April 19, 2013

I had a terrific time when we had a birthday bash (my son and I were born in March). It’s about a 40 minute drive to my son’s house and it’s beautiful country — it was a very pleasant drive. When we got there the place was all decked out with a happy birthday banner and lots of balloons. After a nice meal and keylyme pie, birthday presents were opened. A good time was had by all. On my sons birthday I emailed the following:

Hey Chas,

Happy Happy Birthday!
Though it might be a fairly unimportant day to you, this day is very significant for me. I was almost 22 years old when you presented yourself to this world, and you took me out me. It’s a pretty young age to have such an important responsibility. For the first time in my life I remember feeling that I would give up anything I wanted for something that you wanted. It’s a reminder of when I got home after I was told I was pregnant, looking into a full length mirror at my tummy and thinking “there’s a little baby in there”. As a supporter of choice I do think women should be able to go home and feel comfortable with the decision they made, but I just know that I remember having a certain strong feeling about having you as part of me. I felt this was my chance to prove that I could do it right. And when you were a baby it frequently occurred to me that as a young mom, one of my “jobs” was to make sure that I would be sending you in a positive direction. The psychology of being a male but still being connected to your heart was very important to me. It still is. I remember you asking me why you couldn’t have the same response to things that Mr. Spock did, because he was so rational.
Today it seems like you’ve found the perfect balance between Mr. Spock and your heart, and that is good news for me. But, I would remind you, never lose touch with what you feel. Always make sure that your whole life is a an expression of who you are. Your dad, I think, would agree that it’s a good idea to never give up activities that allow you to be Chas. To be able to love and be loved is the ultimate goal.
I’m not telling you anything you don’t already know, it’s probably just a reminder to me. I chose this day because it gets me thinking about all the important things in life. When I saw you last I was talking about all the beautiful things there are in life, and for me your birthday is one of them because of all the happy memories I have (of course be a productive contributer to society…yada yada yada). Again, I hope you had a splendid day, and I will speak to you soon.


This is an example of a wonderful outing. I had great fun doing these things, though it takes a few days to recover.
Another example of a fun outing is a trip I took to Wal-mart. Now, most people wouldn’t think of a trip to Wal-mart as “exciting”, but for an individual who is isolated it’s quite fun. The activity of seeing so many different people and things (a common experience for most) was both stimulating and refreshing. I was able to choose products instead of asking people to do shopping for me.
I remember reading about Emily Dickinson never leaving her room but able to write about experiences around the world. Being able to write this is very similar because most of the time, while I’m locked inside my head, I’m able to imagine doing and seeing all of these things (I don’t pretend to compare myself to Emily Dickinson).
These outings are so important to me to help me feel connected to the outside world. These writings are so important to me to help me feel connected as well.


Locked in my own head?

April 7, 2013

Something that should be addressed in the case of having a disease is the affect on others around the person with the illness. A disease is something that affects not only the person with the illness but it touches the people around them. Something that I hadn’t thought about earlier because I was so involved with the daily difficulties of having MS. The disease is having an affect on the people I love most: my husband, my son, even my mother.
For example, my husband had envisioned a retirement playing golf and traveling with me. He has expressed the loss he feels in not being able to anticipate this any longer.
As for my son, the issue of grandchildren comes up. Not being able to use my hands means I can’t touch my grandchild’s cheek, rub his/her fuzzy little head or tickle his/her toes the way most grandparents might. I can only hope to rub noseys, kiss their chubby cheeks and play “buttered elbows”.
My mother, who is 89 years old and has experienced everything (born in Germany in the 20’s) can’t hear me very well and I can’t speak loudly enough for her. All of this serves as a reminder that having this disease can contribute to burying ones’ self within, hence my main point in blogging – – to break out of my self-confinement and reach out to anyone who may be experiencing something similar.
I would add the following: I think it’s easier to experience this myself rather than watch it happen to someone I love. So, I would imagine that for my loved ones to watch me go down hill physically must be rather painful. I just know that it would be very difficult to watch my loved ones deteriorate physically. Any suggestions or comments would be appreciated. What do you think?…