It's been several years since I last post the following;
As a teen I was diagnosed with a malignant (cancerous) brain tumor (brainstem glioma) that left me in a wheelchair along with numerous other problems including vision, speech, and paralysis. After months in the hospital and lots of rehab I finished high school, I went to college, and I got a job. Eventually developed anxiety and soon after that depression set in and I lost my job. I now live at home with my mom and stepdad, I'm on social security disability, I have no friends with little support from my family and my depression has gone from chronic to severe. I feel like a complete failure with no direction in life and a burden to my family. The only thing that gives me a sense of purpose or joy anymore is taking care of my 4 dogs.
Four years later, I'm now 45 years old and the only thing that has changed is that I have one less dog having lost my best friend ever due to enlarged heart. Another one of my dogs started experiencing seizures. My mom now has kidney cancer and I've been told other family members don't know how to get through to me. It's not that I'm mad at any one quite the opposite, I try my best to put on a happy face in around others even though I'm not truly happy myself. Sometimes I wonder if I'll ever find happiness or a normal life. I'm going keep trying but I'm also scared to be honest.
Written by
formydogs
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I'm so sorry to hear the struggles you've been through. I can't imagine what it must be like for you. My first suggestion would be, if possible, for you to come to one of the Success conferences if you haven't already. They are a great place to meet people and create some friends, or at the very least talk to some of the car professionals who may be able to help you.
You could also join the peer mentor system if you would like to talk to someone about what you're going through. I've been trained as a peer mentor myself, and as I'm going through some things myself am also a mentee, and I can tell you it makes the world of difference just talking about it too someone who will listen. Also they can get you in contact with other people from Success.
Finally, I am always happy to talk her if that's easier 😊
Thanks for the kind words and advice, I really needed some positivity. I looked at the website for Success it sounds AMAZING, unfortunately I'm in US. I also looked at your profile and see you had own struggles, yet you seem so positive no. How were able to do that?
I'm not going to lie - it can be hard sometimes. Every day is different and some are easier than others. I try to focus on the positives of each day, no matter how small they may be. Also I have a strong family network which really helped me when I was ill. I agree with jedistar that having a hobby helps - something that makes you happy by simply doing it. It can also be mindful in acting as a distraction. I have a passion for cross stitch (sewing) which requires focus and attention so it distracts me from my thoughts.
Even if you can't come to a conference I still recommend getting in contact with success - they're quite into zoom calls these days so you could still create some connections and create a network. Creating friends with people from success has allowed me to learn and understand more about what I went through as a young child and it's made the world of difference in helping me grow and develop into an adult.
I was diagnosed with a brain tumor aged 5 (1990). The Dr's were AMAZED that I pulled through, but have been left with very similar problems (please read my profile). I am on anti-depressants and live with my parents and brother in North Wales and have always felt more mature and different to my piers. I haven't had friends my own age since I was 11 ( apart from my wonderful P.A's) but gained back my confidence through many years of volunteering. I have met life-changing, wonderful people through this and have complete many online courses, a degree from Liverpool, and am about to start one in illustration. These all do wonders for my confidence!
However, I still have v bad depression, feel that I am a burden on my family, and have various levels of suicidal thoughts, especially after a seizure.
I do tend to put a brave/ happy face on it for my family, but sometimes it really gets to me! Why me? etc.
I want you to know your not alone and that distracting yourself is the best way! Get a hobby, something that your good at! Experiment! Something you've never done before: sport clubs, work with kids, craft, write a book for teens about your experiences ( Theres not many of them about here for kids) ........
Maybe at an animal shelter of nature reserve? Your dogs are doing a wonderful job! It's been proven stroking an animal, riding etc, reduces stress etc. Imagine the feeling of watching a n abused animal go off to a good home, visiting a kid in hospital with you dogs ( I know there's a charity for that in the Uk anyway) helping to train a guide dog,,..... The list is endless!
Just a suggestion. Please don't give up and don't become a recluse! It will really help your confidence! Also, look up online for as many groups/charities as possible to meet people ( don't know if this is the only one) who have regular meet ups. Here I'm a member of: Epilepsy action, Head way and Hafal. I send shoeboxes to kids in needy countries every Christmas and do sponsored walks, fundraising etc They send you feedback and photos of the kids opening their boxes and my self esteem goes ski- high!
Sorry to rattle on, but I really want to help and know how you feel.
Firstly I would like to say thank you for reaching out. It doesn't matter what part of the world you are in, we will do our best to support you. The time difference might be a bit tricky for you but if you wanted to join our Survivor Group on zoom that would be wonderful and the Success Survivors are amazing and they would be more than happy to share with you.
Do send an email to info@successcharity.org.uk and we can look at the time difference to see if we can meet up on zoom at a reasonable time for all of us.
Just by reaching out - show how brave you are, as many just suffer in silence and we want all Childhood Brain Tumour Survivors to have a voice.
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