Wednesday, December 23, 2015

I can handle anything for six Tuesdays

The other night Cara's mother Joyce and I were talking on the phone about our plans for Christmas. I'm going to be having dinner with my family and exchanging presents on Christmas Eve and then I'll be going to see Cara's parents in the afternoon on Christmas Day. Joyce was expressing some doubt over whether her home was currently in a condition suitable for having visitors. She said that maybe we could go have lunch together at a restaurant. I told her that would be fine; options would be limited on Christmas Day but there would be some Chinese restaurants open and I started looking for other possibilities as well.

Joyce told me she could tell I would prefer to visit my in-laws at their home. "Oh, all right, it will be okay," she said. "I can handle anything-"

Instead of completing the sentence, she paused and then asked if I knew what she was referencing.

I did know. "I can handle anything for six Tuesdays," I said.

When Cara was a child and being signed up for a six-week session of swimming lessons, she was asked whether she could handle it. "I can handle anything for six Tuesdays," was little Cara's confident reply, and this was so adorable that it became a catchphrase in her family and was repeated many times over the years (which no doubt got on Cara's nerves at times). It was one of the first stories about her childhood and her family that she ever told me when we were getting to know each other. Now it's something Joyce remembers as a symbol of how Cara lived her life and how Joyce wants to emulate that spirit. She told me it's not easy, but she's really trying to live life with Cara as an example. I can definitely relate to that.

Sunday, December 20, 2015

But it isn't just a dream. This is your life.

(The title of this post is from the lyrics of a song by local musician Uno Lady. I saw her perform at the 78th Street Studios on Friday and also enjoyed seeing some friends there. She's really good!)

To preface this, I want to say that there is a fear I have with writing or talking about things like this that if I'm too negative, it will make people less interested in interacting with or spending time with me. It is probably a fear that a lot of people who are going through hard times have. But I'm pretty sure it's not true, at least not for people who really care and who are worth having as close friends. I like writing, and I'd like to think that, like Cara, I have a fairly interesting perspective on life that's worth sharing, so I'm going to share it.

Do you ever feel like there is something fundamentally wrong about the reality you inhabit?

After Cara's mother and I picked up the Papa John's pizza that would ultimately be her last meal, I sat next to her hospital bed and watched the second half of game 3 of the Cavs' first round playoff series as the Cavs took a commanding 3-0 lead over the Boston Celtics. I had no idea at the time how imminent Cara's passing was.

Another bad thing that happened just days later, although it obviously pales in comparison, is that Kevin Love suffered a season-ending injury during the Cavs' series-clinching game four victory.

This event added to my sense that things just weren't right with the world. It was like I was in the "bad timeline." Somewhere there was a reality where Cara was still alive and where Kevin Love didn't get hurt. In that reality, I'd like to think the Cavs went on to win the NBA title and Cara and I enjoyed celebrating the long-awaited championship with the rest of our city.

This weekend sees the release of The Force Awakens, the seventh film in the Star Wars saga. I saw it with some friends on Thursday night and liked it very, very much (no significant spoilers follow, I promise). In terms of plot and world-building it might be the weakest of the movies, but the characters were easily more compelling and likable than those in the prequel trilogy. It was a fun ride and it packed an emotional punch at the same time. I'm pretty sure it packed a bigger emotional punch for me than for most people.

From about 1997 to 2005 (that is, my high school and undergraduate years), I was pretty much totally obsessed with Star Wars. I watched the movies over and over, read all the expanded universe books, and spent much of my free time on message boards and playing Star Wars computer games. I even wrote, during my later high school and early college years, two novel-length works of Star Wars fan fiction (which, if nothing else, did help me hone my writing skills). Running cross country and track was my biggest passion in life, but it's safe to say that Star Wars was in second place.

In 2005, Revenge of the Sith came out, and it appeared that the saga was complete. And before long, I just moved on to other interests. I didn't stop liking Star Wars, but it ceased to be a major part of my life. It was that same year, in fact, that I got into indie music and going to concerts, so in a way I guess that was what replaced Star Wars. In 2006, I met Cara, and my life completely changed. (I suppose it is worth mentioning that, although she wasn't particularly into Star Wars, we did watch Return of the Jedi on our first date - my suggestion because she had told me she had seen the first two movies of the original trilogy but not the third.)

In 2005, I never would have imagined that one day I would be sitting in a movie theater watching a seventh Star Wars movie. Not in the slightest. So it was a very surreal experience on Thursday night as those familiar title words appeared on the screen.

In 2005, I also never would have imagined that I would soon meet an amazing woman, fall in love, get married, and then she would die of lung cancer at the age of 36.

Cara said that after she was diagnosed with cancer, thoughts like "I can't believe this is really my life" went through her mind. Naturally, the same thing happened to me. And it has again at various points since her death.

By the way, losing your spouse can result in things making you very emotional that previously wouldn't have had such an effect. There is a scene in The Force Awakens in which Han sees Leia for the first time in quite a while, with Harrison Ford and Carrie Fisher reprising their old, familiar roles. And yeah, I started crying, because it made me think about how I'll never get to see Cara grow old.

This weekend I was supposed to be in Portland, Oregon seeing a very special show by one of my favorite bands. After much agonizing over the decision, I ended up canceling the trip due to a muscle strain I incurred playing basketball on Wednesday. It hurt pretty badly at first. I was using crutches to get between my parking and work. It's gotten better, though, and I now feel like my leg is probably good enough that it would have been okay to go on the trip. That doesn't mean I made the wrong decision, though. The truth is, the injury by itself wouldn't have been enough to convince me not to go. It was the combination of the injury and my ongoing chronic pain. One of the awful things about really bad chronic pain is it can turn something you are excited about into something you fear. This is because if the pain happens to be bad enough, it can ruin the experience, and the knowledge that you would have had a really great time otherwise makes you feel even worse. Actually, when I started writing my previous blog post, I was feeling severely depressed, but in the time since I had begun to do a lot better - somewhat better physically, but also a lot better emotionally (still not great, but not terrible, either). An important part of that was that I was beginning to feel I had at least a modicum of control over the situation. I couldn't make the pain go away, but I could at least usually help myself feel somewhat better with a good workout. Being injured temporarily robs me of that ability. I was already stressing out a lot about the trip (which I originally planned before the chronic pain recurrence, so at that time it was simply something to be very excited about, not something to fear). The injury increased my stress exponentially.

It's still possible that I might have had a really amazing time had I gone. It's also possible I would have had an awful time. I will never know. I do know that I made a decision based on fear, which is not something I generally do, and it's not a good feeling. That doesn't mean it was the wrong decision, but again, I'll never know. When I called to cancel my flight I again had thoughts of "I can't believe this is really happening; this isn't how my life is supposed to be." Because going on this trip was something that really, really meant a lot to me. You might notice that now I can envision a life that's supposed to be that doesn't include Cara being alive. Obviously, in my ideal world she would still be alive and she wouldn't have cancer. But there is a reality in which I have a very happy life despite her being gone. It's not the reality I currently inhabit, but it's something to strive toward.

Why am I writing all this? Besides being an outlet for me, I also want people to know what it's like to go through the things I'm going through. Much like how Cara gave people an inside look at what it's like to live with stage IV lung cancer. There are a lot of people out there going through similar things who aren't as open about it. Some people who are going through hard times, whether it be due to chronic pain or due to other emotional or mental issues, might find that some of their friends become more distant because the person with the problem is suddenly less cheery and less fun to be around. This hasn't happened to me, but I know it can happen. So don't make assumptions. Be kind to those around you.

I've found that with the hard times I've had recently, I've been clinging more tightly to my memories of Cara. So I want to share some good memories from earlier this year.

I'm currently watching the Cavs game with Kyrie Irving making his season debut after his injury in game one of the Finals (another "bad timeline" moment - his injury happened in overtime of a game one loss, and the Cavs just barely missed a shot that would have won in regulation and thus resulted in a 1-0 series lead and no fractured kneecap for Kyrie). This takes me back to his amazing performance against the Spurs on March 12 of this year, which might be my favorite basketball game I've ever watched. I was watching the game in our living room and Cara was in bed. She said that she knew something really exciting must have happened because I audibly reacted (a totally involuntary thing, in fact) when Kyrie nailed the game-tying three as regulation time expired.

Another memory of Cara was sparked yesterday when I was in the car and a radio host said something about how she liked odd numbers. Cara did not like odd numbers, something I heard many times over the years. I remembered a moment from earlier this year when I made the observation to her that in Columbus (where we both grew up) all of the main broadcast TV networks have even numbers (4, 6, 10, 28) whereas in Cleveland they are mostly odd numbers (3, 5, 8, 19). I wondered if she disliked this. She said that I was right; she did. I was glad to be reminded of this moment, which is why I wanted to write it down. It was one of those little indications of just how close a bond we had.

Thursday, December 10, 2015

Dear Jeff: Sorry, you're too happy; that's not permitted

It has been a struggle for me on whether I should "go public" with this. It's certainly not something I would have done in the past. But I'm a very different person now from who I used to be. I think as much as I was changed by all the time I spent with Cara, her death may have changed me even more. I like to think of the person I am now as something like a combination of Cara and the old me. I would like to think I can take the best traits of each of those people and combine them into one even better person. That's how I try every day to carry her spirit forward.

One example of how much I've changed that I like to recall: in June I went to Colorado to see the band Belle and Sebastian at Red Rocks Amphitheatre, a trip that Cara and I were going to take together. I ended up going by myself. At the show, I decided that I didn't want to just sit there by myself the whole time, I wanted to talk to someone about why I was there and about my and Cara's story. So after the opening act finished playing, I struck up a conversation with the woman sitting next to me, whose name was Jess. That's something the old me never would have done. We had a really nice chat. After a while, one of her friends who was sitting nearby walked over and they started talking. They were trying to remember the name of the opener. "Charles Bradley," I volunteered.

"Thanks, Jeff," Jess said. Then she told her friend, "This is Jeff. We just met and now we're friends."

"I guess that's what happens to extroverts," her friend replied.

I didn't say anything about this remark, but silently, I felt a real sense of wonder, because anyone who has known me for most of my life would never in a million years call me an extrovert. But at that moment I realized, I don't have to be constrained by who I was in the past. I can be whoever I want to be. If I feel like being an extrovert, why can't I be an extrovert? Cara could talk to anyone and make them feel like her friend. Why shouldn't I be the same way? It was a moment that I'll remember for the rest of my life.

Anyway, Cara kept a positive attitude throughout her battle with cancer but, especially with her blogging, she was also very open about the struggles she was having. She went through a lot of hard times. I went through them with her.

In the aftermath of Cara's death, I was asked by several people, "How are you really feeling?" It was like they thought surely my outer mostly cheery attitude must be a facade and I must actually be miserable inside. But that wasn't the case. Of course I was really sad about Cara, but I was also feeling a lot of happiness both from my memories of Cara and from all the good things I still had in my life. It's like in the movie Inside Out (see it if you haven't), sadness and joy work together to make us complete people. I wasn't secretly really depressed in the weeks and months after Cara died. But the truth is, I have a lot of experience with pretending things are okay in my life when they really aren't. A whole lot of experience. And believe it or not, it has nothing to do with Cara having cancer or dying.

Various reports I found from a quick Google search suggest that over a third of U.S. adults suffer from some form of chronic pain. I've found it's not something that many people talk about very much. I have to believe, though, that even with how common chronic pain is, I'm something of an outlier. With no exaggeration, over the course of my life I have had distinct symptoms of chronic pain in ten different parts of my body (a lot of this is really personal stuff and I don't want to list all the different pain issues; talking about this at all is a pretty big step for me). I know that probably sounds crazy to a lot of people, but it is absolutely true. It has caused me to wonder whether there is just something fundamentally screwy about my nervous system. Perhaps it's something I should explore with a doctor.

I went to all of Cara's doctor's appointments with her during her battle with cancer, and one question that would invariably be asked was how her pain was. And there were some appointments when she would say she wasn't in any pain. I would kind of marvel at that, silently. I can't even imagine what it's like to not be in pain on a daily basis. The last time I had a pain-free life was now a little more than 17 years ago. But there's pain, and then there's pain. The presence of pain has been a constant, but the location and severity of that pain has varied dramatically over the months and years. I realized several years ago a rather disheartening realization. The main determinant of how happy I was during any given period of time was how much pain I was in. If my pain was generally at low to moderate levels, I was generally happy. If my pain was at high to severe levels, I was generally unhappy. This was disheartening because it was something I often had so little control over. I'm not saying I've overall had an unhappy life. I've had a lot of happy times. But I've also had a lot of unhappy times. Some time after Cara was diagnosed with cancer, I realized it was still true - the main determinant of my happiness was still my level of pain, not how Cara was doing. (Thankfully, for most of Cara's battle with cancer, except for a few months during 2014, my various sources of pain were all at manageable levels. I'm very glad that I wasn't in horrible physical pain during the last few months of her life.) And then something occurred to me that I didn't like to think about but I was pretty sure was true - even if Cara died, it would probably still be the case that my physical pain, not Cara's absence vs. presence, would be the biggest factor in how much I was able to enjoy my life.

I've been hit with a stark demonstration of just how right I was.

The absolute worst chronic pain condition that I've had (and I don't want to go publicly into details of what it is, so please respect that and don't ask me) was something that bothered me tremendously in much of 2007 and 2008 and some of 2009. For lengthy periods of time, I was absolutely miserable, due to being in unbearable pain for large parts of most days. And near the end of October of this year, for who knows what reason, it came back, just as bad as ever.

At first I thought maybe it was a transient thing, and would last just a day or two. That's happened before. But it wasn't. And then for the first few weeks, at times that I was feeling less bad, I would imagine it was the start of a trend. I'm sure other people who have had bad chronic pain can relate. But then it would just get worse again.

There's a process that has become depressingly familiar to me. I'm sure my parents remember the first instances of this process. Something starts hurting. Hurting constantly. After a week or two, depending on how bad the pain is, I go see a doctor. The doctor can't find anything definitively wrong but offers some suggestions and prescribes some medication. Some tests are run that don't reveal anything. The medication does nothing for my pain. I go to some followup appointments, perhaps see another doctor and/or a physical therapist. Eventually I'm forced to concede that none of it is helping. More time passes (how much varies widely but I'm generally talking between a few months and two years) and after a while the pain starts to diminish and then becomes part of my general background of pain. Or perhaps something new will start hurting a lot and take its place. Incidentally, as of right now, I'm still in the early stages of this process. The last time I dealt with this pain, I went through a number of appointments, tests, and treatments, with no apparent benefit, but there are apparently still things to try that weren't tried back then.

What makes this all the more agonizing is remembering how great I was feeling about my life immediately before this started. That was a remarkable thing, considering that it was just April of this year when I lost my wife of almost four years and best friend of nine years to lung cancer. I think a lot of people have been pretty amazed at how well I've seemed to handle the whole thing. That I was able to do so well is, I think, in large part due to the great example that Cara set in how to deal with tremendous adversity. But I think it's also partly because the aftermath of Cara's death was, in fact, not the worst period of time that I've experienced in my life. My worst periods of chronic pain were harder on me. And lately, I feel like Cara's death wasn't even close to the worst thing I've experienced in my life. Which seems kind of callous. Which makes me feel even worse about the whole thing.

Immediately before this started, I was still grieving for Cara and feeling plenty of sadness over her loss, but overall, I was very, very happy. I was not only the happiest I had been since before she died, but I was honestly the happiest I'd been all year, including the part of the year when she was still alive. That's not meant to diminish the importance of her to me. In part, it's an acknowledgment that the last few months of her life had a lot of tough times, because she really wasn't feeling well a lot of the time. The good still outweighed the bad (for me, certainly; I hope she felt the same way) and I'm grateful for that time, but it wasn't easy. Beyond that, after she died I took it as something of a personal challenge that I could still have a happy and fulfilling life. I was managing to succeed beyond my wildest dreams, and it was by carrying her spirit with me that I was able to do that.

Because I'm weird like that, I drew a graph trying to illustrate my overall level of happiness/unhappiness over the course of this year, with some events that caused my happiness to decrease labeled. You can obviously notice the steep cliff at the end of October. I think, actually, one of the reasons I was so happy before that was that my newfound good feelings about my life came on the heels of such tremendous heartbreak. The fact that I was able to feel truly happy again after going through such a hard time made that happiness all the sweeter. In a similar manner, having gone through all of that, putting my life back together, and then suddenly being transported back to feeling the worst I ever have resulted in my unhappiness being magnified. And honestly, it's been a traumatic experience. My life very rapidly went from being an adventure full of exciting things to do, places to go, and people to meet to being a constant struggle to just not be miserable all the time.

The Saturday after Thanksgiving the funeral home held a lovely ceremony in which families could hang ornaments in memory of their loved ones who passed away this year on an outdoor Christmas tree. During the ceremony, there was talk of how this holiday season could be a difficult time because it can be hard to feel the joy we are told by society to feel when we are still in mourning. Unfortunately, I happened to be in an exceptional amount of pain that day. All I could think about was yes, this is a very difficult time for me, but it's not because I miss Cara. Of course, I do miss Cara a lot. I'm not saying this season would be easy were I not in such pain. But the physical pain is worse than the sorrow. A person can be both happy and sad at the same time. Sadness is not actually the opposite of happiness; unhappiness is a feeling that can be quite distinct from sadness. It can even make it harder to feel sad about missing Cara, because at times it can be hard to care about anything other than how much pain I'm in. When I do feel sad about Cara, that can be a welcome feeling. The loss of loved ones is a part of life that we all have to go through. Being in seemingly unending, agonizing physical pain is not something that we all have to go through. It would be nice if no one had to go through it.

Another reason that I was so happy in mid-October, going back to the idea of my happiness being primarily determined by my pain, is that for a little while there my pain levels were quite low. Thinking about this makes me realize that the happiest period of time in my life was probably the summer of 2011 when Cara and I got married and then honeymooned in Costa Rica. Obviously those are great causes for happiness, but over the next few years Cara's and my love for each other continued to grow and grow - why didn't I continue to grow happier? It was because that summer of 2011 happened to be a time when all my pain was pretty well under control. Near the end of 2011 a new, different but also very bad chronic pain issue popped up. It continued to bother me for most of 2012. 2012 was a pretty bad year for me. By the time that issue had resolved itself, there were other major sources of stress due to Cara's various health issues. First frustration over her difficulties with getting pregnant due to her PCOS. Then the onset of her cancer-related symptoms, which took a big toll on her even before we knew their true cause. (In fact, I observed that after Cara was diagnosed, she took on a much more positive attitude and seemed much more at peace with her life than she had been in the previous years.)

I remember when Cara had been admitted to the hospital in August 2013 and it had been discovered that she had blood clots, but we did not yet have any idea they were because of cancer. At that point, feeling thankful that we had an explanation for her recent problems and not having the slightest inkling that we would soon be hit with the horror of a stage IV cancer diagnosis, I said to her somewhat bemusedly, "I thought I was the one with bad luck when it comes to health issues."

The fact that we as human beings even exist at all in this vast universe is a source of wonder to me. Evolution is a very amazing process but also a very imperfect process. The human body is so complex and so prone to failure in so many ways. Cara and I both had a lot of bad luck, but we shared an amazing life together.

I'm going to go on a little sociopolitical tangent here. My and Cara's experiences have made me realize that opposition to universal health care is not only incredibly cruel but also goes against all the values upon which this country was supposedly founded. That all people have inalienable rights to life, liberty, and the pursuit of happiness. Our health is probably the most important thing we have. Life? That one's obvious. But additionally, having a debilitating health condition, which is quite often due to factors completely outside one's control, can quite easily rob a person of their liberty and their ability to pursue happiness. If the pain is bad enough, it can be almost impossible to be happy. Unfortunately for me, my constant good access to health care in my life has generally not resulted in relief from my various chronic pain issues. There are a lot of people, however, with similarly troubling issues that would benefit a great deal from health care they are unable to access. In a broader sense, the idea that success in life is mostly due to hard work as opposed to luck is one I find pretty laughable in light of my own life experiences. Having or not having good health is such a huge factor in how well people are able to do in life and it's often something that is almost totally outside our control. (Of course, there are many other factors outside our control that also help determine our success - in my case, I've generally had very good luck on all those other factors.)

With that said, what can I do? How do I deal with the pain? The first time I went through this, I eventually found there was one good remedy: running a lot. After running cross country and track all through high school and college, I had ceased to run very much due to chronic knee pain that had been caused by the running. Of all the different types of chronic pain I've had, the one that has bothered me the most in terms of total amount of time (but certainly not in terms of severity of the pain) has been this knee pain. Incidentally, several of my chronic pain issues stem from sports-related injuries, but the majority, including all of the worst ones, do not and generally have had mysterious causes.

There is a thing about pain that when you have a lot of pain in one part of your body, it can drown out the pain in another part of your body. So once I started to have this other, really awful pain, I realized that my knees no longer hurt. I hadn't been running much at all for a while because of my knee pain, but since my knees no longer hurt, and I still loved running, I thought, why not start running longer distances again? And as I did it more, I realized it usually made me feel at least a little better, if only temporarily. No doubt this was due at least in part to the endorphin release, the "runner's high." For me, going on a really great run is a feeling like no other.

After increasing my mileage and keeping it up for a while, I realized something else: that knee pain was coming back. But as the knee pain came back, the other pain became less severe. It even went away for periods of time. Eventually I found that I could strike a balance: if I ran too much, my knees would hurt excessively. If I ran too little, my other chronic pain would be even worse. If I ran the right amount, I would still be in a significant amount of pain, but not so much to keep me from having a mostly happy and productive life. This probably sounds totally crazy to some people. A doctor I saw recently, upon hearing about it, said something like, "You managed your pain by causing other pain? That doesn't sound good." I'd imagine there are some people out there, though, to whom this makes perfect sense.

As it turned out, "the right amount" of running was an amount that resulted in me being in really good shape and being able to do quite well in a lot of races, so I had that going for me. In 2006 it seemed like my competitive running career might be over, but in 2008 and 2009 I enjoyed a major career revival and ran some of my best races ever. I have many fond memories of all the running I did in those years and am very proud of what I accomplished, but the truth is, I would never have done it if not for my having been in a desperate battle against horrific chronic pain. And I would have been a lot happier at the time if I had not had that reason to do all that running. It was around then that I developed a sort of philosophy of life; life is a series of bad things happening to you and all you can do is to try to make the best of a bad situation. Notice that this is something I thought well before Cara's cancer.

Unfortunately, now I am unable to do really any amount of distance running because of a hip issue that sprung up this year, likely related to one or both of the two(!) fractures I've suffered to my pelvis, in 2010 and 2013. Why it started is still something of a mystery, though, because I was able to do a bit of running last year without anything like this occurring. I even did surprisingly well in a 5k that I ran in May 2014 the day before graduating with my PhD. Part of my motivation for doing that race was that I wanted to give Cara at least one more chance to see me run competitively in the event that she might not be around much longer. I'm glad that I did it. Speaking of fractures, I have broken bones five times in my life now, and even the worst, the 2010 pelvic fracture from a cycling accident that resulted in me spending a week in the hospital, having surgery, spending six weeks on crutches, and then going through months of additional recovery before being mostly back to normal, was absolutely nothing in comparison to any of the bad chronic pain issues I've had. That's because there was a fairly clear timeline over which I could expect to, and indeed did, get better. With chronic pain you never know when, or if, you will improve, and as a result, the emotional toll is dramatically worse than that from the same level of physical pain resulting from an acute injury.

So not being to able to go running has been very frustrating. I have tried to replace this with different forms of exercise. This has seemed to help some, but not always on a consistent basis, and nothing seems to work quite like running did (using an elliptical trainer, for instance, simply isn't invigorating in the way that running through the woods is). The best has been playing basketball. This has been one bright spot in my life recently; after having not played basketball on a regular basis in many, many years I've started participating in pickup games at the fitness center at work and have found it quite enjoyable. Yes, playing basketball does involve running, but not nearly to the same degree as, you know, going for a run. With any exercise I do, I have to be careful not to overdo things, because earlier this year for a while my hip issue made me feel uncomfortable with performing basically any exercise at all, and I do not want to be in that situation again. It's something of a precarious position I find myself in.

Another thing that has helped is spending time with my friends. I really do have so many wonderful friends. That's something I never would have said before in my whole life prior to Cara's death. "I have so many wonderful friends." I had a few good friends when I was growing up. Looking back, when I was in college I feel like I actually took something of a step backward in my social development. Before I met Cara, I was basically a loner and for a time I honestly don't think there was anyone who I considered a truly close friend (although there are a few people I met in college who I became closer to in the subsequent years). Then I met Cara, and she quickly became the best friend a person could ever have. But because of that, I didn't feel motivated to form really close friendships with people other than her. When she died, everything changed. It has been an amazing experience both making great new friends and strengthening my friendships with friends I already had, and that was really the biggest reason I was so happy prior to my recent pain recurrence. Even now, when I'm with friends, I usually feel less bad, even if sometimes I can't actually feel good. And there are times that I don't feel so terrible. My last blog entry before this one was a glowing write-up of my recent trip to Washington, DC. Was I pretending that I had a good time when I wrote it? No, I actually did enjoy the trip, although not as much as I would have under normal circumstances, but I did enjoy it quite a bit. This was somewhat miraculous, considering how awful I've often felt recently.

I want to share something that Cara wrote on her blog on July 27, 2014, that relates both to dealing with being in pain and also to why I'm writing all this:
It's so important to keep moving, even if it's at a snail's pace - and keep DOING! It's so fun and liberating to go on a date and have a conversation in public at a restaurant. Making googly eyes at my husband from across the table still makes me smile - after almost eight years - I hope it never ever gets old! 
Do stuff, seriously. If you're a cancer patient (or someone just not feeling good) with a serious case of the ouches and mopes (like me, sort of) then go outside anyway, if you're able. Two days ago I just sat out on my front steps and BS'd with my mom on the phone for a half hour. I felt the sun on my face and the breeze, and it was awesome. 
I am so glad that many have said that I'm an inspiration to them, but it's times like these I don't feel like I deserve the designation. I've been so whiny lately I haven't really wanted to post a blog, because I knew I'd complain. The thing is, it's okay to be annoyed with the crazy stuff that chemotherapy and cancer do to you. 
I want people to know about these things, because they're real and they happen to people and there is unpleasantness and a degree of suffering. I don't tell you about these things because I want you to feel bad for me, to me it's no different than you telling me how your day was.
So why did I never talk about any of this stuff before, and why am I talking about it now? It was actually several years into our relationship before I talked to Cara about any of my chronic pain issues. I remember telling her, when she asked why I hadn't talked about it, that talking about it wouldn't make me feel better (only the pain getting better would make me feel better), but it would make the people I talked to feel bad, so why talk about it? I suppose there is a certain logic to that, but I don't think it was healthy. Now that Cara is gone, and also that I now have a lot of friends with whom I interact regularly, and now that chronic pain is once more having a huge impact on my life, it was becoming a huge burden on me to keep it all inside. And I realized that if someone I cared about was suffering, I would want to know about it. Writing has always been important and an outlet for me, hence why I'm doing this as a blog post. Maybe it will help me. Maybe it will even help someone else who reads this.

Another obvious question is would I be less unhappy if Cara was still alive? Because being with friends tends to help some, and she was my best friend, there's some reason to think I would. On the other hand, if she was still alive but also still had likely terminal cancer, it would be incredibly depressing to realize that what might be some of our last time together was being ruined. I would probably also have feelings of guilt about feeling so awful myself when she was the one with a life-threatening disease, and also about not being able to take as good care of her as I would want. All in all, I'm inclined to think that if Cara was still alive, I would feel more motivation to pretend not to be unhappy, but I would not actually feel significantly less unhappy.

I'm not going to sugarcoat things. Overall, November 2015 was the worst month of my entire life. I've tried to keep living my life as normal, but it's been very difficult. At times it's been hard to find the motivation to do anything at all, even get out of bed.

I started writing this about a week ago. It's still something of an internal battle over whether to actually post it, but I think it's important to do. Something has happened in the last week, though. I have felt less depressed than I was. I still don't feel well, but I feel less terrible. I think writing this was actually therapeutic. Also, I saw a physical therapist this week and it seems like there actually is a very plausible explanation for the source of the pain, which is something I never got from the doctors last time. That doesn't mean there's a quick and easy fix, but it's something. I'm hopeful that things will get better, although always wary of getting my hopes too high. There's a line in a Typhoon song: "Hope is just a small thing." It really is, but it's so, so important to have. I know that from my time with Cara.

I also want to share a quote I've seen posted a few times on the Internet. There are several variations but the one I particularly like, when I look it up, is attributed to author Wendy Mass. It's something I try to keep in mind as I live my life and I think everyone else should too. "Be kind, for everyone you meet is fighting a battle you know nothing about." Well, now you know something about my battle.

Saturday, November 28, 2015

Concert review/trip report: Okkervil River in DC

Okkervil River is my favorite band and has been for many years. I had already seen the Will Sheff-led folk-rock outfit seven times in concert when they announced earlier this year that, for the tenth anniversary of their most acclaimed album Black Sheep Boy, they'd be playing a very brief run of shows in which they'd perform both Black Sheep Boy and the companion EP Black Sheep Boy Appendix in their entirety. Instantly I knew, since this was likely a once in a lifetime opportunity, that I had to go. So last Friday, November 20, I headed out with a couple friends to Washington DC and the Black Cat music venue for the first of the anniversary shows.

The music of Okkervil River was very significant to my relationship with my (deceased from lung cancer in April) wife Cara. Of the seven previous times I had seen them, she had joined me for six. I was naturally reminded of all those great shows - most of all, of the very first time Cara and I saw Okkervil River, on October 11, 2006 at the since-closed venue Little Brother's in Columbus. Cara and I were not yet dating at the time, but had become best friends over the course of that year. I drove down from Cleveland for the show despite it being on a Wednesday, because I had recently become a huge Okkervil River fan and I had never seen them in concert before. Any trip to Columbus was also an opportunity to see Cara, so naturally I asked her if she'd join me at the concert. Although she herself was not yet that familiar with Okkervil River's music, I can imagine how excited she was to go to the show with me. I was very excited to see her as well.

My friends and I ended up standing near the back of the room at the Black Cat, as Cara and I had also done at Little Brother's (the room at Little Brother's was smaller, though). And so I imagined Cara was next to me at this show as well. On occasion, I spoke to her, in my mind. "Isn't this great, Cara? Isn't it so cool that Jonathan Meiburg is here?"

(One of the best aspects of this anniversary show was the fact that Jonathan Meiburg, a member of the band from the earlier days who left years ago to focus on his own band Shearwater, joined Okkervil River to perform all their old songs. Meiburg, who has a stunning voice that wonderfully complements Sheff's rawer vocals, was with the band the first two times Cara and I saw them, which were probably the two best shows of all the Okkervil River concerts I've attended. Up on stage at the Black Cat, Meiburg looked so happy to be performing with his old band. It was a wonderful thing to see!)

Despite my having seen Okkervil River so many times in the past, the majority of the songs performed at this show were ones I'd never seen live before. I imagine many of them had rarely if ever showed up on setlists. Before the whole band came out, Sheff opened the show with a solo acoustic performance of the Sleep and Wake-Up Songs EP that preceded Black Sheep Boy in Okkervil River's discography. It was a great way to open the set. Sheff made an amusing and insightful comment before the last song, "No Hidden Track," about how the "hidden track" reference was very of its time and already very dated, referring to a concept that was only a thing during the CD era.

The Black Sheep Boy album was next. It opens with a gentle-sounding cover of the Tim Hardin tune of the same name, before going immediately into the visceral "For Real." I have a vivid memory of the first time I listened to the album. I got it for Christmas in 2005 after asking for it simply because I had read some good reviews online. My first listen to the CD was in fact my introduction to the band's music. I remember sitting at my computer at night, next to the window in the bedroom of my fourth-floor apartment. When that second track came on I was just blown away. And looking at my old logs, I see that after my first listen to the album, I listened to "For Real" three more times in the subsequent hour. It's a spectacular song. On the album, you can practically hear Will Sheff's spittle hitting the mic as he belts out the lyrics. Which reminds me of how, at two of the Okkervil River shows we attended, Cara commented that she got hit with some of Will's saliva while he was singing. She wasn't annoyed by this; rather, it was an indication of how close to the action she was (in both cases, I was standing behind her). The first time this happened was the second time we saw them, at the Pepper Jack Cafe (which, like Little Brother's, is apparently closed now) in Hamilton, Ontario on Cara's birthday in 2007. The other time was Cara's final Okkervil River show, on September 29, 2013 at the Beachland Ballroom here in Cleveland. On that occasion, Cara had recently had surgery to drain three liters of fluid from around her lungs. She didn't have the strength to stand through a whole concert so we had her in a wheelchair for the show so that she could be front and center by the stage. Here's a picture she took at that show:

Seeing the whole Black Sheep Boy album performed at the Black Cat was quite an experience. It's definitely a classic album. Hard to believe, of course, that it's more than ten years old now. The years really do go by. For the first time at any Okkervil River show I've attended, there was a female vocalist to duet with Sheff on the several tracks that have female vocals on the album. This was a really nice addition. Besides "For Real," another definite highlight was the much slower burning but equally intense "So Come Back, I Am Waiting." I have fond memories of this song both from that first time seeing the band back in 2006 and from the time we saw them the night before our wedding in Columbus, in June 2011.

(An aside about "So Come Back...": I've always thought it was just a bit odd that during the highly emotional climax of the song, there is what seems to me like a really cheesy pun: "Come back to your life on the lam." Get it, "lam," like "lamb," like "sheep" as in "Black Sheep Boy." Not a slight, just something that always stuck out to me. Moving on!)

The closing track of the album, "A Glow," is another song I've always loved but one I had never seen performed live. It's one of those songs with a really pretty male/female vocal duet. Great stuff.

After a short break, the band came right back for the last portion of the show, the Appendix. I've always thought Black Sheep Boy Appendix was fantastic (heck, everything the band has done is pretty fantastic), but never held it in quite the same regard as the album proper. Live, though? The Appendix might have been the very best portion of the night's proceedings. "No Key, No Plan," "Another Radio Song," and "Last Love Song For Now" were all spectacular, with the band rocking out at full intensity. One of my favorite moments, though, was the comment Sheff made before "The Next Four Months." Something about how he didn't want to "George Lucas things up too much," but he had to fix the lyrics in the song, which is about taking pills. Apparently he had gotten the dosage wrong, so "2000 milligrams" in the original version was changed to "100 milligrams" in this live performance. I just thought that was so great; I could imagine that little mistake eating away at him over all those years and I could imagine myself feeling the exact same way if I had done something like that. One of the wonderful things about live music, especially with certain performers such as Will Sheff, is seeing in person the humanity of the people whose music you've listened to so many times on your speakers or headphones. Which takes me back to that very first Okkervil River show in 2006. Sheff was sick, and apologized for it, but it didn't stop him from delivering a powerful performance. Because he was sick, he was drinking a lot of water during the show. He made a remark about being in the "hydration scene" that Cara and I remembered and referenced for years to come.

Another memory of that show is standing with Cara at the merch table near the entrance to the venue, looking at the shirts, and her asking me if I was going to buy one. I said I would wait to decide until after the show, and it would depend on whether the show was good enough to warrant making such a purchase. It most definitely was. I bought another shirt at the Black Cat last week. And here's the whole collection. Left-to-right: my shirt from 2006, my shirt and then Cara's shirt from 2013, and my shirt from 2015.

I was definitely sad, knowing that Cara would have been at the show with me (and not just in spirit) had she still been alive, but I'm very glad I got to go. It was an unforgettable experience.

My friends and I also had a nice time in DC the following day. We went to the National Gallery of Art, a museum I don't think I had ever visited in all of my many previous visits to DC. That might be partly because I thought art museums were boring when I was a kid. I've since changed my opinion. There was a lot of neat stuff there!

It was a very beautiful November day.

That evening we went to the Adams Morgan neighborhood of DC and went to several cool places. We checked out a couple of neat record stores, caught some free live music at Madam's Organ Blues Bar, and then had a fantastic dinner at The Diner. Since I finally got around to getting a smartphone recently, naturally I have to take pictures of things I eat and drink:

I had the Voodoo Parish ("absinthe, sugar cube, angostura and peychaud's bitters, bulleit rye, sparkling wine" - my reaction: "a drink with both absinthe and rye? This I have to try" and it lived up to my expectations!), the Peanut's Revenge Shake ("peanut butter, chocolate sauce, vanilla ice cream," delicious!) and a very tasty blackened salmon sandwich with caramelized red onion, mixed greens, and basil aioli. Also, one of my friends got this amazing (and vegan) Jamaican Shepherd's Pie with plantains, sweet potatoes, peppers, beans, coconut milk, and yucca.

We closed out the night by checking out one more bar and happened upon a place that was playing an amazingly nostalgia-inducing assortment of '90s alt-rock, pretty much every single track a hit from my middle school days. Songs like "Creep" by Radiohead, "Champagne Supernova" by Oasis, "Enter Sandman" by Metallica, and many, many others. It got to the point where every time the next song started up we would just look at each other and start laughing. Until finally, the music abruptly stopped, and then a minute later they started playing some lame Linkin Park remix. Which was a sign that it was time to leave.

By the way, Okkervil River fans (especially Clevelanders) may enjoy this bootleg I've just been listening to of their May 12, 2004 Beachland Tavern show. Sadly, that was before I was familiar with either Okkervil River or the Beachland, but it's really cool to hear the band back at that early point in their career and to imagine being there in that wonderful, familiar room.

Friday, November 6, 2015

If you have lungs, you can get lung cancer

November is Lung Cancer Awareness Month. Sadly, lung cancer doesn't get nearly as much attention or research funding as the other leading types of cancer, despite killing more people than breast, prostate, and colorectal cancer combined. This post is about why lung cancer awareness is so important.

When I met my wife Cara in 2006, she was not a very athletic person at all. She was already making some effort to change that. Meeting me provided her extra motivation. She knew that our chances for a long-term relationship would be better if she could join me in the outdoor pursuits that I loved. She also found, as she began to exercise more, it was something she very much enjoyed herself. It was in the spring of 2007, when she bought a bicycle, that things really began to change dramatically.

It wasn't easy at first, though. Quoting Cara in a May 6, 2013 post on Facebook:
I just want to give a shout out to any/all of my friends who are embarking on journeys to improve themselves physically (or if they're thinking about it but are afraid): You CAN do it. I remember the first time I rode a bicycle in my adult years - it sucked. My legs ached and my lungs burned. I turned around after less than a mile, and cried when I got home because I thought I could never do it. Well, now you guys know how much I love to ride now. 
Be realistic - know when pain equals actual injury/pain - but don't let sore muscles, sweat, or tiredness deter you. You might get dirty, you will be tired, you might be sore - but the results you will notice (not just aesthetically, don't make it just about that) will be your proof that you are doing the right thing for yourself. Walking, running, bicycling or whatever you want to do, just do it. I'll always be cheering you on.
Cara began to ride more and more, and within a couple of years she had become the athletic person that she was so far away from being for her whole adult life. In 2009 she did her first century (100 mile) bike tour. She was so proud of herself that she got a tattoo to commemorate the occasion. And in 2010 I was very surprised and incredibly proud of her when she averaged 18.2 mph in a 20 km cycling time trial, much faster than I had expected. I could see the fierce determination on her face as she pedaled to the finish line. She said afterwards that she finally knew what it felt like for me in all the races she had seen me run.

Cycling became Cara's biggest passion in life. In addition to riding her bike for fun, in tours, and for commuting, she also became very involved in the local cycling community and made many great friends in this way.

In November of 2012, we moved up the hill to Cleveland Heights, adding a substantial incline to Cara's daily ride home from work:
This climb was a big challenge at first, but the more Cara did it, the easier it became. Partway through 2013, however, that trend would reverse itself.

In the spring, some time in mid to late April as I recall, Cara began to experience wheezing, coughing, and shortness of breath. At first she thought it was allergies, although she had not experienced such symptoms in the past. Our move had put us in a neighborhood with many more trees, and it was allergy season, so it seemed plausible. She tried various allergy remedies, which had marginal effects.

On May 29, she did the "Wheels & Heels" ladies' social bike ride. Here is a beautiful picture of Cara with her bike, bicycle tattoo visible on her leg:
Two days later she finally saw a doctor about the symptoms she had been experiencing for over a month. On that morning, before she ended up going to an urgent care, she posted this on Facebook:
Still wheezing horribly, and now there's a crushing feeling in my chest. Fairly sure it's allergies, but I've tried Zyrtec and now Claritin and they might take the edge off - but I still can't breathe. My urgent care coverage is shit, so now begins the arduous task of finding a PCP that will see me today.
Those sound like pretty serious symptoms to me! At the urgent care, after she was given a breathing treatment and it seemed to help, she was quickly diagnosed with asthma.
Of course, she did not actually have asthma. Slightly less than three months later, she was diagnosed with stage IV lung cancer. I would be remiss not to mention the remarkable fact that a few weeks before this cancer diagnosis, she completed a two day, 150 mile bike tour, and she said that, despite all the breathing problems she had been having throughout the summer, she felt great on that ride, ultimately her final bike tour. Here is a picture of her just before the start of that ride:
The doctor who saw Cara at the urgent care never considered the possibility that such a young, active, healthy person with no smoking history could have lung cancer. Cara also remarked later, after we knew the true cause of her breathing issues, that the doctor had said "If you had a blood clot, you'd be dead" so there was no need to check for blood clots. I don't know whether Cara had any blood clots at that point in time, but she had a lot of them by the time she was diagnosed with cancer, and she certainly wasn't dead.

This is why lung cancer awareness is so important. People, doctors and patients alike, need to know that anyone with lungs can get lung cancer. Cara had been having pretty serious breathing-related symptoms for over a month when she went to the urgent care. Those symptoms could have been caused by various things other than lung cancer, but they also could have been, and in fact were, caused by lung cancer. If someone presents with those symptoms having had them for that much time, the possibility of lung cancer shouldn't be ignored. Better safe than sorry. Who knows how much difference those three months might have made? Obviously, the cancer had grown more by August than it had in May, and the more cancer there is, the harder it is to treat. For anyone reading this who doesn't already know the end to Cara's story, she passed away on April 24 of this year. If she had been correctly diagnosed sooner, would she still be alive today? I'll never know for sure, but I wouldn't be surprised.

During her twenty month battle, Cara benefited tremendously from some new treatments that have emerged due to groundbreaking research in recent years. She got to go on a lot more bike rides in 2014, after a point in late 2013 when was practically on death's door. Those treatments weren't enough to save her. Some patients have had their lives extended much, much longer by new lung cancer treatments, but the diagnosis of stage IV lung cancer remains one with a grim prognosis. And that's another reason lung cancer awareness is so important. Lung cancer research gets 1/15 as much federal research funding per death caused as breast cancer research. One fifteenth. That, to me, is shocking. More research funding would lead to better new treatments and even more importantly to earlier detection.

If you have lungs, you can get lung cancer. And every lung deserves care. These are the messages we need to spread this Lung Cancer Awareness Month and throughout the year.

Incidentally, I recently noticed that, in July 2013, Cara rated the urgent care where she was diagnosed with asthma as three out of five stars on Facebook. I'm not sure what was going through her mind when she left that mediocre rating. I imagine the rating would have been lower had she known the truth.

Monday, August 17, 2015

Welcome to Cretaceous Park

Note: the text in this entry is the same as the foreword in the document linked at the end of the entry.

On June 11, 1993, the movie Jurassic Park hit theaters and revolutionized blockbuster motion pictures to perhaps a greater extent than any other movie besides the original Star Wars and Steven Spielberg's own Jaws. Nine days after the movie's release, I turned ten years old. Not unusually for a child of that age, I loved dinosaurs. I was totally caught up in the (much deserved) hype around the movie. My parents were a little on the overprotective side, and at first they weren't sure whether they would let me see the movie. As I recall, it was around six months after the release date when I finally got to have that experience (yes, it was in a movie theater; movies had much longer theatrical runs in those days). That wait didn't stop me from being JP-crazy. Amusingly, that summer when I was at a bookstore thinking about buying the junior novelization of the movie, my dad suggested I could get the real book, Michael Crichton's novel on which Spielberg's film was based, instead. I did so, and thus I read (and re-read) the far more violent and gory book before I ever saw the comparatively tame movie.

My best friend at the time, Jay, was also crazy about dinosaurs. That fall we started the fifth grade together. We decided that we would like to create our own sequel to Jurassic Park, and we proceeded to do just that. Through much of that school year, we visited each other's houses, taking back and forth a 3.5” floppy disk containing an ever-growing document and working on it together on each of our two family's computers. That document was a story called Cretaceous Park. Clever children that we were, we picked the name Cretaceous Park because the Cretaceous Period was the period that followed the Jurassic Period in the Mesozoic Era during which dinosaurs lived. Thus it was only logical as a name for the sequel.

We strived to create our own original story that followed on where Jurassic Park left off. Perhaps not surprisingly, we did not really manage to do this, the “original story” part, that is. The premise of our story was that John Hammond, the creator of Jurassic Park, decided to make another dinosaur park despite the spectacular failure of his first, and that he once more invited Drs. Alan Grant and Ellie Sattler and his grandchildren Tim and Lex Murphy to tour his new park. From there, things go in a strikingly similar way to the original story. The overall plot and most of the big moments in the story are a nearly note-for-note copy of Jurassic Park. Hey, we were only in fifth grade.

Revisiting the story as an adult is, for me at least, a very entertaining experience. And I know that I'm not the only person to find it entertaining – in August 2006 I shared the story with my, at the time, new best friend Cara, and she thought it was absolutely hilarious. I actually read the whole book aloud to her during our trip to Washington, D.C. (she had to do all the driving because I had just broken my arm). Looking back, it was  a great bonding experience for the two of us. But anyway, despite the unoriginal nature of most of the plot elements, I believe there is a great deal of entertainment value in this story, for several reasons. More than anything, it's just funny. That's because a lot of the things that happen and lines that people speak are really silly-sounding when viewed from an adult perspective. It's also an interesting insight into how children's minds work. Children's minds are similar to adults' in many ways but are also very different in many ways, and this story provides something of a demonstration of that concept. What's more, despite all the silliness, this story was quite an accomplishment for a pair of fifth graders. It's over 14,000 words in length, 33 pages of single-spaced 12 point Arial font, and the quality of the writing? Well, for fifth graders, I think it's pretty good. (One thing that's striking to me is that the writing toward the end of the story, although still certainly far from “good” by adult standards, is noticeably better than the writing toward the beginning of the story.) Plus, there are a few ideas we came up with that were genuinely clever and not just copies of the original story.

Inspired by the release of the latest blockbuster movie in the series, this summer I re-read my old, tattered copy of Crichton's novel for the first time in many years, and then proceeded to re-read the sequel that Jay and I wrote so many years ago. And then a thought came to me – it would be fun to go through the story and make detailed annotations (in the form of footnotes) of all the reactions that I, as an adult, have to this story that my friend and I wrote when we were kids. Many of the annotations are things that Cara and I talked and laughed about back in 2006, and I also go into a lot of detail about what went into the making of this story and how it relates to the Jurassic Park film and novel.

Jay and I were very proud of Cretaceous Park. Reading the story as an adult, it's silly, it's hokey, its a blatant ripoff of its predecessor – but despite all that, I think our feeling of pride was well-earned. So now, I'd be honored if you'd join me on a journey to the past – a journey back to 1993.

Download The Annotated Cretaceous Park (pdf)

Wednesday, July 15, 2015

Breathe Deep Cleveland

On April 1 of this year, Cara wrote the following in her blog:

I can't believe we're less than two months away from the Breathe Deep CLE event, it's surreal.

Okay, I'm going to pause here for a moment because I just noticed that Cara made a little mistake - she should have said "less than three months," not "less than two months." It might seem weird that I'm nitpicking this, but it just really stands out to me due to the fact that Cara passed away slightly more than two months before the event - hence we could not have been "less than two months away" while she was still alive to write about it. What's weird is that I selected this passage to be read at her funeral, and I didn't notice the error at the time. And I'm usually so good about spotting things like that. I guess my mind was not quite fully functional that week! Anyway, back to Cara:

I have such high hopes for this thing. We have 15 people signed up and a good chunk of money raised already but we need more. I want this thing to be EPIC. I know it has the potential to be - if you think about how many people are impacted by lung cancer in some way - or hey, even cancer in general... Come give us a shout out. Walk a few miles (you can borrow my shoes, if you want!) and eat a bagel. Hug someone, ask questions, learn things. It'll be fun. My hopes are so, so high.

Remember what happens on this episode of Saved by the Bell? Well don't worry, I'm not going to go on a speed bender and break down in Mark Paul Gosselar's arms (unless he's available?). I'm just a little scared. I'm afraid of failure. I'm reminded of a time when I had a birthday party and only two people came. One of those people stole some of my presents. Why was I friends with her, again? Never mind.

It has to succeed, it just has to. I'm not saying this because my name is all over it - I just want people to come out, take a walk, and learn things. Understand what a huge impact lung cancer has on us all.

Cara poured her heart and soul into this event. I'm so proud of her for recognizing the importance of having such an event here in Cleveland, reaching out to the national LUNGevity Foundation to get the ball rolling, and then putting in all the time and effort with the planning committee to make it a reality. Not to mention the work she did in promoting the event and designing the logo for her fundraising team.

All this while battling stage IV lung cancer.

Thanks to the efforts of numerous people, but Cara most of all, the event was, indeed, a success. It raised over $39,000, smashing the original goal of $26,000. Cara alone raised over $13,000. Although it would have been an undeniable success for the fundraising alone, there was some doubt that the event would even take place. We have had a strange summer weather-wise, and June 26 was part of a stretch of nearly two weeks in which it rained almost every day. That day was one of the rainiest of them all. The night before the event, an email was sent out to all participants: Breathe Deep Cleveland would be held rain or shine, but if there were thunderstorms in the area, it would have to be canceled. The weather forecast at the time did indicate a significant chance of thunderstorms.

I can just imagine how nervous Cara would have been, how dismayed she would have felt if the event she had worked so hard for had had to be called off.

Fortunately, there were no thunderstorms. I was a volunteer as well as a participant for the event, and as we were setting things up and then getting people checked in it was almost continuously raining, reaching torrential downpour status at times. The weather certainly depressed turnout - from 250 registered participants, about 100 people actually showed up. Things went very well, though, all things considered. And luckily, for the actual walk/run portion, the rain mostly stopped.

Before the walk/run started, there was a Zumba warmup, which many people still participated in despite the rain. Then we had several speakers. The first was Cleveland councilman Joe Cimperman. I'm grateful to him for taking the time to speak, but it occurred to me that Cara would have disliked his speech, because literally everything he said was related to smoking reduction efforts. Now, realistically, that is a very important way to reduce lung cancer mortality. However, to focus entirely on that aspect - "he's feeding into the stigma," I can imagine Cara saying. She hated the stereotype that lung cancer is only a smoker's disease. She hated how so many people, upon learning that she had lung cancer, would ask before anything else whether she had smoked. Cara thought that was a question that only really needed to be asked by a patient's doctor.

Cara's doctor, Nathan Pennell, was another speaker at the event, and gave some nice remarks about promising new efforts to fight this awful disease. Cara had envisioned that she would give a speech there. I wish I could have heard her speech. I'm sure it would have been fantastic. As we all know, she was excellent at both writing and at talking to people. Despite standing just 5'2", she had a commanding presence. I hope that I was able to live up to her by speaking in her stead. I'll share my remarks here:

First, I want to thank you all for being here today. Cara McManus, my wife, was the person who took the initiative in creating this event. Many of you knew Cara, but there are also a lot of you here who did not know her in person. I want to say a few words about Cara and about why this cause is so important.
Cara was a very active person whose favorite thing in the world to do was ride her bicycle. In the spring of 2013, she started to have some issues with wheezing and shortness of breath. The first time she went to see a doctor, they said that it was probably asthma and gave her an inhaler. No one would ever guess that a healthy 34-year-old with no history of smoking would have lung cancer. The doctor was wrong, of course – it wasn’t asthma. But throughout that summer, even as Cara’s symptoms did not improve and then gradually worsened, she continued to pursue her active lifestyle. In August, she did a two-day, 150 mile MS charity bike tour. The truly amazing thing is that, despite all the issues she had been having, she said that she felt fantastic on that ride.
Three weeks later, she was hospitalized and diagnosed with stage IV lung cancer.
During Cara’s battle with cancer, we saw firsthand the benefits of groundbreaking research. She ultimately lived 20 more months after her diagnosis. If the same thing had happened to her five years sooner, it’s likely she would have survived for only a fraction of that time. We had the opportunity to make so many happy memories together during the extra time afforded by those new treatments. And she even got to go on a lot of bike rides last year.
Cara became very passionate about the cause of lung cancer awareness and research funding. In this country, we make such a big deal about breast cancer awareness. Now, I’m not knocking breast cancer awareness. It’s a very important issue. But why, Cara wondered, couldn’t there be a similar movement for lung cancer? Lung cancer kills more people than the next three top cancers combined. 27% of all cancer deaths are due to lung cancer, yet lung cancer gets only 6% of federal research funding.
As Cara sadly realized, this is in large part due to the stigma of lung cancer being considered a smoker’s disease. But the truth is, lung cancer can happen to anyone, even someone like Cara who was healthy and never smoked. And even if someone did smoke, it doesn’t mean they deserve to die of cancer.
Cara founded this event because she saw the urgent need to raise awareness around the issue of lung cancer and to increase the funding toward more groundbreaking treatments and earlier detection. Perhaps if lung cancer research was funded in proportion to the deaths this disease causes, or perhaps if doctors didn’t assume that there was no way a young non-smoker could have lung cancer, then Cara, instead of me, might be the one standing up here talking to you right now.
She’s not. But there are so many people out there who are or will be going through the same thing. That’s why it’s so important that this cause succeeds. I’ll never forget Cara’s passion for this cause, and I hope none of you will either.

This year was the first annual Breathe Deep Cleveland. We intend to make it bigger and better in the future, and we anticipate nice weather next year!

Tuesday, July 7, 2015

Tell me how you really feel

On more than one occasion recently, I've had someone say to me something like, "I see the stuff you post on Facebook, but really, how are you doing?"

It occurred to me that there are undoubtedly other people who haven't asked me but are wondering the same thing. So I thought, why not write something about it?

I suppose people are aware that there are situations like this one. If you don't feel like clicking the link, it's a heartwrenching story about the contrast between a college track athlete's cheery social media persona and the inner depression that drove her to suicide. Not that I think anyone would suspect me of being secretly suicidal! But we all know there can be sizable gaps between the lives people present to the outside world and the lives they are really experiencing, and that social media can magnify this effect.

As for me? I can honestly say everything I post on Facebook is an accurate reflection of how I'm feeling at that time. Granted, I do tend to focus more on positive things, but that's not me putting on a false front. It's more that staying positive externally helps me stay positive internally.

Of course, I miss Cara a lot, and I probably will for the rest of my life. Of course, I feel a great deal of sadness over her loss. However, and again I am being completely honest, I feel happy more than I feel sad. That's due most of all to the fact that I have a lot of great friends and relatives. It's also due to me keeping myself busy doing things that I enjoy, and it also helps that I, as always, have a lot of great music to listen to.

Thinking about it, I've had a pretty amazing life so far, and you know what? There's no reason I can't continue to have an amazing life. That's not meant to diminish the importance of Cara to me. Not at all. In fact, I consider both the life that I have had and the life that I'll continue to have to be largely thanks to her.

It's said that, in marriage, two people become one. In that sense, Cara lives on as part of me. To some, that might sound like a platitude, but I wholeheartedly believe it. The influence we each had on the other, in making our lives happier, and in our development as human beings, was incredible. If I had not met Cara, I would be a completely different person, and I believe that I'm a much better person for having known her. And now, everything I do, it's partly her doing it as well. If I bake a pie? Cara is helping me. Enjoy a long bike ride? Cara is helping me. Make a new friend? Cara is helping me.

I spent twenty months of my life with someone who had had something really terrible happen to her, and she reacted to it by living her life to the fullest and trying to approach each day with a positive attitude. I wish deeply that Cara had never had cancer, but given the reality that she did, I'm very grateful for those twenty months, both because we had so many happy times together during them and because I learned so much from the way she lived her life.

Our lives are largely defined by how we deal with adversity. That's something I believed even before Cara had cancer, but I never knew then that I would see firsthand such an amazing demonstration of grace and courage.

In writing her blog, Cara provided a great service both by exposing everyone to the realities of what she was going through and by being a shining example of how someone could deal with an awful situation. Perhaps I can do something of the same. I could not, though, do it without her.

A final thought. I'm very grateful that I live in an age in which people are free to fall in love and marry the ones they love. Obviously, the recent Supreme Court ruling on gay marriage (which Cara would have been thrilled to see) is very relevant to this, but there's more to it than that. The people who pine for the days of "traditional marriage" seem to want us all to forget that, traditionally, marriages were often not based on love. They were often arranged marriages, and women were generally treated as property. Yet clearly, the ability to fall in love with another person is deeply ingrained in us as human beings, and it's likely something that has been around much longer than society's concept of marriage. Cara and I were very lucky to meet each other and to have the opportunity to share that love.

Tuesday, May 19, 2015


One year ago yesterday (May 18) I graduated with my Ph.D. in Biology from Case Western Reserve University.

Less than six months prior, Cara had undergone major surgery and in fact it had looked like she might not have much time left to live. Instead, the clinical trial she started resulted in a dramatic improvement. One year ago, I'd say she was probably in the best shape of any time post-diagnosis.

That morning, I had to go to the school early to get ready for the ceremonies. I walked to school, as I always did. Cara herself then walked the nearly one mile from our apartment to attend the commencement ceremony. (She normally rode her bike to the school, where she was employed, but on this day she was too dressed up to ride.) During the invocation at commencement, the speaker included a line about how we should appreciate being able to "breathe deep" of our surroundings. He, of course, had no clue how poignant this remark would be to Cara and me. On this day, she was able to breathe very well, after having had so much difficulty breathing not such a long time before.

In between the morning university-wide commencement and the afternoon Graduate Studies diploma ceremony, there was a lunch in the University Hospitals atrium. The food was nothing special, so Cara and I decided to head over to the Hessler Street Fair, one of our favorite annual events. It was a gorgeous day for a walk. At the fair, which is something of a hippie event, we made quite the couple - Cara in her polkadot blue swing dress and me in my fancy Ph.D. robes - and we attracted a lot of attention.

We both got the famous Hessler Street Fair lemonade and we both both pizza from Fire Truck Pizza Co. In fact, we had gone to the fair the previous day and Cara also got pizza that day - it was so good that we had to get it again!

At the diploma ceremony, Cara joined me in walking across the stage as I received my diploma. It was a very exciting moment for both of us, the culmination of a long journey we had taken together, for I was but a first year graduate student when we initially met.

That day is a very good memory.

Someone told me recently that they hoped that with each passing day, things for me were getting just a little easier.

Now don't get me wrong, I can appreciate the sentiment and am not upset with the person who said it, but I find it a little misplaced. Actually, the idea that things would start to get easier within less than a month of someone losing his wife and best friend seems fairly outlandish. The reality is I miss her more as more time passes. I hope it doesn't sound like I'm wallowing in self-pity, because I'm not, but it's a very hard thing to deal with. There will always be a void in my life. I still have a lot of really great things going for me, even without Cara, and I can be grateful for that, but I can also choose to do all I can to keep her memory and spirit alive. And that I will continue to do, and I will continue to share it with the world.

In many ways I've spent the last few days paying tribute, in my own personal way, to Cara.

Friday was National Bike To Work Day. Cara always rode her bike to work, as long as she was healthy enough. Even last year, while she was undergoing treatment for lung cancer, she rode to work many times. Me? I always walked, until we moved farther up in the Heights last summer, so now I drive. But on Friday I did ride my bike to work. It was raining in the morning, but Cara didn't let a little rain stop her from riding to work, so I didn't either. (This is despite the fact that I once fractured my pelvis in a cycling accident that happened on a wet road. This time, I was very careful!) The local ice cream shop Mitchell's (a place Cara and I enjoyed) was offering one dollar cones for cyclists, so I stopped there before going home in the evening. Fortunately, it was no longer raining.

Saturday brought the first day of this year's Hessler Street Fair. I rode my bike there as well, meeting Jessiye, a good friend of ours (especially Cara's) who Cara had actually first met on Bike To Work Day last May. I got the same lemonade and pizza (a delicious white pizza with bacon and honey) that we had enjoyed last year. Before Jessiye showed up, I also took a little walk in the surrounding neighborhood. I walked by the apartment I lived in when Cara and I started dating. I walked to the stadium at Case's North Residential Village, to the spot where we first held hands.

So many memories.

I took yet another bike ride on Sunday. I had seen that Jukebox, a fairly new bar in Ohio City, had a weekly brunch by a different local chef each week, and this week's chef was Saucisson. That's not the name of a person, it's the name of a company - actually, just two women, "lady butchers" as they like to call themselves, whose products Cara and I loved getting at the local farmer's market. I thought this sounded nice, so I set out on my bike toward the other side of town.

I rode most of the way along the Euclid Corridor, thinking of Cara the whole way. From 2008 to 2011, Cara rode to and from work (downtown at Medical Mutual) on that same bike lane. Over time, she came to despise that job - providing customer service for a health insurance company that is always looking for ways to make more money by denying its customers' claims is a demoralizing task - but that daily commute was so great for her. She found such joy and freedom in those twice-daily five mile rides. I can remember her proudly telling me how her speeds were improving as she rode more and more.

As I entered downtown, I imagined what it was like for Cara to do the same. I rode all the way to East 9th, turned left and rode past the front entrance of her old building, where I had occasionally picked her up at the end of the work day. Then I turned onto Carnegie and crossed the bridge to the West Side.

Riding across that bridge to Ohio City was something else Cara did many times. Unfortunately, due largely to a number of injuries I suffered, it was not something I often joined her in doing. So again, as I crossed the river, I imagined Cara, the wind in her face, looking out at the river and at the city she loved.

Jukebox is in the Hingetown neighborhood of Ohio City, which, in the summer, has a Sunday Market that Cara and I also enjoyed attending. We had never been to the bar itself, which is too bad because it's a neat little place. I got the Corned Beef Hash with Saucisson's corned beef, Cleveland Kraut (another local company that Cara and I enjoyed patronizing at the farmer's market), Montana Girl Mustard (another great local product!), potatoes, and an egg. I also got a Cleveland Mule, a drink with local whiskey, ginger beer, and lime, similar to a drink that Cara sometimes liked to make at home. Both were delicious.

Not surprisingly given the establishment's name, there is a jukebox there with a nice eclectic music selection. I played four songs. First, "I've Got Dreams to Remember" by Otis Redding. I don't think I'd ever heard the original version of this song before; however, there is an Okkervil River song called "Listening to Otis Redding at Home During Christmas" that is one of my favorite songs ever, an incredibly nostalgic and emotional tune, and it quotes the chorus of the Redding song. Second was "Home" by Edward Sharpe & the Magnetic Zeros - one of the happiest love songs ever, and a song that Cara and I sung together in the car on the way home from seeing the Magnetic Zeros play a show in Kent. Third was "That Teenage Feeling" by Neko Case, a song that Cara once put on a mix tape (we used to make mix tapes - well technically mix CDs - for each other). Last, I played "A Day in the Life" by The Beatles, which doesn't actually have a connection to Cara for me but is a very emotional song that was one of my favorites around the time I finished high school and started college. How the years go by...

Of course, I thought of Cara the whole time, but I felt happy. I rode home feeling invigorated. Cara loved riding her bike so much, and even though I didn't ride as often as her, I now appreciate even more what a great feeling it can be. Instead of going directly home, I completed Cara's old route home by riding into Little Italy and past the place we first lived together. I then rode up Mayfield and stopped for frozen yogurt at Piccadilly in Coventry, another place we loved.

It was a weekend full of bike rides. It was also a weekend in which I went to two shows at the Beachland Ballroom, both Saturday and Sunday nights. On Saturday I met our good friend Troy to see local indie rock duo Mr. Gnome (a really great band who I had somehow overlooked for many years!) and on Sunday I went by myself to see singer/songwriter William Fitzsimmons. Although Cara did not go to nearly as many shows as I did, I have many great memories of going to the Beachland with her. Foremost would have to be the annual prom that the Beachland used to hold in May, a chance for adults to dress up and pretend they were kids again (without the hefty price tag). One year, Cara and I were voted the Queen and King of the prom! This was remarkable considering we did not actually know anyone else there, but we must have stood out as an amazing couple.

We danced at prom, of course, but some of my other best memories there also involve dancing. The first dance at our wedding was to the song "Northern Lights" by Bowerbirds. On our first wedding anniversary (to the day!) we saw Bowerbirds at the Beachland, and got to dance together to a live performance of "Northern Lights." Another time, we enjoyed dancing to Snowblink's cover of Whitney Houston's "I Wanna Dance With Somebody."

Another fond memory comes in the fall of 2013, little more than a month after Cara was diagnosed. We saw Okkervil River, my favorite band of all and one that was very significant in our relationship. Cara, at the time, would have gotten too tired from standing for the whole show, so we brought a wheelchair and I wheeled her up to sit front and center below the stage. Although she couldn't stand, she sang her heart out along to some of the songs.

The last time we went to a show at the Beachland together was on my birthday last year. It was a stunning performance by Sharon Van Etten that we both very much enjoyed.

Spending so much time doing things that remind me of Cara is kind of a mixed bag in the emotions it brings, but I think, in the long run, it is better to do this. And it is important for me to share it with other people. I don't want anyone who knew her to ever forget what an extraordinary person she was.

Yesterday I was shocked to learn that the mother-in-law of one of my co-workers had just passed away.

From lung cancer.

Only ten days after being diagnosed.

Life is a very amazing and a very fragile thing.