Providing Support

Moms exist in this world to provide many things for their children. My mom was a rock in our family that kept everyone moving on an even keel. She kept us laughing, she kept my dad "in line" and she kept me and my brother semi-sane.

Before she was our mom, she was a support to my dad in a lot of things that they did in their pre-child life. One thing in particular that she did that we always thought was pretty amazing was how she supported my dad while he was doing his PhD. They lived in Arizona in the late sixties and for a time they lived in tents and in the back of their VW Camper Van. They weren't hippies, they just lived a simple life in order to survive on a student budget. My mom worked in various jobs, one of which was at a popcorn stand on the campus of the University of Arizona while my dad was studying there. My dad always thought it was far beneath her to be working at a popcorn stand, but my mom's version of the story was that she loved that popcorn stand. She loved working so close to where my dad was taking classes so that she could see him all the time. She loved my dad more than anything and would have done anything for him. My dad has always been eternally grateful to her for her support, which she always said was just "part of the deal." She had an amazing way of making taking care of our family seem effortless.

Through her example, when it was my turn to be a supportive wife to my husband and move to another country so that he could do a PhD, I channeled my mother and was ready for my role as "supporter." While we have been living here, I have been doing a variety of jobs and working my little butt off to pay the bills and provide a nice life for us. We have tried to avoid living like poor graduate students, but in order to do that you have to work hard. I have seen my time over here both as a challenge and as something really exciting that I am incredibly lucky to get to do. My husband has felt guilt for dragging me across the ocean and for my taking jobs that are supposedly "beneath" me.

Now that our experience over here in this crazy country is coming to an end, I am feeling a mixture of feelings: excitement to go home to my country and a job that I love, and sadness for leaving new friends that have enriched my life in many ways. As the end of my husband's time here draws near, he is feeling more and more stressed by the day. It makes me think about what it must have been like for my mom when my dad was writing his dissertation and getting stressed more and more by the day. I wonder what my mom did to help my dad get through it and to ease his mind, and I hope that I can be as supportive to my husband as she was to my dad. Since my mom isn't here to tell me about her experience, I can only wonder what she would have done and how she felt at the time, and know that since she was my mother, some of that goodness hopefully rubbed off onto me.

New Babies, New Connections, New Lives

Writing this blog is not as easy as I thought it would be. I have so many days when I really feel like writing something about my mom but I just can't seem to get the words out. This has been an amazing couple of months for me because I have had some wonderful experiences that have made me think about my amazing mother and remember how lucky I am to have had her in my life.

First, my best friend Molly had her first baby girl! Then, one of my other best friends Jackie had a little boy! It was incredibly stressful for me as a friend because they had their babies two days apart (what are the chances??) and I live about 4,000 miles away from both of them, and I didn't really feel like I was "part of the process" like I would have been if I was living in the US. My mom would have been so happy, proud, amazed, and in awe of these two incredible moms for being so brave and inspiring through their birth processes, and then she would have been the first person I would have called after I got the news that the babies had been born. My friend Molly called me on the way to the hospital, and then I didn't hear from her for two days, and when I finally heard, I cried tears of relief, pride, and happiness all at the same time. My mom would have been a big part of those few days for me, listening to me worrying and telling me that everything would be okay, and then crying with me when the news came.

Next, I was in the airport traveling from England to the US to go to Advocacy Days in DC, and I was delayed several hours due to a volcanic eruption in Iceland. As everyone on our flight shuffled around the gate with looks of stress and angst, I randomly bumped into a really great guy. I instantly felt a connection with him like we were old friends reunited, which I hardly ever feel with men. He turned out to be really helpful in finding me a way to get to DC after I had missed my connecting flight, and later I connected with him on Facebook. I still don't really KNOW him, but through our brief messages on Facebook, I have found that I share a lot in common with him. A few days ago he posted a message about how much emptiness he feels from the loss of his mother. How strange that two people randomly bump into each other, so far from home, and have such a similar story. Sometimes when these weird things happen I wonder if there is a place like heaven, where two souls could come together and decide that they want their children to meet. Maybe Jay's mom and my mom were in heaven making cookies together and thought we would be good friends. Not that I believe in any of that or anything...

Now we come to this weekend, where my second-oldest friend from way back in the recesses of my childhood, is getting married. My mom and her mom were very close friends and shared a lot of their major life experiences together. I bet that Carol is thinking about my mom this weekend and feeling sad that her best friend is not there for her daughter's wedding. Carol was there at my wedding, my brother's wedding, and my mom's funeral, and was a big part of my life growing up.

I guess my life will always have these times when there are clusters of events that all really remind me of my mom, and maybe the reason for that is just to remind me one more time how lucky I was to have her for the time that I did. Maybe these moments happen to mess with my emotions, or maybe they aren't related at all and I want them to be. Either way, I have been thinking about my mom A LOT for the past two months (more than normal) and my only conclusion is that I really, really miss her. Still.

Excitement

This is such an exciting week! I am about to go home to the USA for ALS Advocacy Days, but as an added bonus I get to see several of my friends and some family while I am home! Two of my best friends had babies recently and I get to see one of them, I get to snuggle with my beloved dog, and I get to take a long drive with one of my oldest friends. I can't wait to have down time with her and just catch up on all of the things that are happening in our lives. Catching up is one of my favorite things to do! I am trying to be mature and subdued about my exciting trip, but I am having a really hard time disguising my super smile this week. Only a few more days.

I am also really excited to see all of my fellow fighters against ALS while I am in DC. My dad and I have kind of made this an annual thing that we do together, and I am really looking forward to some quality Dad time. We are going to walk around and see our beautiful Nation's Capital, eat dinner at one of my mom's favorite restaurants, and talk about my mom a lot. My favorite part of ALS Advocacy days, even more than the empowering feeling of walking into a Senator's office and sitting across from him at his desk, is that as a group all of the people at the conference spend time reminiscing about their lost loved ones. They tell funny anecdotes, favorite memories, and tell each other what they miss the most about their loved ones. One of the things that I find really strange about our Western culture is the weirdo way in which we deal with death. Death is a part of life. It sucks when someone you love is taken from you when you are not ready to let them go, but we have an awfully strange way of dealing with death in our culture. I think my next couple of posts will talk about this phenomenon and why I think it is weird and needs to change. This post has been all over the place but I blame my scattered brain for being so excited about going HOME this week.
:)

ALS Advocacy Days 2010

Here we are in late March and it's time to start planning what to say this year to my Senators and Representatives in Washington. I am planning on attending the National ALS Advocacy Days Conference and looking forward to having another opportunity to meet with my members of Congress and try to get them to join in the cause against ALS. When I look back on the last five years it has been miraculous how much policy change we have made in such a short time. The first time I went to ALS Advocacy Days was in 2005 and most of the talks that we had with our Senators and Representatives were to introduce them to a disease that they had never heard of. There were tears, hugs, and lots of pictures of family members being passed around. There was, at the time, NO funding for ALS research and basically a general lack of information for everyone. Now, five years later, we can proudly say that we have accomplished a LOT. There is a completely different feeling of hope at the conference each year, and people are extremely optimistic that a cause, a drug, or a cure could be just around the corner. Now when we meet with our members of Congress they remember us and remember what we are fighting for. They know why we come to Washington each year and they can see on our faces that we mean to keep coming back every year until ALS is eradicated. It is really difficult to go back each year and know that a lot of the PALS (people living with ALS) that were there the year before have lost their battles with ALS, but we have to remain hopeful that our country is on our side and will help us find funding. The brochure for this year has a list of the accomplishments that we have made since we started lobbying on the Hill, and it is pretty impressive.

Our Advocacy Accomplishments Include:

• 24-Month Medicare Waiver-- Enacted historic legislation to eliminate the 24-month Medicare waiting period for people with ALS, the only time Congress has amended this law.

• Government Funding for ALS Research-- Generated more than $425 million for ALS research over the past10 years and increased annual government funding from just $15.1million in 1998 to more than $60 million in 2009 alone.
  

• Veterans Benefits-- Advanced regulations that establish ALS as a service connected disease. Veterans with ALS and their survivors now have access to more than$500 million in benefits, including monthly disability compensation and full health care.
  

• National ALS Registry-- Enacted the ALS Registry Act to create the first nationwide ALS patient registry, which may become the single largest ALS research project ever. Over $15 million appropriated to date!
  

• Presumptive Disability Ruling-- Established a presumptive disability ruling for ALS at the Social Security Administration, helping to ensure timely access to disability benefits for people with ALS.
  

• DOD Translational Research-- Partnered with Congress and the Department of Defense to create the ALS Research Program, which is the only ALS specific program at DOD and is focused on translational research seeking to find new treatments for the disease. More than $17 million appropriated in just three years.

This year, I will be attending the conference with my dad, who is now on the Board of Directors of the Arizona Chapter of the ALS Association, and I am excited to not only see familiar faces that continue to fight ALS together, but to spend some quality time with my dad.

"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.