A STRUGGLE THRU DARKNESS & PAIN TO
ILLUMINATE THE NIGHT
By Pamela Unverzart
Recently I had the pleasure of meeting a woman whose story of the beginnings of and her path through life with TN appear to share similar episodes as described in recent patient stories which have focused on the diversity of trigeminal neuralgia (TN) patients, those who don’t fit what statistics classify as the “typical” TN sufferer.
Sharing these stories with the world was an attempt to open people’s eyes to the fact that TN doesn’t thrive on statistics, nor is it choosy into whose world it throws its chaos.
By only sharing the unique, however, a gap of understanding is left in explaining the deep toll this disease takes on those who find themselves one of the ‘statistical’ groupings. There are many whose story of the beginnings of their disease share a similarity…the common thread of age upon onset, the expression of the disease’s pain, the frustration of wending through a multitude of doctors and diagnoses prior to discovering the true cause of the horrific pain that’s taken over their life. There is also the shared desperation of medications and surgical procedures that have failed to curb the relentless path of destruction the pain of TN leaves in its wake.
Similarities with many suffering with this disease
At 50 Lori Meltzer woke with what she considered to be the worst toothache imaginable. Frequent visits to various doctors followed: dentists, Ear Nose and Throat specialist, oral surgeons, orthodontists, neurologists, neurosurgeons. Sadly, it was her own research on the Internet, however, that helped her direct the doctors to a diagnosis of atypical trigeminal neuralgia…atypical because her pain never ceases.
Inconceivable pain became a constant in Lori’s life. Medications curbed the pain but the destructive side effects prohibited their use. Gamma Knife followed, but failed. The current crème de le crème of surgical procedures -microvascular decompression surgery – followed, but it, too, proved unsuccessful. A host of homeopathic options proved futile as well. And here is where the similarities with statistics of life with TN and Lori Meltzer part ways.
What do you do when unrelenting pain shreds the world you’re accustomed to and leaves it in tattered ruin at your feet? These are the times when a significant other, good friend or family member becomes vital to our very existence. Yet relying on the strength of a significant other is not always a possibility, giving up and giving in never becomes a choice. The requirement of putting food on the table and a roof over one’s head simply doesn’t go away. Dependence upon oneself to provide the necessities of life continues even in the darkest of days.
A single mother and successful clothing designer and cosmetic entrepreneur, Lori has lived her life with her eyes focused on success, accepting the obstacles placed along her path as opportunities for a better tomorrow. Lori was forced to pull upon an innate inner strength to find the answers that life with TN often forces one to confront; what do you do when there is no one to step in and pick up the pieces when your world falls apart? How do you cope? How do you carry on? How do you face the years ahead knowing you and you alone are responsible for making ends meet? Where do you find the strength?
So it is not in Lori’s story of when and how she suffered TN that marks her so unique. It is Lori’s determination to face every day as another opportunity for giving back to the world around her that marks this woman as extraordinary. Lori Meltzer struggles through her days in a haze of pain that never ceases, but she refuses to encumber others by sharing her suffering. In fact, alarmed by having read the many inferences and unverified stats of suicide associated with having TN, Lori chose for many years not to burden her family with the fact she’d been diagnosed. When asked to describe her pain, she simply says, “Pain is pain. One draws you to your knees to cry and the other is always there. But it is more the fear of the lightning strikes that’s the worst.”
It is within only a few moments in Lori’s presence or listening to her speak you realize that she may fear the lightning strikes, but she has not given into that fear by allowing it to take the joy of existence from her. Instead she puts her challenges into perspective, adding that, “I may have to live with it, but I choose to live, so I grab onto the good parts and make them what matter most.”
And one of the joys of life that matter most to Lori Meltzer is giving back to others in need. Volunteering at Ronald MacDonald house brings her strength -- filling life every day with worthwhile things to do providing a dose of distraction that keeps her from lingering on the pain. Lori states that meeting Michael Pasternak from The Facial Pain Research Foundation helped her realize she was not alone in her fight against the disease that stole normalcy from her life. She adds she finally felt like she was with a family of people who understood; it was then she was filled with a driving force to spread awareness about the disease to the uneducated populace.
Choosing to become her own advocate in controlling the future of the disease, Lori resolved as well to help promote The Facial Pain Research Foundation’s (FPRF’s) research for a cure. To do that best, she elected to tap the resources she was most comfortable with…her distinctive style, creative streak and business savvy. And how does a personality that lights up a room with her presence chase away the darkness that threatens to encompass her world?
What better way to bring light back into life than pushing back the shadow of pain and darkness creeping into every corner of her existence! To celebrate finding hope even in the gloom of illness, Lori will present to Chicago the first annual “ILLUMINATE THE NIGHT – a Quest to Cure Trigeminal Neuralgia,” a gala given for and presented by successful business women in Chicago. The evening will honor local professional women’s enterprises, their fashion, their jewelry, their business acumen and success, with all profits from the evening being donated to finding the cure to end trigeminal neuralgia and other facial pain neuropathic disorders.
Lori Meltzer may feel lucky to have finally found a family of people who understand what she endures, but it is The FPRF who was truly blessed by the knowing of this amazing woman. Lori may be hesitant to belabor the depth of despair she feels when besieged with the pain of TN. Her travel into and through the relentless heartache of overcoming are in no way diminished because she shares that same path with others. Her struggles both physically and emotionally are deep, immensely debilitating and extremely personal. Living with TN is, in truth, an ugly nightmare that never seems to end.
That Lori suffers cannot and should not be forgotten…but it is her courage to never give up, the beauty of her giving heart, the hope that her smile instils that endures. It the very bright light emanating from her soul -- that special ability to light up the darkness -- that triumphs.
Find out how you, too, can support
Lori’s Chicago fashion Gala - Illuminate the Night
A Quest to Cure Trigeminal Neuralgia on May 22nd