I have not written here in a long time. Life has been happening, of course, time passing; but there have not been the kind of sweeping changes, dramatic challenges, or uplifting triumphs of the magnitude that used to drive me to this keyboard like a spawning salmon rushing upstream, desperate to share my existence with others, to live on in another generation after mine. Yet as I sit here, exhausted, as I often am, from just doing the most ordinary of things, I thought maybe it was time to let you know I'm still here. Still carrying on as best as I can, in case you, too, are still out there treading water in your struggle, or hefting yourself up out of a pit of trouble, or cresting the peak of your biggest hurdle, and hoping you're not all alone. So today I will discuss making and eating lunch.
***
I took a nap this morning, trying to recover from a day of outings that included a lunch, some grocery shopping, and a movie with my husband yesterday. But somehow I overslept my wake-up-for-lunch alarm, and instead woke up at almost 1pm. I sat up, taking less than the usual amount of time to let my brain prepare for standing because time was potentially of the essence: oversleeping could mean my blood sugar would be dangerously low, and also I had an even more urgent need to use the bathroom. So I stood up pretty quick, hoped I wouldn't lose my balance, put my crocs on because walking barefoot is a no-no (what if I stub my toe and it doesn't heal properly because I'm diabetic?), and went down the hall to the bathroom. Yes, there is an en suite in my bedroom, but that is my husband's bathroom, because the toilet is next to the shower stall, with nothing to lean on to stand up from it, and so the hall bathroom with its toilet next to the counter has always been my preference. There is even a designated corner of the counter that my daughters, who share that bathroom, are not allowed to clutter up, because it is the Corner For Mom's Hand to Push On.
I did what people do in bathrooms, and then got up and washed my hands. Time was still ticking, but hopefully my sugar would not be too low, since I had not started to feel cold sweat symptoms yet. I reached my living room and greeted the dog, feeling guilty that I had slept two hours longer than planned and she had been bored and stuck inside that whole time. So before I sat down I let her outside with a toy to finally do her own business and some running around playing. Then I plopped into my recliner, and grabbed my blood glucose test kit. With great relief I tested at 100, still around 15-20 points above where I would really start to have problematic hypoglycemic symptoms. Food would certainly have to be my next priority, though. Time to get back up again.
I had planned to try these new crackers and cheese we picked up yesterday for lunch, so I went to the cereal/cracker/pop tart/cookie storage area and found the flatbread crackers. Then I grabbed a kiddie plate (they have edges that keep stuff from sliding off), a butter knife from the dining room table, and then the package of cranberry white cheddar out of the fridge. I loaded up all of this in my arms and took it to my recliner, where my back is happiest, thinking I would eat it there using my lap table. But I had mistaken the cranberry white cheddar for being something creamy and spreadable, whereas it was actually a true white cheddar (very solid) with pieces of cranberry in it, so eating that in my lap turned into quite a challenge. And the dog was starting to bark outside, which I never like to let her do for more than two minutes at a time to avoid upsetting the neighborhood.
With a sigh, I gathered up all my lunchings and took them to the dining room table. I opened the door and talked to the dog for a minute, telling her to shush and be easy since I couldn't convince her to come back inside when the outdoors was so gloriously and unseasonably mild and sunny and fascinating. The sparse cranberries in my cheddar were not very satisfactory, so I grabbed some Thanksgiving cranberry sauce out of the fridge and spread it on the flatbread to supplement the moisture and flavor of the cheddar. That was better but still not a stellar lunch. I was still hungry, so I got back up, went to the island, opened up some English muffins, and put one in the toaster. Then I went back to the back door, to ask the dog, again, to either come inside or be quiet. She promised to be quiet, again. Walking back to the toaster from the back door, the entire width of the kitchen and dining room, was starting to feel like half a city block instead of the 15 or so feet it probably really is, but I made it, and found that my toaster setting had been too low and the muffin wasn't ready. I put it back down for another round. Then I walked over to the back of the couch, and bent over it until my head almost touched the cushions. I do this several times a day. It stretches my lumber spine without unduly bending my fused thoracic spine because my thoracic is supported by the width of the backrest and back cushions of the couch. Exhaling slowly, I felt some of the pent up lumbar tension that grows and grows all the while I'm standing start to ease, imagining the disc spaces between those vertebrae expanding and revitalizing with improved blood flow and being plump and fluid and healthy, because hell, maybe visualization can help stave off disc disease, who knows? And then, using arm strength not upper back strength (that would be another no-no), I did a sort of push-up off the back of the couch to stand up again, and returned to the kitchen to tackle the fridge search.
I had to rearrange a few things in the fridge to liberate some jam, which I set at the dining room table because it was becoming very clear that my back would not stand for letting me stand at the island to spread jam. (See what I did there? Haha.) Then I got out a sandwich baggie to put my cranberry cheddar into because it didn't come in resealable plastic. I got one for the flatbread crackers for the same reason, but they turned out to be too big, so I went back to the island and got a bigger baggie and got the crackers sealed up and put the cheese and the leftover cranberry sauce back into the fridge. The toaster popped back up, thankfully with done but not burned muffins this time. I went to the table for the plate I'd been using, back to the toaster, got the muffins out, and finally sat down at the table again. It took all of about 2 minutes to put jam on those muffin halves and eat them, after all that effort, but at least when that was done I wasn't hungry anymore.
The dog was barking again, probably because all over the neighborhood trash trucks and recycling trucks and package delivery trucks have been bustling all day, typical Monday traffic that tends to set the neighborhood dogs on edge. I went out onto the back porch and tried to play with her, sitting on the step and letting her tease me by bringing her toy almost within my reach but not quite letting me have it to throw for her. I know, sometimes it's hard to tell which one of us is the pet. She still wouldn't come inside, but at least she was once again quiet, so I took a deep breath, stood up off the step, climbed up the two stairs to the deck itself and came back inside. I put away the jam, and collected a package of holiday surprises I had purchased this weekend on Amazon from the front porch, which was probably why the dog had barked this time. Then at last I sat down in my recliner to inject my lunch insulin and catch my breath, and relax.
Lunch had taken me at least an hour and a half. I feel wiped out. I have a couple more hours to recover from this before I get the kids and I fed dinner and ready to go out to the town Christmas tree lighting ceremony, where my daughters will be performing with their school choir. After this day, I will probably need another nap again tomorrow morning. Maybe I'll try a simpler lunch tomorrow, like fried eggs and one of those English muffins. Surely that will be easier, right? Or more likely, I'll opt to take the easiest way out of all, and have a bowl of the least-sugary cereal we have, off-set with insulin and a pre-packaged cheese stick, which takes not even a tenth of the effort of today's ever-so-simple-sounding crackers and cheese. We'll see.
***
And that's how the days go rolling by, with little variations and occasional adventures, their fair share of high points and low pits, managing the energy bar and juggling what needs to be done each day, each week, with the help of my husband and my children, each of them a crucial pillar holding me up. I hope that you, too, have your pillars and your high points, that you carry onward and upward, that when you fall it is with grace and the resolve to get back up, and that your lunches are always worth your effort. ;)
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.
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.
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.
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.
