Emily Owen

My name is Emily Owen.I live in the U.K and I have NF2. I was diagnosed at the age of sixteen with no family history. I am now deaf and have limited mobility.

What do you wish people knew about NF2?

I would like people to have heard of it. It may seem a small thing, but just to have ‘NF2’ being spoken and recognized would be a great thing. Many of my friends had never heard of NF2 until my diagnosis (I hadn’t either). Now, if they send a text which includes ‘NF2’, I feel really pleased!

Tell us a unique fact about NF2.

NF2 affects everyone differently. So it is unique to every­one. That is a fact I wish I had known from the outset, so I didn’t draw comparisons. What does or doesn’t happen to someone with NF2 may or may not happen to me.

You have faced many obstacles. What has been the hardest part of your NF journey?

Learning to accept that there are things I can no longer do. Acceptance makes life easier, though.

"God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference."

~ Reinhold Niebuhr

How did you move past the diagnosis to find joy again and discover your rainbows?

I learned to let go of things I’d had before my diagno­sis. For me, that meant changing my life plans, as they became unrealistic. For others, they can achieve their life plans despite their diagnosis. As I said before, NF2 is different for everyone.

I made finding rainbows a deliberate choice. No mat­ter how hard life gets, there is always something good to find.

What do you do on the days you feel discouraged?

There’s a song in the musical ‘Annie’, with the lyrics, “The sun’ll come out tomorrow”. I remind myself when I do have bad days, every day is not a bad day. And maybe tomorrow won’t be one.

What is one wisdom you would share with parents whose child just received the NF2 diagnosis?

Ask questions. No question is ever too silly to ask.

I think of it like putting petrol in a car. You may not need to make a car journey right then but, if there comes a time when you do, it helps to have petrol in the tank.

You may not need the information you gather, but you’ve got it just in case. Prepare for as much as you can, but always hope for the best: that’s my motto.

What tips would you offer someone who is thinking about writing their NF story?

Be absolutely sure that what you include in the book is something you are happy to have out there for anyone to see. Know why you are writing it. Then, start writing and see where it takes you.

Have you ever regretted exposing yourself or your diagnosis to the world?

Regret would not be the word. It did take me many years to be able to write my story, though. I am fre­quently surprised when people I’ve never met before know things about me! I forget that people read my book, to be honest. I was very clear in what I was will­ing to include in the book.

What made you want to write Still Emily?

I didn’t want to write it. I resisted for 20 years. In the end, I said “yes”. I wanted to show that there can be hope in dark times (not just NF2 dark times). My story is not a ‘happily ever after’ story. I still have NF2. Life is still difficult. I still have dark times. But, if we can learn to glimpse hope and joy and rainbows in the darkness, the darkness is not so dark.

What keeps you up on down days?

A cup of tea. (Though to be fair, a cup of tea is rather essential on any day!) Flowers. A text from a friend. Reading a book. These are all moments of ‘up’ in the ‘down’.

Also accepting that down times will happen – NF2 can be pretty horrid, after all.

And I remember that God is with me; nothing is so bad that He walks out and leaves me to it alone.

What has been some of the best medication you have tried? Have you ever done a clinical trial?

I take Gabapentin for nerve pain. I wouldn’t like to be without that medication. It really helps me, though it took a while to get the correct dosage. For me, too much of it makes me even dozier than usual!

I have done a clinical trial. Unfortunately it adversely affected me, so I had to stop before I completed it. I know other people who do trials successfully, and I am very grateful for people who do them. I often think that the treatments I receive probably came about because someone did a clinical trial. Having said that, for me it is important not to feel ‘guilted’ into doing a trial. They are not for everyone.

Check out Emily’s book on Amazon or order from your local bookseller.

What is the best part of having NF2? The worst?

The worst? Not being able to hear. And never knowing whether my scans will provide good news or bad news.

Best? Seeing how nice people are. I can honestly say I have never had anyone unwilling to help me.

Are there any current medical advancements you wish you could have chosen?

I think, had there been a treatment that could save my hearing, despite other side-effects – and knowing what I know now about hearing loss – I’d have given it a go.

Has your facial paralysis improved with therapy?

My facial paralysis improved with surgery, though I know people who have had fantastic results from therapy. My surgery was a hypoglossal nerve graft, which means they grafted a nerve from my tongue into my facial nerve. My paralysed side still does not achieve symmetry when I smile but, at rest, it is now fairly symmetrical.

How long did it take you to learn American Sign Language?

Well, I learned BSL (British Sign Language), but I guess the learning process is similar! It took me a long time, and I am still by no means fluent. When I was learning, I always worried that I was not getting it ‘right’. That my hand shapes were wrong, my syntax was wrong, everything was wrong. Then one day I realised that it doesn’t need to be perfect. I just need to communi­cate. After that I found it easier to go with the flow a bit more. I’m sure I still make lots of mistakes but if I can be understood and understand others, that is more than enough for me.

I would encourage people who are diagnosed with NF2 to learn to sign; it’s a good skill, whether or not hearing loss eventually occurs.

What advice would you give to someone with NF1 or 2 who is trying to decide if they should have children?

I don’t feel qualified to give someone advice on that. Each person must make their own decision. If someone were trying to decide, I might remind them that there are people available to help talk things through. I’d also be happy to talk with them myself. But the decision is for them to make.

What's next for you?

I hope to carry on writing and speaking. But NF2 may decide otherwise! At the moment my NF2 is behaving quite well, but as my surgeon put it, “that doesn’t mean I should be complacent.”

One thing that is next for me is to continue not being defined by NF2. NF2 is a part of me but it is not all of me. As I wrote in my book, Still Emily, ‘NF2 affects me, but it doesn’t define me – unless I let it.’

NF2 is a difficult minefield to tread, and there are often no clear-cut answers. I hope and pray that as you nav­igate the minefield, you will find rainbows to help you along the way.

You can reach Emily at emily@emily-owen.co.uk