Life Over Pain

After three brain injuries over her lifetime, Amina's cognitive ability was impacted in such a way that she was unable to ask for help on her own.   But like many of us, it was hard for her to know how much she had really changed as a person.Poignantly, her young son was the one person was able to show her how much she had changed by asking for his "old" mom back.  It was  an emotional blow and a common hit to our self esteem that is common for those of us with brain injury.  Wisely, Amina had a good lawyer who helped her get access to aides to help her with basic admin tasks and some small parts of taking care of her son.  But she was there for him as he was there for her., even if their relationship got significantly emotionally strained at times.She knows she has a limited amount of stamina and if it runs out in the middle of a task, she just has to drop everything and go home. It requires planning and she has gotten pretty good at predicting when she is getting low.She has made great stride

Bella Paige was a highly competitive show jumper as a younger girl.  And she LOVED it.  The adrenaline rush alone might have been enough to keep her going but she loved the competition, the horses, all of it.  She planned to compete and show horses for the rest of her life.  Sadly, injuries intervened.  In any sport having to do with 1200 pound animals you can bet that injuries will come, and often.  But highly competitive, driven athletes (even young ones) often don't share their pain with others, nor do they ask for help.  So Bella kept competing in spite of accumulating injuries and increasing pain.  But, finally, sadly she had to stop and she had to drop out of school to heal.Such a set back can be emotionally crushing, and it was for Bella.  It took a great deal of time,  many dark days with little to brighten them, and a vast amount of help for her to come through her emotional and physical struggles.  And she's not done.  Bella works on herself everyday.  She's found dirt bikes to replac

When you are faced with an existential crisis, it's hard to see what is right in front of you.  Brain injury and Lime Disease screw with one's sense of self.  Pamela Schmidt was a never-say-never person a superwoman in the flesh.  She still knows she is that person in some ways, but then again, she isn't that person.She's had concussions in her past, like so many of us, but nothing like when a window fell on her head.  That changed everything.  Back in the 90's she was told to keep going, that she was okay.  But she wasn't.  She had to change her approach to life.  So she changed what she did, but not entirely how she did it.  She was still all in - home schooling her three kids, being a perpetual volunteer who usually became the lead at those efforts.  She's an incredibly capable person in spite of her limitations. Superwoman still reigns.  Pamela just doesn't see it herself because she can't be the same kind of superwoman that she used to be.  But you'll hea

Joseph Ryan oozes enthusiasm.  He's overcome so many brain injuries that his head seems to have been a target for danger rather than a protected space.  As with many who have suffered brain injury pre-2018, his had gone undiagnosed.  So he struggled.   Smart, energetic, creative, adventurous; yet he struggled.   But, his brain wasn't keeping pace.  As years passed and injuries mounted, Joseph finally found help via Pennsylvania's head injury program.  This program provided all the elements of help he needed: counseling, PT, OT, out patient.  His case manager helped him through financial issues, insurance issues as well as personal growth issues.  The people in this program helped Joseph holistically.  They helped him to get the home support he needed and to fundamentally turn his life around.In fact, Joseph has gone from despondent to  vivacious.  He has a new lease on life and a life purpose to visit all major league baseball stadiums in the US.  And he's well on his way having been to 16

It's hard to imagine a time when we didn't know how dangerous a blow to the head can be.  But it was just 20 years ago when Ethan O'Brian was playing youth hockey and started getting banged into the boards and ice and other players.  He kept playing.  No one told him to stop as they might have today.  There was little talk of concussion.  It's not just hockey and American football or rugby where kids get hit hard and enough times to cause damage to their brains - for boys and girls alike.  Thanks, sadly, to the NFL and military, stories about brain injury and CTE have been common over the last few years. Research is being done and parents and schools are waking up to the risks kids face.Unfortunately, that didn't exist for Ethan.  He had to learn how to help himself on his own.  He's an over-achiever - the kind of kid you wanted to hate but couldn't because he was so damn nice.  But as he suffered more and more concussions, he withdrew,  became a bit solitary.  While he was

Sameer Bhide's life was on track.  Family, friends, career, many interests to pursue.  Then one day, out of no where, his brain says, "Stop!" A stroke.  A genetic condition caused his stroke so there wasn't really much he could have done to prevent it.  So now he had to deal with the aftermath.  A month in a medically induced coma left hime a bit bewildered, at a loss as he awoke to a completely new situation, one where he couldn't talk or move most of his body. On the surface it's hard to see it now, but in many ways he was lucky. He had his cognitive function, he had his family and friends around him. and he had good medical care to help him process his situation. Not everyone has that many factors in the plus column.  Sameer made the most of his rehab services here in the states and he made good progress.  And on top of that foundation, he then added an extended stay at a facility in India call Nimba. there he continued with the therapy he was doing in the US and he added medi

Megan Heiser grew up on a farm, traveled the world, had a career, got married, had a baby. She was a perfectionist. Then things changed, dramatically.  An auto-immune disease caught hold of her and has made her take a completely different approach to life.  Each of us wake up to a new day with some uncertainty, but we generally have a strong sense of what our day will be like.  Unfortunately, that's not true for Megan.  Her disease throws her a curve ball every day. She may wake up with pain, fatigue or a whole host of other bodily errors she'll have to deal with that day.  To cope, she's had to let go of trying to be perfect - easier said than done.  So she tries to look at what is real and what is not real.  Is there something that doesn't hurt today?  Can she use that piece to help her accomplish what she wants to do that day?  Or, does she have to realign her goals for the day to accommodate what she realistically can do.  It's a daily balancing act.How does she stay sane?  She ha

I don't think anyone is prepared to have a stroke, even if you've had them before, or you doctor has told you to beware. It's a life changing event. When Marcia Moran's life changed in this way she found herself laughing at everything. Perhaps that was a blessing because she was in sever pain, and couldn't talk or walk. After leaving the hospital and rehab, she pursued additional therapies like massage, acupuncture, laser, speech and neuro-feedback to name a few. As a patchwork of treatments, each offered value to help her regain capability and, moreover, confidence. She now leads Toastmasters groups in her area, which she began attending initially to help with her aphasia. Marcia firmly believes that one should try something new every day. Because, one should never believe that there is a limited time to recover. Every day is a new opportunity to to get better. Marcia has a written a book called Stroke Forward and has a website strokeforward.com.A Note On The Life Over Pain

One way many people create a life of value as they live with whatever cards they have been dealt is to give back in some way. That is a key reason why most of the people share their stories on this podcast are so generous in doing so. And Paige Speers is a fine example.Paige suffered a pulmonary embolism which left her with an acquired brain injury. She went through the standard rehab and medication protocols as she fought back from this trauma. Those only took her so far. So she looks for more resources, and let me tell you, Paige is very good and find them. Not only did she find functional neurologists, but also she found therapies that where based on things she loved to do in her youth like horseback riding and dance, all of which were rolled onto a holistic approach. Now Paige is on a mission to help others find resources that will help them with the right kinds of therapies for them. In fact she has shared links to some of the resources she uses below along with her business email.Here is a list of resou

No one knows the value of love and support from family and friends better than Scott Olson. When he was eight, doctors took out one third of his brain. They said he wouldn't walk, talk or use his arm again. But Scott was undeterred and his family kept telling him that they loved him - his grandmother even snuck hamburgers into the hospital for him. He got back on track to school, walking and talking and living life with gusto and creativity and love. Getting here wasn't easy. His story is one of courage through great adversity where mostly the best advice was just the straight story so as not to create false hope, like, "kids can be mean." There are more challenges in Scott's life than most of us could even imagine and in the past he may have wrapped his identity in his disability. But he has separated from that view much more now. Scott produces a podcast and website with his wife about budgeting called Centsable Chat (https://podcasts.apple.com/us/podcast/centsable-chat/id

It's hard to imagine living for a few months without being digitally connected, watching TV, listening to the radio, reading a book or just going out. But that is what Phil Terry's doctors said he needed to do to start his recovery. Phil suffered a concussion after he was hit by someone on a bike in NYC. It's called cognitive rest and it's a protocol that is being adopted for kids who get hit playing sports at school. For an adult who's company (Collaborative Gain) teaches people how to ask for help and who is constantly organizing others, coccooning himself was an anathema. He began to embrace his quietude over time as he embraced taking things more slowly not unlike the slow art movement he started long ago (https://www.psychologytoday.com/us/blog/in-the-brain-the-beholder/201411/the-slow-art-movement-its-more-meets-the-eye). For example, Phil has always been a voracious reader, so when he began reading in print again, he did so with an eye to new details in the writers' a

In life, each of us must overcome the slings and arrows aimed at us. Stefan Weiner had to survive more than most. Imagine having your life's passion taken away and replaced with pain. Stephan's passion is music and his pain made it impossible for him to play. His body failed him time and time again. Sadly, doctors were unable to find a unifying cause. Moreover, his pain continued even after his body healed from each injury. No one knew where his pain was coming from, yet his pain was very real. Eventually, Stefan was able to get to the Mayo Clinic. There, he was diagnosed with Central Sensitivity Syndrome. As a result, the clinic was able to provide treatment which helped Stefan learn to manage his pain. It's a life-long effort for Stefan, but the outcome is that he gets his music back. He plays his song Thunderclap for us at the end of his story. You can find more of his music on all streaming platforms under his artist name Stefan Alexander.A Note On The Life Over Pain Theme Music:

Jennifer Ward has built a full life after a bike accident left her with a traumatic brain injury at 19. In fact she tried to go one with her life like she was largely unaffected after she got out of treatment. She went back to work as a lifeguard and back to college. She did realize she had to slow down a bit over time. And she still managed to get married and have children, become a reiki master and nutritional advisor. She does struggle with memory loss and emotional regulation, like so many of us with traumatic brain injury. In fact she and I met because we both went through the Mt. Sinai Emotional Regulation program in NYC. It's helped us recognize how we are triggered to react with immediate, outsized emotions and try to take action beforehand. Her kids even help her. Jennifer is trying every day to move through this space more elegantly.A Note On The Life Over Pain Theme Music:Emily Bielagus graciously and generously composed the lovely theme music for the Life Over Pain podcast. Find her

Zazel sat in front of a room full of people at the audition yet she couldn't speak her lines. She wasn't nervous, that's not Zazel. She was having a seizure. She just didn't know it. For years doctors couldn't find anything "wrong" with Zazel even though she would have these "episodes" and other symptoms. Finally, they found the giant tumor that was causing all the chaos. Removing the tumor was a very dicy operation but Zazel came through it with the help of her family, excellent medical care and the healing waters of her native Montserrat. As she recuperated she found mentors who helped her find ways to use her existing talents toward a new passion of helping people in the brain tumor and brain injury community. Now she is a social worker and activists and works with organizations in NYC such as The Brain Injury Association of NEW York State. And, she founded ZCO Dance Project. Part of ZCO's mission is to encourage the integration and inclusion of peo

It's been 11 years since Monique Lussier's car accident. Her life has changed but her spirit has not. She pulled herself out of a deep depression to right her ship, which she firmly asserts is not sinking. Life is not always smooth sailing as Monique struggles with chronic peripheral neuropathy. And, as anyone with a chronic condition knows, that constant pain can wreak havoc on relationships. But she is an accomplished woman and athlete who doesn't take no for an answer, so she continues to look for treatments that might help her pain. As she searches, she finds unique ways to help herself and others cope with chronic illness; through dance or just at the grocery store. Monique is always looking to help others and offers to let them reach out to her for help 24/7. Unique Monique shares her story with raw emotion, bravery and a little music.Stay tuned at the end where Monique walks me through a visualization to try to alleviate some of my pain.A Note On The Life Over Pain Theme Music:Em

Heather Richards watched as the big red truck came at her car. She she couldn't move out of the way. It crushed her body but not her spirit. Heather powered through numerous surgeries and chronic pain to get back to work only to be hit again, this time by a box. Sadly, Heather was unable to get back to work in the way she had known. So she reimagined her life and turned to academics - much of it online. The first in family to graduate college, she has gone on to get her masters and her doctorate. She now teaches and designs curriculum at a college in Massachusetts. Type A personality you say? Yes. But her capabilities are limited. She can't bend over to tie her shoes and can't sit for long periods like the rest of us. Still, she had a baby through all this, cared for an aging relative, has a loving husband and a menagerie of pets. Type A? I say wonder woman.A Note On The Life Over Pain Theme Music:Emily Bielagus graciously and generously composed the lovely theme music for the Life Ove

Chris Richards was a successful engineer and led an active life before he strained a muscle in a push-hands tai chi class. Four years later he had to leave work on disability. He tried every doctor he could but they just couldn't figure out a solution. Chris reconnected with a childhood friend who has his own physical challenges and has found the inspiration to reinvent himself. Now Chris has a new job, new motivation, and a new relationship. And, he is even writing a new book called "The Sideline." He has come a long way.A Note On The Life Over Pain Theme Music:Emily Bielagus graciously and generously composed the lovely theme music for the Life Over Pain podcast. Find her music at Spotify, wildyawp.com, and reach her at wildyawpband@gmail.com.

In 2010 Patrick Laboussiere was hit by a NYC Subway train. His story of survival and reinvention tracks through waking up in the hospital not remembering large chunks of time in his life, or people, through multiple intensive therapies all the way to enrolling in a masters program in corporate communication. He wasn't always in the most positive frame of mind, but he persevered with a supportive team around him and internal fortitude that, perhaps, he didn't know he had.A Note On The Life Over Pain Theme Music:Emily Bielagus graciously and generously composed the lovely theme music for the Life Over Pain podcast. Find her music at Spotify, wildyawp.com, and reach her at wildyawpband@gmail.com.

When Jen Sargent met her future husband Pete Sargent, she had no idea he was in chronic pain. But six months into their relationship he couldn't keep it from her anymore. She had no experience with chronic conditions. So Jen began to work around the pain. She would try to think ahead and adjust the things they would do. And she kept a positive attitude. But years went by and the pain became a part of their relationship and it affected their marriage. It's hard for caregivers to continually separate their loved one's pain from what's happening. Jen decided to become empowered. She became an ardent advocate for Pete's health and found him new doctors, helped him create a "one pager" about his medical history, and actually went with him to doctors appointments. She is deeply embedded in Pete's healthcare as another set of eyes and ears. Together they turned the corner and Pete has been nearly pain-free for the last eight years. And they have two adorable kids to t

Pete Sargent was happily playing college basketball when he got injured. His coaches thought it was a pulled muscle and he played on. But the pain increased and Pete had to stop playing for good. After college Pete worked with physical therapist after physical therapist to try to alleviate his pain. Some were better than others, but there was little to no progress. He learned to stretch every morning. He became mindful of how his muscles felt. But still, he compartmentalized his pain and went on. For years, he struggled with the lack of a holistic approach to medicine in our healthcare system. Then he met Jen. Their relationship grew, they got married. Jen became passionate about finding a better solution for Pete's pain. Her ardent advocacy not only found Pete the right doctors but also helped Pete to communicate more fully with those doctors. Because of this partnership, Pete has been nearly pain-free for the last eight years and they now have two adorable kids, to boot. This story has a