As most of you know, I usually write this blog to appeal to all types of people: my friends, my family, and people who have disabilities and have questions about living on their own despite having disabilities. But this month’s post is mainly for people with disabilities.
Even though I have been living on my own for 5 years with assistants and have been writing about the adventures both good and bad, there are some weeks that I still struggle with the very basic part of living on my own, and that is having an assistant.
Sometimes, it has nothing to do with them, but I just need my own space and time to chill out. Other times, one thing gets me upset about the fact that I need them generally and my whole day turns into a bad one. I thought this would go away after several years of having assistants, but if just goes to show you that we are all human and we all struggle with some of the basic things in our life, relationships. Relationships are very difficult. Even though I cannot get rid of my assistants because I need them on a day-to-day basis for physical help and sometimes advice, we figured out that I can have 45 minutes alone by myself if needed and eventually maybe longer and two hours alone if I am with a friend or family member. This is another part of living on my own that I did not realize would be so important to emphasize in this blog.
To the average person, it may not seem like a big deal, but everyone needs their time and space. When I had my time and space for the first time since we figured out this new arrangement, I thought about something we talked about in my writing class. We talked about the quote, “Life is not measured by the breaths we take, but by the moments that take our breath away”. Though the author is unknown, it is a very powerful quote. It reminded me that even when I am going through a difficult time with an assistant, that there are always solutions to problems even though it may not seem that way at first. And I have a lot to grateful for.
I am grateful that they are there to help me. I am going back once again to the Spring to Dance Festival in St. Louis, and to visit family with one of my assistants. I am hoping that I will have less times when I get angry with my assistants if I implement these break times in my life. I plan to continue with the new system even when I am on vacation because my assistant and I figured out we will be together for almost 100 hours over the period of time we are on vacation. After I have had these breaks for a month or so, I will tell you how it is going because maybe when and if you are living on your own it might be something good for you as well to think about. I am by no means trying to tell you what to do, I am just giving you a helpful tip that might be beneficial to you.
In addition to the Spring to Dance Festival, I will be going back to Horizon Camp this summer. I will be a part of the Disability Pride Parade, both walking in it and dancing with Momenta, the dance company I am a part of. I will also be taking part in a summer intensive with Momenta, based upon the Humphrey technique. Doris Humphrey was a dancer and choreographer of the early 20th century who focused on the concepts of fall and recovery.
Finally, Paula will once again be coming to spend a long weekend with me. I can hardly wait! And oh yes, the best news ever! I will be spending a whole week with Paula because she is coming to Horizon Camp with me this summer! It is still hard to believe.
If that isn’t enough, just a few short days ago I received the best package ever. It was from a school that I spoke at recently. I was so confused. The package was really big and I already received my paycheck. Did I forget something there? I said to myself “I think I had everything with me that day. What could this be?” I opened the package to find thirty something letters from 4th, 5th, and 6th graders expressing their appreciation to me on how much they liked my presentation and that they learned a lot. I was having a bad day with an assistant, and this turned my whole day around. It is little things like that that can change a person’s whole day and reminded me why I am creating this business of public speaking. My new business is officially called “Good Life Designer”. It incorporates my public speaking, my passion for helping people plan for their futures, and my ability and passion for choreographing integrated dances.
So, as you can see, I have a lot to be grateful for this month, and I am grateful for all of you!-Jessi