Everyday Miracles

I was inspired by reading a friend's blog today to write a new post. I am inspired by what seems like a miracle. An email this morning informed me that the CDC has finally started a website for a registry of ALS patients. Finally, we will be able to track and see where all of these patients are coming from, what they have in common, and find a connection. Find a cure, end this horrible disease. Can we please just end this horrible disease? I am in contact with lots of other people like me, young-ish adult children whose parents have or had ALS. One by one I see these people go through the same painful goodbyes and still have no answers to the ultimate question- where does this disease come from, why do you get it, and how the hell can you prevent it? Finally, a miracle might be in our future.

This weekend, Team Sue, our family's walk team, will participate in the Arizona ALS Association's Walk to D'Feet ALS. Each dollar that was raised will provide 91 cents to go straight to ALS research. When someone in your family dies from ALS, you are forever linked to an amazing community of family members who have been through the same thing, and who are fighting to end the same disease. Each year brings new exciting research and more and more hope.

Thank goodness for friends and family who are still willing to put up with me asking them for money each year.

Thank goodness for scientists who put up with family members of the deceased breathing down their necks, screaming for a cure.

Thank goodness for loving families.

Blech

I am depressed.

I go through these phases approximately once every three to four months, where I am really sad and angry and I miss my mom like crazy. This "phase" has been going on a bit longer than they usually last, and I am becoming a much crankier and much less sunny version of my normal self. I must admit that since my mom got sick and died I have become different in a lot of ways, but I find myself fixating on the negative changes. I am less tolerant of people, I am less open about my feelings with people I don't know, and I tend to try not to talk about things that are bothering me, for fear of a total breakdown. I worry a lot that because I miss my mom so much and I am sad about it a lot that it is making me a bit difficult to deal with (AKA an enormous bitch). Is this normal? Yes, of course it is, or so I like to tell myself. I just cannot imagine a person dealing with the death of their mother and not having similar feelings. This isn't something that you can get over in a month or two, it is something that sticks with you every day for the rest of your life. I am not trying to dwell or feel sorry for myself, this is just how it is. I have been in a slump for a while now, and my poor husband has to deal with it on a daily basis, when he has his own stresses to deal with and pressure to finish his PhD. He's pretty amazing. My best friend has been amazing too- it's really funny how she can just sense when I am extra needy for support from her. Quite a feat-- from 5,000 miles away. I worry a lot that my friends will judge me for being less tolerant and sometimes emotionally needy, but that is a senseless thing to worry about. People who are your true friends would never judge you, especially when they know all of the little peices that make you who you are. I guess you just keep going, hoping for the best and trying not to take out your frustrations on innocent bystanders. Trust that your family and friends are there to listen and support you, but don't over burden them with too much sadness, as they have their own shit to deal with too. Everyone looks at the world through their own little window. Sometimes your window has some smudges on it. It has to rain eventually.

Why I haven't been writing...

Ugh, another Spring. Spring is a tough time, and this Spring has been especially hard for me to be thinking about my mom and how much I miss her. What has been great about this Spring is that I have had lots of lovely visits from so many of my family members. My dad, my brother, and my sister-in-law, my mother and father-in-law, and several others have come the distance to our remote village in the UK to visit us. And then there was British Mother's Day, then a month later there was American Mother's Day, and then my mother's birthday, all in a row. Then there was a family wedding from my mom's side of the family. Weddings are wonderful, and it was amazing to see my wonderful family members who went to Austria from oceans away. The wedding was the son of my mother's brother (my cousin) and it was a very difficult weekend for me, not only because every wedding I go to with my dad is difficult because there is always dancing, and there is my dad sitting all by himself during the slow songs, etc. Then there was the weird factor of people saying "And how do you know the bride and groom?" And of course I have to then say, "um, well, Ben's father is my mother's brother, but she died a few years ago." What a way to end a conversation and be the wedding buzzkill girl. Needless to say, I have taken a hiatus from this project of trying to uplift people who have lost a parent, lest I drag people down into my funk. I am now back, and will be coming up with some witty and uplifting advice ASAP.

Getting rid of the ugly images

Unfortunately, when you are there with someone when or right after they die, you will be left with an indelible image in your mind of them as a dead person. I am not sure if there is a scientific process for removing these images (ha), but until someone comes up with one, you are stuck with what is in your head. Sometimes, the image of my mother right after she died (and even worse, her body under a sheet on a stretcher on the way out of the house) comes creeping back into my mind, rendering me helpless but to relive those horrors. The day she died, she was on a breathing machine of sorts, and because she died with her mouth open, her jaw was stuck open; agape, as if she was yelling. It was awful. The poor, helpless nurse kept apologizing to us that she couldn't do anything about her jaw.

As if losing a loved one isn't bad enough, having that type of picture of them in your mind is something awful to have to remember. When I watch episodes of Law and Order, they always show a person in the morgue identifying their loved one, and I often wonder why they usually show the relative acting in such a subdued manner. A few tears, yes, but usually they are pretty strong while staring at their GSW-ed child/mother/father/sister on a cold slab. Maybe it is because they aren't showing the person two years later picturing the dead relative in their mind.

So the question is, what do you do with these images? You can't get rid of them. Forgive the cheesy reference, but there is a scene in one of the Harry Potter books where the kids are taught to try to picture something funny in the place of something scary in order to be able to conquer it. Believe it or not, this method works in other places, although probably also in teenage magic. After a while of struggling with my horrific memories, I decided that I was going to take control of the images in my head. When I started to think about my mom as a dead person, I forced myself to remember something funny about her. This was an easy task for me, because my mother was hilarious and was always doing rediculous things to make me laugh. It's all about making a conscious effort to control your memories and relate your sad memories to happy ones. Maybe, hopefully, one day the happy memories will join forces and defeat the sad ones. If you are having the same issue that I was with sad and scary pictures in your head, try my method. It may take some practice, but it really works.

Adoption

When you lose a parent, something that may or may not cross through your mind once or twice is adoption. I don't mean adopting a child for yourself, I mean trying to adopt someone to take the place of your lost parent. I've come across this issue on many occasions. I have considered my friends' mothers, my own mother-in-law, various female relatives, and many random strangers that I have come across in my daily life. I find that the moments when I feel the need to "adopt-a-mom" the most is when I am having a dilemma that would have been otherwise solved by my mother. Most of these dilemmas revolve around sewing, cooking, and family drama. I often find myself peering down the aisles in the fabric store, keeping my eye out for a new mom. I don't, of course, literally mean that I am searching for a new mom, because everyone knows that no one can ever replace your mother. I miss my mother every day. Sometimes in ways that I wouldn't even consider "missing" someone. There is just a constant reminder in my life that something is not the way it is supposed to be. It is a difficult thing to just get over too- wanting a new mom. I work in a cafe, and I have a regular customer that meets his mom for coffee every day, and there are days when I wish I could go and join them and have her give me advice and be a shoulder to lean on. I feel intense jealousy for my friends when they tell me that they just spent the day shopping with their mom, or went home for the weekend and spent quality time with their mom. It is something that I wish I didn't feel, but I can't help it. Feeling these feelings is normal, and the deal with dealing with death is that you have to become accustomed to your new sense of normal, whether you like it or not. You have to adjust, and you have to let yourself regress once in a while. It's okay.

Stacey

This post is dedicated to my friend Stacey Sherwood. She is an amazing friend.

I was having a particularly bad day one day last week, and when I got home there was a slip in my mailbox that said I had a package waiting for me at the post office. Just the idea of a package immediately put me in a better mood. The next day when I picked it up, it was a random box with no note attached, and inside was a pack of three new moleskine notebooks. Shriveled up at the bottom of the box was a note from the company saying that the original box had been destroyed in shipping and that this was the second shipment, and that the original message was enclosed. Tucked into one of the notebooks was a note from my friend Stacey saying that she was thinking of me and wanted to encourage me to write more. It was exactly what I needed to get me out of my funk and to re-establish my need to write and work on my book project. It is amazing- sometimes friends, no matter how far away they are (Stacey lives about 8,000 miles away from me) just know. They fill in the gaps in your life when you really need someone to care. I am so grateful for my friends and for the support that they have shown me.

Thank you, Stacey. You are amazing.

More on Writing

Writing is good for the soul. There is even a college major dedicated to writing for catharsis and teaching other people to write for cathartic reasons. People spend their lives writing in journals that they know nobody will ever read, just because it feels good to get their thoughts out onto paper. I used to fill journals with all of my deepest thoughts, my worries, my tiny everyday happinesses. If it feels good, write.

If you miss someone, one of the best ways to deal with those feelings of loss is to write about the person. Or, write to that person. I mentioned in a previous post that I used to write letters to my mother detailing all of the things I would have told her had she been alive. Write lists- lists of places you could go together, books that person would like to read, foods they might like, etc. My mom was a great cook, and my friend Molly had a blog dedicated to recipes, and my mom would have loved to read about what new recipes Molly is coming up with. Write about things you remember that you did together. "I'll never forget the time we had a picnic in the Weis Markets parking lot when you locked the keys in the car..." Write about things that you wish you had told them. "I wish I had told you about the first time I tried alcohol and it turned into a big disaster and ou house got egged..." Write about things you miss about the person. "I really miss the way you can think of something good about everyone, and put a positive spin on every situation..." Tell them something you never told them when they were alive. "You'll never believe this, but I am really scared of being a mother..."

Believe me, I know that it sounds silly, but writing to a person that is gone will really help you to feel closer to them. Just find a nice comfy spot to curl up in. I find that I am more apt to write when I have the perfect type of paper and the perfect pen. I like moleskine notebooks of all shapes and sizes and RSVP pens. I wish they had RSVP pens in England! Whatever you use, just sit down and try writing to the person you miss. I promise it will help.

Thing One and Thing Two

People like to keep things that belonged to other people because when they hold that thing close to them, they feel closer to that person. This works whether a person is living or dead. For example, I have a ring that my friend Molly gave me when we graduated high school, and when I wear it I am always flooded with fun memories of us growing up together. It think that it is a really good thing to hold onto certain objects like that. On the other hand, if you become too attached to objects, there can be detrimental emotional effects if you lose or damage the object. I have lots of things that belonged to my mother that make me happy- all of her designer bags, some of her clothes, jewelry, and other less important things. One of my most favorite items is a bracelet that was hers and was engraved by my great grandfather, who was an engraver for the Colt revolver company. He was very talented and the bracelet is incredibly beautiful and special. I was wearing it on Sunday when I fell down a flight of stairs and landed on my wrist, crushing the bracelet. I was furious with myself for being so clumsy and for not protecting this precious item from damage, but I was able to put it into perspective because of a previous experience with being too attached to a material item.

Rewind to two years ago, only a few months after my mom had died... I had been carrying around the photo Christmas card that my mom sent out for Christmas of 2004. I put it inside my planner and looked at it about ten times every day. I love the picture that she picked- it was a family portrait from my brother's wedding the previous summer. We were all smiling and it was a great reminder of how happy we all were before ALS. The best part was what my mom wrote on the back- "What a beautiful group of people we all are!" The message was only funny if you knew my mom, but she was very tongue-in-cheek and not at all self-centered enough to say something like that seriously. One day I opened my planner to make a note and the picture was gone. I frantically searched every page, in my bag, all over the restaurant that I was sitting in, but to no avail. The picture was gone. I was devastated. I had become so used to my rituals of looking at that picture throughout the day and being happy to see my mom, and then it was gone. In true form to myself, I spent the day feeling sad and complained and even cried about it to my husband that night. It wasn't until he brought me back to reality and reminded me that I already lost my real mother once, and that crying about a photo was demonstrating a complete loss of perspective that I calmed down. I decided from that point on that I would enjoy my "mom stuff" but not worry if something happened to a "thing."

When I fell down the stairs and crushed my bracelet, I was sad for destroying something so beautiful, but I was able to separate what is a thing from what is a feeling about someone that you carry inside of you all the time. You don't need a bracelet to remind you of someone you love. You don't need a ring to remind you of being a silly teenager. People are not things. Be sentimental but do not lose perspective.

On Christmas

One last comment on the holiday season, as I have been out of writing mode since before Christmas.

I find it really sad that there is so much emphasis put on how "stressful" and "hard" the holidays are now. Examine the modern movies about Christmas just in the past few years, and the majority of the holiday movies are not about the joy of Christmas, or the excitement that children glean from waiting for Santa, but about how much people want to avoid their families and complain about them. Movies like Surviving Christmas, Four Christmases, The Family Stone, Home for the Holidays, and many many others all emphasize the dysfunctional family and how much people loathe being around their families. Why is it that when people have so much, all they can do is complain about and see the faults in the wonderful things that they have? Where has the Christmas spirit gone? I don't even need to get into consumerism at Christmastime, as it is a vile and rampant problem in our society and everyone knows about it (and contributes to it), myself included.

When you lose a family member, there is perpetually a hole in family gatherings, especially at Christmas. Instead of complaining, watching negative movies, and being a part of the general negativity towards family that our society seems to relish, it is a much healthier solution to embrace what you DO have. When you are sad about the absence of a special person, think of a way in which you can honor that person instead of being sad. Do little things to cheer up other members of your family- often trying to make someone else happy will make you happy yourself. Change up the seating plan around the dining room table. People often sit in the same place at big (and small) family gatherings, and if there is an empty chair where that special person used to sit, it will only be a reminder of what you are missing. Instead, move things around a bit. Change up the routine of the holiday. If your family is like mine, every Christmas day for the last thirty years has followed the exact same routine. When my mom died, we decided that we would change the routine so that the fact that mom wasn't there for Christmas wasn't the only thing that had changed. It helped a lot. Losing an important person means that your life will never be the same, but the fact that the person is gone doesn't have to be looming over you all the time, there are ways to make positivity happen again.