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.
Friday, December 18, 2015
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.
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.
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.
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.
Saturday, April 25, 2015
Chronic Pain
featuring guest author Rachel Cunning
Rachel Cunning knows a thing or two about living with endless, sometimes invisible pain. Please join me in reading and sharing her in-depth look at the ways pain changes us, and the ways we change ourselves to cope. You can learn more about Rachel and follow her journey at https://casulamellita.wordpress.com/
And when you read this, if you are someone lucky enough not to share in this experience, remember that there could be numerous silent sufferers around you, who would be grateful for a little more kindness and a little less judgment in the eyes of those who look on them. Thank you for taking a moment to see inside the struggle we live.
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When I was 23, I did what I had done so many mornings: I woke up and stumbled off to make coffee. Except that morning was different. That was the morning I fell down a flight of stairs, landed on my spine as I slid down each step, eventually lost my job as a result, and spent countless hours in and out of doctors and hospitals, culminating in a back surgery where I was cautioned that a possible outcome of a poor surgery would be paralysis. Such side effects are rare, and my surgery was fairly successful. Until recently, I had managed my back issues because I was able to foresee my triggers and react accordingly. Lately, however, my back pain has been managing me.
Pain is a mostly invisible phenomenon—all neatly bundled away inside your nerves and your brain. Pain is only easy for another person to recognize at its extreme: when another person goes rigid, clenches the jaw, gasps audibly, cusses, grabs a body part, or suddenly has some kind of horrific accident that can only mean terrible, terrible pain. Unlike this kind of excruciating pain, every-day pain is almost completely invisible. A common cold, on the other hand, is easy to notice. Your friend has a telltale red nose and is clutching a box of Kleenex; she may be coughing and sneezing excessively. Nor is it hard to miss when an acquaintance breaks a bone. Because I “seem” fine, people assume that I am fine. I am not fine.
At my most recent doctor’s appointment, I was asked if I were ever pain free. I sat (in pain) on the bed and thought hard about the question. I know that I’ve been without pain. I remember when it wasn’t a daily part of my life. I just can’t remember any time since August where I haven’t had pain. Everything I have done since then has been done with some degree of pain. Some days are good days; I barely notice the pain, and I’m perfectly functional. Other days, it’s hard for me to focus on much else.
This pain I have lived with is mostly invisible. Even on bad days, it’s invisible to others in the grocery store when I have to ask my husband to push the cart for me because I can’t anymore. Or if I am shopping without him and I end up with a bum cart that pulls to the left, it is no longer a mere nuisance. This bum cart is an ordeal as I exert constant pressure to steer the cart straight; every movement, every step, sets my back ablaze as my nerves scream their protests. On such days, I can’t even help put groceries away. Bending over to unload the groceries, to open the bin to stash vegetables, to lift the half gallon from the floor or counter to the fridge is just not possible. I am filled with rage at myself, at my back, for betraying me as I watch my husband both unload the car and put away all the groceries without a hint of complaint while I stand idly and uselessly by.
Sometimes my pain will look like annoyance instead. My poor dog Alke has begged every day for the last week and a half for a walk in the morning—one of our favorite morning activities together after my husband has left for work—and I’ve had to reject Alke’s plaintive eyes each morning. You see, the last time I walked him, he pulled too much. He’s normally so good on his walks; we worked so hard with him to not pull and to walk nicely beside us. But whenever he catches a whiff of anything worthy of investigation, if he so much as dips his nose to smell the grass, the pressure on my lower back intensifies, and I yank on his leash in frustration, say “NO” loudly—such a small infraction, to smell a clump of grass—and try desperately to keep it together until I can get back home as with each step and each small tug, I feel my back become angrier and angrier. Instead, I throw Frisbees for my dog, toss his ball, and give him endless cuddle sessions, but he still lets me know each morning that he’s ready for his walk now, please.
Since my pain is in my lower back, it very literally affects everything I do. Sometimes my attention wanders in meetings because I don’t want to have to be that person in a meeting who has to stand and walk around. Even then, sometimes I’ll stand, and I’ll be distracted by the pain in my back. If I’m having a bad pain day, I can’t tie my shoes without pain. I can’t sneeze without pain. I can’t lie down without pain. Even on good days, I can’t go on a road trip or get on a plane without knowing by the end that I will be in significantly more pain than when I had started the journey.
I have tried so many different strategies to alleviate the pain over the years and particularly since August. For starters, I’m incredibly conscientious and responsive to new triggers of pain. I have, for example, given up the dead-lift from my weights routine after it caused too many problems. I have a new standing desk at home and at work. I’ve tried prescription strength pain medication and muscle relaxers, and I was cautioned by my doctor that if I used the heating pad much more I could give myself permanent burns on my back. I’ve spent a ridiculous sum of money on physical therapy, and I’m beginning to try massage therapy too. Most recently, I had a cortisone injection into my back under sedation. Some of these things help, temporarily anyway, but I live in this constant state where I wonder what will set my back off next, if I can push the grocery cart this weekend, when I can walk my dog again, whether I will be able to lift my maybe-one-day child into the air as she coos in delight with her fingers stretching toward the sun.
This dark side, this despair-filled bleak vision of the future, may seem melodramatic, but it lurks as a constant pessimistic phantom when I feel the every-day ache, like a dull spearhead is embedded in place of my spine even now as I sit to write this. Sometimes this despair feels more like a dire premonition of inevitable calamity on days when I can only clench my teeth together tightly as I walk—just walk—through the grocery store as my husband pushes the cart ever so slowly beside me.
I am also always mindful of the fact that my pain used to be significantly worse than it is now. Before my first surgery brought significant relief, the pain would seize me in fits that left me incapable of either moving or speaking, as if every nerve in my body were radiating waves of lightning instead of relaying information. During one trip to another doctor’s office, I reached a breaking point. I was under so much strain from dealing with the spasms of pain, but I was also too stressed to handle the agony of another failed cortisone shot. As my blood pressure rose to unnatural levels and I felt my anxiety spiral out of control, I asked what my other options were besides the shot because I just couldn’t subject myself to another one. The doctor wheeled on me—my 23-year-old self, in so much pain I couldn’t work anymore, couldn’t drive my stick shift any more (I can never own a manual transmission again) and absolutely terrified. He raised his voice in frustration and replied that I could lie in bed 24 hours a day and never move again and that I could have a catheter and people to feed me and that he was positive that I would be fully healed after 6-8 weeks of such a lifestyle. He narrowed his gaze and asked rhetorically, “but you wouldn’t like to live like that would you?” I managed to tell him no and to leave his office with as much dignity as I could muster through my tears, but I think of what he said that day far too often. I think of it anytime I lay in bed, desperate to roll into a more comfortable position and wondering how hard I must grit my teeth to endure the change, whether it’s worth the pain to roll over to try to sleep a little better.
I fear that I will lose my ability to walk—let alone carry a backpack of supplies over alpine meadows and arduous mountain passes—as some days I do struggle to walk. Instead of a normal gait or pace, I lumber around like an elephant, swaying and unable to twist or turn with any kind of flexibility or natural motion. Other days, I walk so slowly that I am frustrated with my snail-like pace. These are the bad, extreme days, of course, but I am only 31 years old. What will my mobility be in ten, thirty, or fifty years? What will I have to sacrifice to the demands of my back? How will I manage when I cannot join my husband on backpacking trips? Would I be bedridden from the pain if we were to have a child? These questions and many others haunt me in my dark moments of weakness and doubt. The real agony of living with chronic pain is not the pain itself, its irregular ebbs and flows of intensity, but with the terrible crushing fear of a future that is limited, shaped, and filled by that pain. ~Rachel Cunning
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Thank you, Rachel, for putting so well what many of us may struggle to express. I hope that as your journey continues, whether things get better or worse, you will know that there are people out here like you who understand, and who hope fiercely that you can create moments that make it all worthwhile. ~MrsC
Thursday, April 9, 2015
Just Ask
A sad fact you will eventually learn when you are coping with becoming disabled is that sometimes even other disabled people are full of judgement and bias. I don't see it all the time, but often enough to never forget that it's out there.
Here's a recent example: as we were leaving a restaurant and getting into the car, a woman stood on the sidewalk in front of us, waiting while her husband sat in their car in the parking lot. He was waiting to take the handicap spot we were about to vacate. This woman watched my husband load my wheelchair into the car while I got buckled up and turned it on. From the driver seat, because I always drive. No big deal, people watch us load our family in and out of the car all the time, and I often get weird looks about it that I try to ignore. I get it. It's hard for people to understand why I need a wheelchair and a handicap parking spot if I can drive and stand up and take the few steps from the car to the chair and back again. But this lady didn't stop with a questioning look or a confused look. She stood there and glared at me, without looking away. Unashamed, righteous loathing just streaming from her eyes right into me.
When my husband finished loading the chair and got into the passenger seat, he and I made eye contact, and immediately we both knew that we both had seen the way she looked at me. He said, "I almost walked up to her, right to her face, to bark at her whether there was anything she'd like to ask me about my wife's spinal cancer."
I breathed a sigh of relief. Relief that he was ready to defend me but had opted not to create a public scene that I would have found embarrassing even if it was justified. "I know what you mean," I said. "Apparently I'm not handicapped enough to earn a decal parking spot in her eyes, even though she can stand there for five minutes to glare at us, and her husband can obviously drive as well as I do."
I backed out of our spot and drove away from there without speaking to them, but I couldn't stop thinking about it. I'm tired of getting those glares, and the skeptical looks, and the dismissive eye-rolls. "Maybe the answer to how this keeps happening is to become a kind of public spokesperson for myself. Just get it out there and be obvious about it," I wondered while I got on the freeway. "Put a sign on the back of the wheelchair that says something like 'Ask me how many times I've learned to walk' or 'Feel free to inquire about how EHE cancer affects my family.' Maybe I need to just willingly explain it to people, wherever we go, and that will help them understand and maybe they'll donate to EHE research or something."
But it's a frightening prospect. Am I really ready to take on being a public figure for something this big? Do I know enough to be a good ambassador for EHE patients? What about when I'm feeling shy or depressed and I just don't want to talk to strangers about it? What if explaining the outlook or prognosis of many EHE patients to strangers only serves to make my own children more afraid of what will become of their mother? What if EHE patients who aren't disabled by their disease would rather have a different representative, someone less focused on life with a handicap and more fervent about early detection and experimental treatment options? There are so many facets to this disease, it affects different patients in so many different ways, it seems unlikely that any one person could hope to represent EHE.
Thank goodness no one person needs to. The EHE patient community is already out there, reaching out to strangers with EHE t-shirts and wristbands and fundraisers, spreading the word about the myriad challenges of EHE and drumming up public support for more research. Bless their determined hearts! So I remain free to maintain my primary focus on the disability side of my situation, working in my Homeowners' Association and my community and my greater metro area to promote better access and quality of service to handicapped citizens. So allow me to take a moment to explain why I still need and make use of a wheelchair and handicapped parking.
Imagine that your spinal cord is an analog telephone line. For you younger readers, that means it requires a physical cord to transmit a signal from point A to point B, unlike a Wi-Fi system where phone signals can be broadcast through the air without a cord or phone line. In this analogy, data from all over your body such as temperature, position of your feet, whether your muscles are flexed or relaxed, whether the ground you stand on is even or bumpy, all of this data is transmitted from your nerve endings to your brain via the analog phone line in your spine.
For most of you this phone line is in fantastic shape, it's well-insulated from weather and movement and provides excellent signal clarity, so that at all times your brain is self-aware of every necessary inch of you. When you become imbalanced, your phone line allows for instantaneous communication from the brain to your limbs, and your arms and legs move almost immediately to correct your spatial positioning and prevent you from falling. You can walk for miles, without ever worrying about a dropped call sending you sprawling face-first on the sidewalk. And if you become too warm while you walk, your internal air conditioning system will automatically turn on, because your flawless phone line allows communication directly from your skin to your thermostat, which tells you to sweat. You could stand for hours, and your feet would shuffle around to keep you comfortable, your back would request an occasional stretch and change in position, but you could go right on standing all the while.
The difference between most of you and me is that my phone line is damaged. In some places the copper wiring is exposed, and the signal strength is not 100% reliable. So I get dropped calls, in other words, my legs sometimes buckle, and my thermostat can't always talk to the rest of my body. If I stand up too quickly, triggering a little chiropractic-style "pop" in my lower back, I get a dropped call. If my kneecap pops while I'm walking, or my ankle or hip, I get a dropped call. I can only stand for a few minutes at a time, before my leg muscles get fatigued and start thinking about dropping my call. If I close my eyes or try to look around too much, such as trying to maintain eye contact with someone I'm talking to while walking or standing, I often lose my balance and risk having a dropped call. If I get too hot, my thermostat can't get in touch with my air conditioner, so I don't start sweating in time to maintain a comfortable, safe internal temperature. If I get too cold, which happens when it's only as cool as 50-60 degrees Fahrenheit, the signal from my feet to my brain is not strong enough to convince my brain that my feet are still there, and my brain will shut down circulation to my lower legs as if I were in desperate, freezing conditions, sacrificing my feet and toes to hypothermia if I don't take steps to artificially warm them.
I take a lot of precautions to prevent dropped calls. Because when your phone line is as damaged and exposed as mine, the potential injury from a fall could be catastrophic. If I actually fell down, the impact could grab everything I've worked so hard to regain and take it all away again. So I don't take big risks. I don't try to walk all the way in to a fast-food restaurant from the car, stand in line to place my order, and then walk all the way to a table to sit down. I park up front in the handicap spot and bring my wheelchair in with me, saving my energy in case I need to do something really difficult and energy-consuming, like make a trip to the public restroom.
So when you see me driving or taking a few steps to get in and out of my car, and you're left wondering why I deserve to carry a disability placard and park up front, just ask. Stop glaring at me like you think I'm scamming the system somehow, or that I'm only sitting in a wheelchair because I'm fat and lazy. JUST ASK. I'll be happy to tell you all about it.
Here's a recent example: as we were leaving a restaurant and getting into the car, a woman stood on the sidewalk in front of us, waiting while her husband sat in their car in the parking lot. He was waiting to take the handicap spot we were about to vacate. This woman watched my husband load my wheelchair into the car while I got buckled up and turned it on. From the driver seat, because I always drive. No big deal, people watch us load our family in and out of the car all the time, and I often get weird looks about it that I try to ignore. I get it. It's hard for people to understand why I need a wheelchair and a handicap parking spot if I can drive and stand up and take the few steps from the car to the chair and back again. But this lady didn't stop with a questioning look or a confused look. She stood there and glared at me, without looking away. Unashamed, righteous loathing just streaming from her eyes right into me.
When my husband finished loading the chair and got into the passenger seat, he and I made eye contact, and immediately we both knew that we both had seen the way she looked at me. He said, "I almost walked up to her, right to her face, to bark at her whether there was anything she'd like to ask me about my wife's spinal cancer."
I breathed a sigh of relief. Relief that he was ready to defend me but had opted not to create a public scene that I would have found embarrassing even if it was justified. "I know what you mean," I said. "Apparently I'm not handicapped enough to earn a decal parking spot in her eyes, even though she can stand there for five minutes to glare at us, and her husband can obviously drive as well as I do."
I backed out of our spot and drove away from there without speaking to them, but I couldn't stop thinking about it. I'm tired of getting those glares, and the skeptical looks, and the dismissive eye-rolls. "Maybe the answer to how this keeps happening is to become a kind of public spokesperson for myself. Just get it out there and be obvious about it," I wondered while I got on the freeway. "Put a sign on the back of the wheelchair that says something like 'Ask me how many times I've learned to walk' or 'Feel free to inquire about how EHE cancer affects my family.' Maybe I need to just willingly explain it to people, wherever we go, and that will help them understand and maybe they'll donate to EHE research or something."
But it's a frightening prospect. Am I really ready to take on being a public figure for something this big? Do I know enough to be a good ambassador for EHE patients? What about when I'm feeling shy or depressed and I just don't want to talk to strangers about it? What if explaining the outlook or prognosis of many EHE patients to strangers only serves to make my own children more afraid of what will become of their mother? What if EHE patients who aren't disabled by their disease would rather have a different representative, someone less focused on life with a handicap and more fervent about early detection and experimental treatment options? There are so many facets to this disease, it affects different patients in so many different ways, it seems unlikely that any one person could hope to represent EHE.
Thank goodness no one person needs to. The EHE patient community is already out there, reaching out to strangers with EHE t-shirts and wristbands and fundraisers, spreading the word about the myriad challenges of EHE and drumming up public support for more research. Bless their determined hearts! So I remain free to maintain my primary focus on the disability side of my situation, working in my Homeowners' Association and my community and my greater metro area to promote better access and quality of service to handicapped citizens. So allow me to take a moment to explain why I still need and make use of a wheelchair and handicapped parking.
Imagine that your spinal cord is an analog telephone line. For you younger readers, that means it requires a physical cord to transmit a signal from point A to point B, unlike a Wi-Fi system where phone signals can be broadcast through the air without a cord or phone line. In this analogy, data from all over your body such as temperature, position of your feet, whether your muscles are flexed or relaxed, whether the ground you stand on is even or bumpy, all of this data is transmitted from your nerve endings to your brain via the analog phone line in your spine.
For most of you this phone line is in fantastic shape, it's well-insulated from weather and movement and provides excellent signal clarity, so that at all times your brain is self-aware of every necessary inch of you. When you become imbalanced, your phone line allows for instantaneous communication from the brain to your limbs, and your arms and legs move almost immediately to correct your spatial positioning and prevent you from falling. You can walk for miles, without ever worrying about a dropped call sending you sprawling face-first on the sidewalk. And if you become too warm while you walk, your internal air conditioning system will automatically turn on, because your flawless phone line allows communication directly from your skin to your thermostat, which tells you to sweat. You could stand for hours, and your feet would shuffle around to keep you comfortable, your back would request an occasional stretch and change in position, but you could go right on standing all the while.
The difference between most of you and me is that my phone line is damaged. In some places the copper wiring is exposed, and the signal strength is not 100% reliable. So I get dropped calls, in other words, my legs sometimes buckle, and my thermostat can't always talk to the rest of my body. If I stand up too quickly, triggering a little chiropractic-style "pop" in my lower back, I get a dropped call. If my kneecap pops while I'm walking, or my ankle or hip, I get a dropped call. I can only stand for a few minutes at a time, before my leg muscles get fatigued and start thinking about dropping my call. If I close my eyes or try to look around too much, such as trying to maintain eye contact with someone I'm talking to while walking or standing, I often lose my balance and risk having a dropped call. If I get too hot, my thermostat can't get in touch with my air conditioner, so I don't start sweating in time to maintain a comfortable, safe internal temperature. If I get too cold, which happens when it's only as cool as 50-60 degrees Fahrenheit, the signal from my feet to my brain is not strong enough to convince my brain that my feet are still there, and my brain will shut down circulation to my lower legs as if I were in desperate, freezing conditions, sacrificing my feet and toes to hypothermia if I don't take steps to artificially warm them.
I take a lot of precautions to prevent dropped calls. Because when your phone line is as damaged and exposed as mine, the potential injury from a fall could be catastrophic. If I actually fell down, the impact could grab everything I've worked so hard to regain and take it all away again. So I don't take big risks. I don't try to walk all the way in to a fast-food restaurant from the car, stand in line to place my order, and then walk all the way to a table to sit down. I park up front in the handicap spot and bring my wheelchair in with me, saving my energy in case I need to do something really difficult and energy-consuming, like make a trip to the public restroom.
So when you see me driving or taking a few steps to get in and out of my car, and you're left wondering why I deserve to carry a disability placard and park up front, just ask. Stop glaring at me like you think I'm scamming the system somehow, or that I'm only sitting in a wheelchair because I'm fat and lazy. JUST ASK. I'll be happy to tell you all about it.
Monday, January 19, 2015
Not Alone
If I haven't already told you about seeking out social network connections to learn about and cope with your disability and/or serious illness, I need to do it now. Going through a traumatic medical ordeal can be isolating and overwhelming, but finding a community of others surviving similar circumstances can bring hope, comfort, and even vital information that could help your own healthcare team.
One especially isolating factor for me has been the sheer rarity of this particular type of cancer. At less than 1% of all cancer diagnoses, it's easy to feel like there's no one out there who even knows enough about it to give you a fighting chance. Fortunately, there is a Facebook group for patients and family members with Epithelioid Hemangioendothelioma, and if there's one for such a rare disease as this, there's probably a group or many groups for you, too.
The group has been absolutely invaluable to so many of its members. In that community we finally find people sharing similar experiences, fears, and treatments to us. Perhaps most importantly, in that community we are finally able to compile real data from actual EHE patients to help inexperienced patients and their sometimes equally inexperienced oncologists develop a treatment plan with the best possible chances of success, and actively help researchers who are trying to understand the underlying cause and many different ways this disease presents.
If you have been diagnosed with a serious medical condition, are injured and/or disabled, I strongly encourage you to seek out your own group of similar individuals for support. You must always be mindful, however. Be careful to protect your most personal and confidential data, remember that no matter how similar, no two medical situations are ever exactly the same, and don't allow yourself to be completely overwhelmed in the deluge of information you will receive from other patients and supporters. Read with skepticism and critical thinking, and above all use the information to create meaningful and thorough dialog with your healthcare team - no amount of accurate anecdotal evidence from others can replace the importance of clear, detailed communication with your own doctors.
Used properly, a patient community can be a precious resource for treatment ideas, understanding, empathy, ties to financial and transportation assistance, and to finally not feel so alone in what you're going through. I hope you seek that camaraderie in your preferred social venues, be they online, faith-based, etc.
You can find the EHE group at https://www.facebook.com/groups/EHEcancer/
One especially isolating factor for me has been the sheer rarity of this particular type of cancer. At less than 1% of all cancer diagnoses, it's easy to feel like there's no one out there who even knows enough about it to give you a fighting chance. Fortunately, there is a Facebook group for patients and family members with Epithelioid Hemangioendothelioma, and if there's one for such a rare disease as this, there's probably a group or many groups for you, too.
The group has been absolutely invaluable to so many of its members. In that community we finally find people sharing similar experiences, fears, and treatments to us. Perhaps most importantly, in that community we are finally able to compile real data from actual EHE patients to help inexperienced patients and their sometimes equally inexperienced oncologists develop a treatment plan with the best possible chances of success, and actively help researchers who are trying to understand the underlying cause and many different ways this disease presents.
If you have been diagnosed with a serious medical condition, are injured and/or disabled, I strongly encourage you to seek out your own group of similar individuals for support. You must always be mindful, however. Be careful to protect your most personal and confidential data, remember that no matter how similar, no two medical situations are ever exactly the same, and don't allow yourself to be completely overwhelmed in the deluge of information you will receive from other patients and supporters. Read with skepticism and critical thinking, and above all use the information to create meaningful and thorough dialog with your healthcare team - no amount of accurate anecdotal evidence from others can replace the importance of clear, detailed communication with your own doctors.
Used properly, a patient community can be a precious resource for treatment ideas, understanding, empathy, ties to financial and transportation assistance, and to finally not feel so alone in what you're going through. I hope you seek that camaraderie in your preferred social venues, be they online, faith-based, etc.
You can find the EHE group at https://www.facebook.com/groups/EHEcancer/
Thursday, January 15, 2015
Signs
My husband and I have long joked that I need to wear a sign
like the one in the movie 28 Days, "Confront me if I do not ask for
help." It's an acknowledgement of my stubborn ways and the fact that I sometimes make things harder for myself by being too intent on doing something on my own without help.
Lately I'm becoming aware of another warning I might need to
wear, similar to the defiant threat from the babysitter in Adventures in Babysitting: "Don't f*** with the babysitter." Don't mess with me. I do not play around, I mean serious business and I generally do not consider losing an option.
Forget about all the struggle of the past four years to diagnose, treat, and overcome medical problems of life-changing proportions; this was a character trait from the very beginning I think. I've never dealt well with being told something was impossible or too hard or not for girls or any other artificial limitations. I'm the little girl who jumped off 5ft boulders and flapped her arms trying to fly, almost every day. For years. (R. Kelly had nothing on the amount of belief in me.)
This tenacity has manifested in a variety of ways in my working and private life. For example, I'm terrific at finding things. All sorts of lost things. "The such-and-such file folder is missing; no one can find it." Oh yes I can. Watch me. I have a fairly good eye for detail and an uncanny ability to remember where I've last seen something, be it a physical or a digital file.
Sometimes it manifests in direct conflicts with people. When confronted with the shocking financial betrayal of a colleague, for example, I relentlessly directed my finding skills at tracking down every possible byte of data that could assist in bringing the perpetrator to justice. (You do NOT want to give me a reason to internet stalk you.) When my eventual husband's ex-girlfriend attempted to wheedle her way back into his life with emotionally abusive ploys like how depressed she was now that he had moved on to long-distance dating me, I didn't waste much time on useless sympathy. I attempted to treat her in a cordial and friendly manner, but when she declared that her life was meaningless and included key phrases about being home alone and having available methods to harm herself, you bet your life I did what any trained peer counselor would do: despite being states away, I called her local police to respond to her potential suicide attempt.
So when a local healthcare provider who has never treated me left one practice to start another, and took the entire patient contact database from one site to the next, then used it in a reprehensible email spam campaign to recruit patients for experimental weight loss procedures, I was certainly annoyed by this rather unethical use of my patient data. I could've just deleted the spam, I suppose, but that's just not my style. I contacted the new office to determine how they got my data, and when I heard about how he took it from one practice to the next, even patients he'd never seen, I went ahead and contacted his former practice to make them aware of the extent of his data transfer and the nature in which he was employing it currently. They were shocked to hear of his activities and very glad to be made aware of it. But even if they hadn't been interested in the breach, my proverbial horns were sharp and ready to address the offending party myself if needed.
If you don't want to dance with the bull, don't wear red to the arena.
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