61: Tomatoes and Tests with Two Lines.

I wrote the following over a year ago. I have updated the timeline to be current but I have since worked through most of the emotions I am about to discuss. I considered not making this public (it has been published privately for a long time) since I feel like the words are no longer true. However I believe some other person might feel the same as I did a year ago and may find comfort from knowing they are not alone.

It has been almost two years since I last fell pregnant. It has been more than three years since we started trying to get pregnant in the first place. I keep a tally of all the babies we know that have been conceived and born in that time. I also know of multiple miscarriages that multiple women in my life have experienced in that time. I’m not alone. I’m always aware of that.

I had an ultrasound during my second miscarriage. The doctors wanted to check it wasn’t ectopic pregnancy. It was an awful experience. I wish I hadn’t gone through with the ultrasound as the experience was worse than the miscarriage itself. I was uncomfortable and in pain; then I had to get undressed and lay on some towels while I had an internal ultrasound. There wasn’t anything too see. It was too early. My hormones were high, my lining was thick, but it was wasn’t a pregnancy that was meant to progress.

I get worried that none of it was real. I don’t want people to think I had a phantom pregnancy because there wasn’t anything on my ultrasound. My doctor assures me that I was pregnant. It was real.

My logical mindset told me not to cry. I cried silently in the waiting room. A few tears rolled down my cheeks but I didn’t cry loudly. I normally cry loudly. I normally feel every emotion so strongly. In that moment I didn’t feel anything. I knew there was nothing I could do, there was absolutely no way to prevent it, there was no point being upset… in that moment. The next few days I would feel more complex emotions. I expected to feel much more than I did. I was annoyed that I didn’t feel enough. I have known other women who had lost pregnancies and they felt so strongly and we all felt for them. I would stand alongside any woman and support her, but when it was my story, my experience, I was numb.

My dominant feeling throughout the experience, and ever since, is frustration. I’m frustrated that it doesn’t feel real. I’m frustrated that the validity of my pregnancy could be questioned (mostly by myself) by an empty ultrasound. I’m frustrated that I didn’t feel more. I’m frustrated that my mind tells me other people are allowed to feel more than I am. I’m frustrated that after a while of trying to conceive I lost an opportunity to finally achieve my goal. I’m frustrated that I haven’t been able to get pregnant since. I’m frustrated that I can’t control my body or my emotions or my fate. I’m frustrated with not knowing whether or not I will ever have a successful pregnancy. I’m frustrated that I have spent so much time thinking about it and have began doubting myself.

Most of all I’m frustrated that I can’t talk about it because that’s not how the world works. I don’t want to make other people uncomfortable. I don’t want to have to explain all the details. I want to respond honestly when people ask me if we want kids or when we are planning on having them. I want to say things like “when I was pregnant I loved tomatoes” because for a only a few weeks in my life I didn’t hate tomatoes!

I kept all my positive pregnancy tests, discoloured and faded, in a ziplock bag. I did it so I can remind myself it was real. Sometimes I feel like I imagined it but those lines are definitely there. I remind myself that I will have another positive test one day in the future but it always seems like a lie.

53: Sitting with my Sadness (and analysing anger.)

I have been in therapy, seeing a psychologist, for years. I have a history of depression and anxiety. I have been trying cognitive behaviour therapies since I was 4 years old. In my late teens I started trying what my psychologist referred to as acceptance commitment therapy. A.C.T. was the most helpful method I have ever encountered. I began to allow myself to have emotions and have thoughts without trying to control and suppress my feelings. This really helped me to relax and be able to really sit with my feelings and experience them. By doing this I have been able to analyse the way I think and why I react to things in certain ways. Instead of trying not to be anxious I am able to find why I am feeling anxious. When I am sad I look at why. Sometimes the answer is that I have a chemical imbalance or a predisposition, but usually I find that something has triggered a thought in my head and then I spiral. It had helped me feel in control. 

One of the things I have struggled with the most during this process is allowing myself to have negative emotions. I feel as though we are told from a very early age to suppress these feelings. Don’t cry. Don’t be afraid. Don’t worry. Don’t be angry. Don’t be jealous. Don’t be sad. In this way we don’t learn to look inward at why we feel this way or how we can make ourselves feel more comfortable emotionally. We only learn that we shouldn’t feel these things. We know we will be scolded for reacting negatively to a situation. Instead of learning how to have feelings appropriately.

The problem with suppressing these feelings is that when you can’t hold it in anymore you explode. So many people I know have encountered this, when everything just becomes far too much to handle, you find yourself experiencing all these feelings you have ignored all at once. Without acknowledging your feelings and dealing with them, you can become overwhelmed. Sure, some people never have this problem, but in my experience I have found many more who have.
In some ways I had to learn to “self soothe”, to sit with my fear or my anger or my sadness. I let myself cry it out. I let my emotions dissipate naturally and this occurred much faster than when I tried to force them away. So often I have been told to “move on” or “that’s enough” because “there’s no point getting worked up” or “we have been through this”, instead of letting go in my own time. My feelings make other people uncomfortable. I know this. I know that I am an extrovert and when I feel good I want to share it and when I feel bad I seek the acknowledgement of others. I want to be told that my feelings are valid, because even now I feel I need permission to feel. 
I find myself getting more upset now when my feelings are met with disapproval. Once I accepted this new way of feelings it was harder to let other people dictate how I should have my emotions. I know it’s trendy to dismiss people, especially millennials, for having too many feelings. I know that it comes across as self indulgent to allow myself to stop and listen to my emotions. I know how much it bothers my family to hear me repeating myself out loud as I try to process the thoughts my brain keeps playing on repeat. I am sorry that my feelings are causing an inconvenience to those around me. However, the old way caused much more inconvenience to myself. It disrupted my life because these thoughts and feelings never really went away, I was just ignoring them until they became too loud. I didn’t want to feel anything until I couldn’t function at all because of all my built up fizz, bubbling to the surface, overflowing, drowning me. 

We should all me allowed to feel things. I don’t expect anyone else to “fix” my negative feelings. I will find a way to resolve. First I need to know the cause. I need to sit with my body and my mind. I need to look within. I need to hold my feelings like a glowing crystal ball. I need to turn it over in my hands and take in every angle. I need to run my fingers along it, to feel the textures, the warmth or the cold, the smooth or the rough. I need to breathe in and out and take my time, and as I do the ball will get smaller and smaller, and it will become easier to hold. It won’t disappear but it will get smaller. The next time that ball expands and I have to deal with it again it won’t take as long, I will recognise it, remember the details, I can recall how it shrunk away and have faith that it will do so again. 

My feelings are more familiar now. I can soothe myself. I tell myself my feelings are justified because I know why it is I am feeling them. I know myself better now. I trust myself. I still have to remind myself to take time to listen to my inner self. Ignoring my feelings means I am not being honest to myself. I have to remember that I am important. I’ve been told it’s a waste of time dwelling on feelings but life is full of feelings and ignoring the negative is only experiencing half of life.

52: Expecto Patronum

It’s been a while since I’ve discussed something nerdy. This is going to fulfil that requirement as I want to discuss the concept of the patronus charm. If you are not a fan of Harry Potter, let me bring you up to speed. In JK Rowling’s Wizarding World there is a magical charm used to protect yourself against dementors, which are large soul sucking creatures. Obviously the dementors are a physical representation of depression as they make you feel unbearably sad and literally suck the life from you. The patronus charm is cast by conjuring your happiest memory. The spell is supposedly very difficult to cast successfully. Those witches and wizards will know that they have cast the spell correctly as an apparition made of light in the form of an animal will appear to fend off the attacker. 

According to Pottermore “the patronus is the awakened secret self that lies dormant until needed”, there is a quiz on the website which will provide you with your patronus animal from a preset list. I remain unconvinced by this method of determining what my patronus animal would be. There seems to be a few set rules for what your patronus will be. 
1) It represents protection. Whether this is protection given by the strongest part of yourself or representative of another person or trait.

2) It is unlikely to be your favourite animal. In rare cases a person will conjure a patronus in the form of your favourite animal but this is usually a sign of eccentricity. “Here is a wizard who may not be able to hide their essential self in common life, who may, indeed, parade tendencies that others might prefer to conceal.” (source

3) The form of a patronus can change throughout your lifetime. This is usually caused by a shift in your character whether caused by love or grief. 

4) Usually the animal is native to your own country.

5) It is possible, although extremely rare, for a patronus to take on the form of an extinct or mythological creature.
Having covered all that, I have been curious what this would mean for me. If I were a witch in the Harry Potter universe, what form would my patronus take? I have compiled a list of animals and why I think they might be likely.

Octopus:

Specifically, a blue ringed octopus. These creatures are native to Australia, fulfilling one of the main criteria. The blue ringed octopus is quite small, approximately 5 to 8 inches, yet deadly to humans. They are calm creatures but if handled or irritated they will kill you. Octopuses fascinate me as they are extremely intelligent creatures despite looking very strange. 

Duck:

Ducks are not my favourite animal yet my family seems to associate them with me. When I was a teenager, and a student of photography, I found that ducks were willing to allow me to approach them for photographs. Ducks trust me for some reason. I believe in a lot of way I am similar to ducks. The shape of my feet, for instance, makes me an exceptional swimmer. Also I find that ducks are often considered clumsy or foolish, which are traits I inhabit also. I think it would be amusing to have a duck defend you from a dementor. In many ways ducks are representative of childhood and happiness so I suppose it would make an appropriate patronus.

Cat:

Ask anyone in my life what animal they associate with me and they will answer cats. I have half a dozen pet cats. They are my favourite commonly domesticated animal. I don’t think they would be my patronus however as I don’t believe my subconscious is similar to a cat in any way. 

Platypus:

As with the duck and octopus I have an affinity with aquatic or semi aquatic animals so I think my patronus would be an animal comfortable in water. The platypus is another animal native to Australia. While this animal appears to be a Frankenstein’s monster of many other animals, it is truely unique. A marsupial with webbed feet and a duck’s bill, it is covered in sleek fur similar to a beaver. The male of the species has a secret defensive in the form of a poisonous spur on its rear legs. This poison is extremely painful to humans and deadly to dogs. I believe a platypus would be a surprising patronus yet fitting.

Seahorse:

I love seahorses, they are definitely on my top five list of animals. My favourite thing about seahorses is just how bad they seem to be at survival. In some cases if a seahorse were to let go of it’s anchor object with it’s tail it could float away in the current and not have the strength to return to it’s spot. For a marine animal, the seahorse is not a satisfactory swimmer, moving very slowly and using a lot of energy. Such a fragile creature would be very much inappropriate as a patronus.

Albatross:

Birds are a common patronus so why not the albatross? Albatrosses are large seabirds, some of the largest flying birds in the world, with wingspans up to 12 feet. They’re exceptional fliers and can travel large distances with very little exertion. The albatross has been used as a metaphor for a curse or burden since the publication of Samuel Taylor Coleridge’s poem “The Rime of the Ancient Mariner”. Albatrosses can be considered a good or bad omen depending on the circumstances.

Frog:

My grandmother hated frogs. My family having a dark senses of humour, would purchase ceramic frogs for my grandmother to display around her home and in her garden. As much as she disliked frogs her grandchildren began to associate frogs with her. My comforting memories of my beloved grandmother can be illustrated by the presence of frogs, therefore I would not be surprised if after her death my patronus changed formed to a frog.

As this is all a work of fiction I will never know what my patronus would be, just as no other fan can ever know for sure. It is fascinating to speculate however.

Chapter 36: The Future Is Full Of Trolls

[I am not a medical professionalLinks to resources can be found at the bottom of this post]

This week has been a celebration of the 30th anniversary of the Back To The Future trilogy. October 21, 2015 marks the day that Marty McFly And Doc Brown travelled from 1985 to the “future”. Everyone is discussing the predictions made by the second movie of the Back To The Future series. Some have been accurate but many have not. (Don’t even get me started on hover boards.) Over the last week I’ve watched a lot of interviews and documentaries featuring Michael J Fox, the actor who brought the character of Marty McFly to life. Scanning through some of the comments on these videos it occurs to me that many young people have no idea who Michael J Fox is. It breaks my heart to see video comments stating such accusations as “He’s so drunk”, “it’s rude how much he is fidgeting”, “why can’t he stay still?”, or even the assumption that drugs have made him this way. Many of these comments must come from obvious trolls but I was under the impression that most of the world who were in entertainment or received a television signal were aware that Michael J Fox has Parkinson’s disease. These comments shouldn’t bother me but they do. Parkinson’s is a real thing that many people are affected by whether they themselves have it or their loved ones, and it’s not fair that immature people on the internet get a kick from making fun of the sufferers.

We live in a world where people think it is appropriate to say whatever they like no matter how ignorant or hurtful. People hide behind the anonymity of the internet; this is not a new thing. Internet trolls think they are making fun of a celebrity, someone who will never see the comments or who won’t take much notice because in the grand scheme of things their lives are so busy, and realistically probably a lot more successful than the typical internet troll. But it is not the celebrities that are affected by these comments, it’s the other people. The everyday people in the comment section who are replying to these comments with their own experiences with Parkinson’s disease. People these trolls do not know personally who lost mothers, fathers, grandparents, brothers, sisters, or even children to this illness. It is not just Internet commenters who find it appropriate to joke about a very serious illness, I have my people in the real world who find it amusing to make smart remarks about Parkinson’s disease specifically in regards to Michael J Fox. These people have never met someone in their lives who was suffering from Parkinson’s or any similar illness, to them Michael J Fox is the only person they know with Parkinson’s and he’s famous so they forget he is a real human being.

I should not be bothered by these comments, they are not directed at me, I do not know these people, but I am bothered. Not just because I have met people and I know people with Parkinson’s (which I do) but because when I look at Michael J Fox, a person I do not know and have never met, I see his movements and I am reminded of the movements associated with Huntington’s disease. Huntington’s and Parkinson’s are very different and yet very similar. Those who have read my previous blogs would know that my grandfather had Huntington’s Disease before he passed away in 2004 and my mother currently lives with the condition. For more information you can read my 9th blog where I give an introduction to HD and how it fits into my life. When I was a child the symptoms of HD were described to me as being like having Parkinson’s, Alzheimer’s and Dementia all at once. When I try to describe the movements to someone who has never encountered a person with HD I say they look very similar to Parkinson’s and usually the person instantly recognises what I am trying to describe to them. People have come to know what Parkinson’s looks like from seeing people in the entertainment industry living with it. Huntington’s Disease does not have a celebrity advocate out in the world talking about their battle, and I’m partially glad because I would not wish it onto anybody even if it would help spread awareness.

A quick Google search tells me that influential folk musician Woody Guthrie was diagnosed with Huntington’s disease in 1952. Years before his diagnosis it was assumed that Guthrie was schizophrenic or an alcoholic. Many people who suffer from movement disorders slur their speech and stagger when they walk so many believe them to be alcoholics. it is not just internet commenters who think that people with movement disorders seem intoxicated, there have been incidences involving police officers (read Cops Assault Man With Huntington’s Disease For “Resisting”). Thinking someone with HD (or Parkinson’s) is drunk isn’t funny, it’s dangerous. I think it is understandable that some people would find it upsetting to read comments saying someone is “so drunk” because of the way their illness is affecting their ability to speak and move. 

I know that Parkinson’s and Huntington’s are different in many ways. I don’t mean to offend anyone by grouping the two conditions together for this particular blog. For a long time many people with Huntington’s were misdiagnosed as having Parkinson’s. For many like myself the two are permanently related in our minds. The HD community needs more visibility and awareness but in the meantime when I see somebody on tv moving in that very recognisable way I am reminded of those who I care about who moved in that same way.

I know I shouldn’t be bothered by Internet commenters but I am.

As always a disclaimer: this blog is about my experiences and opinions. I am not a medical expert. I do not know Mr Fox or his personal experiences or opinions and can not speak for him. I am not an expert on Huntingtons or Parkinsons. For more information please visit the following links:

Information about Huntington’s 

Huntington’s Disease Association NSW

Huntington’s Disease Association VIC

International Huntington’s Association

Huntington’s Disease Association UK

Information about Parkinson’s 

Michael J Fox Foundation for Parkinson’s Reasearch