The Facial Pain Research Foundation knows that Trigeminal Neuralgia (TN) doesn’t pick and choose its victims. Facial pain sufferers come from all walks of life. From the factory worker to the teacher, from the deli worker to the farmer, from the stay-at-home mom or dad to the professional athlete, the relentless toll it takes on one’s life is the same — it is agonizingly destructive. A native of Gibraltar, Lee Whitwell, NCAA two-time national tennis champion and FMU Athletic Hall of Fame inductee, knows the agonizing destructiveness on a personal level. This former professional tennis player’s nine year struggle with the disease has affected all aspects of her life, from the personal to the professional.
Many with this disease hide its existence from the world around them, terrified of the stigmas that come with having a chronic pain disease. Taking her disease out of the shadows and thrusting it into the limelight of the public eye is difficult, but after years of unsuccessful attempts at treatment Lee chose to step up and reach out to do what she can to help with research to find a cure for the pain that doesn’t let go. She shares her story below and in the Public Service Announcement that follows:
“Maybe the fact I used to be a professional athlete is a blessing, because this is the hardest and longest tennis match I have ever played in my life – and I will win! There are days I feel like we are on serve going back and forth, pain under control “ish” for the most part, but there are times when I feel like I am a set down, or worse – serving to stay in the match. That is when I need to really dig deep, knuckle down and just fight because the opposite of fighting is not an option. I cannot give up! My friends and family mean too much to me. I am lucky to have them. They put up with me and are there for me during my best day and worst and every other type of day in between.I always believe one is never given more than they can handle in life – although with TN that can get hard sometimes, but that is how I look at my having TN.
I have always tried to look at my having TN as just one more thing. One of the things you learn being an athlete is to compete sometimes when you are not at your best, but not letting on and figuring out how to play your best and win. Anyone who tells you it’s not about winning but rather than taking part obviously has never won – it is always about winning at the professional level.
My coach once said to me – “no-one cares why you lost. They just remember you lost.” So that is the attitude I try to have with this damn thing called TN. Whether it be deadlines at work, meetings, training sessions you didn’t show up for, the reason why is the last thing people remember, but they will remember you were not there or missed the deadline.
If you ask anyone to describe me they will probably tell you I am a smart ass, funny, a comedian, I should do stand-up, the life of the party. TN has and will not change that. Very few people know I have TN. It is not a badge I want to wear and, quite frankly, it is none of their business, but I suppose they do deserve some sort of explanation when I am in ridiculous pain and turn into a royal bitch for which to them appears to be for no apparent reason.
Try explaining TN to the average person. I can’t count the amount of times I have heard the response, “oh – like a headache?” What I wouldn’t give just to have a headache!
TN is one of the worst kinds of pains I truly think anyone can experience. It is completely debilitating. But if you were to look at someone you may not know how badly they are suffering. I have always said if I were missing an arm or leg people would understand or be a little more patient with me because I have some outward disability.
Only a TN sufferer knows what thoughts lurk around and pop into the mind; they are not comforting ones. To the contrary, they are quite scary. They are ones that try to convince you to just simply make the pain stop, and unfortunately too many have taken their own lives because that is the only way they know how to make it stop. I would be lying if I said thoughts like that had never crossed my mind. I think these thoughts have crossed every sufferer’s mind at least once.
I have had TN for 9 years – 6 surgeries, countless medications, most of them reaching toxic levels, and nothing worked. I have TN on both sides. I am on the young end of the spectrum and know and experience first-hand on a daily basis the horrors of this disease.
Ever had a brain freeze whilst eating ice cream? It sucks, doesn’t it? Well, that is me on my best day; that is my pain baseline. Most of you cannot imagine a pain in your head much worse than that. Well, let me tell you, it gets a lot worse.
I feel like now I can tell my story – step up to the plate and be a voice, a face, a hope for TN. Hopefully my story will inspire others to get involved and help make a difference. Maybe my story will be relatable to others. But sitting by quietly is not an option for me anymore. This is me coming forward and telling the world I have TN and together we need to help fund the research being done at The Facial Pain Research Foundation, together we need to find a cure.”