I am a (doting, loving) father. I am a (faithful, nightly cuddling, giddy) husband. I am an (intensely loyal) friend. I am an entrepreneur. I am a (math and computer) geek. I am a mentor and a mentee. I am an ultra marathoner. Oh, and I have multiple sclerosis.
Three years ago today, Courtney and I walked into a doctor’s office. We left with what we knew was the outcome. I was diagnosed with multiple sclerosis, specifically relapsing recurring multiple sclerosis. It started with an MRI to check some neck and spinal issues. It was followed by Courtney ordering a full with and without contrast MRI. It culminated with the official diagnosis that day.
This will come as a surprise to many, including some very close friends and family. Please know that is a reflection of the situation rather than my love for you. We told very few people in order to limit the exposure. We wanted to protect our family and our children. We wanted to ensure we had the answers to our questions which would be their question. We wanted them to see how it has not stopped our family. We wanted them to all be old enough to know rather than have 1 or 2 hold the secret. We wanted to be able to prepare them for what others may say, think, and whisper. Time gave us that breathing room and allowed us to not live on the margins. We only recently told our incredible kiddos.
Graciously share, and help people be the best they can be.
– Bob Cancalosi
Why am I talking about this now? Because I am tired and angry. And neither of those are symptoms caused by MS.
When I was first diagnosed, I researched everything I could about MS. It painted a picture of a very difficult life. It was a life spinal taps, canes, wheelchairs, hospital beds, MRIs, pain, etc. Many of these were covered by the phenomenal organizations working hard to cure MS. I understand why. These stories and images create emotion, and emotion drives people to open their wallets and purses. They are working to ensure this disease is cured.
This is a noble goal, and I commend everyone working on it. I have already benefitted from their relentless commitment and will hopefully benefit from a cure. These stories are also the realities for many with MS. That can never be forgotten. I repeat – these stories are the realities for many with MS and that can never be forgotten.
Yet, these stories were scary for me. These are all I found when I searched online. They might be driving energy and money to find a cure. This will create tomorrows for those with MS and their families. Yet, they were destroying my todays.
I am tired of only these stories, and I am angry at only these stories. These cannot be the only stories and experiences. I believe they are having another impact, and it’s not positive.
I have been blessed to meet and talk with numerous people with MS. Too many have given up their dreams, goals, and lives to this disease. Some of it was because of the symptoms and realities of the disease. Some of it was because the disease emotionally and mentally stole it. I met a woman who decided against having children because of her MS. She has not had a relapse in nearly a decade. My nurse coordinator gave up cycling months after being diagnosed. She still had the strength and balance to ride. She told me her fear of the disease paralyzed her.
Bow our heads and pray to the lord
Til I die I’m a fuckin’ ball
– Who Gon Stop Me by Kanye West & Jay-Z
Since my diagnosis, I have completed the Contegix investment by our private equity firm. (Small side note – our PE firm was extremely supportive of my decision to become public. I can not rave enough about the team and their character.) I took an 87-mile jaunt through Leadville that was cut short by a torn hamstring (not my MS). I have given a dozen speeches on tech, entrepreneurship, and the future of Saint Louis. I have become scuba certified and completed over a dozen dives. I have logged thousands of miles running. I have made coffee for my wife nearly 1000 times. I have hugged my children too many times to count.
I have bad days. The most common issue is pain, especially something known as the “MS Hug”. I had one a few weeks back on a Sunday. Courtney asked me how my day was as we settled into bed for the night. I shared I had been in pain most of the day. She seemed very surprised and ticked off a list of things I had done that day. From picking up donuts for the kids and a sleepover guest to running 15 miles to taking the kids to lunch, I was in pain.
She then asked why I didn’t just relax and take it easy. I told her that I was going to be in pain most of the day regardless of what I did or what happened. That day, like every single day, is a gift. I was not going to waste a gift. Pain was going to be there, and I had enough strength to push.
I strive to live my life with integrity, authenticity, and grit. I am going to continue living my life the same. Every second is a gift to make the world better for myself, my family, my community, and the world. I believe this is only achievable by going after impossible goals and helping others do the same. My MS is merely part my journey.
Thus, I am going to share more in the hope it helps those struggling with achieving their goals, including those with MS. I am going after Leadville Trail 100 in 325 days. I am working on my next venture to fix a century-old problem. I will walk my daughter down the aisle one day in the far-off future. I have huge goals for myself and my family. I am going to set sights on the impossible. Oh, and I have multiple sclerosis.
Also published on Medium.
I do not have the words to express all of the emotions, feelings and anger I feel. GOD bless you for all you have done. Now I understand why we are ????????? I will leave it open for you to fill in. Very proud of you! And, if what we have only what we have had, then God bless, you deserved better. I Love you and always will, my only Son.
You never cease to amaze me! Wow! Great post!
It's a blessing to read about hope! Hope requires integrity & humility & empowerment and those things all run on Grace! Thank you for sharing your journey! Thank you for being a leader. Prayers & Peace to you and your family---always. Kim L
My friend, peace be with you, but I am glad you are fighting. It give us all hope.
YOU ARE A VOICE OF INSPIRATION FOR ALL OF US, WITH OR WITHOUT AN ILLNESS.
I was diagnosed in 1996, before symptoms started. I am a pianist, suddenly unable to open my hands wide enough to get 8 keys. Nobody in my family had MS, nor my grandparents. Last year a cousin younger than me had MS, she is 40. I have primary progressive MS. I do not walk for the last 18 years, I was born in 1962. I have had 6 strokes and 1 heart attack.The Rebif (beta-1a) did very little to help me. The medical team did even less. After roughly five unending years of trauma in the family my MS developed into progressive. There have been many changes in the last 3 to 4 years. Many falls, many fractured bones, and three moves all in five years. I have gone downhill. Considerably. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment for Multiple Sclerosis, I started on MS Herbal Treatment from Kycuyu Health Clinic, the herbal treatment immensely helped my Multiple Sclerosis condition, i had huge improvements. My life is back. I Adhere anyone reading this to try natural approach.