Julia Robertson

@julia-robertson | contributor
Mum of four, psychology student, volunteer research assistant, peer mentor, Brain Tumour Support. Group Faciliatator, Brain Tumour Survivor. Raising awareness and funding for Brain Tumours and ABI. Studying to be able have a hands on part in helping patients and clinicians.
Community Voices

Forgiveness and Understanding towards Medical Professionals

Yesterday marked 16 years since my initial brain tumour diagnosis. Yesterday was also the day we had a Neuro-oncologist come and speak to our brain tumour support group about Gamma Knife™. It brought a lot of clarity for me in ways I had not expected.

When I was first diagnosed, I could not find a neurosurgeon in my state willing to take on the delicate surgery required. I searched for 8 years without any success until I looked interstate. I found a neurosurgeon willing to take the risk and confident in his ability to help me. I cried tears of joy at the news he could save my life.

After surgery I was very angry with the neurosurgeons who had refused to treat me. I wanted to go and see each and every one of them, stand tall and tell them that I had won the battle despite them. However, I didn’t do that. I can to realise that I was far better off having a confident neurosurgeon with my life in his hands than some one who was not confident or able to do the job.

Yesterday as I sat and listened to the presentation about Gamma Knife™ , I realised that while Gamma Knife™ could have worked for me and saved me from many of the deficits I experienced after surgery, it wasn’t available in my area until 2015. I was given a prognosis of 6 months in 2010 so there is no way I would have been able to access the new technology.

It has changed my perspective and I have been able to let go of those last feelings of anger and frustration about my medical treatment. Quite simply, I was not able to access the services I needed because they were not available. It wasn’t personal. It was most likely very difficult for the specialists I saw to turn me down. I have a new sense of freedom, compassion and understanding. I not only forgive the specialists who said no, I have great empathy for them.

The tide has turned. #AdrenalCancer

Diagnosing Seizures Related to Functional Neurological Disorder

Since I had my brain tumor removed in 2011, I have been on anti-epileptic medication as a prophylactic measure. I had several small tremor incidents, so the dose was increased over time. Over the last five years I have been told I am epileptic and then not epileptic. In October 2015, I attended four very cognitively challenging conferences and a fun run in the space of a week. As I live far enough out of city to make travel time to these events difficult at best, I booked a hotel in the area. I knew I needed to manage my sleep well or I would not be well. I made it through to the end of the fourth conference without incident despite late nights, early mornings and information overload. I went to the Fun Run on the Saturday morning and was not feeling myself. As the day went on I felt less and less able to cope and was changing my plans to get home. First I decided I would be OK and catch public transport, but as time went on I felt I would not be able to manage that and should probably catch a cab. By the end of the day I didn’t think I would be able to manage that either. By the end of the event I had to go and lay down on the grass and an ambulance was called. I felt rather silly that there was so much fuss and an ambulance involved. I was just feeling “wrong;” I didn’t feel like I was ill enough to warrant all of this. We made it into the emergency bay and I was wheeled in to wait for triage and be allocated a bed. Before any of that had a chance to happen, the paramedic at the end of the stretcher I was on called out “She is seizing!” What happened next was all a bit of a blur. I went into a full tonic clonic seizure and was rushed into acute care, then straight into resuscitation. There were lots of lights and people. Someone was calling my name and asking me to open my eyes. I was being hooked up to more monitors, IV lines were being put in, my clothes were off and a gown was on. From what I was told later, I was going to be intubated. Over the course of the next few hours while I was in acute care, my brother came up to see me. I thought I had one seizure in the cubicle while he was there, but apparently it was closer to five and I was whizzed off to resuscitation a few times. By the time I was moved up to the ward I had a total of 12 seizures. This had never happened to me before. I was exhausted and slept 10 hours straight in the hospital, through hourly observations, completely exhausted. I was kept in hospital for a few days and then sent home with a request form for an MRI and a follow-up with my doctor. The CT scan they did in emergency was clear of anything nasty. In March 2016 I was at university and had just finished my last lecture for the day. Before I made it much further than the hall I started having a seizure. A friend and my lecturer stayed with me while an ambulance was called. By the time the ambulance arrived to take me to the hospital I had six seizures in total in the hall. I had another in the ambulance and seven more in emergency. I spent some time in resuscitation and was taken up to the ward when I was stable. The following morning I had four more seizures. Two of those resulted in codes. In February of 2019 I went in for a minor day surgery and ended up in ICU. I was in recovery after my surgery and started seizing. I was admitted to ICU where I stayed and was monitored for two days while the episodes continued. An EEG was done while I was in ICU and I was moved to the neurology ward. At the end of the week I was released without a clear diagnosis and my own neurologist having a contradictory opinion to the neurologist who had admitted me to the ward. A week later I was having an iron infusion in my doctor’s office and had more of these episodes. An ambulance was called and I was taken back to the same hospital I had been in the week before. I spent a few days in hospital again with more testing going on. Thursday night I coded twice and Friday night I coded again. I was released to go home on Saturday as I had an appointment with my neurologist on the following Monday. That Monday, my neurologist gave a diagnosis. I do not have epilepsy. I do have seizures though. They are called dissociative seizures. I was thrilled to finally know what was really going on! When I got home I went through all the literature that had been given to me and visited the website they suggested. As I understand it, a non-epileptic seizure attack or dissociative seizures as they are also known, are part of a broader group called functional neurological disorders or conversion disorder. These episodes can be described somewhat like a panic attack or a migraine. It is a dysfunction of the nervous system. Nothing that shows up on scans or blood work shows that you have them, but they are very real and have a significant impact. Dissociative seizures can be medically or psychologically based, or both. In my case they are brought on by exhaustion and stress. Now that I have the diagnosis and am armed with information about what my seizures they are and how they work, I can move on with my life with strategies in place to manage them. As a team, my neurologist, doctor, physiotherapist, psychologist and I are finding ways to manage stress and make sure that I am getting enough quality rest. With these plans and tools in place, I can hopefully get through without having another episode. If it does happen I will know what it is and how to deal with it. Don’t be afraid of diagnosis. Try not to feel angry or upset if there is or seems to be a psychological aspect to your diagnosis. It doesn’t mean you are “crazy,” and it doesn’t mean you are “faking it.” It is what it is, and knowing means you can work with your team to get it under control, so you can get back on track and moving forward.

Juliette V.

'Harmless' Comments Therapists Said That Actually Hurt Their Patients

Therapy is a big part of healing for many who’ve struggled with mental health in their lives. And as people who have been in therapy know, it can be an incredibly vulnerable and scary experience. I mean, when you think about it, you’re confiding the deepest, darkest parts of yourself to a complete stranger — usually while hoping they won’t judge you or think you’re being “too much.” So when that highly-trained stranger makes a seemingly “harmless” — but actually invalidating and painful — comment, it leaves a mark that is often hard to erase. Maybe your therapist suggested trying a diet to help with depressive thoughts — without realizing you’ve been struggling with harmful dieting and disordered eating for years. Maybe lack of experience with your particular diagnosis led them to make a sweeping and harmful generalization about people with your condition. Or maybe lack of funding and resources caused your therapist to let you go as a client — triggering feelings of being undeserving or “past help.” And while we should absolutely acknowledge therapists are only human and recognize everyone’s needs in therapy are different, it’s important we talk about the harmful things therapists have said to patients, because the reality is, the way professionals talk to their patients can affect the way that patient seeks help for the rest of their life. We wanted to know what “harmless” comments therapists said to their patients that actually hurt their mental health, so we asked our mental health community to share one with us and explain what it felt like to hear it. If you have been mistreated or invalidated by a therapist, you’re not alone. Good therapists are out there, and even when mental illness makes it hard to seek out help, we encourage you to not give up on therapy, and keep fighting for your recovery — because you deserve support and healing. Here’s what our community shared with us: 1. “You don’t look very depressed.” “‘You don’t look very depressed. Your hair, your makeup, your outfit — I can see you take good care of yourself.’ Thanks. My anxiety and desire to blend in with society help me put on my facade every day. I don’t remember the last time I took a shower or brushed my teeth. But I’m glad you think I look happy.” — Laura J. 2. “I can tell you are depressed just by looking at you.” “‘I can tell you are depressed just looking at you: the clothes you are wearing, no makeup.’ I was wearing athletic clothing and a ball cap (because I had just worked out ). I was meeting counselor for the very first time as my then-husband has just been arrested for domestic violence and counseling for us both was mandated by the legal system. This was the appointed counselor who was supposed to help me process the trauma and instead she indicated that my apparent depression caused my ex-husband’s violence toward me… I walked out of there and never returned.” — Jenn C. 3. “Isn’t 25 a bit too young to be retiring?” “I was letting her know I was going to be getting everything set up to go on disability for my health and she cuts me off and asks me, ‘Isn’t 25 a bit too young for you to be retiring?’ Then [she] proceeded to try and tell me how I felt and it wasn’t that bad and I overreact when it comes to my memory issues. I had electro-convulsive therapy (ECT). She has no idea about the treatment… Two-ish years later, my memory is still messy as hell and I’m still fighting for help.” — Valerie R. “‘There are plenty of bipolar people who work and are successful. So why can’t you?’ I ask myself this all the time and felt even more worthless.” — Lisa B. 4. “I’m always excited to see you because you have interesting stories to tell.” “I had a therapist who said she was excited to see me because I always had interesting stories to tell. It made me feel like my issues were a source of entertainment for her.” — Lacie J. 5. “We don’t have the resources to treat you.” “‘We have limited resources so our funding would be better spent on treating someone who has a better chance of recovery.’ [This is] what eating disorder services said to me before discharging me for being ‘too severe’ and not responding to treatment.” — Laura B. “‘We don’t have the resources to help you. Good luck.’ [I was at an] utter loss for words. I had never felt so failed by the mental health system. That my mental health issues were too much for help. Where is the line drawn between those who can and can’t be helped?” — Taliah Y. “When I confided in the school psychologist that my suicidal thoughts had come back in full swing, she told me, ‘we aren’t trained to handle that’ and sent me home alone, where I contemplated suicide for the rest of the day.” — Ryann M. 6. “If you have borderline personality disorder, we can’t help you.” “ ‘If it turns out to be BPD, there’s really nothing we can do for it. It’s a personality defect and there’s not really much information about it.’” — Christopher B. “I approached a therapist about a personality disorder once. She said, ‘There’s no way it’s a personality disorder because you’re responding to treatment. People with personality disorders can’t be helped.’ I told my next therapist that and she was appalled. It’s simply not true. At all.” — Tara S. 7. “Have you been praying about it?” “‘You should pray about it’ and ‘Have you tried praying about it?’ While I recognize that some people find comfort in faith, I’m not one of those people. And even if I was, when I go to a therapist or psychiatrist it is for medical treatment, not spiritual guidance.” — Mary M. 8. “I’m not convinced you really have anxiety.” “‘You seem to be doing fine. I’m not convinced that you really have anxiety.’ I have worked hard to come up with ways to cope and function with my anxiety so I can lead a normal life. That doesn’t mean my brain isn’t going a million miles a minute and my stomach isn’t tied up in knots when it kicks in, even if I’m good at keeping a straight face.” — Meagan B. 9. “You can’t have BPD because you aren’t cruel or manipulative.” “After getting my diagnosis he told me, ‘You can’t have borderline personality disorder — you don’t seem cruel or manipulative at all.’ I’ve struggled with self-loathing and poor self-worth my entire life. I left convinced my diagnosis made a terrible human being.” — Rene S. 10. “Maybe if you lost weight, your depression would get better.” “‘Maybe if you did lose the weight your depression would get better.’ [I heard this] after we discussed my body dysmorphic disorder and obsession with my weight and how it might be impacting my major depressive disorder as well. And I’m thinking, ‘Great all of my problems are because I’m fat and everyone else also thinks it’s because I’m fat.” — Melina A. “When I went in for a med review, I told my psychologist I was gaining weight and I thought it was the meds I was on and he said that weight gain wasn’t one of the side effects and that I just needed ‘self-control’ and to ‘eat less food.’ I have struggled with my relationship with food since I was a child, so hearing this sent me into a crazy exercise kick and I stopped eating.” — Haley D. 11. “You need to look for the positives.” “I could be having the absolute worst day and all I hear from my counselor and psychiatrist was to ‘look for the positives,’ and ‘try some dialectical behavior therapy (DBT).’ Sometimes it does more good to just feel my feelings and have them validated (in other words, be told told it’s OK to have these feelings) than to try to put the blame on me for not being positive.” — Jennifer M. 12. “You’re too pretty to be suicidal.” “After my first suicide attempt, I’m in the paper gown, they’d taken all my stuff. The therapist comes in to interview me. Asks me if they let me out, would I try to harm myself again. I answered affirmative. He says these words: ‘It doesn’t make any sense. You’re young and very beautiful.’” — Nolwazi P. 13. “Why can’t you just yell ‘ stop!’ to your thoughts?” “I have OCD, and I suffer with intrusive thoughts. Thought-stopping is actually a compulsion and can send you flying 500 steps back from recovery.” — Bethany M. 14. “That’s not something to worry about.” “‘Oh, that just happens sometimes. It’s not worth worrying about.’ This was said about a traumatic event that happened to me as a child, which I kept secret for 20 years and had only just found the courage to admit.” — Angela M. 15. “You’re so strong. You will be able to get through this with willpower.” “I struggled with self-harm and thoughts of suicide and not being able to get out of bed for years before I made the jump to see a therapist. It was a big step physically, mentally and financially. After one session, the therapist told me, ‘You’re a lot stronger than most of my clients. You will make it through this with your own willpower.’ Then gave me a list of self-help books. I was so confused and didn’t know what to say, so I went out and tried to ‘help myself’ for years after and am still trying to figure out the right treatment. Sometimes, you can’t do it on your own, and that is OK.” — Emily A. 16. “I am no closer to understanding your mind now than I was the first day I met you.” “At the age of 17, after almost 18 months of seeing a psychologist three times a week, he said, ‘I am no closer now in understanding how your mind works than I was the first day you walked in here.’ I left and never went back. For me, it was confirmation of what I always felt — that I was born ‘broken’ and couldn’t be helped.” — Adele S. 17. “I’ve never dealt with this before. I need to do some research before we continue.” “My parents died together fairly horrifically, and the first therapist I saw literally sent me home about five minutes into our appointment. She told me that she had ‘never dealt with anything quite like this, and needed to do some research.’ Thanks. Because I hadn’t already felt horribly alone enough before I walked through your door.” — Sarah B. 18. “You need to stop throwing pity parties for yourself.” “My old therapist told me if I wanted to get better, I would [need to] actually try. She also said I needed to stop throwing pity parties and do something about it (like it’s easy). And that I am using my suicidal thoughts and self-harm for attention (when in truth I don’t tell anyone and they’re not visible…) It really hurt and made me feel invalidated and now I’m afraid to open up about my problems and feel like it’s my fault.” — Christina S. 19. “You couldn’t have really had ADHD if you made it through college and went to grad school.” “This was a psychiatrist who was supposedly specializing [in ADHD]. This was 20 years ago. People were so skeptical of an ADHD diagnosis for a woman who wasn’t hyperactive back then. But I was struggling so much through all of it. And hating myself, making poor choices, etc. I finally got help years later but only after a lot of damage was done.” — Eileen S. 20. “It could always be worse.” “I know this. And I always focus on this and it makes me feel so horrible and guilty. I know things can be worse. Things can always be worse, but pain and suffering is relative.” — Rowan K. If you’re feeling unsupported in therapy, check out these seven signs it might be time to find a new therapist. While finding the right therapist sometimes takes work, it’s worth it.

Diagnosing Seizures Related to Functional Neurological Disorder

Since I had my brain tumor removed in 2011, I have been on anti-epileptic medication as a prophylactic measure. I had several small tremor incidents, so the dose was increased over time. Over the last five years I have been told I am epileptic and then not epileptic. In October 2015, I attended four very cognitively challenging conferences and a fun run in the space of a week. As I live far enough out of city to make travel time to these events difficult at best, I booked a hotel in the area. I knew I needed to manage my sleep well or I would not be well. I made it through to the end of the fourth conference without incident despite late nights, early mornings and information overload. I went to the Fun Run on the Saturday morning and was not feeling myself. As the day went on I felt less and less able to cope and was changing my plans to get home. First I decided I would be OK and catch public transport, but as time went on I felt I would not be able to manage that and should probably catch a cab. By the end of the day I didn’t think I would be able to manage that either. By the end of the event I had to go and lay down on the grass and an ambulance was called. I felt rather silly that there was so much fuss and an ambulance involved. I was just feeling “wrong;” I didn’t feel like I was ill enough to warrant all of this. We made it into the emergency bay and I was wheeled in to wait for triage and be allocated a bed. Before any of that had a chance to happen, the paramedic at the end of the stretcher I was on called out “She is seizing!” What happened next was all a bit of a blur. I went into a full tonic clonic seizure and was rushed into acute care, then straight into resuscitation. There were lots of lights and people. Someone was calling my name and asking me to open my eyes. I was being hooked up to more monitors, IV lines were being put in, my clothes were off and a gown was on. From what I was told later, I was going to be intubated. Over the course of the next few hours while I was in acute care, my brother came up to see me. I thought I had one seizure in the cubicle while he was there, but apparently it was closer to five and I was whizzed off to resuscitation a few times. By the time I was moved up to the ward I had a total of 12 seizures. This had never happened to me before. I was exhausted and slept 10 hours straight in the hospital, through hourly observations, completely exhausted. I was kept in hospital for a few days and then sent home with a request form for an MRI and a follow-up with my doctor. The CT scan they did in emergency was clear of anything nasty. In March 2016 I was at university and had just finished my last lecture for the day. Before I made it much further than the hall I started having a seizure. A friend and my lecturer stayed with me while an ambulance was called. By the time the ambulance arrived to take me to the hospital I had six seizures in total in the hall. I had another in the ambulance and seven more in emergency. I spent some time in resuscitation and was taken up to the ward when I was stable. The following morning I had four more seizures. Two of those resulted in codes. In February of 2019 I went in for a minor day surgery and ended up in ICU. I was in recovery after my surgery and started seizing. I was admitted to ICU where I stayed and was monitored for two days while the episodes continued. An EEG was done while I was in ICU and I was moved to the neurology ward. At the end of the week I was released without a clear diagnosis and my own neurologist having a contradictory opinion to the neurologist who had admitted me to the ward. A week later I was having an iron infusion in my doctor’s office and had more of these episodes. An ambulance was called and I was taken back to the same hospital I had been in the week before. I spent a few days in hospital again with more testing going on. Thursday night I coded twice and Friday night I coded again. I was released to go home on Saturday as I had an appointment with my neurologist on the following Monday. That Monday, my neurologist gave a diagnosis. I do not have epilepsy. I do have seizures though. They are called dissociative seizures. I was thrilled to finally know what was really going on! When I got home I went through all the literature that had been given to me and visited the website they suggested. As I understand it, a non-epileptic seizure attack or dissociative seizures as they are also known, are part of a broader group called functional neurological disorders or conversion disorder. These episodes can be described somewhat like a panic attack or a migraine. It is a dysfunction of the nervous system. Nothing that shows up on scans or blood work shows that you have them, but they are very real and have a significant impact. Dissociative seizures can be medically or psychologically based, or both. In my case they are brought on by exhaustion and stress. Now that I have the diagnosis and am armed with information about what my seizures they are and how they work, I can move on with my life with strategies in place to manage them. As a team, my neurologist, doctor, physiotherapist, psychologist and I are finding ways to manage stress and make sure that I am getting enough quality rest. With these plans and tools in place, I can hopefully get through without having another episode. If it does happen I will know what it is and how to deal with it. Don’t be afraid of diagnosis. Try not to feel angry or upset if there is or seems to be a psychological aspect to your diagnosis. It doesn’t mean you are “crazy,” and it doesn’t mean you are “faking it.” It is what it is, and knowing means you can work with your team to get it under control, so you can get back on track and moving forward.

Diagnosing Seizures Related to Functional Neurological Disorder

Since I had my brain tumor removed in 2011, I have been on anti-epileptic medication as a prophylactic measure. I had several small tremor incidents, so the dose was increased over time. Over the last five years I have been told I am epileptic and then not epileptic. In October 2015, I attended four very cognitively challenging conferences and a fun run in the space of a week. As I live far enough out of city to make travel time to these events difficult at best, I booked a hotel in the area. I knew I needed to manage my sleep well or I would not be well. I made it through to the end of the fourth conference without incident despite late nights, early mornings and information overload. I went to the Fun Run on the Saturday morning and was not feeling myself. As the day went on I felt less and less able to cope and was changing my plans to get home. First I decided I would be OK and catch public transport, but as time went on I felt I would not be able to manage that and should probably catch a cab. By the end of the day I didn’t think I would be able to manage that either. By the end of the event I had to go and lay down on the grass and an ambulance was called. I felt rather silly that there was so much fuss and an ambulance involved. I was just feeling “wrong;” I didn’t feel like I was ill enough to warrant all of this. We made it into the emergency bay and I was wheeled in to wait for triage and be allocated a bed. Before any of that had a chance to happen, the paramedic at the end of the stretcher I was on called out “She is seizing!” What happened next was all a bit of a blur. I went into a full tonic clonic seizure and was rushed into acute care, then straight into resuscitation. There were lots of lights and people. Someone was calling my name and asking me to open my eyes. I was being hooked up to more monitors, IV lines were being put in, my clothes were off and a gown was on. From what I was told later, I was going to be intubated. Over the course of the next few hours while I was in acute care, my brother came up to see me. I thought I had one seizure in the cubicle while he was there, but apparently it was closer to five and I was whizzed off to resuscitation a few times. By the time I was moved up to the ward I had a total of 12 seizures. This had never happened to me before. I was exhausted and slept 10 hours straight in the hospital, through hourly observations, completely exhausted. I was kept in hospital for a few days and then sent home with a request form for an MRI and a follow-up with my doctor. The CT scan they did in emergency was clear of anything nasty. In March 2016 I was at university and had just finished my last lecture for the day. Before I made it much further than the hall I started having a seizure. A friend and my lecturer stayed with me while an ambulance was called. By the time the ambulance arrived to take me to the hospital I had six seizures in total in the hall. I had another in the ambulance and seven more in emergency. I spent some time in resuscitation and was taken up to the ward when I was stable. The following morning I had four more seizures. Two of those resulted in codes. In February of 2019 I went in for a minor day surgery and ended up in ICU. I was in recovery after my surgery and started seizing. I was admitted to ICU where I stayed and was monitored for two days while the episodes continued. An EEG was done while I was in ICU and I was moved to the neurology ward. At the end of the week I was released without a clear diagnosis and my own neurologist having a contradictory opinion to the neurologist who had admitted me to the ward. A week later I was having an iron infusion in my doctor’s office and had more of these episodes. An ambulance was called and I was taken back to the same hospital I had been in the week before. I spent a few days in hospital again with more testing going on. Thursday night I coded twice and Friday night I coded again. I was released to go home on Saturday as I had an appointment with my neurologist on the following Monday. That Monday, my neurologist gave a diagnosis. I do not have epilepsy. I do have seizures though. They are called dissociative seizures. I was thrilled to finally know what was really going on! When I got home I went through all the literature that had been given to me and visited the website they suggested. As I understand it, a non-epileptic seizure attack or dissociative seizures as they are also known, are part of a broader group called functional neurological disorders or conversion disorder. These episodes can be described somewhat like a panic attack or a migraine. It is a dysfunction of the nervous system. Nothing that shows up on scans or blood work shows that you have them, but they are very real and have a significant impact. Dissociative seizures can be medically or psychologically based, or both. In my case they are brought on by exhaustion and stress. Now that I have the diagnosis and am armed with information about what my seizures they are and how they work, I can move on with my life with strategies in place to manage them. As a team, my neurologist, doctor, physiotherapist, psychologist and I are finding ways to manage stress and make sure that I am getting enough quality rest. With these plans and tools in place, I can hopefully get through without having another episode. If it does happen I will know what it is and how to deal with it. Don’t be afraid of diagnosis. Try not to feel angry or upset if there is or seems to be a psychological aspect to your diagnosis. It doesn’t mean you are “crazy,” and it doesn’t mean you are “faking it.” It is what it is, and knowing means you can work with your team to get it under control, so you can get back on track and moving forward.

The Importance of University Disability Services

Following my brain surgery for a rare atypical colloid cyst (brain tumor), I had some memory deficits. I was not sure if my “pre-surgery” skills would still be available to me, so I decided to do some kind of study to upgrade my skills to potentially secure a job. To test myself and see if I would be able to remember anything long enough to be examined on it at 12 months post-op, I enrolled in a Dual Certificate III in Business and Business Administration at my local TAFE. I was told I should make contact with Disability Services so I could get assistance should I require it. I was horrified. The word “disability” grated on me. I did not think of myself as disabled. I bit the bullet and signed in. I successfully completed my Certificate III without assistance and it gave me a real sense of achievement. Disabled? Not I! I then decided to try a Certificate IV Adult Tertiary Preparation. It is a gateway program into university. My idea was that if I could make it to university and beyond, I would like to get into brain tumor research. I signed on with Disability Services as I had done the previous year. It still grated. I did not like being classified as disabled. However, I needed help. I asked for it and I was given it. I felt like I was somehow cheating because other people in my course were not receiving the same support. It took a little while, but I eventually got it through my head that it was OK to ask for the help I needed and that it was leveling the playing field. The things for which I was receiving help were things other people had no problem with. Rather than “cheating,” I was giving myself a chance to operate at the same level as everyone else. I managed to pass all 10 subjects with honors and was offered a spot in a Bachelor of Clinical Science program. I was thrilled to receive the offer. My friends, family and lecturers were all very proud of me for putting in the effort, pushing through the road blocks and making it through. I started the Bachelor of Clinical Science and quickly found the four-subject course load was too much. I dropped back to three and things went a lot more smoothly. I had great support from disability services at university. I had overcome my fear of the label “disabled” and looked at it more as “enabled.” By using the services available, I was “enabling” myself to perform on a more level playing field. After a period of illness, I had to take some time out. I have returned to studying, but transferred over to Bachelor of Psychological Science. I may not be able to help find a cure, but I can work towards helping others living with a brain tumor and their families on this brain tumor journey. I also want to help support clinicians in the field through this roller coaster. By enabling myself through being in contact with disability services at my university, I am now about to complete my BPsySc and am applying for post graduate studies. I’m not sorry.

The Importance of University Disability Services

Following my brain surgery for a rare atypical colloid cyst (brain tumor), I had some memory deficits. I was not sure if my “pre-surgery” skills would still be available to me, so I decided to do some kind of study to upgrade my skills to potentially secure a job. To test myself and see if I would be able to remember anything long enough to be examined on it at 12 months post-op, I enrolled in a Dual Certificate III in Business and Business Administration at my local TAFE. I was told I should make contact with Disability Services so I could get assistance should I require it. I was horrified. The word “disability” grated on me. I did not think of myself as disabled. I bit the bullet and signed in. I successfully completed my Certificate III without assistance and it gave me a real sense of achievement. Disabled? Not I! I then decided to try a Certificate IV Adult Tertiary Preparation. It is a gateway program into university. My idea was that if I could make it to university and beyond, I would like to get into brain tumor research. I signed on with Disability Services as I had done the previous year. It still grated. I did not like being classified as disabled. However, I needed help. I asked for it and I was given it. I felt like I was somehow cheating because other people in my course were not receiving the same support. It took a little while, but I eventually got it through my head that it was OK to ask for the help I needed and that it was leveling the playing field. The things for which I was receiving help were things other people had no problem with. Rather than “cheating,” I was giving myself a chance to operate at the same level as everyone else. I managed to pass all 10 subjects with honors and was offered a spot in a Bachelor of Clinical Science program. I was thrilled to receive the offer. My friends, family and lecturers were all very proud of me for putting in the effort, pushing through the road blocks and making it through. I started the Bachelor of Clinical Science and quickly found the four-subject course load was too much. I dropped back to three and things went a lot more smoothly. I had great support from disability services at university. I had overcome my fear of the label “disabled” and looked at it more as “enabled.” By using the services available, I was “enabling” myself to perform on a more level playing field. After a period of illness, I had to take some time out. I have returned to studying, but transferred over to Bachelor of Psychological Science. I may not be able to help find a cure, but I can work towards helping others living with a brain tumor and their families on this brain tumor journey. I also want to help support clinicians in the field through this roller coaster. By enabling myself through being in contact with disability services at my university, I am now about to complete my BPsySc and am applying for post graduate studies. I’m not sorry.

Community Voices

I Travelled 1278 Miles to Have Surgery for My #ColloidCyst

After 8 years of trying to find a neurosurgeon in my state willing to do the surgery to remove the #ColloidCyst that was causing  #Hydrocephalus, a friend who was an anaesthetist suggested I travel interstate to a world renowned Neurosurgeon who was the last resort for many people living with brain tumour. I emailed him and after being driven for few trips to see him, finally made the final trip for my surgery. Sometimes you have to make long journeys to get the results you need. If I hadn't made those long car trips I would have died in 2011.

Community Voices

Accidental Findings

When I was 5 years old I was hit by a car. I lost all the skin on my back and was taken to hospital. My mother had to fight with the doctors about taking x-rays so they x-rayed my head. It was the 70's. 15 years later I was pregnant with my first son and experiencing what I thought was severe back pain. My doctor at the time said 'You are pregnant, back pain comes with that'. After giving birth, I lost feeling and movement in my legs and was sent off for an x-ray. It turned out that for 15 years the muscle tone in my back had been keeping the two pieces of my fractured spine in place but not close enough to each other to heal. If I hadn't ever been pregnant, I may never have known I had a fractured spine.

2 people are talking about this
Community Voices

Accidental Findings

When I was 5 years old I was hit by a car. I lost all the skin on my back and was taken to hospital. My mother had to fight with the doctors about taking x-rays so they x-rayed my head. It was the 70's. 15 years later I was pregnant with my first son and experiencing what I thought was severe back pain. My doctor at the time said 'You are pregnant, back pain comes with that'. After giving birth, I lost feeling and movement in my legs and was sent off for an x-ray. It turned out that for 15 years the muscle tone in my back had been keeping the two pieces of my fractured spine in place but not close enough to each other to heal. If I hadn't ever been pregnant, I may never have known I had a fractured spine.

2 people are talking about this