Volunteer extraordinaire for headache causes
If you’ve been to a Miles for Migraine walk/race or patient education day in Philadelphia, you were undoubtedly greeted by the energetic and vivacious Deborah Turk.
Deb read an article about the Miles for Migraine event, which included options for a 2-mile walk, 5k or 10k run, and her immediate reaction was that she couldn’t participate, nor could most people in her situation. Deb used to be extremely active. Since her migraine disease became chronic, Deb had to stop exercising because “migraine kept interrupting my routine,” she says. She assumed many in her position would find it next to impossible to join in a race/walk.
Then she saw that the article said they needed volunteers. Now THAT she could do.
Volunteering = therapy
“Offering some of my time, when I’m not feeling so bad, to assist others is the best therapy,” says Deb. She describes feeling pure joy as she volunteered for the first time in October 2014. “I had never been around people who had been through what I had been through,” she says, which is an incredibly special moment. Miles for Migraine encourages people to come to an event, even if you can’t physically do the walk or race. It’s also as much about community-building as it is about raising awareness.
Deb’s volunteer work both in-person and spreading the word on social media about upcoming events does not go unnoticed, says Shirley Kessel, executive director of Miles for Migraine: “Deborah is an intuitive volunteer who works with quiet devotion. She is dedicated and diligent—always the first to arrive and the last to leave. I can always count on her passion to get her through volunteering for all of our events. She may not feel great, but somehow her perseverance gets her through.”
Deb had her first migraine in her early 20s. She has faced many obstacles in the past 20+ years of living with this disease and works hard to find ways to conquer them, although the path hasn’t always been smooth. “I had a chiropractor tell me he could ‘cure’ me… and I believed him.” Deb, now a very informed patient, knows there is no cure for migraine… yet. She focuses on managing triggers and finding ways to cope with the pain. Deb practices meditation as one way to cope and is interested in starting yoga.
On her journey, she’s also had a neurologist tell her, “There’s nothing else we can do for you.” Those words felt like a death sentence. Now, Deb walks into every appointment with research she wants to discuss. She feels that every patient needs to know as much about their disease as the doctor does.
Deb lives in Pennsylvania, where there are several headache specialists, yet is unable to receive care. When her condition worsened she had to stop working, losing her insurance. She now receives health coverage through Medicaid, which is not widely accepted by highly specialized headache centers.
Resources for disability
Migraine can be financially devastating. As Deb’s condition progressed, she missed more and more work. She used the Family and Medical Leave Act (FMLA) to protect her job as she tried to figure out her new normal.
When Deb had to stop working, she applied for Social Security Disability benefits (SSDI), only to get denied after waiting two years for a hearing with a judge. She plans to reapply.
She applied to have her student loans discharged and was recently approved.
Deb is so surprised that others in her position don’t know about these services or benefits. It can be overwhelming, but there are organizations that can help you navigate the system.
Migraine as a single mom
As a single mom who has a debilitating illness, she feels guilty that she cannot provide her three children with the life she imagined. She co-parents with their father, but it’s not easy balancing family and migraine. Nia is now 24, Isaiah is 19, and Zara is 14—and then there’s her grandson, A.J.
A few years ago, Deb came home from work, exhausted as she tried to work with a debilitating condition. She needed sleep. But when her kids said, “Are you going to bed now, Mom?” that’s when she sat them down and explained exactly what chronic migraine is and what it does to her.
Money has been tight. Vacations and new clothes are not an option. The alternative is hand-me-downs and local activities. Her children never complained. There is and always has been enough love and laughter in the house to compensate for material things.
Being real about depression
Behind the bubbly face that Deb always has on, on the inside she wrestles with depression. Depression is often comorbid with migraine. Comorbidity does not mean that if you have one, you will also have the other—but there is a higher chance that if you have one disease, you will experience the other.
“Suffering from a disease with no cure is a pretty valid reason to be depressed,” says Deb, who is not afraid to be honest about this part of her life. The everyday challenges that someone with chronic migraine faces can be overwhelming, as the disease forces significant changes in every aspect of one’s life.
Deb feels the pressure to be her old self. She’s mastered the art of “faking it”… faking being well, that is. It’s a skill acquired over years of trying to pretend that everything is fine, when inside you are being tortured by your own body.
This disease creates feelings of “guilt around being ‘less than’ a mother, a wife, a friend, or a daughter that you’re supposed to be,” she says. Add in feelings of isolation, accusations of being lazy, and the financial stress it creates, and it’s no wonder that those with chronic migraine are two to four times more likely to have depression.
“When you have absolutely no hope that the misery of this life will end because you’ve tried everything, and nothing works and you see life going on without you, yeah, depression is pretty normal and to be expected in some way, shape, or form,” says Deb.
She encourages others to break the stigma of mental illness. “Stigma can keep some people from seeking treatment,” she says. “We need to view depression as an illness that is no less valid than a physical illness, like high blood pressure. We must do all we can to be in the best possible condition to fight for a normal life. When depression rears its ugly head, we MUST defend ourselves. Seek treatment and get the tools.”
Having support when dealing with any chronic illness is critical for mental wellness. Through her volunteer work, Deb has met several people from her area who have all stayed in touch. In fact, a group of five have started meeting for brunch monthly, which has become a support group for them. Because migraine attacks are unpredictable, anyone too sick to attend can Skype in.
Deb also shares her daily journey on her Facebook page: Her Migraine Life. She wants the public to know that “migraine has many more symptoms than head pain and nausea, which are seriously debilitating as well, and they cannot be ignored. They differ from person to person and they are ALL part of the disease.” This is what the public doesn’t always see or understand—migraine is a complex neurological disease.
- Asking for help does not make you weak.
- Do your own research about your disease and find a doctor who is willing to work with you.
- FMLA and SSDI can be overwhelming, but can help you during the worst time in your life. Find people or organizations that can help you navigate the system.
- You are not alone.
Miles for Migraine: milesformigraine.org
Her Migraine Life Facebook Page: bit.ly/HerMigraineLife
Disability Income Preparation Guide: bit.ly/DisIncomePrep
FMLA with Migraine: bit.ly/FMLAmigraine