Wednesday, April 13, 2016

The Only Way Forward is to Go Back

So much of Springtime is about looking and moving forward. The very earth itself seems bursting with anticipation, and in fact a few green shoots that couldn't wait for proper warm weather have already sprung out and now stand trembling and shivering in the chilly wind in our yard.  It is a time for growth, and change.

For me that change, and Spring itself, is psychologically punctuated by important anniversaries. In March, I celebrated the four year anniversary of my discharge from inpatient hospitalization and physical therapy. It wasn't the victorious homecoming I had envisioned, since I still couldn't walk, was still using a catheter and diapers, and required more care and assistance than I'd ever imagined needing prior to being, oh, say, about 100 years old.  But it was a glorious homecoming all the same, because it marked the end of almost six months of emotionally devastating separation from my family, lack of privacy, dearth of dietary choices, and all the other trials of lengthy hospital stays.

March also brought the anniversary of my friendship with a dear, funny man who died much too soon of a disease that made us share many disability tribulations and humorous fiascos. Of the many legacies he left behind - like friends who only know each other because of him, precious memories, ongoing joke memes - the one I try hardest to honor is to find humor in things, to let myself laugh (especially at myself) and try to get others to join me, and to give myself permission to rage against the horror and frustration of all of this sometimes; to feel ALL the things that having cancer and disabilities makes me feel and really acknowledge them without shame the way my friend used to do, the way he taught me.  Anger is okay. Joy is okay. Gratitude is okay. Outrage is okay. Depression is okay. Anxiety is okay.  Crying is okay. Laughter is okay.

Ever since I started going to counseling sessions with my onco-psychologist, I've resumed my old habit of journaling. Writing was a major factor in my first recovery from depression, almost twenty years ago, so I feel a lot of deja vu now when I sit in some public or private space and scribble in my little journal, simultaneously immersed in and separated from the scene surrounding me. Now, as then, the notes help me remember the moments that define each day, good or bad, that depression chemicals would try to erase from my mind shortly after they happen.  When you have a great moment, depression makes you forget about it, makes it short-lived. When you have a terrible moment but you survive it and carry on with your day, depression makes you forget that you were strong and that you coped.  But a journal remembers, so you can congratulate yourself later for those little victories, or allow yourself to acknowledge that something difficult was going on, that you felt pain or sadness or panic and that it was real and valid.

So even though it's Springtime and like everything else I want to move forward, it seems like the best way to do that is to go back, to the tools and the habits that worked before, like counseling and writing and sharing with others. To remember that I've beaten depression once, that anxiety is manageable, that my support network is strong and constantly present, and that I will see the other side of all of this eventually.

Monday, January 18, 2016

Impossible

At the new year's beginning is a natural time to do a little goal-setting in our lives. But even if it weren't January, I would still have been thinking about goals lately because my psychologist asked me to try to develop several concrete, specific goals for our therapy sessions. It was a daunting task, though it sounds simple at first, because with depression it is often much easier to define and measure what is NOT happening than what actually is. Many patients will describe their symptoms in these negatives: 
  • I'm not as interested in what is happening around me.
  • I'm not as good at rolling with the punches or adapting to situations as I feel I should be.
  • I don't feel cheerful as often or have my usual energy levels.
  • I can't recover my good mood quickly or easily after experiencing something sad or upsetting.
We describe depression as a sort of vague absence: of happiness, of cheer; an emptiness where enjoyment of life should be.  With evaluative tools like those, how do we measure progress towards mental health? I considered this a great deal over the holidays. How could I set goals for getting better?  What do I think being less depressed would look like?  So initially my goals were sort of weak and searching for direction. I would like to cry less often. I want to have fewer days where I'm overwhelmed, by sadness or anxiety or both. I want to dwell on cancer less, give less of my time to that disease in the form of worry and fear for those I care about.  It's not that I want to stop caring for the fates of others, far from it, I just need to be careful not to dwell on those worries and cares too much.

But I had a feeling I didn't quite get it yet, that I had not grasped what my therapist was trying to teach me. So I kept mulling it over. I started to think about when I had been recovering from depression in the past, and how sometimes to feel better, one had to do the things one used to do while well, even if one didn't feel like doing them, and the act of going through the motions brought about change in the brain. The chemicals would flow even if your heart wasn't totally in it. And little by little you could start to change your brain chemistry by acting out the life of a healthy you. I thought about the things I would be doing if I wasn't letting depression demotivate me, and I thought about how successful I usually am at setting physical goals.

So as my next therapy appointment approached I started thinking of other goals, things that I could sit back and look at and say, "Hey, if I accomplished that, then I must be feeling more motivated lately, I must be starting to get better." I set a goal related to walking distance, and a goal for getting my family outside and more active. I set a goal to spend more time with my face-to-face and online friends, replacing some of the time I spend feeling alone or isolated. As an introvert I highly value alone time, but there can definitely be too much of a good thing, especially when you're struggling with depression. 

When I met with my therapist he was pleased with the level of thought and care I had taken to evaluate his request, and in some respects that was the whole point: to invest energy in discovering what I define as a healthier, recovering self, and find ways that we could measure progress towards that state. So many people struggle to realize that anything is being accomplished by their depression treatment methods because they haven't yet defined what success will look like, and are easily discouraged when it feels like nothing is changing. Now we have eliminated that hurdle, and I felt really positive about the direction this therapy is going.

During this introspective period, I had occasion to think about impossibility a few times. It's very easy to negative self-talk yourself into thinking that something is impossible. Certainly this challenge of coming up with measurable goals for mental health seemed almost impossible at first, and I also recall my kids complaining that this or that task was impossible recently, too. There is a quote by Lewis Carroll about impossible things: 

Alice laughed. 'There's no use trying,' she said. 'One can't believe impossible things.'
'I daresay you haven't had much practice,' said the Queen. 'When I was your age, I always did it for half-an-hour a day. Why, sometimes I've believed as many as six impossible things before breakfast.'

When I was talking to my children about it I twisted the quote a bit to fit the situation. "Impossible is all in your head, it's a matter of perspective. I do three impossible things everyday before breakfast!" Of course they were confused and thought I was tricking them, until I explained that at one time, it was the professional, medical opinion that I would never stand or walk again. It was impossible. Yet every morning I stand up, use a regular toilet without help, and walk across the house to get breakfast. 

As much as it was a good lesson for the kids, it was also a good reminder for me. Depression makes you feel overwhelmed, despondent, fatigued, and sometimes anxious, and facing all of that you can start to think that recovery is impossible, that healthiness and happiness are impossible. Take a moment to remember the last impossible thing YOU did, and maybe you'll recapture some of your own fire, your motivation to keep fighting. Then sit down and figure out what your life as a recovered patient will look like, (be specific!) and use that to set goals you can actually measure your progress by. Planning what the changed you will be doing and feeling is a huge part of accomplishing the change.

Friday, December 18, 2015

Rollercoaster Summer: Cancer Sucks

Sometimes cancer is a well-formed, well-defined tumor that can be measured and quantified in neat, orderly, precise ways. Other times it is a tentacled monster, infiltrating, poking its deadly fingers into places it doesn't belong in ways that are impossible to measure and track. Regardless of which type of cancer you have in your body, I suspect for most of us cancer affects our lives in the second kind of way: we struggle to keep it contained or compartmentalized and instead it pervades nearly every part of our existence in stubborn, annoying, or even alarming ways.  That is how I've been experiencing it lately, at least. 

I feel like it's all around me constantly. People I know and care about are losing loved ones. Loved ones of mine are facing the relentless decisions about treatment options and side effects and quality of life and always the urgent rush that goes with it.  Decide quickly, decide now. While you are waiting it could be spreading those fingers around, it could be killing you.

Maybe it's because of all the losses being suffered, maybe it's the inevitable downhill slide after years of riding the stress and adrenaline high of managing the immediate medical crisis from 2011 to now, maybe it's mid-life hormone changes, maybe it's all of those things, but for most of the past year I've been feeling a sneaking, creeping, insidious invasion of another kind, like an emotional, cognitive cancer: depression. I recognize the warning signs from my experience with the illness in the past, so this time I didn't wait nearly as long to ask for help.  This summer I decided to talk to my oncologist about it, and get a referral.

This week I met with a psychologist at my hospital's cancer treatment center who specializes in oncology patients, who understands the ways in which depression affects how we cope with cancer, and how cancer and it's treatments and complications affect how we cope with depression.  I'm going to continue seeing him every couple of weeks and I have a good feeling about him, I think he will help me help myself quite a lot.

I feel like it's important for me to point out that I have a great support system. Needing professional psychological help doesn't reflect badly upon your family, friends, significant other, colleagues, etc. It doesn't mean they have somehow failed to adequately comfort and support you. It doesn't mean that you are weak or bad at coping, either.  It just means that sometimes you need to see the right doctor to treat your mind and soul, just like you need the right specialist for your cancer type or your endocrine health or your heart disease. 

If you feel like anxiety and worry are overwhelming you, if you have trouble sleeping or sleep too much, if you struggle to concentrate and detail recall seems harder than normal, if you feel listless too much or like sadness is your default emotion except when something specifically cheers you up, if you feel unusually angry or short-tempered a lot of the time, and don't understand why you keep snapping at people, if you frequently think and worry about mortality and death, if you notice your appetite has changed or you've gained or lost weight without planning to, it's possible that you could benefit from talking to your doctor about what you're experiencing. Don't be afraid to be honest and start the conversation. It doesn't have to lead to medications or therapy, if those words frighten or make you uncomfortable. At least open the door with your care team and let them educate you about the myriad ways to relieve the symptoms of depression and put more quality back into your quality of life. You deserve to live as your best self.

Monday, October 19, 2015

Rollercoaster Summer: Hotels

When you are living your life, it flies by you in the blink of an eye. With hardly a pause to breathe or digest the events, you can sit down one day and realize that a fair portion of the year has sped past you in a blur. Such was the case with this summer.  It's been a hell of a ride, with thrilling high points as well as lows. To describe everything that we experienced will seem like a novel, so I'd like to break it up into a few subjects that will make it easier for me to process it all and explain it coherently. I hope you'll bear with me.

At the beginning of summer, through a combination of luck and savings and good credit and persistence and hard work, my husband and I acquired a wheelchair lift van and got it into good enough shape to plan a trip to California to see my family. It's a fairly complicated undertaking, given my particular mix of ability and disability, and the size of our family: two adults, and three kids.  

The last time we traveled to California our twins were three years old, sleeping in playpens that we brought with us, so it wasn't difficult to find hotel rooms.  And I was sleeping in beds at that time, that helped, too.  This time we would discover that two adults and three children aged 7 and above are not permitted to occupy most ADA hotel rooms, which are typically suites with a single king bed and a pullout couch and only allow four persons. 

Of course having an ADA room with a suite was preferable because we could bring my chair in and I could sleep semi-upright on the couch instead of in miserable pain and discomfort on the flat bed mattresses, but the only time we got into one of those rooms was when the desk clerk forgot to ask how many people were in our party.  The rest of the time we were offered choices including switching to non-accessible double queen or double king rooms, or taking the ADA suite and booking a second room for the overflow of people. This would, of course, double our hotel expenses for the trip, which was out of the question. 

We decided the best scenario was to book the double queen or double king rooms that had pull-out couches whenever we could, and I would make do on a flat bed whenever the couches weren't available. Sounds simple enough. Except it turned out that the particular weeks of our vacation turned out to be monumentally busy and full of huge regional events that left us facing No Vacancy signs at every turn. There was a softball tournament near Denver, a monster truck rally in Nevada, and after driving more than an hour longer than we planned the first day just to find a hotel with room for us, we realized we would need a strategy in order to continue our trip successfully. 

When I'm driving, I like to just go as long and as far as I can, letting my husband spell me now and then, and find somewhere to stay when I get too tired to continue, often at nearly midnight or even later. It became clear that this would be impossible on this trip, and we would need to call ahead to towns we thought we could reach that day and see if they would have rooms. Most of the places we usually stay on our way to California, like Laramie, Rawlins, Elko, and Wendover were either completely full or didn't have big enough rooms left for all five of us.  So after sleeping an hour north of Denver the first night, we found that we could get no further than Salt Lake City the second night unless we drove all the way to Reno, which was too far. It felt completely strange to stop driving for the day at dinner time, but at least that way there was time for the kids to enjoy the hotel pool before bed time.

The next day, we got up and got moving by around eight, and I had realized that it was going to be a very long day.  You see, if we drove an ordinary 10 hours or so, including meal and restroom stops, we would be stopping for the night in the vicinity of Sacramento, a scant three hours from my hometown, and I knew I couldn't stop that close. Not when I hadn't seen my parents in three years. We would just have to drive the whole rest of the way in one day: almost twelve hours of drive time, plus two or more hours spent on stops.

So we did. And it saved us from having to find another hotel room.  On our return trip, we were prepared for how busy everyone would be and planned our stops for each night, calling ahead and pre-booking rooms as we went. We went all the way to Salt Lake again the first night, and Denver the second.  It was an important lesson that we'll remember on our vacations from now on: a family of five, and one with disabilities to consider, is no longer a family that can fly by the seat of their pants and take chances on last minute hotel plans.  Like so many other things we grapple with, we've got to plan ahead every detail that we can, because our situations are too inflexible to accommodate true spontaneity.

Coming up next in the Rollercoaster Summer series is part two: Accessibility.

Rollercoaster Summer: Accessibility

One of the most frustrating things about traveling outside of our home turf is not knowing what kinds of accessibility issues we'll run into when we go places. In your neighborhood you learn where the sidewalk ramps are, you know all the good parks with paved paths, what restaurants have table spacing that allows for wheelchair occupants to not feel like inconvenient roadblocks, and where all the decently clean handicap-accessible public bathrooms are located.

When you venture out, the world is full of unknowns. For some this may be exciting, for others stressful; for us it's a complicated blend. We're proud of ourselves and exhilarated when we conquer a new situation with accessibility challenges, but the constant strain of worrying and planning can really wear on us.

What I hope you'll learn from our experience, though, is that it's worth trying. We saw and did things as a family on this trip that are priceless and irreplaceable. I couldn't always participate as fully as an able-bodied mom would, but I was there, as close as I could be, and the kids got to make wonderful new memories with me and their dad. 

We went to the beach even though I had to stay on a paved path at the top of the bluffs. The kids got to feel the power of the waves and run scared and excited back up the sand, then swim and wade in the safer tranquility of the river and play with sand castles.



We saw gorgeous botanical gardens where lengthy trails have been especially designed to be accessible for manual and power wheelchairs, including taking the steepness of grades into consideration. It even had a trail out to the edge of the headlands with gorgeous views of the ocean.


My husband and I walked a whale and seal watching trail that was entirely elevated on a wooden platform so the whole circuit was accessible.  We saw seals sunning on the rocks, and sat at lookout points enjoying the wind on the headlands and the salty spray in the air and just being together at the ocean.














We took our kids to Confusion Hill and the Drive-Through Tree, where they played in the Gravity House and took a train ride to learn about California's logging history. I waited at the bottom of the hill for those, with my mom to keep me company, but I could go through the tree no problem. 

You might notice in this photo, however, something missing from my power chair: the legs. That's because, one night when we were taking the kids to the carnival that came to town for the Fourth of July, we ran into one of those unexpected accessibility mishaps. We had to park several blocks from the carnival, and it was well after dark. And all of the sudden, the sidewalk ended at a side street with no ramp. I had to backtrack to the nearest driveway we'd crossed, but in the dark I couldn't see that the there was a two inch drop from the driveway to the street, and that the street met the drop at a steep angle.  When I drove off the driveway onto the street, the wheelchair legs hit the street and bent under, snapping the metal of one of the leg attachment points right off.  If I had been someone who can't quickly pick up their feet, I would have broken my ankle quite badly.  We were extremely fortunate that I could jerk my feet up before I was injured, and that it turned out we were able to replace the leg mounting bracket a couple months later for not much more than a hundred bucks.

Maybe not everything went perfectly according to plan, but I think you can see from these few images that we made memories on this trip that we'll treasure for a good long time, and the mistakes and mishaps and worries were absolutely worth it.  Go forth! See and do! Because another thing this summer has been teaching me is that the future is promised to no one, and you need to make your moments count while you can.

Next up is Rollercoaster Summer part three:  Cancer Sucks.