hit a ditch and I flew AWAY from the car – which was life saving. I had no clue at the time that the car had not been rolling down the hill but it had turned and thankfully did not slam into a house but went UP a grassy yard and stopped right between the only yard that was safe on the street – between a house and a tree.
I heard my husband yell “ROLL!!” at first I was thinking “I think I’ve killed myself and my husband is yelling at me”, but he was concerned that the car was going to roll back down the grassy hill and back on top of me. I finally realized he wasn’t yelling AT me but yelling to save my life as he couldn’t get there in time… I rolled – as straight as possible because I thought I had risked spinal damage, possibly internal bleeding and the like – I already had my hands above my head and I did the most perfect roll I could (under the circumstances) out of the way.
Thankfully – that’s when the brakes kicked in.
Days later my husband believes that maybe I had it in park but did not hit the pin – I am not sure if this is true – but I have been told that it is a single little pin that needs to be pushed properly for brakes to set. BUT when we took it into the mechanics, they mentioned that the brakes had been shot – really bad (they said they would not drive it down the street). So, it may have been my fault? It may have been the car? We have no real answers – although the police definitely had to show up and do a breath test on me – which they suspected that I was a likely suspect – they seemed surprised that the alcohol was 0. I was annoyed and slightly insulted by being treated like a criminal instead of a victim but I realized they were doing their job. My kids ended up being fine. Shaken, but fine. My daughter called it her “brave moment” and writes it in her school journals. My son surprised me… I remember at the beginning when the car started going backwards he tried to help and then he disappeared which is why I thought he was “gone for good” and that the car must have taken him out, but it turns out he’s a lot smarter than I ever anticipated. He, at barely 7 at the time said to me “Mum, I tried to help you, but I realized I couldn’t so I ran as far away from the car as I could and crouched down low. In fact many of the adults could not spot him when this was happening and had assumed he had been hurt too. He was the first person to get to me and I remember feeling a wave of relief seeing his face – knowing he was alive.
I looked down. My body a bloody mess. I knew at the time I had an enlarged spleen and I was told that as long as I don’t “hit it” I’ll be fine. So naturally when I looked down and saw gravel in my stomach, I was a tad concerned and it was the first thing I told paramedics.
The hilarious part was that I thought I had gone crazy when the paramedics had shown up. One man, who was talking to me from the right side of me would ask me a question, and then disappear, and then the SAME EXACT guy – would come and talk to me on my left – almost instantly. I thought “How is it that I am seeing the same guy on either side?” I didn’t want to worry anyone so I thought I would mention the concern I had with my head (even though I didn’t remember hitting it), in the ambulance once my friends and family were not around. It wasn’t until the police showed up to do a breath test (while I was in the ambulance before we drove off) that I heard the policewoman ask them “So are you twins or just look alike?”. Turns out they are twins – (phew… I’m not going crazy), and they told me on the ride to the hospital that they share everything except for girlfriends (Hmm… I didn’t think to ask the girlfriend question but they decided to make that clear). They have the same hobbies, friends, and job (of course) and work together – BUT they don’t share girlfriends (thanks for clarifying boys). BTW they were really good-looking and I found out one of them was single but I was thinking of how inappropriate it was for me to try to set up a date with one of my single girlfriends while I’m in the ambulance bleeding all over them. It was just not a subject I could think of bringing up naturally… (sorry single girlfriends).
Anyway, I got to the hospital where they treated me like a princess because I got to be in the ward with all the drug addicts. I don’t judge – that in itself is a huge challenge but I think I was an anomaly in that department. When my husband showed up a man who was trying to go through detox came and told my husband he should believe in aliens – in which my husband casually replied “That’s why I try to wear the aluminum foil hat”. Well… I overheard my husband say that before he found my room but it made me giggle. I thought he would be a little weirded out with being approached like that but after 13 years of marriage sometimes your husband can still surprise you with how well he can handle strange situations.
They did a scan in which they have found this aneurysm that I have to take care of – and in a way I think that maybe this whole dragged by a car thing has worked out well. If I hadn’t been dragged – no one would have found this ticking time bomb in my body.
I was put into theatre and given Ketamine. Which apparently is all the rage at the moment. I was encouragingly told by the (obviously newish doctor) that “oh yeah, it’s the drug that Michael Jackson died from, but only because his doctor gave him too much, don’t worry though, I wont do that to you” in which the obviously older and more experienced nurse shot him a dirty look and said “you’re not helping”. Uhh.. doctors – sometimes that bedside manner comes a little later – and sometimes not at all.
Thankfully with many scans they determined I only had a bad case of gravel rash. So all they did was “scrub me” under Ketamine.
The Ketamine was great (In case you are wondering) I dreamed that I was playing minecraft the whole time. So that was interesting…
Anyway – my wounds healed up crazy fast (I will spare putting those really yucky pictures on the internet). All the doctors exclaimed how they have never seen anyone heal faster and they were in shock. Except for one tiny area in my knee which kept getting infected. Luckily, I know a nurse in “High places”, as in she gets all the infected wounds and saves people from losing legs and such – as she is one of the school mums and she made me show her. Sure enough after two weeks she had it back to normal – she is amazing and she is nick named the “Healer” but it didn’t heal right with a bump… it kept opening and closing – so she looked at that and said “You need that scanned.
I went and had a scan – I could see a lump while the ultrasound technician was going over it… and over it, and over it (I can’t have an MRI – because I have a pacemaker – I know this really is too much to keep up).
They finally announced that I had a piece of gravel in my knee “but it should come out on it’s own or eventually will heal over”, but – 9 months later – this is the “Day surgery” I had to have. I love my GP – she should have been able to get the rock out, but she refused due to all my crazy health stuff – so I actually had to get checked into the hospital on Wednesday to get rid of it, because on the off chance that I might survive this upcoming surgery – I wont have the immune system to fight off a potential infection of the knee. So it had to be done. Next Blog will be the “knee surgery” (aka gravel removal) – as I realize I went WAY over my word limit today. Ha ha.
Hope you have a good weekend. Check your brakes!
So, I have been laying low lately as I feel like I have gone through some depression lately feeling overwhelmed with the reality that lays before me. I am ready to explain and it’s super personal but maybe someone out there can relate in some weird way.
So, There is still the incident in which this was all discovered in which I have yet to write a blog post about but 9 months ago I was in a an accident which caused me to be dragged a good 40 metres (roughly 130 feet).
As a result they scanned my internal organs. I already knew that I had an enlarged spleen. Which is why I alerted them to doing a scan. The other was a bit of a shock. It seems that my portal vein was blocked when I was younger when I had a different procedure. The clot stayed there long enough to form what is called an “Occlusion”. Basically – it’s never going to change, it’s become a part of my body – and the body miraculously compensates by forming smaller vessels to get around the clot and get to the organs they need to get to. These vessels are called Varices. However the real kicker is a pretty large aneuryism (and two smaller ones) that they found on my splenic Artery. So… yes.
After much discussion on what to do (and I still don’t know everything), the rough overview is that I have to do 2 procedures (usually they do just the one) where they will “Partially embolize” something somewhere to lesson the blood flow through the varices. The doctor who would be doing the embolizing (I have been told he is “world renowned”) says that he cannot fully embolize – and that they will have to remove the spleen. I do not know fully what this means – but I do know they are worried about rupture of 3 (3!!) things and that I am a “ticking time bomb” as put frankly by my surgeon. However they want to meet with me again and explain EVERYTHING but also to explain to me how high risk this really is (joy – I get it, I could die – and it’s a good chance I might), but the alternative is that my life will probably end when something ruptures because I’d be lucky to get to the hospital in time, with doctors that are familiar with my history, and/or have the right skills needed to do such a specific job. So I really have no choice.
The spleen is getting bigger, and the aneurysm will only get bigger – until one day there will be rupture.
The funny thing is, when scans were first done, I casually mentioned that I might need to have surgery on my spleen (without even meeting with a surgeon yet) and the two people I told didn’t ask me WHY… just told me how I could fix my spleen with herbs.
Yes… with herbs.
I love alternative medicine, but please do not offer it until you know the details – and even then… if you offer it to me, I will just give you the number of my doctor and say “why don’t you consult with my doctor on what to do with me?”
Also, when do people offer solutions without listening?? oh that’s right… ALL. THE. TIME. So this is what keeps me from telling a lot of people that I know… the offering of herbs instead of actually listening.
So… I keep thinking I should prepare for “recovery” but I realize that I need to prepare for “never coming back” too. Which really sucks. Not sure how you can explain that to your children?
I don’t plan on explaining it to them too much until I have a date of surgery which I should know by next week. Also, I don’t want to worry them too far in advance.. ugh. Such a balance.
If I do get out of here though – I plan on getting me a I HEART GUTS spleen.
More about my dragging from a car and the minor surgery I had today in tomorrow’s blog.
Take care and remember to laugh!
So my son has sensory issues and for a long time I was thinking how much he would love a Koosh Ball. I looked everywhere for them, and assumed they just weren’t made anymore. I assumed they were one of those “vintage toys” that had to make a comeback someday – like everything else.
I remember them quite vividly as a preteen/teen in America and it was just naturally part of our existence. I remember everyone having one and we would play, throw, and just enjoy the sensory experience of touching it. So I guess this was the sort of thing I first thought of before the fidget spinner (however the new LED ones look amazing) became so popular!
In this regard I assumed all my Australian family and friends knew what it was too and that it was just accepted that these were no longer made – until a certain Jimmy Kimmel and Justin Timberlake skit. I giggled and showed my husband who turned to me and said “What’s Koosh?”. WHAT???? “WHAT??? So I was like “you know, Koosh balls“. “He just shook his head and “nope”. So I had to google it – sure enough this lovely little gem is still very much alive and selling in the United States – so why the heck is it not down here in AUSTRALIA?? I found it on an Australian online “therapy” store (which happen to be “out of stock”) but I thought how can this not just be in every single store in Australia? We need it! Don’t even get me started on the fact that Australia does not carry Candy Land (which I desperately looked for when my children were 3 and 4 – tried ordering it online and again “out of stock”).
Please, American companies, please branch out and sell some of your product here, or someone with a decent warehouse in Australia need to think about becoming distributors! I would do it if I had a warehouse! There are quite a few other things I wish would make it down here to Australia if I had my way (and if anyone reads this blog besides my mother).
The I HEART GUTS is also a company I am desperately sold on (being a regular hospital visitor). Anyway… If anyone has a good business sense and would not screw up the bringing of a few of these products to Australia – PLEASE do so, or I would even be happy for someone to mentor me to do it myself!
Koosh Balls and I heart Guts, this is just a sample of wonderful products that I believe Australia would eat up, not just for “therapy” or “hospital visits’ but for education and fun! Plus – my husband needs to be educated on how fun these toys are (and it’s extra fun when all your friends own them too. We don’t want to be the only ones with Koosh Balls on the street).
So I realize that I have not discussed what surgery I am going to go through and the details about it. I have told myself that it is because I am a private person which is kind of funny being that I have started this blog that requires me to be open about my life.
After further thought, I realized it was because the less detail I give, the less real it seems. I can talk “around” it. I realized this was my real “issue”, when a friend of mine who is being treated for Breast Cancer mentioned she does not like to call it Cancer but calls it “Bob”. She explains how this has made it “less scary”.
I am not someone who does that unless I feel like the person I am talking to is overwhelmed with how direct I can be about the numerous intense experiences I have in my life. Then I either, don’t tell them, or “soften it down”. But blogging has been a way for me to be direct, and if readers do not like it, they don’t have to keep reading – it’s that simple. I get that I have gone through some pretty intense situations from a young age and sometimes that is too much for people to hear and it simply isn’t personal if people would prefer not to hear it.
However with opening up about my situations I have encouraged others to be more open about some things that they had difficulty talking about – and for me, that makes it worth it.
I remember visiting a friend 4 years ago after a situation where her leg was crushed while riding her horse. Some people nearly turned white because they were unable to stomach seeing her leg when they walked into her room. I guess with my surgical history and the fact that I chose Premed when I was younger because I so desperately wanted to be a surgeon, these things don’t bother me. Also the fact that I had had several experiences with hospitals myself – that walking into one almost feels like a second home.
The doctors had to keep my friend’s leg “open” in order to drain the excess fluid that kept going to her leg. I walked in to her room and I saw the amazing technology keeping her leg drained and and saw all the muscles and I said “OH THAT IS SO COOL!” A woman who was visiting her nudged me like I had said something offensive. My eyes opened wide (the last thing I would want to do is offend a patient in the hospital, let alone my friend), and I looked at my friend and mouthed the word “sorry”.
She told me later (after the woman left) that my reaction helped her “face” her leg. That she had refused to look at her leg until I walked in. I realize though, had it not been for how direct I was about the subject and unafraid to discuss a situation which obviously made others in the room uncomfortable – she may have taken longer (if at all) to look at her leg, and face reality. She explained how that day changed the way she looked at her situation.
So with that – I’m working on being direct about the next weeks to come, and surgery. I don’t function very well skirting around topics. Which is probably why I write this blog.
So for about 6 years I have wanted to become a teacher. I love seeing children learn. I was about to go back to school 6 years ago and I got sick and ended up in the hospital and spent years recovering – so I finally get back on my feet, and enrolled in education. Again, I am dealt a hard blow of another major health issue and I have taken time off again in order to have surgery and take time to recover. It’s times like these that I wonder if I’ll ever get into the classroom as this is the story of my life. When I had enrolled in my first year at college when I was 17 and studying focused on Pre-med I found out that I had a heart condition that made me need a pacemaker. I was told I would recover and return to school promptly – only to have had years of pain from a mistake made by the surgeon.
I was in pain for the next 9 years with the arm on the side of my pacemaker. I told the surgeon about it and doctors for years only to be told the pain was “in my head”.
It wasn’t until I moved countries and needed a replacement that my new surgeon said “I hope you don’t mind, but I noticed your pacemaker had been resting on a nerve which might have caused you pain – I moved it during surgery so you might have a bit more muscle pain as I had to put it in a slightly different spot than you were used to”.
Seriously 9 years of pain gone! Not in my head! I never told my new surgeon about it because after complaining for years I gave up asking doctors about it and just accepted it. BUT those 9 years prevented me from doing much with my arm. I could sit hours a day in agony with nerve pain going up and down my arm – with no pain relief helping. I HATE when people are told that things are just “in their head”. I joke saying “Well, technically you can’t feel pain unless your brain registers that the area is in pain – so yes… ALL pain is in the head”. Anyway – I digress.
The reason why I tell you this is because I am fascinated with how the brain works due to my medical background (of being a patient and student) and also how people learn (due to my fascination with education). Do I have any documents saying that I have some sort of expert in this area? No… thanks to many of the medical reasons above (and I didn’t even list all of the times this happened). SO I am a frustrated student who has never finished, and I am equally frustrated that this has happened ONCE AGAIN. However my family likes to point out that it’s a miracle that I’m alive in the first place and so maybe I just need to find a different way to get through life.
With explanation of my unfulfilled passion – I thought I would mention that I stumbled upon a piece of research that absolutely delighted and fascinated me from BPS: Pretending to be Batman helps kids stay on task. What? I know!! My next question is… would this help adults? Hmm.. maybe it’s only my deep down desire but part of me wishes that I should dress up as a superhero in order to clean the house. I’m sure my husband would approve, of the cleaning and the outfit.
Maybe I should find an adult Batman outfit if I ever get back to my education degree and I’m writing my Philosophy of Education essay. I’d do it too. Could a company benefit from adults wearing superhero outfits while getting their work done? Oh… my imagination when I read such a pleasing piece of research… Oh how I hope they discover this is true for adults as well!
I’m now thinking that those people that dress up at Comicon are the normal ones and have secretly known about this all along and we’re all just catching up to this idea. Also if it does work for adults – then I want my surgeons (and nurses) to be dressed as Batman during my surgery – and if they can’t be – well – at least I’m hoping to convince them to wear some Batman scrubs?
What do you think?
So Not only was I in the waiting room with the European family, but with a beautiful female Aboriginal Elder.
The waiting room was packed and I was stuck in the corner, but the corner people got called into the doctor’s offices and sure enough, the only place to sit was by me.
She walked in barefoot with two other women who were also aboriginal but worked for the hospital. I could tell by the way they spoke to her that she was important in her tribe, and through deduction I believe she was/is an elder. I am not aboriginal, but I have learnt a lot about some of the different tribes and still have a lot to learn. It fascinates me that there are so many traditions and differences between tribes in different areas, and just like native Americans, there are different traditions and ways of handling things.
I suddenly became aware of how unnatural our surroundings were, and imagined her connecting with the outside world a little better than the building we were in. She often had her gaze out the window.
During this time the two women that worked for the hospital and government were asking about getting more clothes for her and how to go about doing that. She said calmly “I don’t need anything” as she kept her gaze out the window. One of the women responded “but what if you want something? Besides the dress you are wearing, all you have brought with you is your Pajamas?” She smiled and she said “That’s all I need”. They girls kept saying “It’s not about what you need but what you want.” I could tell that they were not all seeing eye to eye, but the women were trying to help, while the beautiful aboriginal woman just smiled to herself and looked out the window in total peace.
I couldn’t help but just admire that. What was she thinking? Why was she so calm when she obviously had challenges being that she was in the cancer clinic, and from the discussion these women were having with her, she was never going to have a chance to live in her home again. She was really sick.
Other seats opened up around me to move as they were obviously speaking about things that were private in my view, but at the same time, I didn’t want to get out of my seat – due to this peace that this beautiful woman seemed to radiate.
She mentioned something about being happy in her pajamas all the time, rarely making eye contact but staring at the clouds outside the window. The two girls talked, one of them saying how it took all their effort to get her changed in her room to come here to the waiting room. I kept looking at her bare feet… realizing how unnatural of an environment it was for her. I did think about all the ground her feet had walked on, and if she ever wore shoes.
It made me think of all the things that I feel I need in my life but she kept insisting all she needed was her Pajamas, while smiling with peace.
I then started wondering what her Pajamas looked like. Were they that comfortable that one of the ladies with her did actually have a hard time getting her to change? Obviously there was a compromise with the footwear… or hopefully an understanding.
I know it sounds weird but I then remembered that one of my favorite gifts I have received while in the hospital has been a comfy pair of Pajamas. Sure you gotta wear those horrible gowns – in vomit green and choking purple – sorry (some people do wear them wonderfully as it’s their color) but my favorite part is when the nurses tell you it’s okay to wear your own clothes. You start to feel human again, having something that is yours with you, and on you. Not just a patient anymore – your own clothes make you feel like a person.
Anyway – I know it sounds weird but I thought for me to get myself “looking forward” to hospitalization – I want to get myself some new Pajamas – along with what I call “my hospital socks” as those too were a gift for me 18 years ago in the hospital and they have become more popular and like regular socks. I’m definitely not as comfortable with being barefoot as the beautiful Aboriginal lady, but I will happily wear socks with grips on the feet (I’ve been told they are called Pilates socks – apparently for exercising… ahem… not for me – this is for me walking in a hospital).
Although I’m not sure if I should get Satin Pajamas, Cotton Pajamas, nighties or pants.. I will check with a nurse friend first to find out what design would be more suitable to my surgery….
SO I’m on the hunt to make me feel as comfortable as possible! Maybe if I stare out the window like the beautiful Aboriginal lady, I might be able to convince myself I’m not at the hospital.
No I do not have cancer, but I do have to go to the Cancer Care Clinic for my hematologist (one of my many specialists). Every time I go there I am humbled.
There was one European family who was waiting for an interpreter. I paid attention because I was just leaving the bathroom when I saw the interpreter walk in and although I did not realize she was an interpreter I remember thinking “She looks well, she doesn’t look like a patient”. So then when she walked into the waiting area after I sat down – she looked so well that the family who needed her asked her if she was the interpreter as well, they could tell right away she wasn’t a patient.
I believe the daughter (who looked as old as my mother) was explaining that the interpreter was for her mother (Who I presume had cancer). In walked another woman who I thought was part of the family but in her early 40s and she was bringing in a woman who again, looked as old as my mother – who was blind and couldn’t talk except make noises, and had obvious physical disability (using a walker – barely).
I want to make it very clear that I have been around many disabled children, and even adults, with various disabilities and I feel quite comfortable in situations like that but I have never seen someone with this many obvious challenges that was of this age. I was a bit startled. They introduced her to the interpreter by making them touch (due to her not being able to see). It suddenly hit me why they were all there. Who was going to look after this grown woman with disabilities if her mother (who I assume was in her late 80s) couldn’t look after her daughter anymore?
I realized that part of that meeting probably had to do with explaining this to the severely disabled daughter and a plan of action to go forward on how to go about it in the best way. I started wondering a bit more about this 80+ year old woman who had raised a severely disabled daughter for 60+ years. What strength, what sadness, but how much more difficult it would be to know at that age, that you still have children that need caring for that you can no longer take care of due to your own health? My heart broke for them. I gave them my best smile as they slowly walked down to the doctor’s office (mother and daughter in walkers) but I was unsure if that was even the proper reaction due to the challenges they had ahead of them. I don’t think I would be up for smiling if I was in that situation.
Obviously I have no power to change their situation but I guess it makes me wonder if there is anything small to brighten their day. I have not had cancer (knock on wood), but I do know that I would need to find things to keep my mind positive – similar (but very different) to how I am looking for positive things to focus on now with an upcoming surgery.
The ultimate problem cannot be changed or fixed.. so you could only focus on the smaller things to find joy.
I know this sounds silly but I want my toes painted – fun colors so that when I see my feet at the end of the bed I can focus on the toes while dealing with uncomfortable situations (i.e. people about to help you go to the bathroom and such).
I have books but sometimes in a hospital you can’t concentrate.
I’d have an old MP3 player that I use – which I would prefer to a phone as you want to save phone battery for phone calls. BUT I am slowly planning an MP3 Playlist that can help me in whatever mood I am in. My Sensory son is in love with Imagine Dragons, and although I have never really been into them, I was curious as to what their music was all about. Now the CD that we rented from the library is being played 24/7! I have found some very encouraging music (that gives me the “fighting feeling” – instead of “feeling sorry for myself music”) on there – so I am planning on telling my hubby to put it on the playlist. Inspirational quotes? I’m not sure.
Please let me know of any feel -good uplifting music or fun things to keep your mind focused on when in the hospital, or what has helped you personally or people you know:
Sometimes you have that moment… where you think the worst, you anticipate the worst, and you start wondering about the worst case scenario.
This was true for me. All because I had an expert in a particular field, who did not understand my health history or my perspective, decide that I had a very bad road (at best) in front of me with this future surgery.
Things turned around for me today. I saw my GP who has seen me for 14 years. She has seen me through each child, each health issue, and knows how many specialists I have to see. I told her my experience with a recent “NEW” specialist who didn’t know me or the weird but positive outcomes that have happened when doctors had anticipated the worst.
She knows not just all about my physical health, but my mental health, all of my family members (including parents, in-laws, siblings and nieces and nephews), She has a broader perspective on understanding who I am in so many different ways.
She once reassured me in a particularly bad year where I contracted an “unknown” virus that caused me to forget, lose my speech, and movement (almost like a stroke) – yes lucky me. She asked me why I hadn’t told her about my forgetfulness during this time (thankfully no longer an issue), and I said “I was worried ‘they’ may take my children away from me… what if I forget about my children?” She knew me so well she said “are you kidding me? You are one of the best people I know, they’d be giving extra children to you, foster children, before they take anyone away! You are incredibly balanced and mentally healthy considering so much you have gone through – you are actually one of my most mentally healthy and balanced patients I have”.
I was surprised at this and discussed the times where I have asked for help and she explained “But you actually ASKED FOR HELP! YOU KNEW when you needed help and you asked for it! You didn’t let the fear of asking for help stop you because you knew what was important”. This made me see myself in a different perspective. YES, I have issues to deal with, but I am open and I’m honest about them and I am usually okay with admitting my problems because I always find out that others are dealing with similar things. To me this is one of my goals. If we were all more open about our struggles, a lot of us would find out that we are dealing with similar issues and feel supported. I love it when people find out they aren’t alone and do feel supported knowing they aren’t alone. To me just knowing you aren’t alone is such a healing concept.
Anyway (as per not feeling alone) – today she told me that she had several patients that had gone through the exact same surgery as I’m going to have and they were doing fine. She said some had to go through the surgery because of similar issues like me, and some had to have emergency surgery and some had to go through it because of diseases – but that despite the fact I am “higher risk” she felt I would be okay because none of her other patients who had gone through what I am going to go though have ever had any major problems. They “function like everyone else”, I was told.
Well… in that case – maybe I just needed someone who knew ME, who was also in the medical field who also expressed positivity. She was excited when I told her “if I meet the surgeon and don’t feel like he is positive I’m getting someone else”. She seemed quite surprised but happy I was standing up for myself. Hey! If this is really a high risk surgery – I want someone who feels just as positive. My GP may know people who have gone through this – but my other health issues provide slight more complications that make surgeons nervous.
A good example was in the exact same appointment today when I asked her about a piece of gravel in my knee (Yes you heard that right!). We both know that I can’t have the possibility of any sort of infection going into this surgery so I told her that the gravel which causes chronic issues with a small piece of skin – needs to be removed. She said that I need to talk to a hospital doctor about that. I said “Wait a minute!! I thought you could do this?” She laughed and responded “Yes, but not for you I don’t!” – See? I have enough health issues for my GP to be nervous about getting a small piece of gravel out from the surface of my skin.
I should explain the amazing situation of why I have a piece of gravel in my knee (It was only 6 months ago and it involved being dragged by a car) but that’s a post for another day.
Anyway – I got this idea from two books that have helped me a lot in this situation. Robin Robert’s book Everybody’s Got Something – her chances were extremely small – and her first doctor was quite negative – so she changed doctors and got one that was positive.
The second book I recommend tells of Dr Ben Carson who performed some of the most difficult neurological surgeries in the world talked about the state of mind he tried to make sure he was in before he performed surgery. I never realized it until I have had to go through a high-risk surgery, that I must…. and I will ONLY find a doctor who is positive about performing this surgery. I am working on being positive with my mindset going into surgery – but it is equally important to find a surgeon who is positive about performing the surgery!