by Elsa Cole | Human Centred Design Team, Atkins, Houston
As Elsa Cole says, “Some cancer survivors have a lot more going on than cancer!” Read how the aggressive radiation therapy that saved her life complicated her diagnosis of Trigeminal Neuralgia. And how at Atkins, she’s drawing on her personal challenges to innovate and make a difference for people with similar needs.
I’m 62 years old and an eight-year survivor of papillary thyroid cancer. My cancer was treated with a total thyroidectomy and a very high dose of Radioactive Iodine (RAI). I mention this because the damage from RAI is insidious in itself, and my Trigeminal Neuralgia was originally thought to be RAI damage to my parotid salivary glands.
It’s typical of a Trigeminal Neuralgia diagnosis to have had several other prior misdiagnoses. And sometimes several procedures that may or may not have been necessary… I was repeatedly diagnosed with infections of the parotid gland, and was on antibiotics more than I was off them. I also underwent sialendoscopies to repair my parotid gland. Following the second procedure my condition got worse. With the theory that the parotid gland got infected after the surgery, I took even more and stronger antibiotics. After a couple of months post op there was no improvement and the specialist who did the procedure said that any pain I had, didn’t appear to be from the parotid gland, but was most likely from the trigeminal nerve.
How Trigeminal Neuralgia affects me
I had the strangest symptoms. The feeling that I had hair on my tongue, that my tongue was swelling up, that I was biting my tongue or had bitten my tongue. If I smiled or talked, these symptoms got worse. It turned out that I did sometimes have swelling on that side of my face, so maybe I was not imagining my tongue being swollen. The longer I spoke, the more it felt like my tongue was getting bigger. At some point I could not pronounce words correctly.
As the months went on and this did not go away, I started to experience severe facial pain. I became reclusive. I didn’t want anyone to make me laugh or smile, so I stopped going out in public. At work, I didn’t want to speak. When I did, I wanted to skip the pleasantries and get straight to the point, and people didn’t understand why. I started to handle as much communication via e-mail as possible. After months of this I wasn’t able to smile, even if I tried. People would tell me “Smile, it’s not that bad.” I still had the reflex to smile, but the pain of it always punished me.
At previous work places, I worked with several colleagues who just didn’t seem to get it. One of them felt too busy to read my e-mails. I was asked to be briefed verbally, in spite of knowledge that speaking was painful at the time. I tried to cooperate by asking for meetings where I could type my end. I would need some time to set up a conference room with a view screen and hook up my computer, which I made known. The response to this suggestion was to set up meetings at the last minute, with no chance for set up. Some meetings were scheduled in conference rooms with no view screen. An example of resistance I encountered was the assertion that I can’t type as fast as I can speak. I can type 160 wpm on a good day, on my own keyboard. Conversational English is about 120-150 wpm. I can’t write that fast, and have handwriting illegible even to me. Once when I was scheduled for a meeting in a room with no screen, one of my colleagues became irate when I attempted to write down my part of the conversation on paper. The meeting was cancelled immediately with harsh words.
The stress of what was going on was incredible, not just the condition, but the way some of my co-workers were reacting to it. This made my illness much worse.
Running out of treatment options
In the mean time, my neurologist was trying anti-seizure drugs to control the Trigeminal Neuralgia. I developed an allergy to the first one and was taken off of it, even though it worked pretty well. I have many drug sensitivities and allergies, so he was only able to think of one other drug that might work. I was on this drug for many months before the side effects became life threatening. The long term effect of this drug was urinary retention. I already have stage one kidney disease (cancer souvenir) so I had to stop taking the drug entirely, even though it was working.
The neurologist didn’t have any other medications for me to try, with the exception of creams or facial patches. Other options would be surgery, extremely hard to recover from at my age, gamma radiation, and several other destructive procedures that might make things better or worse. Instead of taking any of those routes, my approach has been to avoid anything that will make the condition worse. I try not to smile, I try to limit how much I speak. I try to keep anything from touching my face. I do controlled breathing. As I identify other things that affect me adversely I try not to do them.
Atkins celebrates what I can do!
I’ve been at Atkins for less than a year now. At my previous position, my hiring manager told me that I was not the person that he hired. On some level I understood this, but on another level I still felt very productive and capable, and an asset to any company. So when I went through the hiring process here, I was determined to go in with full disclosure about my medical condition. I did not experience any discrimination then or since. I’ve been very impressed with the way Atkins has embraced my talents and focused on what I’m bringing to the company, as opposed to my limitations.
Channeling experience into innovation
Working in the Human Centred Design Team at Atkins, we incorporate disability awareness into our engineering solutions and design for disabilities. Motivated by my disease I’m currently working on a type-to-speech application. And having reached out on social media, I have the feeling that I’m the only person who is developing something like this. I acquired a chorded keyset that you can wear on your hand like a glove. Learning to use it is the first step. This particular keyset is designed to chord one handed, and you can choose which hand to use. I originally started to learn left handed, but when I got to the interactive lesson on typing the letter “z”, I had trouble tapping my middle and pinky finger without the ring finger trying to participate. My next step will be to try the right hand. What I type is ‘Bluetoothed’ to a device, such as a smartphone. I will then be looking for a good app to convert into speech. If one is not available already, then I will be learning how to program an app to do so. I’ve just started on this exciting project, and would love to collaborate with someone like an Occupational Therapist who could prescribe this equipment that I’m designing. As I get further into the project, I have a few interested collaborators who have promised their support in developing this further. I have even made some new friends in this effort.
Trigeminal Neuralgia can be debilitating and it’s quite common to go on disability benefits when you get it. So most people who have this disease are shocked to hear that I still work. But imagine if someone who can’t walk was told, “If you want to work, first you’ll have to invent the wheelchair.” It’s ridiculous, and I hope to change things for people like me.