Knew But Didn’t Know

I was born with normal feet until age 2 when my folks notice my foot dropped and then when I was 5 till about age 13 my parents took me to N.I.H in Bethesda MD. to be seen as my father was the first in his family history to have it. Me being the 4th and last child I was the only one to have it. (Thank God) There they did tests that to this day is burned in my memory. The closest I could relate these tests were like I was a character in Ryan Murphy’s “American horror Story. The tests were primitive and as a child of 5 to have nerve conduction tests alone in a room, stripped to my underwear on a mettle table being shocked every 7 seconds completely alone in a room with one other person with whom I didn’t know is something I will never forget. My last memory was hearing a doctor telling my mother that I would never play sports which told me “No I wasn’t going to be told what I could not do and became really good at tennis. I didn’t see any symptoms till I was forty when things began to take place and now today as I turned 60, I can walk but with difficulty and pain from tightening my back muscles to walk and not fall down which I often do. So I will continue to walk until I can’t and hope for the best.

and then one day

one day many years ago the index finger wouldn’t go in my pants pocket. that’s how it started. up until that point i hadn’t given any disease a thought. now thirty years later i guess you could say i’m lucky. i have a lot of atrophy and braces to walk. recently my quads started to go. all i can say is people don’t know how tough we are.

Music is my Medicine.

A lover of music and a student of rhythm since birth, Sonny’s rhythmic and harmonic explorations have stretched over many styles and genres over his 34 year career primarily performing as tapper, slapper, banger and player of all things drum-able in his youth, including such surfaces as table tops, pots, pans, garbage cans, back of the car head rest and heads of siblings.

Later, he went on to refine his approach as percussionist and drummer for a variety of rock, soul, blues, jazz, folk, funk and freestyle; world-beat fusion, rhumba flamenco, african roots, dance, trance; orchestral and marching band ensembles. Studying piano and percussion with a variety of teachers and masters for over 15 years. whilst performing, competing and facilitating in numerous festivals and world championships. Not to mention his love for vocal percussion (Beatboxing) which he loves to teach and performs wherever he goes. Today, Sonny enjoys drumming, travelling, writing, speaking publicly, all things consciousness, inner and outer space and singing with his guitar offering a beautifully enchanted blend of spirit and soul, performing in both English and Spanish as well as chanting in the ancient Sanskrit language from India.

Sonny shares the songs life has passed down through him in a healing heart-centered experience of psychic/mystic folk and musical prayer.

Sonny Davis was born in Calgary, Alberta Canada to parents of Irish and German decent. At age five, shortly before his parents separated, he was diagnosed with a rare form of Muscular Dystrophy known as CMT or Charcot Marie Tooth disease. Aside from experiencing this degenerative nerve and muscle disorder; greatly effecting his arms and legs; with the help of certain aids such as braces, canes walkers and wheelchairs, Sonny’s youth was chalked full of belief bending and mind altering events that would contradict the opinions of his family, doctors and peers, including himself and his mother, who was determined to get him involved in as many activities as possible growing up, such as sea scouts, marching band, athletics and wheelchair racing.

Sonny claims doctors told him at an early age that the type of MD he had was life threatening, and that he wouldn’t live to see age 30. This would later be proven wrong. Yet his condition would remain degenerative in nature, which in disabled athletics, time and again fell into an ambiguously gray area when it came to classifying him as an athlete in wheelchair racing.

In a heroic effort to overcome the fears that accompanied this finite belief; leading up to his 30th birthday and shortly after having been revoked of the athlete card he needed to race for team Canada in the 2008 Beijing Paralymics; Sonny began to consider his life and what he felt was his deepest purpose for living. Drawing from such a deep well of inspiration over a 30 year period, Sonny wanted to give back in a way he thought would inspire and honour not only his body but his family, friends and his childhood heroes.

And just in case his doctors were right, he decided he needed to go on a long trip.

He swiftly organized a small humble pit crew and began rolling wheels off Canada’s west coast across the country in a support campaign to raise money, awareness and above all – inspiration for Muscular Dystrophy. After a demanding start from Mile zero in Victoria BC, and many a stop to continue his fund raising efforts, as well as the sudden passing of his father along route, Sonny and chair called journeys end half way in Thunder Bay Ontario after three months and nine days of pushing his hand cycle wheelchair on the shoulder of Canada’s #1 highway. His dream was to go coast to coast, but with the few set backs experienced he was forced to recalibrate the end location and arrival time.

Soon after, Sonny was asked to join the Man in Motion – Rick Hansen on his 25th Anniversary relay celebrating 25 years of spinal cord injury research and the original Man in Motion odyssey. On this 25th Anniversary, it was 7000 difference makers from across Canada participating in a coast to coast relay AND Rick needed athletes. Endurance athletes to be exact.

What that meant was Sonny had been given another chance to fulfill his trans-Canada dream, only this time he would be travelling in the opposite direction from the east coast, west towards Thunder Bay. Sonny shares his tale with an inspiring talk about overcoming fears and how he came to develop his own personal power and “whatever it takes attitude” in the midst of any so called limitation.

Sonny, right from his early years, has always been a source of inspiration. By sharing his story imbued with courage, hope and bravery, Sonny trusts others will be inspired and motivated to do whatever it takes to realize their full potential of self love and mastery. To Sonny, this is ‘involution.’ Which, among countless other recordings; Sonny aptly gave name to his debut album. Available at www.sonnymusic.net

For overcoming adversity, at the age of 13, he received one of the highest awards in Canada that a scout can receive presented to him by the Governor General Ray Hnatyshyn. He was the Alberta Junior Champion for 800m, 400m and 200m in wheelchair racing. He joined and competed and travelled all over North America for 7 years with a Marching Brass Ensemble playing percussion instruments in their pit section.

“I don’t know why I have this disease but I know I can do more with it than without it.”

Sonny has definitely lived up to that remark and continues to follow the path of music and sound, sharing his light, love and healing codes wherever he goes.

“SONNY” on Facebook and YouTube
Video: https://youtu.be/6g3q3GJz99M

I love someone with CMT to the moon and back!!!

I was raised by a proud, strong, hard working Father, who also happened to have CMT. He was so resilient and brave I never realized he was “disabled”, he never let CMT stop him. When my son was diagnosed in 2014 at the age of six I was told he had peripheral neuropathy from his elbows to his fingertips and from his knees to his toes, that he needed to be casted for Afo’s and begin physical therapy. I was overwhelmed, shocked, sad and determined to learn all I could about CMT so I could help him. On the ride home all he could talk about was how he wanted to help others with CMT. I got online to research, my search led me to the CMTA. They were looking for volunteers to host walks to raise money to find a cure. I asked my son if he would like to host a walk In our area. He said absolutely! He was excited to be a part of finding a cure, to provide support and by the possibility of meeting other children with CMT. We signed up and have hosted 3 walks. Each walk has been such a blessing to our family and an honor to host, as we are not only walking for my son but for my father, nephew, sisters, grand mother, aunt, uncle and many more family members, as well as friends and strangers. I have also been blessed to have attended a CMTA conference. I learned so much and I was embraced by the most upbeat, determined, wonderful people I have ever met. Unfortunately there aren’t many people in our area, let alone children with CMT, My son was still left with a longing to meet other children. Last month his dream came true when he attended Camp Footprint. He spent 5 days learning and having fun with kids just like him. I don’t know where our CMT journey will lead us from here, but I do know that we will continue to do all we can to raise awareness, delay progression, find a cure, and live our best lives.

perspective changes everything. so does CMT

At 22 years old, I never imagine I would be in physical therapy learning to walk again. I was an avid athlete, hiker, and camper until surgery slowed me down. I’m getting back on my feet now, but I have learned a lot in the last 9 months. CMT has shifted my perspective, it has changed my life. And not in the negative ways that you might assume.

Not going to break me.

I am 65 years old and was diagnosed in my mid 40’s with CMT. My mom had it, my younger sister has it as do some of her children. I am an artist and sculptor , a professor and union activist. Slowly I am losing my ability to walk. I miss swimming, biking , running ,all the things that we take for granted. Some days the stairs in my home might as well be mountain to climb. My hands still grasp , I still can create, but have become clumsy and fall frequently. But I pick myself up, heal the numerous broken bones and keep on going. I try to pack as much as I can into my life always knowing that tomorrow may not be the day I can walk up a hill, over a cobbled stone or pick up a glass of wine or a hammer and chisel. The fatigue that comes with the disease and the pain can’t be explained to others. It really is kind of lonely. There are good days and bad days. On a bad day I have trouble breathing and an short winded . I know it is weakening my diaphragm. And yet I have been lucky , lucky to know what is to come and I try to do all the things on my bucket list now . They say one can never live until you know you are going to die . There is a certain pure truth to this. My life is full, but lately I have found myself pulling back, cutting down my obligations , clearing up my life’s messes for I know what awaits me . I watched my mom. I saw her loose her ability to lift her legs, search for solutions for the pain and depression, I saw her hands curl until see could not hold the books she loved so much, hold onto a spoon, or push a button on the phone . It scares me but still I persist . This damn disease is not going to beat me . I pray that my grandchildren don’t inherit it, though I know my life has had meaning and I have contributed as they will. The disease does not define you , but it sure buts barriers in our way. Please help us find a cure . One in every 2500 Americans have a type of this disease. The disease ,CMT , is one that some doctors, nurses, and therapist don’t know about . But you could , and you could help by just spreading this message. Or come walk with me in Parkland Florida in October . Walk for a cure . Give us hope and support. Thank you.

My Boys with CMT

Approximately 3 years ago we had concerns about my son, Benji’s, gait and the way his feet turned in at the ankles. We saw two physicians before getting a referral to a specialist and ended up with full testing and consultation at #mayoclinicrochester where he was diagnosed with #charcotmarietoothdisease. Last year we began noticing signs in our other son, Mikey, and had to advocate for a referral for him as well and were eventually told he has the same condition. The boys have always struggled with balance and coordination and although it has been difficult at times to accept and cope with, it has shed some light on many things, yet we also still have a lot of questions and continue to seek answers and treatment and the progress has been slow. We are still seeking a diagnosis for the type the boys have and they’ve had numerous doctor appointments, lab work, physical therapy and painful tests, but we are getting closer to a full diagnosis. Even though the condition and medical care has presented challenges for them, the boys have remained strong. I am grateful as I know things could always be worse. One of the worst things, as a parent, is to see them struggle and the unknown of how this progressive condition will affect them in the long run. This month is #cmtawarenessmonth and I am doing my part by sharing our story on Facebook and encouraging others to check out the following link for more information if contact me if they are curious. https://www.hnf-cure.org/charcot-marie-tooth-disease/ #cmtgamechanger #myCMTstory

I won’t let my disease stop me.

I’m an active duty Soldier. In 2014, my right foot began to give me a lot of trouble. Every step I took sent the sharpest pain up my leg. It felt like my tendon was being stabbed constantly, but I’m a Soldier so I tried to stick it out. After months of being in pain now in both legs, I was finally sent to a specialist. It was there he ran test and I found out I had CMT. It’s been a long road. I’ve had two surgeries on my feet, my spine has developed scoliosis, 4 compound fractures on my t5. Living in constant pain. Again, though I’m a Soldier. This is my life. CMT doesn’t get to define me or take away my dreams. I will fight for my life. I will continue to strive and show my body I’m in charge. I’ll reach my dreams. CMT is my disease, it is not me.

The Discipled Leader – Choose

Jerry Lewis, the famous comedian, actor, and philanthropist helped create a telethon that annually raised $60 million to find a cure for muscular dystrophy, a “hereditary disease characterized by progressive wasting of muscles.” Because of his partnership with the Muscular Dystrophy Association, those afflicted with the disease became known as “Jerry’s Kids.”

If you’re old enough, you likely know all this, but do you know why Lewis first got involved with the MDA? As a child, Lewis frequently made fun of the way a fellow student walked. He didn’t know that the student had MD. While mocking the student one day, Jerry didn’t recognize that the butt of his joke was in the room. Lewis made eye contact with the student and realized the ridicule had deeply hurt him. This experience profoundly impacted Lewis, and he vowed to help find a cure for the debilitating disease.

I remember watching the Jerry Lewis telethons. The fundraisers were televised on Labor Day, lasted twenty-four hours, and were broadcast on every one of our four network channels. Celebrities entertained the TV audience and solicited donations. I was often compelled to go door-to-door and collect money because of Lewis’s appeal. Every year, I’d turn in my collection at McDonald’s and receive free French fries. What a great reward for a kid! Little did I know while growing up that I shared a similar condition as those for whom I was raising funds. I was one of Jerry’s Kids.

I discovered that I’d inherited a genetic disease called Charcot-Marie-Tooth disease (CMT), a neuromuscular disease similar to MD that affects the peripheral nerves, those nerves outside the brain and spinal cord. The disease causes muscle weakness and atrophy and some loss of sensation in the feet, the lower legs, the hands, and the forearms. CMT symptoms may include foot deformity (very high-arched feet), foot drop (the inability to hold one’s foot horizontal), a “slapping” gait (one’s feet slap on the floor when walking because of foot drop), loss of muscle in the lower legs, numbness in the feet, and difficulty with balance. I am not alone. More than 2.8 million people, or one in 2,500, are affected worldwide.

Why do I share this with you?

I’ve experienced great physical and emotional adversity because of my condition. For example, I enjoyed sports in my youth. I loved to play basketball, football, and tennis. Growing up in Colorado, I also loved to ski. I wasn’t always the fastest on the court, field, or slopes, but I gave it my all. I knew if I couldn’t outrun someone, I could outhustle him.

In my junior year of high school, I noticed that my feet and ankles were becoming weak. I constantly twisted my ankles, especially my right one. I noticed I had very skinny legs, my feet had very high arches, and my balance wasn’t steady compared to other kids. I was embarrassed by my lack of physical stature and ashamed of my condition.

To stabilize my right ankle, I had tendon transfer surgery. The doctor took a tendon from the top of my foot and attached it to the side in an effort to limit the ankle’s range of motion. I went through physical therapy and was back playing sports regularly. Skiing was difficult because my foot didn’t fit well in ski boots, and I could no longer do it comfortably—a real bummer! While my ankle was strengthened, my condition was unchanged.

Fast-forward to my early career days. My disease progressed, and I noticed my balance becoming less stable. I remember a sporting event I attended representing my company where I was overseeing an experiential marketing event. While standing with a group of athletic department folks, I lost my balance and stumbled around a few times. After someone saw me stagger, that person concluded I was drunk and started rumors about me within the athletic department. It was ten in the morning, for goodness’ sake! I was offended, and I was ashamed that I couldn’t even maintain my balance without stumbling.

I could go on and on regarding CMT and its progressive nature. Today, I walk with a limp because of the tendon transfer surgery, have a hard time walking barefoot on hard surfaces, and am constantly aware of how I appear to others. CMT is a daily reminder of my weaknesses—physically and emotionally. I wish I didn’t have this challenge. There are days I don’t want to be joyful.

I can relate to the apostle Paul. He struggled with an ailment and asked God three times to relieve him of it. Christ’s response was, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:9). Paul went on to write, “Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong” (2 Corinthians 12:10).
Similarly, I choose to rejoice in my struggle because it always leads me back to Jesus. I can truly say that, through the power of the Holy Spirit, “when I am weak, I am strong.” I don’t blame God. When I struggle, I talk to the Lord about my resentment and shame. I don’t concentrate on my circumstances; I focus on him. He is my everything, my strength, and my shield. He is the source of my hope, joy, and strength. I know he loves me and desires the very best for me. How?

Because I know that my identity is not in being one of Jerry’s Kids but in being one of Jesus’s kids.

My struggle forced me to identify talents, skills, and abilities other than physical ones. For instance, I developed the ability to effectively communicate through writing and speaking. I discovered long ago that something special happens inside of me when I speak in public: I feel God’s pleasure. I find great satisfaction in connecting with an audience and moving them to action.

In the midst of my struggle, God has blessed me way beyond what I deserve. My life is overflowing, and I am so blessed with a wonderful wife, kids, extended family, friends, and career. I have an attitude of gratitude that swells up to thankfulness and praise. The God of the universe loves me, and he’s working in me. He’s made all the difference.

What a joy!

How about you? Can you say the same? Are you experiencing God’s joy and living an abundant life in the midst of your adversity? If not, what’s holding you back?