The Power of Prayer and Support
- Indie-Folk singer Sufjan Stevens, who was recently diagnosed with a rare neurological disorder called Guillain-Barr syndrome and is working to regain his strength and get back to life as he knows it, has dedicated his new album Javelin to his beloved late partner.
- According to the National Institute of Neurological Disorders and Stroke, Guillain-Barre syndrome (GBS) is “a rare neurological disorder in which your immune system mistakenly attacks part of the peripheral nervous system, the network of nerves located outside of the brain and spinal cord.”
- SurvivorNet experts say a support group often filled with close family members or friends helps you navigate a health battle or a cancer journey.
- Dr. Zuri Murrell, a colorectal cancer surgeon at Cedars-Sinai Medical Center, told SurvivorNet that his patients who live with gratitude tend to handle treatment better because this attitude is one way to stay mentally healthy.
- Patients are encouraged to seek a support group, talk to a mental health professional, and keep their support team connected with their care team.
The Indie-Folk musician, who is working to regain his strength amid battling Guillain-Barr syndrome (a condition when a person’s immune system causes harm to their nerves, recently took to social media to announce his new album Javelin was put out in memory of Richardson.
Read MoreView this post on Instagram
He continued, “I know relationships can be very difficult sometimes, but it’s always worth it to put in the hard work and care for the ones you love, especially the beautiful ones, who are few and far between.
“If you happen to find that kind of love, hold it close, hold it tight, savor it, tend to it, and give it everything you’ve got, especially in times of trouble. Be kind, be strong, be patient, be forgiving, be vigorous, be wise, and be yourself. Live every day as if it is your last, with fullness and grace, with reverence and love, with gratitude and joy. This is the day the Lord has made. Let us rejoice and be glad in it. Thank you. I love you. XOS”
Expert Resources For Survivors, Caregivers, and Anyone Battling Disease
- Finding the Support You Need to Heal During Cancer Treatment
- I Wanted to Be Me Again, But I Also Needed Their Help — Finding That Support System
- A Cancer Survivor’s Ode To Friends and Family: “My Support System Helped Me Heal”
- 8 Ways to Support Someone Battling Cancer: The Inspiring Story of Levon Helm
- ‘Tell People What You Need”– Dallas Ovarian Cancer Survivor Terri Moore On The Value of a Support System
Stevens’ tribute post to his beloved Richardson comes just weeks after the multi-instrumentalist announced he had been diagnosed with a rare neurological disorder called Guillain-Barr syndrome.
It’s great to see the impressive artist doing what he loves and still getting his music out, amid his health struggles, as well as taking time to remember someone special, who had a huge impact on his life.
View this post on Instagram
In a recent post, offering some insight into his rehabilitation process, Stevens offered some words of optimism for himself and others, writing, “You can do it. I can do it. We all can do it. Let’s heal and move and improve together. Pray for peace and joy and strength.”
“It’s National Rehabilitation Awareness Week (Sept. 18-24). At least I got the timing right. STAY POSITIVE. I love you,” he wrote, alongside a photo of his legs inside what appears to be a rehab center, with the words “baby steps” shown on the photo.
Stevens, whose song “Mystery of Love” was nominated for both an Oscar and a Grammy, first spoke about the rare disorder he’s living with in a Sept. 20 post.
The post, which was initially shared to the singer’s Tumblr, featured a photo of himself sitting in a wheelchair. Alongside the image, Stevens wrote, “Hi Friends. Quick update on my life. I’m very excited about having new music to share, but I just wanted to let you know that one of the reasons why I haven’t been able to participate in the press and promotion leading up to the release of Javelin is bc I am in the hospital. Last month I woke up one morning and couldn’t walk. My hands, arms and legs were numb and tingling and I had no strength, no feeling, no mobility.””
He further explained, “My brother drove me to the ER and after a series of tests—MRIs, EMGs, cat scans, X-rays, spinal taps (!), echo-cardiograms, etc.—the neurologists diagnosed me with an auto immune disorder called Guillian-Barre Syndrome.”
Stevens explained how treatment “luckily” exists for this rare disorder, saying, “They administer immuno-hemoglobin infusions for five days and pray that the disease doesn’t spread to the lungs, heart and brain. Very scary, but it worked.”
View this post on Instagram
He revealed he spent approximately two weeks in medical-surgical nursing “stuck in a bed” while his doctors did everything possible to “keep me alive and stabilize my condition.”
The Michigan-born artist, who was ultimately transferred to acute rehab, where he is recovering and getting stronger, is very grateful for the medical team that helped him, and insisted, “I owe them my life.”
“I am now undergoing intensive physical therapy/occupational therapy, strength building etc. to get my body back in shape and to learn to walk again,” he said, “It’s a slow process, but they say I will ‘recover,’ it just takes a lot of time, patience, and hard work.”
What is Guillain-Barre syndrome (GBS)
According to the National Institute of Neurological Disorders and Stroke, Guillain-Barre syndrome (GBS) is “a rare neurological disorder in which your immune system mistakenly attacks part of the peripheral nervous system, the network of nerves located outside of the brain and spinal cord.”
The institute adds, “GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving you unable to breathe independently.”
Thankfully, even the most severe cases of GBS are treatable and a significant portion of people with the disorder eventually recover. However, some form of weakness may still persist after recovery.
“GBS can increase in intensity over a period of hours, days, or weeks until certain muscles cannot be used at all and, when severe, the person is almost totally paralyzed,” the institute adds. “In these cases, the disorder is life-threatening—potentially interfering with breathing and, at times, with blood pressure or heart rate.”
Symptoms of GBS include:
- weakness
- sensational changes
- unexplained sensations, like tingling in hands or feet
- difficulty with eye muscles and vision
- trouble swallowing, speaking, or chewing
- feeling of pins and needles in the hands and feet
- pain, possibly severe, at night
- coordination trouble and unsteadiness
- abnormal heartbeat/rate or blood pressure
- difficulty with digestion and/or bladder control
Seeking Care at a Comprehensive Cancer Center
Building Support, Staying Connected
If you were recently diagnosed with cancer or a rare disease, like Sufjan Stevens,, you likely know about the wide range of emotions that news can bring.
This is one of the most difficult phases of a health journey to overcome.
However, it’s during these early stages that a team of supporters can be most useful. Your supporters can be made up of close family members and friends. Your support group can also be filled with people from outside your inner circle.
“Some people don’t need to go outside of their family and friends circle. They feel like they have enough support there,” New York-based psychiatrist Dr. Lori Plutchik tells SurvivorNet.
“But for people who feel like they need a little bit more, it is important to reach out to a mental health professional,” she added.
One of the benefits of having supporters includes helping alleviate stress and anxiety following your diagnosis. Supporters can also help advocate for you during treatment.
Sometimes it is not always easy to share news you have cancer even among loved ones. In instances like these, you can seek out a trained professional to center your support group around. Mental health professionals can help fill this space because many are trained to help you navigate your cancer treatment.
“Make sure that the mental health professional that you work it is reaching out, with your consent, to the rest of your team, to the oncologist, to the surgeon, it can also be helpful to reach out to family, friends, and any other caretakers that may be involved in the person’s treatment,” Dr. Plutchik said.
WATCH: Seeking support after a diagnosis.
Dr. Plutchki recommends cancer patients consider the following three steps to get the help you need after a diagnosis:
- Step #1: Seek additional support if you need it (this could mean speaking to a mental health professional or seeking out a support group)
- Step #2: Look for a mental health professional who has experience helping people in your situation.
- Step #3: Keep your care team connected this may include your friends and loved ones, your therapist, and the doctors who are treating your cancer.
How Faith Can Help in Your Cancer Journey
Having faith can help keep your spirits high even during times of struggle. It’s something SurvivorNet experts also say helps cancer patients during their cancer journeys.
New York City Presbyterian Pastor Tom Evans previously spoke with SurvivorNet about the importance of finding ways to cope with the complex web of feelings you may be experiencing after a challenging health diagnosis, such as cancer.
“it’s important to reach out in a simple prayer to God, even if you’ve never prayed before, you don’t know what to say, a heartfelt plea, ‘God, help me, be with me,'” Pastor Evans told SurvivorNet.
“You can reach out to God, and you can reach out to people, your friends, and family, and say, ‘I can’t do this on my own. I need you.’ It’s in that willingness to be open and to receive that we can find something deeper that we never would’ve encountered without this hardship,” Evans continued.
WATCH: How a breast cancer survivor relied on her faith to get her through her journey.
Research also backs up the idea having faith helps a cancer patient’s overall prognosis. In a study published in Cancer, 69% of cancer patients say that they rely on faith throughout cancer treatment, and use prayer as a way to call for good health.
Researchers who studied the relationship between praying and life expectancy in cancer patients also found the power of prayer helps withstand pain and suffering.
SurvivorNetTV produced a special episode, “Turning to Faith,” where we followed the journeys of four women and how they turned to faith to get them through their diagnoses.
For some of these brave warriors, turning to faith can be a great way to keep spirits high when cancer starts taking an emotional and physical toll. For more on the impact faith can have on a cancer journey check out the episode.
Finding Gratitude During or After a Health Battle
Many cancer patients find a sense of gratitude on their journeys. To be grateful means being thankful for what you have and showing appreciation for it. It’s a mindset that helps people going through tough times and our SurvivorNet experts encourage cancer warriors and their loved ones to practice gratitude.
Dr. Zuri Murrell, a colorectal cancer surgeon at Cedars-Sinai Medical Center, told SurvivorNet that his patients who live with gratitude tend to handle treatment better because this attitude is one way to stay mentally healthy.
Cancer battles are stressful but finding things that you are grateful for can help manage the stress. Stress and anxiety can lead to physical issues, and practicing gratitude can help get both under control.
“The patients who do well with cancer, they live life with that kind of gratitude, but in terms of everything,” he explained. “They’re grateful, not for cancer, but they’re grateful for an opportunity to know that life is finite.”
Contributing: SurvivorNet Staff
Learn more about SurvivorNet's rigorous medical review process.