Author: youshouldgoanyway

I can’t believe I’m …

youshouldgoanyway

Have you ever said to yourself, “I can’t believe I’m doing this right now!”

If so, it’s likely you were doing something new, different, out-of-character, or fun. Sure sometimes it could be said in a not-so-great context but in my experience, the times I’ve said it have usually been times when I was doing something great. I was having fun, learning something, and changing all at the same time.

I recall several times when I’d be driving from tennis tournament to tennis tournament and spontaneously say out loud, “I can’t believe I am driving to a tennis tournament right now!” Ten years ago that’s not something I ever would have said, much less done. It was a great feeling.

I’ve had several other moments like this. For example:

“I can’t believe I’m in this helicopter right now flying over a waterfall on Maui!”

“I can’t believe I’m on a boat about to see the Statue of Liberty!”

“I can’t believe I’m living in Hawaii!”

There are many more.

If you can’t recall saying something like this in the recent past, maybe it’s time to step outside your box and do something so unbelievable that not even you can believe you’re doing it!

5 positives about transition in progressive muscle disorders

youshouldgoanyway

With any progressive muscle disorder you’re in a constant state of transition whether you realize it or not. It all depends on the time frame. For me, I need to look back a year or more to see that yes, in fact, my disorder has progressed. For others the timeline might be shorter. Here are five things I’ve learned about transition and progressive weakness.

1. I adjust without even knowing it.

It’s only when I am really paying attention to how I am moving or doing something that I might realize, “Hey! I am doing this differently than I was a year ago.” For example, I noticed recently that when I put on a shirt I tend to gravitate towards my desk so that I can use my elbows to get the shirt up over my head. I rarely did this before. I can still put a shirt on without using a desk but for whatever reason I must have subconsciously realized it was easier.

2. Transition gives me time to psychologically adjust.

Unlike someone who is perfectly healthy one day and paralyzed the next, I have had the luxury of a very slow transition. Along with the physical adjustments, my brain seems to change as well so that I maintain the same positive attitude despite the physical changes. It’s as if I am given time to mentally accept a change, often before I realize a physical change has happened.

3. A slow transition means time for planning.

I know that my needs in ten years will probably be different than my needs now when it comes to my physical surroundings, vehicle, assistance, etc. Thankfully I can plan for these things both mentally and financially. If I know I will need a different vehicle setup in 10 years, I can save for it now. I can also keep my eyes out for new technologies that come up that I might need in the future even if I don’t need them now.

4. I pick up new hobbies.

When I wasn’t able to play regular tennis anymore I gave up on tennis for many years. During that time I discovered new things like painting, creating song mash-ups, new books, and other new projects that I might not have discovered if I was constantly playing tennis. I learned that there are always new things out there to get excited about. Eventually I started playing wheelchair tennis which was yet another whole new adventure.

5. The people around me adjust right along with me.

For the most part, the people in my circle of family and friends seem to adjust with my change in needs as well. There’s nothing shocking about my disorder to them because change happens very slowly. In this sense I don’t think they feel sorry for me and they are simply along for the ride as well.

Overall I am grateful that the progression of my disorder is very slow. Being able to reflect on this as a positive is a something I think only happened after I was able to fully accept having muscular dystrophy. Is there anything you’ve learned about the transition in your disorder that you see as a positive?

Overbearing is a mixed blessing

youshouldgoanyway

Recently I’ve had to deal with a few overbearing people and I have extremely mixed feelings about this. On the one hand, being overbearing can be a sign that someone actually cares. (It could also be a signal for someone being controlling!) But on the other hand it’s extremely frustrating because I’m 36 years old and being asked to do things like “call when you get home so we know you made it alright.” I’m not 12. I don’t like people hovering over me.

One of the things I am proud of is my ability to live independently. The extent to which I need help is extremely minimal, particularly since I tend to set things up so I can do them myself vs. having to ask for help all the time. So when someone asks me to do something like check in with them to make sure I’m alright, it’s as if they’re saying to me “I don’t think you can take care of yourself and something bad might happen to you.” You know how when you’re walking and someone steps on your ankle or hits you with a shopping cart from behind? That’s exactly how an overbearing person makes me feel.

It also bothers me sometimes when someone offers to help me with something they know I can do myself. For example, “Can I cut up that chicken for you?” is another type of question that drives me nuts, particularly if that person has seen me cut up my own food before. Someone said that to me once and one of my aunts chimed in and said, “Hey, Dan, do you want me to chew that chicken for you too like a momma bird?” So now that’s our running joke.

What has started to bother me recently is why these things bother me in the first place? People are just trying to be helpful and yet it’s irritating me tremendously. They’re being concerned or nice and it makes me mad. I don’t totally understand where it’s coming from. If I can do something as simple as checking-in and it will calm someone else’s nerves, why don’t I just do it? Why does it drive me nuts?

Changing my reaction is definitely something I intend to work on in the future. Someday I might need a lot more help than I do now, so it’s best not to alienate people who are already willing to help me.

Get your wheelchair on a boat

youshouldgoanyway

I had a great time the 4th of July weekend up at my aunt and uncle’s cottage in northern WI. Although their cottage was not particularly accessible (30+ steps down to the lake!) they did make arrangements for me to board their pontoon boat at a neighbor’s shoreline. The door off the front of their boat was much more than 30 inches wide so they just pulled straight up to the shore and we used the 7 foot folding wheelchair ramp that I carry in my car just for these occasions. The ramp bridged the gap from the land to the boat very easily and sturdily. It took less than 2 minutes and I was on board.

This is just one way to get yourself onto a boat. There are also many other options. In the past I have abandoned my wheelchair on the shoreline and been lifted via a fork lift onto a boat. I have also been carried onto a deep sea fishing boat as well as another family member’s pontoon boat one time when we didn’t have ramps available. My point is that if you would like to get on a boat but can’t physically climb on the boat yourself, you can still do it with a little help.

If you would like to own a boat, maybe you would want to get a custom ramp built. There are several companies out there who make custom wheelchair ramps for boats. Just search google and you can easily find them. I haven’t ever bought one so I can’t endorse one particular company over another. But anything is possible!

The time spent on the lake was relaxing, fun, and a great change of scenery. I could have easily said “No” to the extra steps they were proposing to get me on the boat but it turned out to be very, very easy.

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Don’t be like a weather forecast

youshouldgoanyway

See that weather graphic to the right? It’s the symbol you see on a weather forecast when there is even the slightest chance of thunderstorms or rain. I have seen this symbol even when the chance of storms is only 10%. Does that graphic look like it’s saying “10% chance of storms?” No. It looks like a definite chance of storms.

What’s even worse is that graphic is used even when there’s only a 10% chance of storms during a one hour period of the day! So we’re led to believe the entire day could be rainy/stormy when really, even if it does storm, it might be for 15 minutes!

I know people who cancel outdoor plans when they see weather graphics like this. They assume it will rain. Then the day comes and goes and all you hear is “I thought it was supposed to rain today!”

Wouldn’t you rather hear forecasts like, “There’s a 90% chance it will be perfectly sunny today!” How would that brighten the outlook for your day? It would be even better if the graphics for those 90% chance of a sunny day had the sun taking up 90% of the image instead of less than half.

I like to take this attitude on life — there’s usually a great chance everything will turn out okay. Why let the slight chance of something bad happening overwhelm you like that storm overwhelms the sun on that weather graphic? Even if it’s bad, it’s not bad 100% of the time. Bad comes and goes. You deal with it like you might deal with a brief thunderstorm — run for cover until it passes.

Do you really want to live your life worrying about “storms” only to reach the end, look back, and say to yourself, “I thought it was going to be worse than that…”?