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When Shit Hits the Fan, Get Busy Livin’

Brian DeMatteo was on cloud nine. He had recently sold his tech company and was semi-retired after years of working too hard. Pondering his next move, Brian walked along a beach – familiar territory, as he was an avid surfer. Life was good and full of possibilities, but tragically it ‘turned on a dime’. The following day Brian woke up with a pain in his back and burning and tingling sensations down his legs. The pain quickly became overwhelming as he made it downstairs. Barely able to make it back upstairs, Brian fell into bed. The jolt woke up his fiancée. Brian could not move from the waist down as he looked at his love in terror.

The first couple of days in hospital was overwhelming for Brian. “I was scared and wondered if this was the end of my world”. He knew he had to get a grip and concentrate, to reset his attitude dial from diminished to determined. “I prayed”, says Brian, “God, just give me an inch, and I can handle the rest”. He knew he had to “get busy livin’”. With a laser focus approach, Brian did everything the therapists instructed and more. The most likely diagnosis of his condition was “surfer’s myelopathy” and he became a model patient, working hard, step-by-step in rehabilitation, to climb out of his situation. Each small goal achieved gave Brian hope, and eventually, hope transformed into freedom.

Brian, an engaging, outgoing guy, wants others to know they are not alone in their rehabilitation. He is also open about the daily pain he, and many others, face each day, which is not uncommon after neurological injuries. In his book, I’m Not a Leg Man, Brian documents his 24-month rehab experience. In dark times when pressing on seems impossible, Brian feels that using humor to lighten painful situations is essential. It reduces stress and makes things less threatening. It helps one to keep going when times are tough. He reassures the reader through empathy and shared experience that laughter can help one stay more resilient and adaptable after traumatic experiences. He also makes it clear the best purchase he ever made since his accident is SideStix. It is all about survival techniques that allow one to cope and remain strong. Equipment is part of that approach. Brian lives a good life, pragmatically learning to adapt, being creative in the kitchen, choosing to laugh and using SideStix over the ‘bumpy’ bits of life.

Tell me about your worst experience that taught you the most.

I’m going to have to say the morning it happened. I felt great. I wanted to go surfing with my kids, or play tennis with them, whatever they wanted to do. I had this strange pain in my back, and it didn’t seem like it wanted to go away. I went downstairs to take some Tylenol, and all of a sudden I felt this heat from my right leg, through my groin, to my left leg. I felt like there was bleeding, and I reached down, but there wasn’t anything. It turned out to be the heat of lost nerves burning up from my spine and dying in my legs. By the time I made it up to the top of the stairs, I lost full use of both my legs. I was 100% paraplegic for almost 3 months.

It was quite painful, and it was the worst experience of my life.I’ve been competitive all my life. I played tennis, surfed, sailed, hiked, bicycled, jogged, and weight-lifted. This paralysis came on in 20 minutes. I was sitting in the hospital with perspiration puddling around my head and body so that the whole bed feels wet. I couldn’t move – not even the top of my body, even though I could feel the top. I couldn’t roll over. I could move my hands, but that was it. I was very, very scared because it felt like it was the end of my world. At the hospital, we did an angiogram on the total spine and they thought it was an infarction in T10, but some people said it was Surfer’s myelopathy. I used to do a lot of surfing, and when you’re surfing and get up too quickly, there’s a little bend around T10.

I’m a pretty tough guy, and when this hit, I just said that I was going to do everything the nurses and physical therapists told me to do. What I learned is that I was good at cutting out all negativity and just focusing on one thing: walking, walking, walking. I didn’t think of anything else the entire time, and that actually helped me. I don’t like to pray for myself, but I said to God, “We’re in this together. Just give me a little inch and I’ll give you a lot more. Give me what you can give me”. I was really scared. I was in diapers for two or three months. But kept saying to God, “Tell me what to do, and I will do more than you request”.

At the hospital, I was MVP every day, and every day they said I was the best patient they’d ever had. I never complained, never cried in front of them. I did cry, but never in front of them. I did whatever they asked me to do and more.

Brian DeMatteo

Who has been the best support in your life?

My wife. She was my girlfriend at the time, then became my fiancée, and we got married about three years ago. She could have run any time, you know. She saw me when I couldn’t move, and when I was in diapers. I can only imagine what was running through her mind, but she stuck by me. In my book, I say that the air I breathe is hers. I just truly love her.

There’s a multitude of people that supported me: my children were great, and the physical therapists were great. The reason I’m walking is not just two or three people – a whole community helped.

What in life makes you feel most grateful?

Too many things. I’m grateful for waking up each morning. I’m grateful that I have a great wife. I’m grateful for my children and grandchildren. I’m grateful for God looking over me.

My disability is pain. On a scale from 1-10, my pain can range from a 2 to a 20 within a year. My wife helps me get through it, and it’ll go away within a week, but it’s a very tough week. I’m grateful for every day that I have no pain, or pain under a 5.

How do you manage your pain?

I think the best thing I can share with people is about learning to meditate. Meditation is very easy to do, byt you have to believe in it. Start out slow, get a book, and get into it! It’s a form of breathing, and it can reduce your level of pain because it’s all mind over matter.

The next thing is to block out negativity. Negativity can hurt and bring pain to a point, so you must block out that positivity. I went to a Dale Carnegie course for public speaking when I was a young kid right out of college, and one of the things that taught me was to put those negative feelings in an airtight compartment. That negativity can kick your pain up to another level.

Another tip is to not stay in the house. A lot of people think it’s easy to stay in the house. Sometimes I’ll catch myself and think, “Is it the pain today, or am I just hiding out?” Get out and socialize, because when I socialize, I don’t feel the pain as much because I’m not focusing on the pain.

I’m also a firm believer in marijuana as a medical drug. I have a medical card to buy medical marijuana, which is legal here in Massachusetts. I like to take tinctures or edibles, and I only take them at night when the pain is really coming at me, and it really takes the sharpness out of my pain and helps me sleep. Sleep is another good thing for getting pain out of your body. You need rest!

What is your idea of a perfect day?

My pain is below a level 3 and I have a rum drink in my hand and a fishing pole in the other.

What is your favourite thing about your SideStix?

SideStix helped me do things that I couldn’t do before. Some people don’t understand this, but we walk on our hands and shoulders. I had this one week when I had two separated shoulders, and I couldn’t move. I couldn’t move my arms, so I couldn’t move my legs, and I thought that maybe that was it for me, and I should get off the planet. I really did think that. And then SideStix came along. I have never had a separation, and my fingers are perfect now. I love SideStix. It’s a big statement to say that you saved my life, but you were some very key people that got me walking again.

My favourite thing is how customizable they are. I love the sand and snow shoes. As somebody who used to live on the beach and surf, these sand shoes are the best. I bow down to you, they’re just fantastic! I can go out on the beach, in the water, up the dunes, and they don’t sink into the sand.They were such a great investment, so I bought the show shoes, and they were great in the winter. These ergonomic hand grips save my hands. Before I had these, I would be walking around and sometimes my hands would be just clenched without me clenching them!

This was the best investment of my entire life. I brag about them to everyone. The shock absorbers saved my shoulder pain and separation. The competition can’t do it! I’ve always been disappointed until I tried SideStix.

Brian DeMatteo

What risks are you proud of taking in your life?

I’m not afraid of failure. I’ve made a fool of myself many times. Once, in front of an audience of maybe a thousand bankers, my pants split in half! But I still kept going. I’m a risk taker. My wife says I’m not anymore, and that’s probably true, because I don’t need to be anymore. But every day I take risks doing something. I see people that are disabled kayaking and think, “Why can’t I do that?” I can’t swim anymore because I drop like a rock, and when I get on certain boats, I know my wife is holding her breath. With my spine, you never know what’s going to happen, but I’m going to have fun. I’m in control of my life.

Do you have a message for other crutch users?

When I was learning to walk again, my PTs had me in a walker, and it made me feel bad. I didn’t need the walker; I needed these crutches. When I got my SideStix, it was a transformation. As soon as my hands were around them, I went for a walk up the block and back, and knew immediately. If you have to use a walker, that’s okay, but try to use these crutches because it’s good for your mind. When I see myself with my SideStix, I don’t feel disabled. I’ve got a pain disability, but with my SideStix, I don’t have a disability. I get where I need to go, just a little slower. I know people stare, and we get used to that. I know many people that are disabled and don’t like the stares, but not me. I don’t care. Let them stare at me. I’m having a great life.

I like to use this line that includes a Stephen King quote, and it goes,“When shit hits the fan, you only have two choices: ‘Get busy living or get busy dying’”. When a disability hits so tragically, where one day you’re healthy and the next day you’re undergoing an amputation or something, you have these two choices. I choose living. It’s harder, but it’s way more fun. You’ve got to believe that it’s worth it. I love life, and I’m going to keep going until it totally knocks me down.