Finding Peace in the midst of ALS

This month, I had the opportunity to visit my brother Jon's family twice. The first visit was at the impetus of my brother, Gerry, who lives in London and wanted to visit. Six of the seven Neu siblings were able to gather at Jon's house, working on home improvement projects, visiting, and eating yummy food. I went up yet again two weekends after to help with more home improvement projects and just try to be of service.

With each passing week and every visit, I think about this diagnosis. I try to understand it. How should I help? How should I feel? How DO I feel? Should I be doing this differently? Should I be understanding this differently?

When Jon was first diagnosed with ALS, it was very difficult to come to terms with. I read books about the disease, and the odds he faces.My family members and I started a frenzy of fasting, praying, pleading for healing, for beating those odds. I grappled with images and stories of others with ALS, like the Team Gleason commercial above, and  the documentary "Indestructible". Putting Jon's face into these stories causes me such anguish, even if the stories are infused with hope.

We don't know what the future holds.  But we must acknowledge our reality, including the fact the disease is progressing. While coming to terms with this reality is still difficult, I find peace in these thoughts:

We all still have a lot of hope for that better future. Miracles and cures are always possible.

I repeatedly remind myself that I have not actually lost my brother. In fact, I'm lucky he's still here. Some people lose their loved ones in an instant -- wonderful people who are treasured, just as much as my brother.

Despite my good fortune, I repeatedly experience feelings of devastation and loss. This will likely not stop. And it's OK. Obviously Jon is not gone, but the invincible Jon, and my expectations of a future invincible Jon -- they have been diminished. That is something to grieve.

As much as I feel overwhelmed to process this, I struggle even more to imagine how it would feel to be Jon in this situation. As I consider how to manage emotions in this uncertainty, I try to remember to be most mindful of his.

We, his extended family, fumble with how to anticipate and accommodate Jon's family's needs. But it's a kind, loving thing to fumble with.

My sister is picking up her whole family and moving to Minnesota, just to be there in case that would be helpful. She's awesome. My whole family is awesome.

It doesn't matter to me whether they "really need something" or if something could be put off till later. If there is something to do and I'm able,  I will seize the opportunity. We may not be able to move heaven and earth, or cure my brother, but we can do everything within our capacity to help-- if for no other purpose, just to prove that if we could, we would. And we do.

I am unwilling, despite my good fortune that his disease is not taking him from us more quickly, to give Jon up to ALS. Even if losing Jon to ALS was inevitable (which it's not). I won't give him up till I have to.

ALS And My Brother Jon

Something most people don't know about me. When I meet new people, and love them (Which I usually do. I can't help myself), there's one thing I want to do: I want to share them with the people I love -- aka my family. I imagine bringing them into the fold, and saying, " You're gonna love this." And then they would love it. I think I want to do this so they can enjoy the comfort, joy and love that is my family.  But I can't get you there, mostly because "there" does not exist. My family is geographically very dispersed. You'd think people who like each other so much would live closer together. Alas, 'tis not so.  But I can bring a little of my family to all of you, right here on my blog. And I can bring you no better than the fine specimen named Jonathon Tilton Neu. I shall tell you about him.

As many of you may be aware, my brother, Jon, was recently diagnosed with Lou Gehrig's Disease, also called Amyotrophic Lateral Sclerosis, or ALS. As this news will likely be the impetus for many future posts, I'd like to tell you about my brother. First, he's pretty cute. And we Neu's are incredibly superficial, so we want you to know how good-looking we are, first and foremost. See picture of happy, adored son, devoted brother, and doting father below:

1. Thing to adore about Jon: he is hilarious. Both he and his wife Anne are a good time, in a red-neck, best not come here if you're too good for your britches, kind of way. Pretentious and self-important folk need not apply here. But you're missing out. Just sayin'.

2. Thing to hate about Jon: He's incredibly good at pretty much all strategy games. I love strategy games. And I'm decent at some of them. On some occasions I lose. I much prefer winning, but just by a little, so you still enjoy the game too and think you have a fighting chance. :) Sadly. I lose against Jon pretty much all the time. It's kind of unsatisfying, yet addictive, like gambling at a casino (a fitting analogy, as my chances of winning there are probably as good). My only solace is that everyone I have seen play has succumbed to defeat when they play with Jon. I don't know how he figures out how to win so fast. And while it's remarkable, it drives me crazy.

3. Thing to be worried about Jon: He has amazing power over children. They love him. And they want to do anything that he says just for the joy of pleasing him. I know, because I used to be that young kid and I would have done anything for Jon when I was little. (Ok, so that's still true). Sounds like a good thing, right? Yeah, UNTIL you consider the fact that I now have 28 nieces and nephews.  And while I don't normally worry about holding my own around people smaller than me, I have been made aware of the fact that 20+ of them CAN, in fact, throw you into a pool, whether you want them to or not, as long as Jon wants them to. Jon has a veritable army at his disposal. Small but mighty. You've been warned. 

4. Thing to admire about Jon: He's as strong as an ox. While the rest of us poor saps are portaging canoes by twos, Jon takes the heavy ones all by himself. I'm gonna guess he gets it from my farming grandfather on my mom's side. Us little Jews with my dad's genes just can't hack it.

5. Thing to relish about Jon: He's a feeder and he makes yummy food. Favorite foods to enjoy at his house include homemade pizza (he used to work at a pizza place in high school and they taught him good), goulash & galushka (did I mention we're Hungarian Jews?), all things barbecue, and wassail. And whenever planning a get-together with Jon, you can rest assured that food will be a primary consideration. Even ahead of sleeping arrangements. It's a big deal.

6. Thing to idolize about Jon: He has a heart of gold. he's taught me at least a few times about how to be less judgmental and to pay attention to important, as opposed to stupid, things. He has a gift for making people feel welcome and special. Maybe it's because he has a great laugh which he applies liberally, and he has a charming, witty, self-deprecating sense of humor.Whatever it is that he has, it disarms everyone.

7. Thing to take into consideration when doing anything with Jon: He has an intimate relationship with the laws of physics, and tests them regularly, with mostly success but some fails. You wanna know how large of a bonfire you can build next to your house without catching your home on fire? Jon knows. You wanna know how to handle an off-road vehicle without flipping over or pitching anyone off? Jon mostly knows. I think. You wanna know how fast and curvy you can drive the boat without killing the people riding on the tube you're pulling? You hope Jon knows. Because he's the one driving. You wanna know the limits of the power of a potato gun? I'm not sure, but I'm gonna guess Jon knows. I'm sure he's come across one. Jon's experience with most things imbues a naive level of confidence in his ability to take care of you while getting very close to the limits of important laws. Like gravity. Momentum. And Thermodynamics. And you wade into the situation thinking, "It's all good because he's tested the limits already." And that's true. And he'll verify that it's true, and that everything is good. And it IS all good... until you realize he's still "testing".

8. Thing to always remember about Jon: Call him Philippe. No, really. Do. Why? Well, my Dad is French, so he probably didn't know better. And my mother is innately very accommodating. But being the good mother she is, she couldn't let that happen, so she went back to the hospital to have it changed on the birth certificate to Jonathon. Only, she didn't know it was too late. Philippe would never totally be gone when there were six siblings to remember Philippe existed.

9. Thing to grin about Jon: Sometimes he makes sounds like Yogi Bear. It's awesome. 

10. Thing that makes this thing about Jon really hard: He has a huge presence, and is sorely missed when he's not there. 

Tom Hanks is my favorite actor.And I know he's an American sweetheart to many for a number of reasons, but I think TH was bound to be my favorite one because he looks like Jon. I named my car Tom Hanks, as associating the car with both the actor and  my brother makes me smile on a regular basis.

So, here's my brother Jon. You can fall in love with him too. I will probably be talking a lot about him and expounding on meditations on life and faith that have occupied my mind and heart since his diagnosis. More to come. Much love to you all.

Bad News

I got on the bus after work. I left the office just a few minutes after I got the text. “Confirmed.” I didn’t leave the office because I was upset about the news. And I didn’t leave the office early or rushed, except that I was rushed because I was about to miss the bus. However, the timing was serendipitous, as it was best, as the news sunk in, that I was on the bus. On the bus, though surrounded by strangers, I was also alone, sitting in my own row, able to turn my face to the window that I knew was tinted so that no one in traffic could see me as we passed. And the roar of traffic, the hum of the large bus engine, and the loud air conditioning system were enough to give me hope that I was in my own space; that all that noise would separate me from my surroundings like walls,  enough to drown out my silent cries and distract from my anguished side face sufficient that no other passengers would notice. It came faster than I thought it would, and I was so glad for it.

Glad to cry? Yes. I wanted to cry all the way home. I wanted to cry long enough so that I could come home and see Ben, and he would see me and know that I was hurt. And I could cry about it in his arms. But I knew that was unlikely because the bus ride is about 45 minutes, and after that time passes, I have a 10 minute drive from the park and ride. And I rarely cry for a full hour. I was sad. And thinking about my own sadness about this made me feel quite vain. After all, it wasn’t my news. Why did I need anyone to see me? I was already crying in public, after all. And yet, despite my wish to expose my pain, I had my hair as much forward in front of my face, and my face angled towards the window as much as possible, so that none of the other passengers would be exposed to my intimate, and exposed emotions.

I cried because I was defiant in the face of the news. I refused to accept it and yet I knew I was helpless to change it. Confirmed. I had assumed for the last two weeks that this would be the news. They’d already told me there as about an 85% likelihood this was the case. And I had already cried about it multiple times. Did I really need to cry about it again? Apparently. And I was glad to. My heart was feeling broken. I let my mind explore all the fears this diagnosis could conjure. Fears of mine, and threatening realities for all those closest. I don’t want these visions to become true. I thought if I stopped thinking about it then my tears would stop. But even in dwelling on my own selfish desires, desire to be crying and to cry with Ben, for my own selfish purposes, the tears did not stop. 

I cried up until we pulled out of the park & ride stop before mine. That was about 30 minutes into my 45 minute ride. I would not cry all the way home after all. As I suspected. But I would defiantly leave my mascara all over my cheeks so that he knew. I would not wipe this hurt away or soften it. I wanted it to be recognizable and clear. As I pulled down the mirror in my car visor to see how ridiculous I really looked, I was surprised by how much more my right eye had teared up than my left, as evidenced by the uneven distribution of black crumbles of mascara over my two cheeks.

I drove home a stoic. And I walked in the door. Ben was just a few steps away, sitting at the computer in the office, which has its doorway facing the door to the garage, where I entered the house. Upon hearing the stir of my arrival, he said, “You’re home! How was your day?"  It was a very normal, cheery greeting. And though I had wanted to weep in his arms, the normalcy evoked a reflexive normalcy in myself. Suddenly, I wanted to say “Good. How was yours?” And I would have probably responded that way to anyone else, even in that moment, on that evening. But it was Ben. And before I replied, I admonished myself to respond acknowledging what had happened, as if to respond normally would have been disrespectful. I would have told him earlier. I would have sent him a text too. But I left my phone in the office in my rush not to miss the bus. And perhaps because I was more frazzled by the news than I had thought. He would want to know too. And so I responded with something that let him know that I’d gotten bad news, but I can’t really recall what I said. He said, “They got the results back? What did they say?” And only then did I look at him, and said, “I think you can guess.” And he saw my make-up stained cheeks. I was so glad for them, not for my vanity that he would know I was hurt, but because it meant I didn’t have to say any of those words. 

Saying things out loud is more earth-shattering than just understanding something, and it would have been painful to do in that moment. It was shattering enough that we were acknowledging the news out loud. Even in indirect references. I was glad not to have to say the words. Or word, as it were. I put my bags down. And Ben, as sweet as he was, and as strange as it must have been to him as I am not sure if I have ever cried in his arms, even after five years of marriage, came to me to give me comfort. And to my relief, all the tears came right back. And I cried for a few moments.

I made sure not to cry for too long. After all, I had cried on the bus enough. Was it controlled crying? What's uncontrolled crying? My emotional outburst was paradoxical to the controlled thoughts in my head. When is it proper to stop? Should I stop now because I'd already cried enough? I don't want to wear out Ben's shoulder. Perhaps if I don't stop myself now, I could go on forever. Or just too long. Stop now? Now? Now. I can stop now. I never seem to let my brain turn off enough to let my emotions have their way. They never take me over completely. And I wondered if at this point I just cried because I was in a habit of crying, rather than crying because of the news.

But maybe that’s how it is when you get bad news. Perhaps the news itself is like a dagger. And it wounds you. And even if you remove the dagger, and don’t think about it, you’re still wounded. And you still bleed. And it bleeds out after that, whenever something brushes up against it to break up the scab, be it external provocation, a passing thought, or just because you're moving around too much and hurting things inside that are still fragile. Yes, it’s like a wound.

This does not explain the joy in my tears. There was a time when I did not cry like this. When tragedy would strike those I loved. And while I knew my soul was wounded, or at least very much should be, I did not feel the wounds. As a young girl, I remember riding on the bus from school, conjuring up imaginings of family tragedy and personal losses, just to see if I could get myself to cry.  I suspect that on a subconscious level I was aware I was disconnected from my feelings. But I didn’t know they’d been dislodged from me like one might have a dislocated shoulder.

It wasn’t until I started dating Ben that I learned I had issues with emotional dislocation. I found myself  on several occasions during our courtship crying for no reason, unprovoked, without any daggers to my soul, by odd triggers. And I went to therapy because I had no idea how else to figure out what was going on. And in therapy, emotions I had buried, unable to acknowledge at a much more tender age, came bubbling up to the surface. I acknowledged them out loud for the first time, over 20 years after they happened. Quiet all that time. And yet still there. I had no idea until then that there were words I had never said out loud. Or that saying things out loud mattered so much. Or hurt so much. And they were shattering to say. But they were also very healing. All those years, I had no idea how much I wasn’t feeling. My emotions have since come back to me, taking their place close to me, more and more as time goes by.

So it may seem strange to some. And though it is selfish and odd to put it this way, I was so grateful to be devastated. I wondered if it wasn’t possible the Savior was also glad in the garden of Gethsemane to feel all he felt for our pains and our anguishes and our wounded souls. Because I think, at its most basic level, pain is often the thing that connects us. For me, it is an evidence of my devotion and my love. But rather than a conscious sense of devotion as I’ve had in the past, it is instinctive. I have been wounded and I can feel this wound. And each time they come, though I would wish these daggers to cease to exist, I would never wish to not feel the resulting pain from the emotional wounds and share in that agony. For those you love, you wish to feel nothing less. 

Special Announcement

Ok, so another reason I haven't had a lot to blog about the last couple of weeks is because, aside from being busy with the dress business, I have been very busy with other plans that I have not, until now, been able to formally announce. However, Male and I have just decided it's too hard to keep a secret from people (and to be quite honest, I have been terrible with leaking it out to certain people who it seemed impossible for me not to tell. I am too honest and open a person to keep this kind of a secret well. I mean really! Especially when you put me in a car on a 6 hour trip to Vegas for three days with three VERY GOOD friends.)

So, without further ado: Ben and I are getting married.

TADA!

Many of you have known this was coming. I've kinda known too. But only kinda. What can I say? It's not right till you're ready, and we really took THIS long for that to happen. And now it's great! I am really, really excited! Especially because now we are doing all that planning and preparation stuff and it's getting kind of fun. I just bought my wedding dress today! Now, of course, finding the right shoes... that is going to take me more time. MUCH more time.

We have also picked a date & time. We will be wed on Friday, September 26th, 2008 at the Bountiful Temple and be having a reception in Salt Lake that night. Please mark your calendars as very very busy that day and expect invitations with cheesy, happy couple pictures to be coming in the mail within the next couple months.

It is so soon, and I have virtually no time to plan an event like this, especially when the date is so soon (did I mention it was soon?), and I think we're nuts for doing so fast. Fast being relative, considering we've been buzzing around each other, dating and talking to and about each other for the past three years. But you know what I mean.

Umm, yeah. So, that's my big news. Wedding plans. And for anyone who doesn't know -- Male is Ben.

Of course, now I might actually have to tell him about my blog. Geez. Hmm... Maybe not QUITE yet. Somethings are better disclosed AFTER the wedding day. :)

A big Word: "Love"

So, I have been doing a lot of thinking about his wonderful word, as have many people, and I wanted to have a conversation about it with my dear sweet co-blogger before I posted this, but alas, my co-blogger runs to the ends of the earth to be busier and better than I. For I am forlorn and lost, a loser without a place, destined to be drifting in the whirlwinds of an endless emotionless torment, undefined by passion, language, or speech.

So, anyways, because there are so many different forms and kinds of love, and all that broad vagueness associated with feeling emotion, and the unquantifiable X factor, I will try to limit this post to "Love" in the context of pursuing a romantic relationship.

And in that context, I do not ask when is it appropriate to use it, but what does it mean?

about.com states it as "A deep, tender, ineffable feeling of affection and solicitude toward a person, such as that arising from kinship, recognition of attractive qualities, or a sense of underlying oneness."

I guess the part that I usually get hung up on is, and this is where I might diverge from a lot of people. While I agree that love is a strong emotional response, a bigger question is, what does that mean. I often think of love as, at a minimum, a desire for commitment. Not a representation of commitment, but a desire to be committed to that person, however you define commitment. (Please remember this is only in the context of pursuing a romantic interest.)

The reason I say that is because, without the commitment portion, I don't think there is really a big difference between love and like. A degree of emotion could be the only difference, but what does a deeper sense of emotion mean if not a desire to be committed. Now, I am not going to say that commitment means marriage, or even exclusive dating, although, culturally I would argue that it is very relevant for marriage, and my gut instinct is it is relevant in exclusive dating, and that using the ol' L word is brash and unscrupulous before at a minimum exclusive dating. Granted circumstances do arise where you were dating, and are still in love with someone, and then you are in other circumstances, yada yada.

But my gut instinct is you have to have gotten there at some point in the timeline.

Anyways, so what is love? Is it just emotion? Is it commitment? Just a desire? Is it crazy? (Well, we all know the answer to that!)

What's TOO Different?

I've been freaking out over the past couple of weeks. I freak often, actually. This is not abnormal for me. I've been doing it for about a year. And for this whole year I've been freaking out over the same thing. Go figure. In all other respects, I'm quite a non-freaker. But on this one, itsy-bitsy, tiny, miniscule aspect of my life that has existed since some time last year, I freak. Regularly. That special, volatile, calm-shattering part of my life that causes me to freak happens to be.......... drumroll, please........... the current relationship that I am in. Surprise, surprise. Sometimes I think all this freaking out is a very unhealthy side effect and that I should get rid of said relationship. It's really undesirable to freak out regularly. It's kind of unsettling. And then, sometimes I think it's normal. Unavoidable, even.

The other party to this relationship is a boy/man/what-have-you. He is, as far as physical details and descriptions, cute. As for years, His age ranges from 5-52, depending on the day. Sometimes he behaves like he's five. Sometimes he seems to act like a parent, ranging more around 52. And sometimes, most frequently, he acts a very likeable age. We'll call this boy/man/what-have-you "Male".

I have had MANY reasons for freaking out in the past over my relationship with Male. There is not enough blogging that exists to cover these episodes. And oh, my poor little hands if I were to try. We'll just address this last freak-out.

Male has been driving me nuts lately. When we hang out, I've found I'm not having the best of times. And I've been wondering why on earth I'm still dating Male if we don't have a good time together.

Why the sudden change? Well, its' not THAT sudden. I've always wondered if we have a good enough time together. How "best of friends" are you supposed to be in order to be happy together? In order to be, dare I say, "Right" for each other? In regards to expectations, I wonder where on the spectrum between Hollywood and Reality, mine lie. I feel like we're trying to cook something without the recipe. And with ingredients that lack labels. And I would like it better if I could do something as straighforward and easy as giving our relationship a litmus test to see what color on the scale of ph healthiness for relationships we might be.

But that aside, back to the problem at hand. Lately, I find that Male and I end up arguing. And we argue over things I had no intention and no desire to argue over. Inconsequential things. How did I find this conversation? Why am I here? Let me out post-haste! And then, how do I avoid it in the future? I wonder. I'm not an arguer. Debater, surrrre. Especially if you've got something intriguing. But arguer, no. I hate real conflict.

I take note of this new phenomenon. And aside from expressing to Male the undesirability and my frustration of individual arguments as they arise, I make a personal, mental note that if this continues, "Houston, I think we may have a fatal problem." Then Male and I talk about movies. We like to watch different movies. He errs on the conservative side in his movie choices. I.... Well, I happen to think I don't err at all in this area of my decision-making. (Don't we all?) So, we're different. I knew that. I'll go watch some of these movies without Male. Then I plan a vacation with a bunch of friends. Male does not approve of the coed housing arrangements, so he's not coming. I find this rule very traditional, old-fashioned and not at all to my understanding. So, we're different. I knew that. I'll go on the trip without Male.

But then all these arguments and differences concern me. I think they really could be fatal. I think each one is a reflection of a basic difference that could represent innumerable other different viewpoints and loads of future differences. Enough to fill buckets and buckets of years. And enough to cause even more frustration... enough to fill an eternity. We may be chronically doomed to come from different places and also end up in different places. I don't LIKE this. I'm very concerned.

So, I talked with Male about my concern with all these arguments and all these differences. Turns out the "arguments" as I call them, were just him "giving me a hard time" as he likes to call them. I have trouble computing this concept of what it is to "give a hard time". I do not do this. This is new. Why does one do this? What kind of sport is this? And why does Male think it is fun? To these questions, Male has few answers that are informative. Again, we're different. I knew that.

"But what about the differences?" I say. "You like having more rules than I like having. And I refuse to follow your rules. And we don't meet in the middle anywhere with these rules. We are missing that 'common ground' that I thought we might find after we started dating."

Male's response: "There are lots of things couples compromise on: jobs, children's education, whether to move or not, parenting.... lots of things."

I'm not seeing how this gives us hope. I say, "If there are all these compromises, doesn't it makes sense to try to minimize the differences two people have, so there is less compromising to worry about?"

Male says, "Yes."

I also fail to see how this gives us hope. Male doesn't seem phased. I'm a bit perplexed.

Male is no help to me here, so I go talk to my sister. She is married, so probably knowledgeable on the subject. She has a boy/man/what-have-you that she has to deal with ALL THE TIME. And she listens to me. And she is, for the most part, impartial when it comes to my relationship with Male. I love that about her.

Her take on it: "Duh, Sharon. Men and women are different. If you knew that going in, then that should make these realizations easier for you."

Hmmm.... she doesn't think it's cause for breaking up. It doesn't phase her either. Peculiar. And I wonder if I'm blowing it out of proportion. And then I wonder if "differences" are really what I'm worried about. Yes. And no.

Once again, I find a huge lack of people who have "The Answer." Not advice. I hate advice. I always think it's wrong and I rarely follow it. What I am always searching for is the answer, which so far I have not found in myself or anyone else (as I have searched endlessly in thought and conversation with myself and anyone, and found it in neither place). No one can tell me if Male and I are a good or bad match. But I've never met no one. So I don't know if we're doomed or full of promise. Whether I'm with him because I really like "us", and "we"make me happy, or because I am a pleaser, hate conflict, and haven't found the good enough reason I'm looking for to leave "us". How can I know myself so little? Well, honestly, I don't know. That's a very good question. But my guess is that "myself" and "anyone" still don't know, "no one" still evades me, and "somebody" who does know has yet to tell me. So, for now, I choose to continue and embrace the life I currently lead of freaking out on a regular basis.