Adapting

As I have mentioned frequently on this blog, the past two and half years or so have been all about working hard toward recovery, and adapting to my limitations. At times it has been a very difficult balancing act, and at times very emotional. However, lately it feels like these two things are not really in conflict with one another. I'm not sure exactly why – either my recovery has slowed so much that adapting to my current situation is really all there is, or I have changed how I think about it so that adapting feels like making steps toward recovery. I think it is a bit of both, and perhaps something else too that I can't quite identify.

The biggest issue that leads to limitations in what I can do is my mobility. I simply cannot walk long distances, or be standing for long periods of time. There are times when I push the limits by doing something like going to the mall, and I find that I usually have to cut things short because it becomes so difficult to walk that walking is taking all my attention and despite that I'm tripping over myself and running into things. After something like this I am so tired that I basically can't do anything but lay on the couch for the rest of the day. Because of this, there are activities that we might otherwise do but choose not to, like going to the museum, or the art gallery, or even the farmers market over the summer.

People ask why I get so tired, and why my ability to function physically seems to fall apart after a time, when there is nothing wrong with my body – the only "broken" part is my brain. I don't fully understand this but basically think of it as a lack of automaticity of physical functions that are supposed to be automatic. Because there is damaged tissue in my brain, I have to re-route signals from my brain to my body, and over time a slightly garbled signal gets compounded into a breakdown. These are the metaphors that makes sense to me, but what I know from my experience is that these problems with mobility end up limiting my life.

A little over a year ago I got my Segway, which I thought would go a long way to solving this problem. However, the Segway has quite a few limitations as well. First, it can't be taken to places like malls because the electronic security gates at store entrances can sometimes suddenly cause the Segway to turn off completely, which is a huge safety problem – once it turns off, it no longer balances so if that happened I would fall off. Second, people don't recognize it as a mobility device and it is not necessarily allowed to go everywhere. When people did see me riding it, they often assumed I was just trying to be cool, and I was asked more than one time if I was allowed to be using it where I was. Finally, it is really difficult to transport. It's extremely heavy, so even though technically it can be loaded into our car using ramps, it is not something I could ever do on my own safely. Also, because of the type of battery it uses it is never allowed on an airplane, ever.

For these reasons, when I went to the American Psychological Association conference last August, I rented a mobility scooter while I was there. I would not have been able to participate in the conference otherwise. I was always resistant to scooters, because they are very uncool, but functionally it was really useful in some circumstances – for example, one afternoon I decided to head over to the art museum that was near my hotel, and I would never have been able to do that without a scooter. It was also a huge and clunky, which meant that getting into some spaces was extremely difficult. My physical therapist also said that without a van equipped with a ramp to load it, transporting a scooter would be impossible. So despite having had a somewhat positive experience, it seemed like my mobility needs could not really be met with a scooter.

At the same time, I never completely stopped searching for a better mobility aid. About a week ago in one of my Internet searches, I came across a device called the travelscoot. It is a mobility scooter that is in some ways built more like a bicycle, with a metal frame. It is extremely lightweight (as in about 30 pounds), and can be folded up to fit into a travel bag (and into the trunk of even a very small car). It is approved for travel on airplanes, and can even be driven right up to the gate and gate checked with the strollers. It has a range of about 12 miles on one battery, and you can carry a spare which you can easily switch out. There are downsides – it is not so stable for very heavy people (not really a concern for me, as it is approved for use by people up to 320 pounds), and apparently the seat gets somewhat uncomfortable (which could be very problematic for someone with something like back pain, but is not really such a problem for me). The more I looked into it, the more it seemed like exactly what I need.

So last Thursday I got an appointment with my doctor, and she wrote a prescription for the travel scoot (prior to having mobility issues I had no idea that doctors could prescribe things like this, but they can). I ordered it as soon as I got the prescription, and the cost will be reimbursed by my insurance because it is a medical device approved by Health Canada. It is supposed to arrive by the end of next week, and I am super excited. We have tentative plans to go to a museum next Saturday that we have avoided going to the entire time that we've been here, mostly because it would tire me out. A year ago, I don't think you could have gotten me to use a scooter, because it would label me as disabled. Today, I don't really care about being labeled as disabled, I care about being able to do the things I want to do, and I am really hoping that this new mobility aid helps in that respect.