Emma, 39, Cerebral Palsy & Epilepsy

Description: I’m excited to announce that I had the opportunity to meet Emma from London, England! Emma is a strong woman and breast cancer survivor who spoke about her challenges with cerebral palsy and epilepsy. Read Emma’s powerful story below:

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Adam: Hello, Emma, I’m excited for the opportunity to sit with you as you’re my very first interview with someone outside of North America. How about we start with a little introduction about who you are?

Emma: Hi Adam! My pleasure, so my name is Emma, I’m 39 and live in London, UK. I am currently not working due to having had Breast Cancer, although in remission. Since I’m not working, I try to keep myself busy as much as my body allows me. In my spare time, I read fiction books, do cross stitch and am a fan of American football. I also like watching murder mysteries on TV and listen to a wide range of music.

Adam: I’m sorry to hear of you were diagnosed with breast cancer, but congratulations on being in remission. So, can you speak a bit about your disabilities and how you were diagnosed with them? However, please only go into as much detail as you feel comfortable talking about them.

Emma: My two disabilities are cerebral palsy and epilepsy, and I’ll speak about each separately:

Cerebral palsy (CP) is a condition where the person is brain damaged, so it affects movement and motor skills. I’m known in the medical field as being hemiplegic, which means my ‘disability’ is one half of my body. I am very lucky, I think, as I can do most things, not seen as disabled at all, whilst others are in wheelchairs etc. At birth, my umbilical cord was wrapped around my neck which cut circulation off to my brain. I wasn’t diagnosed with CP until I was 6 months old when my parents noticed something different and took me to the doctors. It affects my left side of my body, mainly my left hand. I don’t have much feeling in that hand so doing things are very awkward and end up doing things very differently to others without a disability. My eyes are basically my left hand, so if I cannot see something, I probably cannot feel it. I can feel hot and cold water and some textiles, but then I’m sceptical as, again, my eyes are being used.

From a young age, I didn’t really think any differently of myself and thought everyone was like me. I think at about 6/7 years of age, I realised I was different, so I started to teach myself how to do things my way, so I could be like everyone else…From getting dressed to picking up stuff to even, say, opening a tin can is hard for me. People who know me – mainly my family – are protective over me, and a lot of the time I was told, “give it to me, I’ll do it,” or “be careful.” It’s nice but sometimes annoying, because I want to be able to do stuff myself. I am very independent and don’t let it get in my way. I tend not to tell people I have CP as on appearance, you don’t notice any difference. I also don’t like feeling like I’m a victim, such as when people say, “Aww” and/or alienate me.

Adam: I’ve had conversations with other people about what you’re talking about: the difference between visible versus invisible disabilities. The term disability can be limiting in and of itself…people sometimes tend to pity disabled people for what they cannot do instead of empowering you and noticing all the things that you can do! What about your experience with epilepsy?

Emma: My epilepsy started at the age of 19, where I would have blackouts and come to not know how I got to where I was or even what happened—very scary as you can imagine!

Adam: Yes, that is really scary!

Emma: When I went to the doctors, they prescribed me a drug called Carbamazepine, which is used predominantly for epileptics. I took them and started to feel very drowsy—almost zombie-like—but still went about my daily life studying and going out with friends etc. By 21, I was slowly weaned off the drug and back to my ‘normal’ self, still in the back of my mind, “what if it happens again?”

Fast forward to being 32, I started having fits regularly and again I feared for myself. I would feel lightheaded, and then see what looked like all I can describe as a TV that hasn’t been tuned in: Fuzziness. I would wake up thirsty and want a large glass of water, and for first few minutes sometimes not remember where I am. It was at 32 whilst seeing the neurologist that I was diagnosed properly as having epilepsy and was given a drug called Lamotrigine, which is for epilepsy, but also treats bipolar disorder too. Once again, I took to the drug in a zombie-like state and altered my life to see if the drug would work. Thankfully it did and still does—I haven’t had a fit since 2015, so I’m winning! I have had many injuries from having epilepsy, but thankfully never anything serious that I needed emergency treatment for. As with CP, I tend not to tell people about my epilepsy as I am alienated and speculated about.

Adam: Congratulations on not having had an episode since 2015! Can you go into detail about the challenges you’ve had when dealing with CP and epilepsy disability and what sorts of strategies have you used to overcome those challenges?

Emma: With the CP, my strategy was learning how to do things differently, because of the way I am, which is very frustrating. For example, I can’t pick up two cups of coffee at the same time with one in each hand because of my problems with my left hand, so I’d probably burn myself. Instead, I would either use a tray and be careful, or just take two trips back and forth. I tend to do a lot of one-handed things, but people who know me usually forget I have CP I’m seen as abled, not disabled.

With the epilepsy, I would say my challenge was worrying that I might have a fit while working. I have had challenges when I told some of my employers about it in the past, only to be called into the manager’s office and told either they no longer need me or some lame excuse, knowing it was the epilepsy. Their reason was always so their backs where covered so there would be no tribunal if I did want to go down that route.

Adam: That’s tough because obviously you want to be candid with your employers, but when you are, you’re discriminated against. I’m really sorry that you’ve had these experiences in life. It’s just terrible!

Emma: Yeah…now, my strategy is that I don’t say anything to them.

Adam: Have you found that CP and epilepsy have common misconceptions? If you had to clear the air, what would you want others to know?

Emma: For CP, people think that we’re all in wheelchairs, or cannot walk or talk. When people hear that I’m independent, they usually have a frightening tone and say, “You’re ok though, right,” as if they are shocked because I look ‘normal’. Honestly, there are several misconceptions of CP, for example, that CP is contagious…I mean come on, really? Seriously, I’ve heard that before. As I already said earlier, it’s wrong for people to alienate someone when they hear about their disability. You cannot catch a disability like you can catch a cold. When people assume it’s an illness, they usually ask me, “what medications do you take,” or “can it be cured?” …Unfortunately, no, it cannot be ‘cured’ and no, I don’t take anything for it because medication won’t do anything – well painkillers if I experience pain. Just lots of physiotherapy and being careful how you do things, which are both dependant on the level of CP you have.

Since CP is caused by brain damage, people think all of our brain is damaged. Whilst it is possible for someone to have impaired intelligence, this is often not the case. Although CP is not a condition that changes, the effects it has on my body are not always good. I can use between 3 to 5 times more energy than that of a non-disabled person meaning I am often seen as weak. Wounds etc. also take ages to heal, so a 6-week recovery of an injury for me would probably take 10 weeks just because I have CP. Putting that together with the other ailments I have, it probably takes double that time…I believe I must be a very strong woman.

Adam: Considering the challenges at work, your personal challenges with managing your disabilities, and being a breast cancer survivor, I would say with complete certainty that you are a very strong woman! And what about the misconceptions of epilepsy?

Emma: Thank you, Adam! With epilepsy, seizures are not always as you see on TV, with the big shaking continuously, and not everyone is unconscious whilst having a seizure. There are many types of seizures, which all are completely different. “Daydreaming” is one type, where the person looks like they are daydreaming; this has actually happened to me before.

Another misconception is that you should hold someone down whilst having a seizure. This isn’t true at all! Many people think, “oh they are having a fit/seizure, so let me go hold them,” thinking they are comforting them. In reality, the person having the seizure needs to stay calm, make their surrounding safe, time the seizure/fit, make sure there is something under their head like a pillow or jacket – dependant on the location, naturally. Touching them should always be to put them into the recovery position after the seizure has stopped and stay with them until they wake up. Oh, and most importantly, never put anything in their mouth and watch not to let them swallow their tongue! I think these steps should be taught in schools and workplaces, so that people are educated about it.

Adam: If someone younger than yourself were here right now and had the same disabilities as yourself, what advice would you offer to them?

Emma: “Do not let anyone tell you cannot do anything just because you are ‘disabled’.” I would also say to them, “there are a lot of charities that can help you and support you. Things are hard and confusing and your way of doing things are ok.” For example, you might not be able to talk, but it’s okay that you communicate with a word chart…or you might not be able to walk, but it’s okay that you use a wheelchair. “You can do everything, and you really do matter.”

Adam: Emma, thank you for sharing your story, for opening up about your life and personal experiences with your disabilities! Is there anything you want to say before you go?

Emma: Thank you, Adam, for inviting me to be interviewed for your blog and I wish you every success with it!

Adam: Awesome, thank you so much for your time!

Emma: Thank you, Adam. All the best!

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