Four strategies from a husband and father living with neuromuscular disease
Four strategies from a husband and father living with neuromuscular disease
Life isn’t easy whether you are living with a neuromuscular disease or not. I recently came to the realization that there are four main strategies for being happy in my life and that enable me to make sure my life is working for me and my family. While there is no one-size-fits-all formula for achieving a happy life, I hope my experiences and the tips below may help provide some insight into how you can have a life that works for you, especially if you’re feeling like you’re not quite there — yet.
1. Self-created problems vs. problems out of our control.
First, I needed to train my mind so that I was able to embrace this "condition" (muscular dystrophy). I don't give it the satisfaction of calling it a disease, because to me a disease is forever, and this is only temporary. Rather than blaming the "condition," I thought at first I had done something bad in my past to get this (I know it sounds crazy). Since there is no family history of muscular dystrophy, how could it possibly show up now after all these years? I can tell you there is absolutely no punishment — God and life does not work like that, trust me on this one. Everything happens for a reason. Sometimes we find out right away, and other times it may take a while. It's not on our timetable, but when it happens you will understand why it did. To make a long story short, after much research by me and my wife, it was something out of my control and in no way could it have been prevented. Now what was self-created was the fear of public speaking, the fear of being seen as weak in public, especially falling or tripping quite often.
A great example of a self-created problem was when my wife surprised me for my 35th birthday with a trip to New York City. Instead of being excited, I was acting angry and irritated. I came up with at least five reasons I didn't want to go. Then, I realized it was the fear talking. Our flight was fast and on a small plane, and my adventure began the moment we landed. Instead of pulling the plane up to the gate, a set of stairs was rolled up to the plane's door. My heart sank, "I'm going to have to walk down these stairs, in front of all these strangers?" I said to my wife. She spent five minutes telling me it will be OK, and that nobody would judge me. I thought, "great, it's starting already." I had to raise my hand when they called for anyone with a disability to go first. Praying that I didn't fall, hold up the line, or both, I led the way. I did it! I was fine, and I felt like I had achieved something.
On our first day, my wife wanted to walk to Central Park. We were staying on 34th and 5th Ave. Two blocks into our 24-block walk, I hit a crack in the pavement and went crashing down onto my knee, blocking the sidewalk with all the hustle and bustle of the city surrounding me. All of my fears of this trip were coming true. A stranger stopped to help my wife get me up. Embarrassed and angry, I was rude to a total stranger who took his time to help me. I finally got up and barely thanked him. I then picked a fight with my wife that lasted the next 22 blocks. We made it to the park and grabbed a bench to sit on. As I looked at my wife (who is not one to hide her emotions), I could see she was clearly upset. I asked "What's wrong with you?” I felt great, like I conquered the world because we made it. I had forgotten how awful I was acting up to that point, but my wife didn't forget. I gave her a couple minutes to put me in my place, and I came to terms with the fact that this was all self-created, from my own fear. The anxiety, stress, bad attitude and ungratefulness were all my choices. So, I made the conscious choice to enjoy myself, my wife and my first trip to NYC.
From that point on, I started to acknowledge and take ownership of my attitude and my outlook on life. I first gave myself the courage and then the power to start making the most of what life has to offer. Count your blessings, not your obstacles. We had a great trip; I crossed the Brooklyn Bridge on foot (which is not an easy task, even if you don't have muscular dystrophy!). The moral of the story is that I convinced myself that I would have a very difficult time getting around the city based on fear and what I thought it was like from movies and talking with other people. I met some of the nicest people I have ever come across, and was able to explore a lot of cool sights and conquer a lot of obstacles. I would not have allowed myself that experience if I hadn’t changed my mindset.
To make life work more in my favor, I was going to have to adapt. Bruce Lee said it best, "Be like water." So to help with the public speaking and embracing my condition, my wife encouraged me to join my local MDA. It was a great idea because it helped with speaking to people, and I am now able to help people out there. They didn’t choose to have this disease, but I can help them choose to live a full and happy life. To limit the falls and tripping, I started off with a hand on my wife's shoulder, then a cane and now a wheelchair to help me when I’m out of the house.
2. Positive thinking is a choice.
I've been told that I'm always positive, or that I'm positive to a fault. I like to think of it as a state of mind. In other words, I choose to be positive. I have bad moments, sad things that happen to me and stress like any other person. But we as human beings all have the greatest God-given gift: the power to choose how we react in these difficult or challenging situations. Negative thinking and positive thinking are self-created and can be changed. What you think, you manifest, so I train my mind daily and make myself think positively — no matter what.
I grew up in a loving family; I had an ambitious father who worked hard, long hours. I had a stay-at-home nurturing mother who had always been there for me and raised me and my brother. I grew up thinking that this is the way a family should be. My father was a truck driver and was on the road a lot. As I grew up, I followed in his footsteps as a driver. The years passed and sometime around 2005 I started to notice some weakness in my legs. I played it off as just being out of shape from sitting a lot, being a driver. I had no pain, so I thought I was fine. In 2008, my soon-to-be wife suggested I go see my family doctor because she noticed my gait was a little off as I walked. After being put through a number of tests by doctors, I was diagnosed with a form of limb-girdle muscular dystrophy (LGMD2I). I felt like I had just been hit with a haymaker from Jack Dempsey. With no family history of this condition, it came as a shock, and I was completely blindsided.
Being a newlywed with a baby on the way, I was going to have to come up with a battle plan. All my plans, my picture that I painted in my mind of how my life was going to look, had changed. What started off as what seemed to be a curse, was actually a blessing in disguise. I'd be lying to you if I said I adjusted right away and everything fell right into place. I was out of place in my own home, having to raise my daughter as a stay-at-home dad. “This isn’t what men do, this isn’t my role,” I thought as I changed diapers and cared for this tiny baby. My wife was equally resistant and went to work stricken with guilt and worry about leaving her newborn baby at home. We fought and blamed each other. We knew that this wasn’t going to work if we didn’t accept our new roles. We had to be open to change and be flexible. Eventually, everything did fall into place.
But as I said before about self-created problems and problems that are out of our control, I had to change my mindset. I came to realize that my problem (muscular dystrophy) wasn't my obstacle. My obstacle was myself. I learned to embrace my condition after realizing there was no way I was going to stop this from happening, regardless of whether I could lift weights, run a million miles and take every vitamin my body could handle. Now I see that staying at home with my daughter has given me a new purpose in life. I wouldn’t trade my time with her for the world, or for a cure. Good things can come from bad situations. I have an unbelievable amount of support from my family, my friends and even strangers. But all the support in the world wouldn't have done me any good if I hadn’t adjusted my outlook. This may be easier said than done, but once your mindset is on the positive side, it will seem easier. (You're just going to have to trust me on this one.) Your situation may not be easier, but your mind will be stronger, and you'll be able to adapt and turn that negative situation into a positive opportunity instead.
3. You have to do what's right for you.
This seems pretty self-explanatory and meant in a good way, of course. No one can live your life for you. Just you. Period. One of the ways I was going to have to do what was right for me was quitting my job. This one was a difficult situation for several reasons. I had been a driver for 13 years, and I thought it defined me; it was my title, and I come from a long line of drivers. It was what I knew. At the time, I had recently bought a house with my wife, and we were depending on our combined incomes, especially with a new baby on the way. To make matters worse, I was working for my family who I love, and I didn’t want to disappoint or inconvenience them The last thing I wanted to do was tell them I was going to have to stop being a driver for them. I somehow passed my medical exam to keep driving after being diagnosed, so “I kept on trucking.”
This decision came to me after a pick-up I made. In the middle of winter, stiff and weak from the cold and my condition, I couldn’t get back into my truck. I prayed and tried and tried and I prayed, with no success. I was an hour away from home; I couldn’t just call someone I knew to help. I had to give in and ask for help from a stranger, an employee at the delivery site. I was a grown man asking for a total stranger to literally get underneath my backside and shove me back up into my truck. Not only was I embarrassed, but I also knew it was time for me to make a decision before I hurt myself or somebody else on the road.
At first I wondered how my family and I were going to make it. Well, it wasn't easy. One of my favorite quotes is "God never promised us smooth sailing, but he did promise us a safe landing." In other words, nobody ever said life is easy, but I now realize that life isn't so bad. Life isn't a mean bully that's beating you up constantly; life is more like a gift constantly giving you opportunities. I now have the best job in the world. I'm at home taking care of our daughter. I play camping with her, we read books, I make her lunch, I take her to school, I teach her about superheroes, and we practice writing. I even learned how to braid her hair (never did I ever imagine I would be doing that one day). I have even become a decent cook, at least better than I used to be — with a lot of help from Google and YouTube. All of this became possible because I made the agreement with myself to always do what's right for me.
4. Stop making excuses.
Excuses are a dime a dozen, and we all have them. It took me a little while to get in a groove of going to the gym and doing my pool exercises that help me to get around as independently as possible. But, I sometimes make excuses that I'm too tired, or I don't have the time, or it's cold outside. Now, of course, I have to think about safety, too. For example, if it's icy, I won’t put myself in a dangerous situation. That would defeat the overall purpose.
And, I even used taking my daughter to school as an excuse. I didn't want the other parents there to see me as weak, or possibly see me trip over a crack in the pavement, or even get knocked over by a gust of wind (yes, this has happened). This is where rules 1 and 3 come into play. I knew I wanted to be like the other parents who take and pick up their kids. So, I was going to have to improvise and make it work for me. How would I be able to do that? Well I did, and I have no regrets since I have been taking my daughter to and from school. I have help from some really kind and caring parents there when I need it. They are always there to lend a hand when the weather is bad, or if they just want to help out. I always enjoyed being outside and helping my neighbors when I was growing up. I wasn't about to let that change just because I now have difficulty walking and getting around. So once again, I made it work for me as best as I could. I use a riding tractor to cut my grass and a couple neighbors’ yards. I even make a little gas money on the side to help with the family cars.
I have learned from life and my physical condition to stop thinking about what you used to be able to do, and to stop comparing yourself to other people. Listen, it's great to have mentors (I have several), and it’s great to hear about the things they did. But don't compare yourself. When you do that, you are setting yourself up for failure before you begin. The reality is, everyone will eventually not be able to do what they used to do, some sooner than others. Don’t focus so much on how long it takes to do something. As long as you're doing whatever it is that you're having a difficult time with, that's all that matters. Remember, when you come to an obstacle and you're scared or unsure, change your approach and make it work for you in the best way possible. Assess, create a plan improvise if it helps. You CAN do it — trust me.
Dan Matelske has the type 2I form of limb-girdle muscular dystrophy and lives with his wife, Angeline, and their daughter, Sophia, in a small northeastern Ohio town.
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