Author: youshouldgoanyway

Bleacher stress

youshouldgoanyway

Bleachers were my nemesis in high school. Since I had difficult with steps and didn’t want to feel like I was being stared at, I never went to football and basketball games. I couldn’t climb up the bleachers easily and without stress. School assemblies were particularly annoying because everyone HAD to go. I couldn’t exactly roam the halls when I was supposed to be in the gym with everyone else.

One solution would have been to sit in the front row. Can anybody say, “Loser?!” At least that’s how I felt. But the front row seats were also not very high off the ground and I was having a hard time getting up from chairs without grabbing onto something else, so that was out.

Our gym, however, had an upper level and I noticed some of the teachers and counselors would go up there and stand along the railing during the assembly. There were at least twenty steps to get up there, but twenty steps in an empty, quiet stairwell were much less imposing that 20 steps in front of a crowd, with no railing.

So I asked my guidance counselor, Mr. Foote, if I could watch assemblies from up in the upper level. He said it wasn’t a problem and for the first few times even climbed up there with me. Finally it became a routine and the other teachers knew it was okay for me to be there so I would just go right up there by myself. The beauty of this vantage point was that most of the time none of the other students even noticed I was up there, or cared.

In college, however, I got a little more excited about wanting to go to the sporting events because the quality of athletics at Stanford was amazing, and mostly free. In this case I simply did what I did in high school — scoped out the best spots and got there early to make sure I could claim my space. In some cases it was a standing balcony, in others it was a second or third row bleacher seat where the side of the bleachers were exposed so I could just slide in and out without having to climb steps. There were few times that I didn’t get a spot that I wanted, but then I would just look for another place.

Of course all this changed when I started using a wheelchair. Now there are usually designated spaces for wheelchairs and this removes the stress about worrying where to sit. This does come with its own set of problems, however, which I will discuss in tomorrow’s post. But my point is that most of the time, despite my difficulty with bleachers I was still able to find a vantage point, I just had to look around and think about it. This seems to be the case with most things that I can’t do like I used to. Necessity is the mother of invention, after all.

Use anxiety as a motivator

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We’ve all felt it before, that nervous feeling that seems to drop your brain down into the middle of your stomach. It can make you feel pukey, uncomfortable, sad, and generally preoccupied with your feelings. In dealing with muscular dystrophy, disability, or life in general, I have experienced these anxious periods many times over the years. It can come from external pressures like bills and responsibilities, but often it comes from a place of uncertainty, like that “last day of school feeling” when you don’t know what the next step is going to be.

Recently, however, I finally came to learn what this anxiety has done for me — it has been a motivator. It has been that “thing” that has taken me up a notch, either to perform or to succeed or to just get through whatever I was experiencing. In each and every memorable experience with anxiety I unwittingly responded with a big push — a determined effort to move to the next thing. Some people don’t respond that way, however. It’s how you decide to deal with anxiety can either make or break you. Anxiety can be leveraged to achieve great things or it can take you out of the game.

Anxiety is not a pleasant feeling. It’s extremely uncomfortable. My immediate response to anxiety is “I just need to get rid of this!” But how? I know people who medicate for anxiety. They pop pills or drink alcohol or eat. While I am not against medication, I think you need to medicate and make an effort to change at the same time. If you take pills for anxiety but don’t simultaneously try to deal with your anxiety then you’re just prolonging and deferring that uncomfortable feeling. If you simply drink away your anxiety, you don’t deal with it either. It comes back, you drink more, and pretty soon you’re not just suffering from anxiety, you’re suffering from depression and alcoholism.

I prefer not to medicate anxiety. For me, anxiety is now a powerful motivator. Just the fact that it makes you physically uncomfortable signifies that you need to get off your butt and do something different. It is so easy to become mentally complacent with a situation — both bad and good — such that your brain adapts and gets you into a comfort zone. If you are in a negative situation, you might decide to ignore the anxiety and accept the negative job, relationship, or living situation. But even when you are in a good situation — making good money, dating a great person, or otherwise feeling satisfied — you get comfortable and forget that you need to do something to maintain that situation.

I had the opportunity to go through what I call an “highly aware anxious experience” where I felt like I was able to step back from the anxiety and see the way it was impacting me. I discovered that in the moment of feeling anxious, my energy level was much higher than when I was not anxious. The anxiety kicked me back up a notch. Then the anxiety left me and I felt like I slid back down into a lull that I wasn’t happy with. I consciously decided to kick it back up a notch, and although it took a bit of energy, when I did return to the higher energy level, I didn’t feel anxious anymore. I felt in control.

It is being up that notch that I know leads to bigger and better things. Why get sucked into a lull, or artificial comfort zone when you could advance to the next big thing whether it’s a new life experience or a better contribution to the world? I now feel that when my body makes me feel anxious, it’s telling me “Kick it up a notch or I am going to make you feel like shit until you do!” It’s a very empowering feeling to understand this.

Think about it from a historical perspective for a moment. When humans had to hunt for their own food in order to survive, they couldn’t just sit around and be complacent with an immediate kill. Perhaps they took time to enjoy them meal, but at some point soon, they had to think about where the next meal was going to come from or they would starve. I believe that at its core, anxiety is a survival instinct and a free, motivating leftover from our ancestors which clearly has very relevant importance in today’s world.

Anxiety is definitely a mixed blessing. But if you can gain control of it, or at least understand it, it can be an amazing asset.  Now I try to kick it up a notch on my own, but when I don’t, I have something ready to crack the whip for me — anxiety — which I now recognize as that self-motivating factor that money cannot buy.

Making seating transfers easier

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Because arm strength can decrease with muscular dystrophy, I find a lot of the transfer tips I’ve gotten over the years to be useless. I cannot push down with my arms to boost my butt up at all, so I’m stuck “oompfhing” and sliding my way to wherever I want to transfer.

Often the difficulty with sliding from seat to seat is the friction caused between various fabrics. For example, it’s nearly impossible for me to wear corduroy pants and slide to the driver’s seat of my van because the seat fabric and the corduroy start an endless battle.

One solution to this problem is leather seats which is why I got a leather couch in my house instead of a fabric one. I can transfer and slide easily even with corduroy on. Alternately you can make use of a transfer board if necessary. However I find a transfer board only useful if I have to span a wide gap. It’s too cumbersome to use for any quick transfer.

My favorite solution, however, is to use a slippery piece of fabric as a temporary seat cover. (I recommend black because dirt doesn’t show!) I figured this out when I was having trouble getting in and out of my van while still walking. I could plop down just fine, but rotating my body to get comfortably positioned was a big pain in the butt. So I got a few yards of synthetic, running-pants type of fabric and laid it out on my driver’s seat. Sliding into a proper position became so much easier it was great. A benefit of using this sort of fabric is that you can also take it with you when you travel, or even fold it up and have it with you wherever you go. For example, if you go to someone’s house and they have a comfy looking recliner, you can just whip out your slippery fabric and slide onto the chair easily.

In a pinch I have also used plastic trash bags to provide a similar type of experience. Often though they’re not big enough to be completely effective and don’t survive too many transfers, but you can still make good use of them in a one-off situation.

Why I don’t use footrests on my wheelchair

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For the last three years or so, I have not used footrests on my wheelchair during regular daily use. I still put them on when I am playing tennis or traveling, but I have found that the ability to use my feet and legs to help open doors and assist with transfers has been a great benefit. It took some getting used to, and requires vigilance when rolling about, however once I rolled over my feet a couple times, I started paying better attention. Keep in mind, I don’t recommend this method to everyone, I just thought I’d share it because it works for me. If you try it you are going to hurt yourself at some point.

One reason I can get away with this is that my wheelchair has a power tilt so I usually tilt it up a few inches to lift high my feet high enough off the ground to be somewhat safe. I still have to be careful not to let my toes tip down and catch on something like a break in the sidewalk or the ramp on a curb cut. There is also risk of catching my foot on something if I approach too closely on the side as well as the risk of my heel getting caught up in a wheel. Fortunately I have only had two incidents resulting in what amounts to an ankle sprain over the last three years that I have been doing this.

Opening Doors

When it comes to opening doors, I don’t find ramming a glass door with foot metal footplates to be particularly effective or safe. However when I have my legs free I can use my feet to gently push open the door, move forward, then use my arm to hold the door open as I guide myself out.

If it’s a pull door, I am able to open it slightly with my arms, then stick my foot in and use my leg to swing the door open, leveraging my power wheelchair as well. For me it’s much less challenging to do this,  than it is to try to swing the door open with my arm and jam my wheelchair in through the temporary opening before the door closes too far.

Transferring

When transferring to or from my wheelchair with the footrests attached, it’s cumbersome trying to get my legs over the footrest. It can also be difficult to get the chair close enough to transfer if the footrest is simply swung away. So I found myself removing and reattaching the footrest every time I would transfer.  When I am out and about this doesn’t happen too often, but at home it could be easy to transfer several times a day just with having to use the bathroom, or sit on regular chairs. I soon found myself not even bothering to attach my footrests around the house and it made things a bit easier for me.

Drawbacks

I mentioned before that I have run over my feet a couple times, and it is painful! It feels like a bad ankle sprain. Each time this has happened it’s not that the wheel ran my foot over, it’s that my whole foot turned under the frame of the chair. Essentially it’s as if you pointed your foot down and it kept bending until it’s pointing the other direction. The worst part is that then you have to back up your wheelchair to get your foot out — so it’s like running it over twice! This is why I don’t recommend doing this. It hurts! Don’t count me liable if you try this and get hurt! It’s a personal choice. For me, the benefits outweigh the risks at this point in time.

The bed problem

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If you saw me get up out of bed, you’d wonder how I ever learned to maneuver the way that I do. If I outlined the movements for you, they’d go something like this:

  1. Roll onto left side
  2. Use right arm to pull left arm out
  3. Bend left arm and put hand under chin
  4. Roll slightly to the left
  5. Reposition left arm
  6. Change angle of hand under chin
  7. Roll more to the left and use momentum to put weight on my left elbow
  8. …And on and on for what seems like 100 carefully coordinated movements

It doesn’t take forever, but a minute seems like forever when there are so many things to do.

Getting out of bed in the morning is, as I’ve mentioned, one of the more difficult physical tasks I do in a day. Since it’s usually the first thing I do, it’s nice to get it out of the way right away. However, because it’s not as easy as just hopping up from the bed, it becomes easy for me to just stay in bed. Combine that with the fact that I’m usually perfectly comfortable when I wake up and I waste a lot of time in the morning.

One idea I have is to get an adjustable bed to make it easier for me to get up. Then I could just push a few buttons and practically be sitting up. Sounds great, right?

But a red flag for me is that I don’t want to lose the ability to get out of bed by myself. I worry that if I stop doing my special “maneuver,” I might lose the strength to do it when I need to — like when I am traveling and the bed I’m in is not adjustable.

This is a great example of when making something easier might not be the smartest thing to do for myself. It’s not painful or impossible for me to get out of bed on my own, it’s just an inconvenience. I don’t think I’m willing to sacrifice independence in order to make getting out of bed a little more convenient…at least not yet.

So in the meantime I brainstorm ways to get myself out of bed with a little more discipline. As I’ve come to find, it’s not just a “physical ability” thing that keeps people in bed in the morning. Able-bodied people have a tough time too. So hopefully in the coming months I can figure out a way to get up earlier and with more discipline using strategies that don’t involve getting blown out of bed by water from a fire hose!

I sleep in a regular bed and through a series of what feels like 100 different coordinated movements, I can get myself up and out of bed on my own. This is extremely helpful to maintain my independence, particularly when I am traveling by myself.

One problem I have, however, is that I love to sleep. When I wake up and I am totally comfortable and warm, I feel like I want to stay in bed all day.