My Meningioma Left Me Blind

Jurgen D Donaldson, 35, from Balham, Southwest London lost his eyesight after having brain surgery to remove a Meningioma. 

Prior to Jurgen’s diagnosis, he was noticing some trouble with his vision. He had no idea that within a few months he would be blind. He has not let his sight loss stop him from helping others who may find themselves in the same situation.

Here is his inspiring story

When were you diagnosed with your Meningioma?

In May 2019 I started noticing some light white fuzz in my vision, I started suffering from an irregular pain behind the ear, as well as nausea on a regular basis.

My symptoms deteriorated around the end of July. Then, almost overnight I lost the majority of my eyesight. It was in August I was diagnosed with a Meningioma that was sitting on the front of my frontal lobe.

I had brain surgery at the end of September to remove the tumour. The surgery lasted nine and a half hours.

How are you doing now health-wise?

Seven months later, I have recovered from the brain surgery, sadly my eyesight has not come back, but I know I was lucky and that I suffered no further neurological damage from the surgery itself.

How has your life changed since you lost your sight?

Losing my eyesight has completely changed the way in which I “look” at the world, for want of a better phrase. I have had to relearn how to cook, which is always been a massive passion of mine.

My secret, a George Foreman grill, much safer than trying to use the hob, and actually you get pretty good results from it.

I can no longer leave my apartment on my own, especially as we are in Coronavirus lockdown, I am now in effect housebound.

The big game for me right now It’s finding ways in which I will be able to increase my level of independence once this is over.

What things have helped you dealing with sight loss?

Technology has been fundamental to my sight-loss. The invention text-to-voice controls on our mobiles, tablets, computers mean that generally speaking, I am able to do everything a sighted person can do.

On a day-to-day basis, apps like Be My Eyes, help me to do everyday tasks like using the microwave or turning on the washing machine, the app connects me to a volunteer who is sighted, and through my phone there able to see what I’m looking at helping me to complete all sorts of things.

Over and above that, reaching out to the visually impaired community, connecting with other people online who have gone through a similar experience has emotionally and absolutely critical for helping me get through this experience.

You are reading my story because I was able to email Aunty M Brain Tumours via Twitter.

Be My Eyes – Bringing Sight to Blind and Low Vision People

What is the toughest challenge you face?

The toughest challenge I have personally faced so far is peoples preconceptions about what I can and cannot do.  It has been difficult when some people assume that I am not capable because I can’t see.

Yes, it is hard not being able to see, it’s difficult and it’s trying on your patience on a daily basis. BUT! I  am absolutely capable, I just need some assistance at times.

Any advice for people or loved ones that get daunting diagnoses?

Then go to war with it, you have to do everything you can to battle your enemy, which is the disease you are now facing.

To the friends and family, be there and be normal. When we want to talk about it we will when we want to do things that we would always do, Help us to do that.

This is trickier right now, but ultimately the point stands. Treat us like you always would have, make fun of us as you always would have, love like you always would have.

This is actually the second daunting diagnosis I faced in my life, having had cancer when I was 20. My advice, to anyone getting this kind of diagnosis, find a path forward, learn everything you can about your condition, the available treatments and what has to happen next.

What cancer were you diagnosed with?

I was diagnosed with three lymphatic tumours, all at Stage three, I was put on an aggressive regime of chemotherapy.

I went from being a very fit and healthy young man to being incredibly weak and lost a lot of weight. I lost all of my hair, I will always remember I was with my girlfriend the morning I went to run my hands through my hair, to find clumps of hair stuck in my hand.

So, with my girlfriend’s help, we then went and got my razor and proceeded to shave off what was left, leaving me with an attractive Lex Luther appearance.

What motivates you daily?

I am motivated by a desire to keep moving forward. My love for my family and my friends. My passion for the things that I love to do, whether it’s cooking for friends and family, or enjoying my new life itself.

I am only 35, and I have been through a lot, for all of the adversity I have faced it has just made me all the more determined to enjoy every day, every week and every month that I have.

Who is your personal hero or heroes?

My hero is my mum. Everything she has been through with me, and everything she’s been through before that. She always stays incredibly strong, is always there when it really counts, normally with a glass of wine. Ultimately though, everything that I am, it’s because of her.

My strength, my power, my desire to keep moving, It comes from her.

What is a great gift for a brain tumour survivor?

The best gift you can give someone recovering from a brain tumour, it is whatever you know is going to make them laugh. Battling a brain tumour or anything else like this, it’s an incredibly serious time. At times far too serious, and what they really need is to laugh and to be happy.

Tell me something about yourself that people probably didn’t know?

I have a tattoo on my upper right arm, that says it all.

Jurgen D Donaldson was diagnosed cancer lymphatic tumours - he now has a tattoo to celebrate his surviorship

Conclusion: Jurgen you are the exact example of a ‘survivor’. Not only have you survived cancer you have battled a meningioma and you are overcoming a life-changing disability. Thank you for talking about the things a person may also find beneficial. I will definitely have a look at the app Be My Eye

Follow Jurgen on Twitter

Jurgen D Donaldson, 35, from Balham, Southwest London lost his eyesight after having brain surgery to remove a Meningioma. 

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