2 Week Update

Week one of every new initiative is always the hardest. I might be finding the hardest of anyone. I purposely have to wheel by laundry, cups, clutter, and remind myself I did not make this mess! If I know it is the result of my preschooler reminding is in order. Please pick up your toys when you’re done, put your cup in the sink, or your dirty laundry in the hamper. Not just doing things, or having them done, is really hard for me. I am a woman of action, which might be hard to grasp if you do not see me frequently, but there is no moss growing on this stone.

Since my week truly starts on a Monday, I have made plans to leave the house at least once a day since my week started. I have also told my family that, because of everything (PCAs not showing up, schedule, etc) I cannot be worried if dinner plates are set for all of us every night. I usually do the majority of cooking from scratch, which I am coming to understand is an unreal expectation for myself. I instead have decided I will plan out 3 dinners where everyone (all 4 people in my immediate family), has a plate made for them. The other 4 nights people are welcome to leftovers, to make something, or have cereal. Of course, I do not expect my 4yr. old to fend for himself and he and I tend to eat alone most nights. So, yes it is my job to make sure we both eat.

I also became aware, had an epiphany, whatever you want to call it, that I need to get out of my house way more often. Like, at least once a day, which might seem obvious and easy to most people, but I felt like my list of excuses is endless:

  • do not drive
  • access
  • my kids need me
  • my husband needs me
  • the PCAs cannot function without me
  • I might fall
  • Is the weather good?

Some of my reasons are legitimate reasons and others are just plain excuses. It is kind of extraordinary what becomes comfortable and how fast. Access is a real factor to consider when you are a wheelchair user especially when you are alone, but there are places I have been to enough to know if there is an entrance I can use or if there are grab bars in the bathroom.

Transportation too is a hassle but it is not totally impossible to arrange. I do have access to Paratransit, if you do not know what they are it is a branch Worcester”s public transportation (WRTA). This is a service to the disabled and elderly that if you apply for and meet the criteria then you (a person with a disability), have available to us.  There are certain limitations when “the van” is utilized,

  • a ride needs to be scheduled one day in advance, but no more than two weeks
  • a ride costs money, how much depends on the distance and how many trips one way vs round trip etc.
  • you cannot leave anything on the van, such as car seat, the same van does not necessarily pick you up
  • the drivers are not responsible for helping carrying stuff, you can only bring or buy what you can carry – which makes sense, but if you use your hands to move, what you can carry is very limiting.  

Alternatively, I ask for rides from people within my inner-circle / safe zone. Which, the number of people has always been very limited.  In order to get in and out of a car I have to trust someone totally. I have to allow myself to feel confident that they will be able to help me transfer and to catch me if I fall. I also have to completely let go and hope they can put my wheelchair in the vehicle. I am working very hard on expanding my circle and letting go, but sometimes any trip is like playing a game of trust falls in P.E.

My current experience in the world just below the mountain I choose to live on is that the places to go even within my own city are limited. There are quite a few obstacles involved when I leave the house. I have always thought exposure to disabilities is the one true way to develop understanding and increase one’s comfort level for able-bodied people to experience the world from a different vantage point. I now see that it is comfort and exposure on both sides. I tend to stay in my own safe little bubble.  I only go to certain places with certain people. As I breakdown some of those barriers venturing out on my own or with other friends a little, I find myself to blame as well. How many times have I rejected an offer of help? Are there times I have chosen to go without something, rather than to ask someone? It is very true that I need help and that some people for whatever reason do not hold doors or stop to pick up the box of pancake mix I dropped in front of them, but if I remain silent and do not express my needs how will people learn? For all I know, they have never had contact with someone who uses a wheelchair or maybe once they tried to help and got publicly shamed. As with everything else, the world of disability varies greatly from person to person, and asking is the only way to learn. I am learning though, that questions and other forms of communication can not be one-sided.

As week two is coming to an end I am feeling overall more positive. No, there may be no one in the whole world with my entire host of issues, but when I relax and think of all the people I do know who are living with one or more of similarity to me, I am so lucky. No, this person may not, in fact probably does not, have 2 sons 12 years apart, one who is just starting kindergarten just as one finishes high school, but does that really matter?  Do I have to find someone with the exact same list of challenges to confide in? No, that is why as humans we are able to be compassionate, without necessarily having empathy, people are able to relate without living the same experience. I personally am thankful that other people can and do have various outlooks and experiences to offer, which can be very valuable when I have tunnel vision.

At the same time, “relatability” is also a priceless attribute to have in a friend.  Being able to relate has such a fluid range, meaning one person might merely know where I am coming from as a woman, or be as specific as a woman in her 30’s, a mother, a wheelchair user, and/or have the same rare genetic disorder I have.  Yet there might be a “typical woman” that she and I, both have husbands who have suffered TBIs. Yes, having no one in your identical situation can leave you with questions, but perhaps while searching for the answers I am able to build a larger, more diverse village. A village of people who are all able to access what they need, and learn from each other. An Accessible Village.