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.

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