Independence and driving - the story of me and my bike.

[ultramarathonwoman]

Currently suffering from infrequent grand mal attacks 7 years after temporal lobe epilepsy surgery, my past with Epilepsy has been less than simple.

At the age of 4 I developed scarring on the right side of my brain which developed into convulsive fits at the age of 8. After taking approximately 3 or 4 grand mal temporal lobe epilepsy attacks and 50 - 60 petit mal temporal lobe epilepsy attacks a week and having to deal with the side effects of medication for 6 years, in 2001 I underwent Neurosurgery.

For 4 years the surgery wiped out any signs of my condition and I qualified as a Police Constable at the age of 18 and a half in Scotland. After setting myself up with a good salary, a mortgage and a car I had another fit completely out of the blue. Immediately I was forced to resign and lost my livelihood and all that went with it including my car and my home.

After speaking to the National Society for Epilepsy's helpline, I took their advice and joined a local Epilepsy group. At the group I came into contact with many people who were around my age and younger, but still around driving age and the one recurring theme which struck me was the worry regarding the inability to drive affecting independence and quality of life. I heard everything from real concerns about "how would I take my kids to school if I had them in the future", to "I'm never going to be able to get the job I want because I can't get there by car".

I knew that people with Epilepsy were just as able to be independent, successful at work and fantastic parents, than any one else, but I needed a way to prove the point. This is where Team Epilepsy Forward rose from. The idea that if you could cycle 3000 miles and complete the a race dubbed "the world's toughest endurance event" despite suffering from Epilepsy, then I thought you must be able to get over the issue to travelling to work or taking the kids to school without a car.

This June I was part of a 4 lady team that completed the Race Across America, the 3000 mile bike race across the states. I became the first ever Scottish rider and youngest ever British female to complete the race in all categories.

Next year despite the decision that I wouldn't do the race solo this year ( I am planning to do it in 2 years time after finishing my degree), I will do the race again as part of my team - Team Epilepsy Forward. We hope to raise money for the National Society for Epilepsy, to raise awareness of Epilepsy First Aid and to demonstrate the message, that despite having Epilepsy, you can still do amazing things with your life and despite not being able to drive, you will always, always have you independence.

I may have Epilepsy, but it does not have me!

Katie Ford
Team Chief and Rider - Team Epilepsy Forward

[jazz'smum]

Welcome Katie

Congratulations on this years race and for doing such a great job at raising money for National Society for Epilepsy.

Best of luck with your degree and for Team Epilepsy Forward.

[alivenwell]

Ultramarathonwoman, I love your attitude. It's people like you who make a huge difference benefiting others with epilepsy.

[RobinN]

Hi Katie - Welcome
What an exciting Turn Around. You have found a purpose in the middle of a challenge. I am sure you are changing a lot of lives with your approach.

Good luck on your studies and the upcoming race.

[Bernard]

Hi Katie, welcome to the forum.

Were you able to get some media interviews to promote the awareness angle? Great job on the idea and in completing the race.

There is another person with a similar idea currently travelling the States by bicycle to raise funds and awareness for epilepsy (though he doesn't have epilepsy - his son does): http://www.destinymakerevents.com/

[ultramarathonwoman]

Hay Bernard, actually yes so far I have had a little press in the UK about the race. I managed to secure a double page article in UK cycling mag Cycling Weekly which was out about a month ago and will be put up on website shortly, along with messages of support from people such as MP David Cameron, who is the leader of the opposition and looks as if he may be our next prime minister and also from author Bill Bryson. We are still looking to get more messages and I am also in talks with the BBC about filming a documentary about the race too, in order to focus some attention on first aid for and abilities of, people with Epilepsy.

[Bernard]

Awesome!

We have an activist roundtable that you are welcome to join if you have announcements or projects that like-minded folks can help with.

[Navymom]

I am printing out your story and sending it to my son. He's 21 and currently in the Navy, but is being discharged next month because he started having seizures while on a submarine. He's ok with that change in his life, but is very depressed over not being able to drive. It's very discouraging and I'm at a loss for how to make him feel better. I tell him he's not allowed to feel sorry for himself, but I know it's hard to accept.

You have a wonderful attitude! Keep up the good work!

[ultramarathonwoman]

Hay navymom, thats really unfortunate about your son. I have to say though, that I'm sure he'll be ok and do some amazng things with his life for which you'll be incredibly proud. I say that because i think people who go through things like epilepsy and the set backs that can go along with it, generally come out the other end more determined, motivated individuals. I know I certainly appreciate things more than a lot of my friends and I'm sure that will help me with my future career.
From my own experience, personally I got quite depressed after I left the police, but I think that would be completely normal for anyone. I got through it and came out a stronger person from the experience and I'm sure your son will too. I wish him the best of luck in whatever he does, but he is still at the age as I was, where he could easily go back into studying if that was for him, or start a new career and I certainly found that having ex police, as I'm sure ex navy or fire service, army, RAF etc would be the same, is such a door opener for jobs etc and I know that leaving uni in 2 years time I will be in a much better position to be competitive getting jobs than my peers.
I'm sure although he won't be in the navy, it will help him massively in the job market and it will give him an edge over his peers too.

Best wishes
Katie