Birthday Jubilation

Tomorrow will be my birthday.

I don’t write my birthday down on the calendar anymore. I put other people’s birthdays down on the calendar without hesitation. I even schedule reminders on my phone’s calendar, and it politely counts down the last 7 days until the celebration. Somehow, I can’t do the same with mine.

It’s not because I’m dreading growing another year older. It’s not because I think it will be a depressing day, full of regrets that I’ve lived so many years but have yet to fulfill my 4 year old self’s dream of climbing Mt. Kilimanjaro, or some such goal. It’s not because I think that birthdays are overblown affairs. Actually, I enjoy and celebrate birthdays with a zeal that borders on the absurd.

I don’t put my birthday on any of my calendars because some bit of me is afraid that if I put it down, I’m expecting it to happen. Somehow, it feels like if I do grab my sharpie and just scrawl it down on the blank white square I, who don’t believe in jinxes, will somehow jinx it. If it is another event on my phone then maybe, like any other event, it could get canceled. I don’t want to count on getting another year older, because in the topsy-turvy world of illness that I live in, getting another year older is far from guaranteed. Because I don’t know if my birthday really will happen, I don’t put it down.

Life is not guaranteed. The next day might not happen for any of us. It’s not quite like the sunny commercials with the song “Tomorrow” from Annie playing. I love tomorrow.  It just that, unlike Annie, I don’t always feel “it’s only a day away.” Somehow my friends seem to traipse through their days, knowing that life could end quickly but seemingly only rarely feeling the gut punch of it. But even though I walk the same halls that they do, go to the same library and grocery store, and watch the same television commercials, that’s not my life. You see, I have chronic and largely invisible illnesses.

Most of what I have isn’t the sort of thing that kills you, at least not directly. I have POTS – postural orthostatic tachycardia syndrome. My body doesn’t automatically adjust for the change from lying down to sitting to standing. There’s good days and then there are floor days. Will it kill me? Not directly, not unless I happen to pass out somewhere dangerous.  I also have chronic pain conditions, and while fibromylagia and/or myofascial pain syndrome and neuralgia won’t kill you, they occasionally made me wish for it. Like many chronically ill patients, I’m still waiting and fighting for other diagnoses that might be years in coming — answers to questions about an undifferentiated autoimmune condition and random bouts of anaphylaxis. Both of those have the potential to kill me, either slowly or quickly. Even if we don’t have the diagnosis down yet on paper, it’s serious enough so that my doctors have already started treatment.

My doctors are not good about talking about the emotional impact of these conditions. Once or twice, immediately after I was diagnosed with one condition or another, I was handed sheaves of paper as I blundered out the door. Somewhere on the back of the generic printout would be a similarly generic, bland paragraph about support groups and depression.

No one told me that I would find myself staring at an unmarked day on the calendar and wondering what was wrong with me. Why couldn’t I just mark it off in the cheerful, sunshiny color I used for every other fun event, and move on?

Eventually, I did move on. I just put the pen down, walked off, and began the next thing. I proceeded to live my life, my new and strange life with chronic illness. It is not the Annie living that I do, where everything is only a day away. There’s usually plenty of everything in the current day, and I try to make it be good, too. I don’t use the YOLO philosophy anymore either, which often seems to be the excuse for doing things like having a pizza-eating contest or doing parkour on the third story of a building (I will neither confirm nor deny my past participation in such actions.) Instead I try to live knowing that even if I don’t know if I’ll be alive tomorrow, there’s no way I know right now that I won’t. I want to live life beautifully, honorably, uprightly. I want to live passionately and fully. I want to live so that my legacy is good, not bad.

I still can’t bring myself to mark the day on the calendar. Obviously, though, I know when it is. I recite the date every few days to someone in the medical profession, after all. I’m looking forward to spending the day with friends and family, whether that’s in person or virtually. I just want to live every day like it’s a celebration and appreciation of life, in some small way now.

Tomorrow is a blank day, full of the possibility for everything. Everything. Anything.

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Traveling with POTS, VI

Travel buddies are the best.

When I was a teen, I couldn’t wait to take a few solo trips. In college and the first few years of graduate school, I did just that. There was something thrilling about setting off by oneself into the great world and successfully conquering one small bit of it. (Even though in my case it was usually more luck than skill that saw me through my (mis)adventures!).

To be honest, though, the joy of traveling by myself had started to wane just a little bit even before I got sick. Taking pictures was a way to share my experiences with others without having anyone physically present, but it was initially a sort of substitute for real human company. Then I feel in love with photography in earnest, and I also became much more ill. As I really began to struggle, a travel buddy was the ticket to successful travel… not my boarding pass, which I lost once. When you’re lost in brain fog, a travel buddy can help point you towards the right sex bathroom; when you’re too weak to lift a case, a travel buddy can help lug it over (or convince someone else to do the lugging for both of you!). A travel buddy can remind me about medications, shout at rude people, drive a rental car, and make sure no one accidentally puts something I’m allergic to in my water or meal while I’m in the loo. In return, I’m an endless source of bumbling amusement most especially, but I try to have their back as well. And the tab, whenever possible, I’ll admit.

The funny thing is, even with my changing perspective on solo travel, if POTS hadn’t slammed into me I might not have learned to not only tolerate, but to even enjoy someone else’s company on trips. Wrecking ball style, it shattered my illusions about the safety of solo hiking, and brought in instead an appreciation for fellow travelers and their journeys that I had never even considered. Even when I am well enough to go driving around a city and spend a day on the town by myself, I find myself checking over my shoulder not because of danger of being alone, but because more often than not I want to look back and share this experience with someone.

Travel buddies. Hard to find, but worth the investment.

 

 

Traveling with POTS, V

Two words. Checked bags.

Except for medications and whatnot, of course. Which, let’s face it, probably fill your carry-on and/or personal item anyway. Spring for a snazzy carry-on to make the fact that you’re carrying enough medications for an old folk’s home more palatable, and consign the heavy stuff to the tender loving care of the airline.

 

Traveling with POTS, IV

My luggage is also full of compression wear. I packed a lot, and I used almost all of it. I thought about not bringing much… but then I remembered that I probably wouldn’t want to spend time and energy on vacation hand washing hose every night. Thankfully even compression athletic leggings don’t take up much space or weight in luggage.

Even if I don’t need thigh-high squeezers at home, when I’m traveling the stress and additional demands of travel mean that I sometimes really have to just flail about putting the things on and lump it (literally, because on a bad flare day the pressure might bring about a rash). But it’s worth it. The difference in between watching a movie or counting the soggy popcorn kernels on the floor of the theater is a pair of boa-constrictor tight hose in a stylish (*not*) nude.

Chair with Wheels

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This trip marked a first for me. Amazingly enough, I’d never used a wheelchair except in hospitals and doctor’s offices. I knew I needed to try to use my body as much as possible. “Use it or lose it!”: that was my mantra. The truth is that I probably missed out on some evenings out or trips to places like museums or zoos, just because I was simply too tired and couldn’t stand that long.

But at the end of my last trip, I flared. A few days before I  was supposed to fly home, I lost my own private battle to stand rather abruptly, not even making it all the way through the simple hymn I was supposed to be singing. To complicate matters further, the day after I made it back home I’d be undergoing a procedure. I needed rest. I needed help. I needed to not stand for hours in check-in lines, security lines, and boarding lines. I needed a wheelchair.

Of course, I couldn’t just go and request one, pushing aside years of denial in one casual click of the mouse, o so easily. No. I researched involuntarily denied boarding online. I sought advice from that bastion of support, Facebook. People in a dedicated POTS group instantly responded. If it would help, go for it! That’s what it was there for. The wheelchair assistants were paid. No, I wasn’t taking it from someone else, and it wasn’t just cutting in line. If I thought I would have issues, a wheelchair was a perfectly logical, very practical thing to do. I stared at the screen. Then I decided I needed another opinion… so I tracked down my younger sister.

“It’s just a chair with wheels!” she snorted, rolling her eyes. “Just do it already!” Then, problem dismissed, she tossed her hair back and settled down to do some real work.

Hmm.

Ok.

After another hour of pointless agonizing, I finally went through the online check-in process and requested assistance going through the airport. My sister stood behind me, providing emotional support and no doubt inwardly rejoicing that she wasn’t going to be a withered bent shell of a human being due to carrying her stubborn sister through a terminal. All it took was a few clicks of the mouse on an easy website, and it was done.

There rest of the process was equally simple — and amazingly, almost everyone reacted like my sister had the first time I asked her about getting a wheelchair through the airport. We went to the front desk of the airline and checked our bags (ok, I sat off on one side while my sister waited in line. Have I mentioned she’s rather awesome?). The harried man behind the counter very kindly confirmed my reservation and directed us to some seats off to the side. A perky woman checked our boarding passes and brought a wheelchair over in a few short minutes (or rather a transport chair, lacking any way for me to control it). My sister and I spent another few minutes behind a baggage area before another young woman came and took us all the way through security and to our gate, cheerfully and very patiently. We waited at our gate and I chatted with other passengers, not a one of whom seemed to care one whit that I was seated in a wheelchair instead of a normal seat. It was a discount airline and we were all in for a tight and uncomfortable trip no matter what; there was a strong sense of fellow-feeling and brotherhood as we contemplated hours in vinyl jumpseats. There was a longer wait to actually get on the plane, but half-way through the boarding process someone else materialized and propelled me down the ramp.

I napped for most of the flight, curled into my vinyl square like a cat. There are some advantages to being vertically challenged. 🙂 After that rest, I felt like I didn’t really need the wheelchair for the trip off the plane. There isn’t nearly as much standing involved in the deplaning process, and it is extended periods of standing that tax my system. But in the end, I was glad that I simply got back in the seat. Another nice man took us at warp speed through hall after hall…after hall… after hall…. the terminals were strung together and endless. When we arrived at baggage claim, of course our baggage hadn’t — it’s a quirky constant of air travel. If you are on time, your bags are late. The wait for your bags is directly related to how few delays you experienced in flight. Got through TSA fast? Take a number and wait 20 minutes in line at the baggage clerk’s desk, sucker! But the longer you are delayed, the faster your bags beat you to your destination. It once took me 29 hours to fly from the Central Coast of California to Denver. My bags beat me by two days.

I had been worried that I would be judged, the young woman in the wheelchair. How could she need this? I impulsively told everyone what was wrong: “I have POTS. Postural Orthostatic Tachycardia. The part of your body that automatically controls things like heart rate and blood pressure? That’s broken on me.” I told people who didn’t even want to hear it. I was babbling and knew it and just couldn’t stop. It didn’t matter one way or the other, though, and finally I began to relax a tad. Gradually I got accustomed to watching people from my new position. I didn’t seem to be any more or less visible than I was normally, which is not very; people’s eyes frequently slide past me. If they did it now for a different reason instead of the normal lack of perception, I couldn’t tell. There were a lot of butts. It wasn’t always terribly comfortable having someone else push me, because with a transport chair there wasn’t any easy way for me to move myself if I was in the way. I had to crane my neck around to look at the person propelling me, and it felt so impolite to talk to someone without looking at them, but even more impolite to simply sit there without any sort of lubricating conversation.  I got a sort of childish glee from the few things I could do, like pushing the elevator buttons. “I got it!” I’d squeal from the chair, face to face with the ranks of glowing circles. I hadn’t been that pleased with my ability to punch the button for the ground floor since I was four. Ah, well.

For a first experience, it was incredibly positive. I was treated with courtesy everywhere and kindness at almost every turn by the staff. My fellow travelers, amazingly, treated me like any other travel-weary, sweaty, and frustrated journeyer on the bumpy sky lanes. I have to thank Frontier Airlines and their excellent personnel for helping me. It was an emotional step to take, but now that’s it’s been done my worry over using a wheelchair seems nearly as childish as my excitement for pushing elevator buttons. I don’t know whether or not overcoming this reluctance will open up a whole new world of evening operas and museum day trips yet. But I do feel that big events seem far more doable than they have in the past… and I now know that my local zoo rents chairs with wheels. 🙂

 

6/15

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I got diagnosed with POTS/VVS in November of 2016. They are only two of any number of dysautonomic conditions. I had been seriously ill since August of that year, and sick for about two years before that. Being diagnosed was so important for me. I had known for a long time that something was wrong, very seriously wrong, but it had been hard to convince doctors of that. Like many dysautonomia patients, I sometimes physically looked fine. I was told by more than one doctor that my odd constellation of symptoms was probably nothing and that I should go see one of the campus trainee psychologists. I doubted myself. But no mental change brought about a physical cure. Instead, I got kept getting sicker and sicker. Finally, bouts of fainting landed me in the ER. I was so ill I couldn’t drink water unless I was on anti-nausea meds, and I had no sense of balance – the world shifted around me like the deck of a ship in high seas. That got me a referral to a neurologist, and she discovered a vitamin b12 deficiency and POTS. A cardiologist later added VVS.

I was lucky.

The average time to diagnose dysautonomic conditions is six years. Six years of struggling without answers, six years of doctor’s appointments, medical tests, and therapy. Six years of doubting your own mind, and body. SIX YEARS.

The Dysautonomia Project is trying to change that.Their goal? Reducing the length of time for a diagnosis from 6 years to 15 minutes – the average length of a GP doctor’s appointment. Patients need information so they can advocate for themselves. The general public needs to recognize that this is in fact an illness, and sometimes a very serious one at that – the average rate of disability for those with dysautonomias is comparable to that of congestive heart failure and COPD. Perhaps most importantly, physicians need to be educated about these conditions. This won’t happen without a lot more awareness. If you have a moment, please visit the Dysautonomia Project or Dysautonomia International for more information and to help spread awareness about these conditions.

https://thedysautonomiaproject.org/

https://thedysautonomiaproject.org/project/615-is-the-self-proclaimed-dysautonomia-day-as-it-typically-takes-6-years-to-diagnosis-but-with-proper-training-that-time-could-be-reduced-to-as-little-as-15-minutes/

http://www.dysautonomiainternational.org/

 

 

 

Manners and Illness

Manners and illness seldom glide gracefully along together. It didn’t strike me then. Not while I was on my hands and knees, trembling, inches above the shredded bark filler of the landscaping in a parking lot outside of a hospital. I’d just had a test, and I wasn’t reacting well to the three days without anti-nausea meds required for it. I’d just lost my third attempt to drink water. I was desperate.

So was my driver, who was standing nearby, but for different reasons.

A truck, I think – something large, not an ambulance – pulled up next to us. “Is she all right?” the driver asked. And my driver – the person I was trusting to call it if I was in too bad of shape to call 911 myself, to take me into the ER, to do something – that person said, in tones of great embarrassment, “she’s fine!”

I was anything but fine. Hours later, I shivered in my bed at home, unable to get warm. The sides of my back hurt. I could barely keep my eyes open. My lips were swollen and cracked, and I could barely manage to swallow. It was hell. But I’d finally managed to keep an antinausea pill down long enough to do some good, and my driver – whom I later learned hated doctor’s offices, hospitals, or anything medical for that matter – was the one who was responsible for forcing fluids down me for hours on end until I was fine.

I survived. I also learned how to do unpleasant, but extremely effective, non-hospital interventions for bad dehydration. Something kept niggling at me, though, over the next several months as I apologized for, well, almost everything. I witnessed the discomfort of those who surrounded me when I was sick, and I realized that we are conditioned to expect certain, largely unspoken but fairly rigid, societal rules of etiquette to be followed. There’s a lot of regional varieties to manners, like apples but without the pleasure of still being acceptable once you’ve made sauce of them. Here’s a few from where I live now:

  1. Never chew with your mouth open. …Except when you can barely breathe and are simply grateful to be eating on your own!
  2. Always try some of every food …Except when you have food allergies.
  3. Clean your plate…Except when GI problems strike and you can’t possibly eat a large amount of any food, let alone whatever mystery meat ended up on your plate.
  4. Sit up straight, legs crossed at the ankle (for women)…Except when muscle and joint pain and broken bones interfere, or when falling blood pressure drives your body to automatically curl into a ball, clinging to consciousness even when it’s a misery.
  5. Let older people sit down first …Except when you’re unfortunate enough to be younger and have an invisible illness that means you will be unable to stand.
  6. Don’t take the elevators – take the stairs, it’s better for the environment…Except when you can’t handle stairs, even if this means taking the elevator at the gym down the one story to the basement pool.  
  7. You are always “fine,” when asked, and you always smile.…Not even going to touch this one.
  8. No being sick in public…Except when… no, don’t even think about being sick, mate. Ever.
  9. Don’t make a scene or be dramatic…Except when you have sensory processing disorders, or are absolutely feeling wretched after having received your fifth diagnosis of the week.
  10. Don’t cancel at the last minute, or be late …Except for when you are chronically ill, in which case you will be doing a lot of last-minute cancellations and strolling into places just a little bit behind schedule.

There’s a lot of rules. Even subtle violations of them cause a cascade of immediate reactions. I often get odd looks as I wait to take an elevator, and those odd looks can turn to glares if I’m not showing the appropriate level of respect for someone older than I by giving up a seat, opening a door, or lending a helping hand with groceries. Rarely, I get rude comments, although unfeeling but offensively-intended remarks are far more common. These are the typical “you’re so skinny, you need to put meat on those bones! Don’t diet! You are too young to be taking that many medications! Well, you have a great personality and are more than your body” statements; they miss the medical reasons or self-respect I might have for myself and are embarrassing but not immediately harmful.  It is rare that the embarrassment of my being ill actually leads to real physical danger.

Yet it happens. Someone sick is dismissed as being a “lazy entitled millennial” instead of a chronically ill young human being – and while generationalism is a subject for another post, the rationale is that it is simply bad manners, not a real ailment. A woman is more likely to wait longer than a man for pain relief in an ER – gender differences at play? They cry more, after all; maybe they’re just badly behaved. These things all lead to potential health crises because the underlying societal rules, what even ER doctors and nurses have grown up being subtly instructed in, dictate that when these rules of manners are broken it’s not because something is truly wrong, but because someone is simply out-of-line.

That day, my driver’s instinctual, embarrassed following of the rules of manners nearly had disastrous consequences. But being chronically ill, especially (relatively) invisibly, means that society’s “rules” are going to be broken. For me to accept that I’m not being rude by being ill means recognizing that those “rules” are only guidelines, and that in cases of an emergency these sort of niceties are meant to be broken. In an air emergency, the plane that’s blasting “Mayday!” gets to land first; on the road, ambulances even get to drive on the wrong side! Unfortunately being invisibly ill means that many times those around you aren’t going know that the reason you’re sitting curled in a chair is to battle low blood pressure, or that you’re wearing thin clothes in winter not to be flirty but because your autonomic system doesn’t regulate temperature and you’re burning up. Without the glaring lights of an ambulance as a social cue, no one but me knows just what “emergency” my body is experiencing at that moment.

I’m gradually learning not to apologize, but to gently explain when my breaches of etiquette are caused by my condition. Many understand, learn, and let it go; they’re all right with me sitting while others stand, or enjoying water while they eat food. For some people, being around someone who is that “badly-mannered” is too embarrassing. I’m learning to let them go. For others, adaptations are necessary. If it is too awkward for social eaters to be around me when I can’t eat what they’re having, I find a way to gracefully bow out. The stress of me not eating is psychologically far greater for them than it is for me, but with my food allergies, downing what is available could be life-threatening. I might not have my driver from dehydration day take me to tests again; not only will her phobias make it a horrendous experience for her, but her fall-back to manners and her intense fear could put my life at risk.

It’s not that these people can’t be my friends – it’s that the same accommodations I must make for my own body’s quirks might have to be extended to theirs, too. The Golden Rule of manners is, I suppose, the only one that still applies. Do unto others….and extend compassion.

 

Confessions of a (chronically ill) graduate student

A chronically ill graduate student’s dilemma: protect my spot at the microfilm reader and continue to enjoy accidentally unspooling the reels, or go pick up medicine at the pharmacy and risk losing the machine to some other desperate graduate student in search of an idle 8 hours of frustration??

Hmm.

Decisions, decisions.

Parental Grief

There are so many different ways that chronic illness affects our lives. Once, a long time ago, I lived next to a peat bog. It caught fire one summer. Quickly, the raging flames on the surface sunk down through the layers of peat, burning and smoldering for nearly a year. The area was devastated, the smell was terrible, and the mixture of smoke and fog — eventually dubbed by the locals as “bog smog” — created extraordinarily low visibility conditions. Sometimes the hood of your own car would be barely visible, the one time the exaggeration about the thickness of the local sea fog was the factual truth. Many people died on the roads that year.

Chronic illness is smoldering inside of me. It has been for awhile now. It can flare again, and like the firefighters in that town, all I can really do is contain, and watch, and wait. I’ve had to work hard to accept and adapt to being a peat bog … not that, if you asked anyone who knew how clean I keep my bedroom, it should have been that big of a jump.

Perhaps worse than my new status as peat bog fire, though, has been the impact on my nearest and dearest. Sometimes in the heat of the battle it’s easy to forget about the effects that battle has on others. But at other times — like now, working on planning a family vacation — it is painfully obvious the damage the fire has wrought. Even though I’m a graduate student and have long since left the nest – my old room is now a considerably neater guest bedroom – I still enjoy a close relationship with my family. Watching the devastation caused by the pervasive, smelly smog of my chronic illness has been heartrending and frustrating.

I have to live with my status as a student-with-disabilities every day. But I’m several hundred miles from my nearest family member, a couple thousand plus change from my parents. Their interaction with my conditions is limited by distance, which both shelters and hinders them. Instead of seeing all the good and the bad together, they typically get brief, painful news bites at the end of the day or week … trialing this drug or that, developing a new allergy, sick with another infection. If my parents come out to help me through a surgery (which they’ve done, bless them), then they see me at my worst. When I’m back home on vacation, after carefully trying to make sure I’m at peak functionality, with everything work-related cleaned off my plate and nothing to do except relax, it can sometimes seem like I’m doing quite well. That is until, of course, some plan is proposed that I simply cannot do, and my parents are faced with the reality of my conditions again. Slam, the fog descends, leaving everyone blindly feeling their way through the dankness.

Pervasively, slowly, my conditions began to change our family dynamic. I had to come to terms with my illnesses fairly quickly, as it’s my daily life, although in many ways I’m still learning to cope. Insulated by distance and love, my parents are experiencing this journey to peace more slowly. It resembles nothing more than the grieving process. Even though I am not dead, there has still been a loss: the loss of health for a dear daughter. There are stages to the grieving process, modern psychology tells us: denial, anger, bargaining, depression, and acceptance. It’s less of a smooth train ride with planned stops than a spinning, jouncy carnival ride.

Denial and anger go hand in hand, smoke to fire. Tendrils of disbelief rise smudgily to the sky – “no, this can’t be. You’re just too sensitive, is all. It’s not possible.” But if there is no belief that something has happened, there is no chance for healing. And I am simply sick. Bright anger flames spring up. “That doctor is a @*&%!!!!” “You should never have done that, that was stupid!” “The insurance industry is such a … !” Anger flares fast at anything in its path: at doctors, at a condition, at the treatment path that I chose. Anger is not always a particularly rational force. It redirects pain but doesn’t always process it. From my own battles with accepting my illnesses, battles I still fight, I know that anger is bizarrely comforting in its own way… it devours so fully there isn’t room left for anything else. Perhaps that’s why it flames so readily to life.

Bargaining results in odd little promises, both to themselves and to me. “Oh, you’ll be better by then,” is something that slips out, hopefully, frequently. Far more rarely comes a more brazen “well, maybe this (insert situation or gift) will motivate you to get better!” Less concrete, but no less attempts at bargaining, are phrases that start with “if only,” or “maybe if I/you just” – a bargain with the past or the future. I bargain with myself all the time, as a sometimes outwardly-motivated person: “if I just get through this PT session, I will eat a popsicle as a reward!” At least bargaining shows that there is some acceptance that there is something, or some reason, to bargain.

Depression is bog smog at its thickest. It can be an odd blend of both the practical and the emotional. Physically, isolation is a serious consequence. Staying with me when I’m sick can be an incredibly isolating experience.The bog smog cut off our small town from the outside world, and in a similar fashion depression can isolate one emotionally. However, no less isolating is being “that family with the sick kid,” because it is completely possible to feel separate from the world even in crowded places. The cost of illness in dollars and cents can cause feelings of despondency with terrible regularity, every time the mail is delivered and another bill appears in the stack, the crisp white envelopes always belying the yawning black hole of hopelessness that opens with its flap. Dire situations prompt a lot of wondering if there will ever be anything different, if there is ever going to be a way to get out of this. There is a lot of sadness and regret for not trying different approaches or doing more things when I could, even though they couldn’t have known the future. There is a sense of loss for what might have been: pretty sparkly dreams that they and their daughter held dear, the things that they fought so hard to enable her to do, might now be out of reach.

Acceptance seems to only come in fits and starts. It’s doubly difficult because I continue to get new diagnoses and develop symptoms, only to combat them and rise again. It isn’t a fixed situation, this slow burn of chronic illness. Control and containment are occasionally shown to be nothing more than illusions. It can be dangerous, dynamic, and incredibly unpredictable. I don’t know if I’m going to be able to go with them on a day’s excursion, or if I’m going to simply need to sit and rest. The changes mean that just when they have managed to “accept” that I might walk slower, suddenly there comes a day when I struggle to walk at all. A food I can eat one day suddenly causes an allergic reaction the next. Accepting that your child is ill, and that the “old” child is no longer — illness took something away from you, and never gave it back — has to be one of the hardest things to face. And although I am 30, not 3, I am no less my parents’ child.

It took a long time for the peat bog fire to burn out. Over the next decade, the bog regrew. Sometimes it would look the same for months, waiting for the next season of change. But then overnight, with a decent rain and the right conditions, it would suddenly seem neon with bright new growth, electric life. Now trees grow there, and all the animals, including several threatened and endangered species, are back. It takes time to heal. It takes space. It takes a certain kind of resiliency to weather the fire and then come back, and that my parents try at all is a sign of their fortitude. I am proud of them.

To parents, I want you to know that it is all right to grieve. It isn’t shameful. It isn’t wrong. Don’t be afraid to grieve. For those with sickness watching their parents grieve – hang in there. It might not always seem fair, and it might be painful to experience. But they have to change too, even as you are. Grief is a season, though, and it will pass, like any other season. Eventually the burn scars of the bog are just a testament to the strength of the system, a proof of things endured and conquered. So may it be with grief.

 

Fly high. Stay strong.

Titanium Butterfly