"The Vest"

In my last post I mentioned that when we were on our epic journey from Arizona to Maine, one of the things we brought with us was "The Vest." "The Vest" is an airway clearing system that uses HFCWO (High Frequency Chest Wall Oscillation), AKA pounding your chest Chuck Norris style. "The Vest" is a mechanism that looks a lot like a bullet-proof vest with an air tube attached to the front, and when someone is wearing it, it pumps mini-bursts of air into and out of the vest to create mini-coughs. It is ugly and medieval, but scientist somewhere have coupled with respiratory therapists to try to help people to breathe more easily. One of my mom's many specialists thought that "The Vest" would help her. I think in the end, I would recommend that a person with ALS avoid using this product, not because I think it doesn't work, but because there are already so many machines and tubes involved with ALS that you could avoid one extra by not bothering with this one. I think over the course of my mom's illness most of the members of my family took their turn with "The Vest" and we all thought it was completely insane that my poor ill mother had to wear this thing for an hour every day. The period from October of 2004 through December of 2005 was a time where we were all coming to terms with my mom's illness and moving from a period where we were trying to keep her alive as long as possible to a period where we had accepted reality and were simply trying to make her as comfortable as possible. "The Vest" was just one tiny part of the period when we were trying to extend her life and hope for a miracle and/or a cure. It's funny now as I look back at how ridiculous that contraption was and the hope that it represented for our desperate family.

The Big White Beast

When my parents came to the realization that they would need a vehicle with a wheelchair lift as my mother's condition worsened, my dad found a monster of a van online. It somehow made its way from Minnesota (where the previous owners lived) to my dad and it was affectionately dubbed "The Big White Beast." Their other car was always known as "The Big Red Beast," so the name made sense to our strange family. The BWB came to be quite handy, as my parents lived half of their year in Maine and half of their year in Arizona and drove back and forth (with two cats). The last summer that my mom was able to go to Maine, she was in her wheelchair and was having a relatively hard time doing everything. My dad had to to everything for her except minor things like wiping her nose and putting on her glasses. As their trip neared, it became apparent to everyone that my dad wasn't going to be able to drive all that way, do everything for my mom, and keep track of those damn cats. I thought it would be fun for me to spend some quality time with my parents and especially help my dad with some of the driving and lifting. Throughout my mom's illness not only were we watching my mom get sicker but we also saw my dad getting more and more frail, and it worried everyone in the family. It frightened me to think of my dad driving 4,000 miles hardly sleeping and being totally exhausted all the time. So I flew to Arizona and helped pack up the car with suitcases, snacks, the wheelchair, "the vest" (to be explained in subsequent post...) tons of medical equipment and breathing mechanisms, a kitty litter box, tons of random sized pieces of sheepskin (a crucial item for someone in a wheelchair), sippy cups, tissues, mix CDs of great country music, and off we went. Our journey took ten days, and my wonderful husband met me in Maine with our dog at the end. Each day I learned new things about my parents and I saw how amazing their love for each other was. I learned a lot about my mom and about our ability to communicate what we were thinking and feeling by just looking at each other. I learned that I have an extremely low tolerance for people who use handicapped toilets when they are not handicapped, to the point that I yelled out in crowded bathrooms "It's a miracle, you are cured!" and "Oh, wait, you forgot your wheelchair!" when people walked out of the stall. I learned that if you are driving a handicapped conversion van in Oklahoma at 101 miles an hour, you will be pulled over and ridiculed by your father in front of a police officer. I learned that when someone knows they are going to die, they tell you that they love you about 40 times a day. Most importantly, on that crazy trip across our amazing country, I learned that I would do anything for my family and that they would do anything for me. I am so glad I went.

Letter of the Day, February 18, 2010

Yesterday's letter was to my friend Molly, who is having her first baby in April. Today's letter is to my mother.

Dear Mom,

I think about you about twenty times a day. I used to get really sad when I thought about you, but these days it is different. I miss you and wish you were still here, but now I feel a strange kind of happiness when I am reminded of you. I am filled with warmth of remembrance of what an amazing mom you were to me. I think about you when I am cooking and when I can't figure out if the meat I am stewing is done enough or not. (You would have known.) I think of you when a Broadway song is stuck in my head and I know you would be singing it with me if you were there with me. Where are you now? Here I am at this weird stage in my life, when I don't know what is next. All of the "givens" have been taken care of- growing up, going to school, finding love, figuring out my career goals, and now here I am. I want to have a baby now because it seems like the timely thing to do, but I am terrified of the emotions I am going to have when I hold my baby in my arms and you aren't there by my side. Sigh. I miss you.

Lent

Meanwhile, four months later...

Lent is upon us. What does Lent mean for someone who isn't even the slightest bit religious? I think Lent is something that non-religious people can use as a time for reflection and self-improvement. It's not just for church anymore, people. The year that my mom died, I spoke to a friend about what Lent meant to her, and what the deal was with giving something up. I always felt it was a bit silly when you heard people say that they were giving up chocolate or macaroni or something like that- as if it was a huge sacrifice to give up one food item for six and a half weeks... (No offense to the macaroni girl) So I thought about what Lent could mean in a non-religious context, and I decided that my mom would have done some good deed each day or done something nice for someone else each day, rather than give something up. She always said "Do something good for the world every day." That first year I wrote a letter each day, and to make myself more organized, I decided ahead of time who the letter would go to each day. It was a great way for me to keep up correspondence and revive the letter in general. With the advent of emailing, texting, tweeting, Facebooking, etc., people just don't write letters anymore. I love getting letters in the mail, and I think people should write them more often. The first year I wrote 40 letters, and then I felt so refreshed after that year that I did it again for the next three years. This year I think I will continue my tradition but I am going to add to it by attempting to write something for this blog each day. I want to get back on the blog horse and contribute something to this blog. I feel the need to talk about my mom and write something about her, so I am going to attempt to write something each day for the duration of Lent. Here goes!