TOUCHED BY LYME: When pain is simply unbearable
As a kid growing up in southern California in the 80s and 90s, Bryan Bower was a bit of a daredevil: BMX biking, rollerblading, skateboarding, snowboarding—never a show-off, but always pursuing his jumps and thrills. As a college student, he discovered a new passion, rock climbing. He went everywhere with his new best friend and climbing buddy Rhyan. Joshua Tree, Tahquitz, The Needles and Malibu Canyon were southern California favorites. In his early 20s, Bryan started training to climb Yosemite's El Capitan, practicing with one of those folding ledges that you haul up and sleep on when you’re half way up the 3,000-foot granite face. All that came to a screeching halt about six years ago
when Bryan was struck by a series of bizarre symptoms: debilitating headaches, brain fog, intense pain in his spine and shoulders, night sweats, difficulties with his balance, sleep disturbance and depression. That prompted a series of doctor appointments which, after many twists and turns, eventually led to a diagnosis of Lyme disease. By this time, the infection was deeply entrenched in his brain and central nervous system.
His was a dramatically changed personal landscape. There were different kinds of rocks to climb now, boulders named severe neuro-Lyme, co-infections, and brutal suffering.
He would try different doctors and different treatments through the years, even traveling to Mexico for alternative therapies. Sometimes, he could muster some of that old daredevil energy to dive headlong into a new treatment protocol. Sometimes he couldn’t.
Occasionally, there would be some improvement in his physical situation. When it didn’t last, he’d pour his agony and frustration into the written word, on his blog or in anguished poetry.
Previously a devout Christian, Bryan felt utterly forsaken by the God that had once offered solace and refuge.
In the last few years, Bryan spent most of his time in bed, trying to distract himself from blinding pain that even heavy-duty meds couldn’t relieve. He’d surf the web on his laptop, searching for alternative Lyme treatments while lying on an electro-magnetic mat. He’d keep TV, Netflix, or video games flickering on the big screen in front of him, in vain hope of even momentary diversion from the pain.
Friends and relationships from the past had pretty much fallen by the wayside. His mom and dad gave love and support and tried to lessen the isolation as much as they could.
Yet, nothing he tried could carry him away from the pain. Ultimately, according to his family, Bryan “just wanted the pain to stop.” On May 2, 2011, he ended his own life, leaving his parents to read the following words he’d penned for them earlier.
Don’t follow my starlight
It goes well beyond and you must stay
and drift away until you too are gone
- Bryan Bower
I never knew Bryan, but his is the fourth Lyme-related fatality I’ve learned about recently. It makes my heart sick. Wake up, America! Tick-borne diseases are stealing our children. While the medical establishment, insurance companies, and government health officials play politics and pretend that Lyme disease is no big deal, or worse – a complete sham – people like Bryan are abandoned by the institutions that are supposed to help them.
A speaker at the recent webinar on Lyme by the Centers for Disease Control made the astonishing assertion that long-term neuroborreliosis would eventually “resolve” on its own, without any treatment whatsoever. Tell that to Bryan’s heartbroken family. Tell that to untold thousands of Lyme patients who live with intractable pain and other unrelenting symptoms.
The loss of this young man makes me both sad and angry. We in the Lyme community owe it to Bryan and others like him, to channel such emotions into meaningful action. Tick-borne disease is taking a toll on our society that will not “resolve” on its own.
Click here to read Bryan’s memorial page with some of his poetry.
The TOUCHED BY LYME blog is written by Dorothy Kupcha Leland, CALDA’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
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No words, just tears.
Why was this young man not taken seriously? He's gone, this is serious!
Where does compassion end and ignorance take over? My heart aches for his family and also for he who had no hope.
Let us pray for his family and for wisdom about this disease so that no one had to go through this again. His life was precious….could it have been saved?
Bryan was my son. The strongest warrior, the truest soul, and most knowing person I've ever met. Even when he was hurting in a way that most of us could not even fathom – he likened it to being shocked to death – he never showed how much, he never cried.
Bryan sent this message to his best friend in March after what was their last conversation: "I can’t tell u if I’m gonna live or die. I can tell that I want to live like crazy. In fact it is crazy to endure the pain I do. I’m trying acupuncture, magnetic mats and all this [stuff]. I guess my last hope is that I can fight my way out of it. Modern medicine can’t do much for me…"
Not only could 'modern medicine' not save my son, the state of outright denial that he endured and Lyme sufferers all over the world endure, denial that chronic Lyme even exists, sapped his spirit, though he never let on.
His death will not be in vain. We will never stop fighting this insidious multi-infectious disease. If I can help you or your loved ones please let me know. Every case is different, but I have learned a lot in the last 6 years. It's what Bryan would want. Peace.
jerrybowermi@gmail.com
I agree with Mary's comment. Although I have neglected my relationship with God lately, I am now seeing the importance of prayer and this is one of the issues that I have begun bringing before the Lord lately. Christians, Pray and don't stop praying, please!
Dear Mr. Bower,
I am so incredibly sorry for the loss of your son. I, too, am a sufferer of lyme. Initially, I didn't believe it was lyme- the tests were negative. Then I came to accept the diagnosis and it is unfathomable that a disease exists which the medical community completely disregards. It is unacceptable and I am with you to fight so that Bryan's life and the lives of so many others were not lost without purpose. I offer you my deepest sympathies.
I am so sorry for your loss. My husband and I suffer from chronic lyme disease for 4 years now. It is the hardest struggle of our lives we have 5 kids we are raising and both working full time. It is forcing ourselves through the pain and complete personality change and brain fog. I have become so angry and depressed. we are on 3 antibiotics and so many other treatments but still we suffer. All because our dr's wouldn't treat us when we first knew we had it. Our Dr's are killing people and the FDA all to keep people sick so they don't lose money on drugs people take for illness's they don't even have. There were times I wish I wasn't here anymore and wanted to just die or get better.
I can't imagion what your going through losing a child. Nobody understands how your quality of life is gone and you no longer even know who you are anymore. My heart breaks that Bryan felt so hopeless to take his life. I do understand that most of us with lyme as bad as his (im sure his was worse than mine) have one time or another wished we weren't here anymore. It rips your life of everything you once were and you think it will never stop. All over a tick it seems impossible that a tick can cause such damage to the human body and brain. I'm sure Bryan was no longer seeing any light at the end of the dark hole of depression this brings to you. It is so unfair that Dr's are not learning about this or letting the FDA fear them into losing their license to treat people with Lyme the way they need to be treated. We went to the top specialists in New England at the best hospitals and nobody had a clue what was wrong after hearing there as a tick bite and red rash. For me I didn't get any red rash or aware of a tick. It has been like my life has been ruined for many years. I just hope there will be a cure or the FDA will allow a cure to be known for so many that suffer. Millions are walking around with Lyme and Dr's make them feel like they are crazy and that they just need drugs for depression and send them on their way.
May Bryan rest in peace with no more pain and suffering. I know he will be dearly missed and nobody should ever have to lose their child before themselves. It has to be a nightmare and my heart goes out to you.
Can't understand why the people which suffers from an debilitating illness like Lyme disease, does not use the neuroprotective herb "Cannabis sat. var. ind." as an efficient medicine against the pain.
I suffer from Lyme no more that much, because I can manage the pain now with the help from this plant, otherwise I think I would have committed suicide as Bryan, that's for sure.
Thank you, Dorothy, for this sad and moving account of yet another person whose pain and death are the outgrowth, not only of this complex and debilitating illness, but of the ignorance and denial that surrounds the disease and the patients.
In educating the public, as well as professional, about tick-borne diseases, it is vital that we put a face on the suffering patients, and tell their stories. To change the hearts and minds of those in positions of power, we need an outpouring of accounts by patients and those who love them, to insist on funding for unbiased research and access to journals for publication.
In our communities around the country, we need to continue our efforts to educate both professionals and the public. And we need respect and support for the suffering patients and their families.
Ultimately, our unbiased research needs to lead to a cure for chronic tick-borne diseases, a cure that is not defined by weeks of treatment, but by the end of the suffering of the patients, the end of all symptoms, the restoration of their health!
Sandy
So sorry for the loss. Was sent this by a friend who has been suffering for yrs with Lymes. For him to post is an eye opener to everyone that has been bitten, has thankfully recovered or that has been suffering for yrs as he does to promote awareness that this f'in sucky disease still plagues its victims after yrs of treatment and after yrs of loosing our loved ones or having them cripple. Such a bizzare and painful evil disease.. My heart and prayers goes out to Bryan and his family. <3
this is us. daughter sick for 5 years. seizures, sick, sick. had to refinance the house and credit card bills. $1000.00 bottle of medicine for 11 months. had the doctor of doctors. the hero of lyme. he is 82. you know who he is. well she is getting better. the brain lesions are less. she can hold a fork without dropping it. she can live a day without collapsing. this man is speaking out for bryan. he has 2 million dollars in legal fees as the IDSA and FDA try to shut him up. he pays a legal monitor 6000.00 out of pocket just to continue practicing. the children come to him from all over the world. he will be dead or bankrupt soon if the medical community has their way. you know who he is. google him and contribute. if you care as much as you say. he IS the man of the hour. he alone has taken on the medical machine. all the rest of the lyme docs are hiding and sliding. if anything changes it will be becaouse of him.
Jerry, I'm so sorry for the loss of your son – made me cry. I personally feel it's time for us to stand up to all the doctors and not take no for an answer, and then educate their staffs. We are all fighting for our lives now. I am not quiet in doctors' offices anymore. I bring brochures and I talk about the real facts of these illnesses.
I saw a mini break-through once when a doctor told me he was walking a dog. I talked to him about dogs and dog walking, and for the first time, I saw worry in his expression. So here's a possible idea – find a way to personalize the issue with doctors – do they have family, pets, do they have any kind of an outdoor lifestyle. And then tell them what could happen to them and theirs.
My heart breaks again as I read this story. I know Jerry and Bryan and they helped save me from much suffering. By sharing their knowledge I was able to get effective help and avoid many bad diagnosis along the way.
Bryan was handsome, bright, funny and an amazing writer – he bravely carried his pain, but when he talked to me about it there was seriousness that left no question. After I met him I quit all the self doubt and wondering and I then took my diagnosis and care very seriously and am doing pretty well. I know Bryan's life helped save my own.
Much needs to be done to help Lyme complex sufferers, protect our doctors and educate the unaware. With Bryan's story and Jerry's passion there is a bright light in the darkness!
Jerry gave me a copy of Under Our Skin – which I have shared with a number of Doctors and friends – it's one thing that has made a difference.
Thanks to so many who move this forward.
Another SAD case of Lyme …… To many lives in LIMBO and NO HELP IN SIGHT !!!!!! Peace
Their are no words strong enough to express the pain for your loss. I'm a 54 yr. old woman who also suffers with Lyme disease. Drs.ignore what Itell them and act like its nothig. They need to listen to the ones who are suffering and learn..how about that oath they took? It's evrything I can do sometimes to make it through a day at work. those who know and love me will tell you what an effect it has on you. headaches..tremendous pain..leg muscles completely locking up.Emotions are numb.If not for I would not make it. I pray there will be a break through soon.It's real…wake up out there.
Very few people actually die from Lyme disease. But some do die because their treatment fails to consider some other chronic and perhaps undiagnosed condition.
The Hippocratic Oath should begin with the statement "First, know thy patient.."
Condolence to Bryan's family and friends. You did your best…
I didn't know Brian, but I know his disease very well. Been suffering as he did for over 8 years now. Lost a career and quality of life. I am now disabled and spend my days on the internet educating others. RIP Brian.
Dear Mr. Bower,
My hearts breaks for the loss of your son Bryan and the pain that finally became too much for him to bear. I, too, am being treated for neurologic LD and in some way feel I can relate to such pain and despair. My heart goes out to you, and my thanks for your extension to help others as you can. Susan
Everwatchful, MANY, TOO MANY people DO die from Lyme disease! (not some other misdiagnosed chronic illness). 1 in 3 die from suicide because the pain of Lyme overtakes their body and mind. And YES many die from the LYME spirochetes that get into all the organs of the body, some causing irreparable harm. Lyme prefers the brain and heart so do not be misinformed that Lyme does not "actually" kill people. There are many families and death certificates that would say otherwise!!!
I've had it for 21 years. Misdiagnosed (no diagnosis, really – not for lack of trying) for 15. Been in treatment for 6. It's been hell!!!!! I'm so very sad for your loss. I've been there more often than I'd like to admit. There are a couple of reasons I haven't ended it: my husband and my son. I keep going for them, even when I don't think I can keep going. Though I was optimistic about healing back in 2005, when I first was diagnosed and started treatment (for Babesia), here I am 6 years later treating Babesia again. I am fortunate to have found a really good doctor – but I'm still sick. No insurance, either. Sometimes there's a light at the end of the tunnel, and sometimes it turns out to be the headlamp of an oncoming train.
Love and best wishes for healing to all who are suffering.
I am in tears because I feel this young mans pain! I have chronic neuro lyme and suffer everyday wondering if I can make it another week. days were I cant swallow food, cant breathe, numb brain,migraines from hell, severe sore throat, loss of voice, shoulder arm leg pain, blurred vision, ect.. symptoms are endless and always changing. I live in CT. and have been treated by lyme literate docs but without relief. Now I am also testing positive for autoimmune. I cant get two doctors to even agree on what to do. I often think about ending my life because its relentless and a nightmare. My only hope is they can find some way to cure this but I feel so hopeless! God bless all of the people suffering from this disease!