Category Archives: Music
“My Only Consolation”
Written by Mary Jane Gonzales
Music and Performance by Lequita Hoffpauir
Think of the nervous system like a boombox up on your shoulder, 80’s style, playing sweet jams at all times. When the body is healthy, balanced, and running smoothly, the music playing from your system’s radio station are your favorite hits at the perfect volume, and your drop-in harmonies are totally on point.
When the nervous system is out of sync, those beats flowing from your station are tragic- like the song you hate most, on the loudest setting, playing over and over again. You can’t change the station, no matter what lengths you go to!
When you have a chronic neurological condition like Parkinson’s, Multiple Sclerosis, Complex Regional Pain Syndrome, or Postural Orthostatic Tachycardia Syndrome for example, it’s as though someone traded out your cool retro stereo system for an old broken down radio. You can play records on it sometimes, and it’s AMAZING to listen to any music again when you’re not in a flare or a relapse, but even then, all the records have scratches on them, so the music is constantly skipping and warped. The stereo’s wiring gets so bad over time that the record player doesn’t work anymore, and your radio only receives static.
A chronically malfunctioning nervous system is like listening to a broken radio stuck on static at full volume constantly.
When the “music” or the nervous system’s wiring is flowing properly from the brain throughout the body, pain receptors react to appropriate painful stimuli, telling us when there is a problem, and the pain subsides when the problem is resolved. When we have “faulty wiring” we may experience hypersensitivity to touch, sound, light or even smells so intense that it can cause a severely painful reaction. Think of raw wires on the end of electronics sparking and flaming just to the slightest touch.
The malfunctioning nervous system might react to normal stimulus with severe increased pain, increased stress may cause a seizure, or in others severe tremors and body spasms may occur. For some with POTS, (Postural Orthostatic Tachycardia Syndrome), a loud noise or changing positions can cause the body to completely check out, going into fight or flight mode, and beginning to pass out, or passing out completely.
Going back to the stereo analogy, imagine being invited to a party where the DJ had a broken stereo system, playing static on blast or his stereo catching fire in front of everyone. That’s exactly what it’s like to live with a chronic neurological disease…well, sort of.
Meditation, spirituality, organized religion, trying to improve sleep, and other stress reducing efforts are ways we try to turn down the knob on the stereo. Medications, alternative therapies, eating well, surrounding ourselves with positive support are all ways we can continue turning the knob down little by little. The static kicks out on full blast each day, and we use our tools to adjust or manage the incoming noise levels. We may not have the ability to turn the station away from the blaring static and back to music, but we can attempt to turn the volume down so it isn’t blasting constantly every day.
Invasive and surgical approaches to treating neurological diseases are like kicking the side of your stereo to try to get it to work again. Jolting it hard enough may coax the system to finally play music once again, or you might kick it so hard that you completely break your stereo. For many, surgery and invasive treatments are worth a risk of causing additional problems for the possibility of returning to good health and functioning.
That’s my super-scientific explanation of the nervous system, and how it’s exactly like a boom box. So…. this analogy might not end up in a medical school text book, but if it helped anyone better understand an aspect of neurological disease, or put a smile on your face, then virtual high fives all around!
If you have a passion for something that you can no longer do because of physical impairment, do you truly stop loving it? Then why do we say: “I used to love to…”?
This is one of the most heart-wrenching parts in coming to terms with disability. When you go to say or write the thing you’ve always loved to do, and you realize it is suddenly in past tense. It doesn’t stop twinging your heart each and every time you have to say that you USED to love hiking or taking long road trips. But you come to terms with saying it in past tense. I did. Reluctantly, my old life of passions and dreams were exchanged for my new life of “used to love” and “always enjoyed”. One by one, I locked away those pieces of myself I no longer had physical access to.
Then, a few years ago, my health became much worse. I went from moderately mobile with chronic pain to bed bound with a variety of chronic illnesses and chronic pain conditions. Now, I’ve found myself cutting out all of the rest of life’s pleasures from the list of things I love. How can I say, “I used to love music” or “I used to enjoy singing” or “cooking used to be one of my passions” when these are all lies!
The truth is, I am still passionate about all of these things! Just because I cannot participate in them actively, does not mean the joy has not remained. In fact, when my brain condition and ongoing migraine becomes insufferable, even with no sound tolerable, getting lost into a silent song within myself has at times been my only reprieve from the unrelenting pain. My instruments now live in cases in shelves above my bed, or tucked away in closets. My voice has not echoed against the wall in song for years, but every day an instrument plays… A song cries out loudly inside of me. A different arrangement every single day, melodies no one hears but myself- and this music will not stop just because my ears cannot tolerate sound! No pain, no disability, no illness or mental destruction can take that music away from me.
Just because parts of my flesh weaken, and I am forced to make adjustments and accommodations to that- doesn’t mean that my passions and loves should crumble along with my flesh. There is nothing wrong with how much I desire. I refuse to shut parts of myself off just because I might FEEL more to live with passion.
Even though I can no longer cook, do I not still love it? I don’t need to be standing upright at a stove or walking the isles of a grocery store to envision a new recipe. I can visualize the food in front of me. I can imagine the flavors of a recipe in my mind’s eye. Is this not the passion for cooking still alive inside of me? Even when my POTS makes eating the last thing I want to do, I can still escape my pain through the simple joy of imagining myself cooking. Why would I ever say “I used to enjoy cooking” when that zeal continues to live strong inside of me?
Though pieces of my body may break, though my mind might continue to slow, though things I am able to do may drift away from my grasp, I choose not to allow that which I love break away. I choose to hold my passions that much closer to me.
And for those I let go so long ago, I would like to reclaim them. I ask that in comments, you consider reclaiming some of your own that you know you will always love forever.
-I have always loved to travel.
-Hiking is a love of mine.
-Dancing will always be one of my passions.
Thank you to artist Fensterer for allowing your artwork, “Lost Between the Sounds” to be featured. This was the only image I could imagine for this article, as his powerful work helped inspire it. Check out his other powerful images at DeviantArt.
If you have ever been to a church where they still sing occasional hymns, then your heart has been uplifted by the works of Fanny Crosby. She was a blind woman, an activist, a writer, poet, teacher, humanitarian, and possibly, a chronic illness and depression survivor. Even though she made history by writing nearly 10,000 hymns- more praise songs than any other person, many don’t know the story behind this incredible woman and survivor.
Shortly after her birth in 1820, fever from a common cold caused swelling in Fanny’s eyes. The treatment the doctors used trying to bring down the swelling caused permanent, irreversible blindness. Fanny never resented that doctor, and later, wrote a poem about her blindness being her gift.
Growing up, Fanny was a spirited happy child, despite living in darkness. Her family had roots in the Puritan religion and her grandmother put an emphasis on her Bible education. Young Fanny took an interest in music and creative writing, and she wrote her first poem at age 8. You can already see her early knack for rhyme and rhythm:
Oh what a happy soul I am!
Although I cannot see,
I am resolved that in this world
Contented I will be.
How many blessings I enjoy
That other people don’t!
To weep and sigh because I’m blind,
I cannot, and I won’t!
After she graduated college, Fanny spoke at multiple campaigns to raise awareness for blindness education, she was a speaker in front of Congress for political legislation, and she even befriended Grover Cleveland! Even though she had gained popularity in her political writing, was a noted speaker, and was becoming a recognized poet (lovingly called “the blind poet”), in time, she said that she felt an emptiness in this work. This is when Fanny Crosby began focusing more on her spiritual path and writing hymns and praise poems which have touched so many hearts.
She shifted her focus to helping others as she sought a more meaningful life serving the Lord. Just like when she was younger and volunteered teaching blind prison inmates, Fanny set out to help at homeless shelters and was a regular patron at missions all over New York City. Her heart was with those less fortunate; she gained a new type of prominence among a different class of people for being a compassionate, caring soul during a harsh time in America. When Cholera broke out in New York City, she turned her focus to caring for the sick and worked tirelessly at the hospital near her home in Brooklyn. She was very passionate about this effort and many of her songs are inspired by this period in her life.
Fanny and her husband had one child, a daughter, who tragically died in infancy from Typhoid Fever. One of her most popular hymns, Safe in the Arms of Jesus was written just after the passing of her daughter:
Safe in the arms of Jesus,
Safe on His gentle breast,
There by His love o’ershaded,
Sweetly my soul doth rest.
After losing their only child, her husband became a recluse. Fanny began spending most of her time in the church and wrote the majority of her hymns and Christian poems with her minister and often, her co-writer. Over and over, there are records of Fanny not feeling well, being “depressed,” worn down, and having to take time away for health matters. It seems as though this was a regular occurrence over the course of her career. Saying she had a Chronic Illness or a depressive disorder is just conjecture, but it does appear that she dealt with ongoing health and emotional struggles throughout her life. Nevertheless, she held tight to her faith and was a constant source of inspiration to those in her life. Through her encouragement in helping others less fortunate and sharing her very personal poems about her spiritual walk with the Lord, Fanny was always willing to give of herself. She STILL is a source of encouragement and hope to anyone who sings or reads one of her writings.
Fanny Crosby’s blindness did not hold her back from pursuing her passions and using the gifts she was given. She once said that she was happy to be blind so that the first sight she would ever see would be the face of her Savior in Heaven [para]. She had so many hurdles in life beyond her impaired vision, but she continued her writing and always sought out new ways she could be a blessing to others in need of help. She made history with her words. Through her music, she continues to open hearts, and through her lyrics, souls come alive. She is an inspiration to me as a woman, as a writer, and as a disabled person. Fanny Crosby made history with her works of praise songs, but through her actions, she left behind a legacy of love.
Blessed Assurance (Chorus)
This is my story, this is my song,
Praising my Savior all the day long;
This is my story, this is my song,
Praising my Savior all the day long.
Pass Me Not Oh Gentle Savior
Woke up with this song weighing heavy on my heart and in my head. Just because I cannot listen doesn’t keep music from playing inside of me. If you are like me and have trouble listening to music, the video includes the lyrics.
The second verse: “When I awoke today suddenly nothing happened.
But in my dreams I slew the DRAGON” plays into living with chronic illness and life now from a bed. But just as Colin Hay’s “love” keeps telling him to let the sun shine in and keeps reminding him there is already a plan; this is the same knowledge I have that God has a plan for me also. Not just in the future, but right now… I’m living it. My real life has already begun- even when it’s hard to feel it.
Sometimes we keep waiting for everything good to start up, and our purpose is right there in front of us. God bless you.