Tag: Disabled

Know It All.

Every so often I encounter a doctor who was simply born for their role; knowledgeable, competent, & with an excellent bedside manner. Admittedly I see that many doctors that at some point it was bound to happen. Anyway, during a recent appointment with such a doctor, he sighed, looked at me, & said;

“I get the feeling you’ve been told there’s nothing we can do for you for most of your life, but again, there really isn’t anything to be done.”

I almost cried.

Not because there was nothing to be done about a particular symptom that, if I’m being honest, doesn’t reduce my quality of life by any significant margin. I almost cried because it was one of the first times a doctor hadn’t tried to soften the blow by pretending to offer some woefully ineffectual “treatment”, but had recognised that, unlike Tom Cruise, I could handle the truth.

I happen to live with multiple conditions that are nigh-on impossible to treat beyond symptom management, & even then the symptoms can only be lessened rather than eliminated altogether. As such, I’ve become very accustomed to hearing doctors desperately clutching at straws to make it seem like they could cure me, when the simple truth was that they couldn’t. I don’t know whether this behaviour stems from a certain arrogance that some doctors have, or whether it is something that is taught during medical school, but it is a rarity to hear a doctor admit that they don’t know.

The truth of the matter is that doctors simply couldn’t hold all of the information about all of the diseases in the world in their heads, even within specialised fields. Sometimes, they’re going to need to look something up, do some further background research, or consult with another professional, just like in any job. Unfortunately, many doctors refuse to admit when they need help, & so they will spin a good yarn instead.

Not knowing something in the vastly complex & ever-expanding field of medicine is not a failure. Admitting it is also not a failure. Giving a patient false hope, or just wasting their time, is. I would much rather not waste my limited energy chasing after an ineffective therapy, than to be told an inconvenient truth.

Of course, being told nothing can be done is still pretty disheartening. It would be nice if one day someone could tell me that something can be done & was also speaking the truth as they said it. I guess what I’m really saying is that I value honesty over pretending that everything is alright, even where my own health is concerned. Being a know-it-all doctor isn’t reassuring, & many chronic illness sufferers can see straight through the façade after a few months.

All of this being said, there is still something to be said for breaking the truth gently, particularly for those new to the delights of chronic illness. Breaking bad news to patients & their loved ones is an unenviable task. It probably wouldn’t be particularly useful to simply say;

“You’re sick as hell & I can’t fix it. Thank you, next.”

For example, the radiologist said “oh dear” as he did an ultrasound to find my gall bladder impersonating a maraca. This wasn’t particularly reassuring, but fortunately having studied gall bladder disease shortly beforehand, I already knew exactly what I was looking at.

However, the doctor who came to visit me on the ward afterwards perched on the end of the bed & explained to me what gall stones were, what the gall bladder’s function was, & how to kill it. It was something of a revision session for me, so I didn’t tell them that I knew what a laparoscopic cholecystectomy was until after having it explained, much to their amusement. However, the bad news that I would need emergency surgery (my gall bladder was extremely inflamed & potentially could have burst, which I think would look something like the chest-burster from Alien) was broken to me in a perfectly calm & composed manner.

In this situation the doctors knew what to do, which probably made it easier to break the bad news to me.  However, I do wish that when discussing incurable chronic illnesses, doctors wouldn’t dodge around the truth so much, but would tell it as it is in a straight-forward manner. Or maybe I’m just too Yorkshire for my own good.

A Game of Risk.

Very early on in my degree I was introduced to the concept of risk-benefit balance. For example, is using preservatives to reduce food waste worth the potential risk to health? Given that food spoilage & poisoning causes substantially more damage than the rigorously tested preservatives used on food, which have been shown countless times to have minimal, if any, impact on health, it is definitely worth the risk. Quite simply, if the benefit outweighs the risk substantially, it’s probably worth doing. If the risk equals or outweighs the benefit, it won’t be done. Of course, quite how you quantify risks & benefits is somewhat subjective, but there are standardised methods of getting an estimate.

This concept doesn’t just apply to food, but has applications in almost every field, including medicine. My work in clinical trials revolves almost entirely around this concept; we introduce new medicines & therapies to patients, monitor the risks, compare that with their efficacy, & this research is used to direct the future of healthcare. There is also an element of health economics, & the inception-style study of studies & their impact on healthcare, but it always comes down to the risks & benefits.

In people with reduced mobility, using the contraceptive pill could potentially result in deep vein thrombosis, where cholesterol hardened into a sort of scab dislodges from its original place, & becomes wedged in one of the larger blood vessels deep below the skin. It can cause all sorts of issues such as a cerebrovascular events (strokes), myocardial infarctions (heart attacks), or most commonly, pulmonary thrombosis (where the clot obstructs the passage of blood through the lungs, meaning oxygen cannot enter the bloodstream & carbon dioxide is not expelled). Cardiovascular disease is the leading cause of death in many western populations if not globally, so obviously it is something to take very seriously. That’s not even to mention the potential links to breast cancer, something which runs in my family.

I was using the contraceptive pill long before I started having sex; in fact, even once I was having sex it’s primary use was not as a contraceptive. I used it to try & control the irregularity, heaviness, & extreme pain menstruation has caused me since starting a decade ago. Nosebleeds, sickness, acne outbreaks, bloating, intestinal pains, constipation, & headaches plagued me with each period, as did ovulatory pains mid-cycle. At first I was told it was normal. Then it was because of puberty. Then it was because of my other chronic illnesses. Then it was because of painful spasming of the vaginal muscles. Then they finally decided they would quite literally stick a camera in my guts to see what was really wrong. At the time of writing I still don’t know how that goes, or what the outcome is. Hopefully I survive.

My point is, the contraceptive pill helped me manage all of those symptoms, until one day a doctor panicked about the risk of deep vein thrombosis & took it away. The alternatives offered I had previously tried & found to be ineffective, or I simply couldn’t manage such as the coil which is painful in healthy women, let alone this rolling bag of chronic illnesses. Eventually, I was left without an alternative, & I returned straight back to the misery I had been protected from since my early teens. On top of my other illnesses, I could barely stand upright without blacking out.

I fully appreciate the risks deep vein thrombosis present, but I am already sick & in pain. I cannot fathom why the chance that something bad might happen in the future outweighs the benefits I will definitely receive from accessing treatment now. You could argue that a heart attack is far more likely to kill me than what we suspect is endometriosis, but there are also things within my control that I can do to reduce the risk & damage inflicted by a heart attack, unlike whatever this is. I literally have a degree in nutrition & diet is a major contributor; I am trained to handle this exact situation.

The contraceptive pill is just one example of this ridiculous situation, where current symptoms are denied treatment in favour of trying to prevent a future possibility. I have no qualms about doctors informing me of the risks & wanting to avoid them if possible, but no risk can outweigh the benefit of certainty. Certainty that my current symptoms will be manageable. Certainty that I will be able to stand up without passing out. Certainty that I don’t have to spend my days curled up on the bathroom floor, with only a hot water bottle & paracetamol to combat the pains, which feel like someone has put a vice around my guts & is slowly tightening it. Certainty that my quality of life right now will give me a future, whatever that future looks like.

I am not ignoring the risks; I accept the risks. I understand. But surely it should be up to the discretion of the subject that, once all the information has been provided in an accessible way, I get to make up my own mind about how I live? I was happier living with the Sword of Damocles’ dangling over my head than I am feeling like it’s already stabbed me, & if they’re my only options, then I’ve made my choice.

An Unlikely Water-Skier: Yet Another Short Story.

Guest Post by Eric Tress, Public Relations Officer at Cerebral Palsy FAQ.

Stephanie sat brooding after yet another tantrum. Her mum was on the couch, the TV on silent, looking sad and in despair.

“I’m sorry, mum,” said Stephanie,” I don’t know why I get so angry.”

“Well, Steph,” her mom replied. “I know you can’t always help it, but there must be something we can do. A tantrum every other day is more than I can take. Are you sure nothing is bothering you? You are not usually this…difficult…”

Stephanie sat, thinking. She, too, could not fathom why she was so angry, but if she could pinpoint a start to the drama, it must be when she saw the neighbour’s kids at the beach water-skiing. Why couldn’t she do that? It looked like so much fun.

Since then, Stephanie had been dreaming and thinking about water-skiing. She read a lot of materials on Cerebral Palsy and learned that disability was not always a hindrance to participating in sports. She discovered some fantastic people with cerebral palsy doing amazing things. For one, there was Linda Mastandrea who not only excelled in sports such as basketball while in school, but also managed to win Olympic medals for racing in a wheelchair, and then went on to become a top-notch lawyer!

After that research, Stephanie felt like she was missing out. It seems like she could be doing much more even with Cerebral Palsy and knew she could even water-ski if she was given the chance. However, when she started thinking of the logistics, she got confused and frustrated, and probably that was where the tantrums and anger were coming from. Stephanie shared all of this with her mum.

“Wow, Steph, That sounds really fun! I love this thinking outside the box and challenging yourself, but don’t you think water-skiing is a bit too…radical? I mean, what about the risks?”  While Steph had her misgivings, when she heard her mum say that water-skiing was too risky, she made up her mind to do it at least once. At the very least, even if she failed at it, she would feel much better for trying.

“No, mum! It’s not too risky. I want to learn how to water-ski!”

“Water-skiing it is then…” said her mum while still looking sceptical. Stephanie grinned.

***

Stephanie was excited about her new challenge. She could see her mum and other members of the family were sceptical, but Steph was on a mission. Steph started by researching people with Cerebral Palsy doing various sports.

Amongst all her other research, when Steph read about Effie Corriveau and her water-skiing story, she was on cloud nine! Now she knew it was possible. Here was a woman just like her, with Cerebral Palsy, doing what she wanted. If Effie Corriveau could do it, so could she.

Through Effie’s story, Steph was also relieved to learn that there were programs and equipment to help people with disability water-ski. What a discovery; Steph was over the moon.

Steph shared the story of the Woman with Cerebral Palsy that could ski anyway with her family on social media & at the dinner table, and everyone seemed impressed. Steph could see the tide turning in her favour, and she hadn’t even gone out on the water yet!

***

Steph couldn’t wait to start water-skiing classes, and was up as early as possible on the day she would sign-up for classes. She could have spent the whole night thinking about it instead of sleeping, but she wanted to be strong and fresh to make a good impression of a capable student, so she made sure she had a good night’s rest.

Once they had had breakfast, and she got all the well-wishes from her extended family, Steph and her mum set off.

When they arrived at the water-ski centre, Steph’s excitement reached a new peak. She already felt that this was something she loved and wanted to learn. They found where the other amateurs were having their lessons, and when the ski instructor saw them, he came bounding over like an over-sized puppy.

“Hi,  I’m Todd, the water-ski instructor. Would you like to sign up for a class?” he said, looking at Steph’s mother. He was met with a steely stare from both ladies.

Todd looked bewildered as Steph’s mother answered.

“Hi! My name is Elsie, and this is Stephanie, my daughter. She wants to sign up for water-skiing lessons.”

Todd was dumbstruck. Steph and her mom could practically see the cogs turning in his mind as he wondered how to go about it. Just then, an older man walked towards them, and Todd excused himself to go talk to him.

“That must be the boss, Steph! Let’s see what he says,” Stephanie’s mum said to her daughter, who was trying not to be disheartened. After a few minutes, the older man, with a kind expression on his face came right up to Stephanie and greeted her personally.

“Hello young lady, I’m Mr. Carver. I hear you want to water-ski…”

Steph interrupted with an enthusiastic “Yes!”

“Well then, let’s get you signed up,”

He greeted Steph’s mom and ushered them into an office.

***

When they returned home, everyone in the family was amazed to hear that Steph had actually signed up for water-ski lessons. They were also interested to hear about the many programs available for disabled people to learn waterskiing and other sports in the area.

Steph had also learned that people with Cerebral Palsy had been participating in water-skiing competitions in world tournaments since 1999, and that gave her additional confidence in her decision. She found out there were many qualified ski instructors like Mr. Carver that would train disabled people, and she was just glad that he was available to teach her.

The next weekend, Stephanie turned up for her skiing lessons with her adaptive water-skiing equipment, which admittedly hadn’t come cheap. It was like a weird game of Tetris just to get everything in or on the car. Unloading was somewhat easier, as opening the car doors seemed to do most of the work. A short while & several inexplicable rubber ducks later, Steph was ready.

It was hard to believe that Steph had lived next to the beach all her life and never thought of signing up at the beach water sports centre. She remembered all the time she sat at the boardwalk and watched people water-ski, ride jet skis, and kiteboard.

“Why didn’t I feel the pull to water-ski then?” Steph wondered. The only answer she could come up with was that everything has its time.

***

The water sports centre had an indoor pool where Steph first practiced to water-ski. At first, it was tough for her to learn how to balance on the water, and she couldn’t believe she would ever be good at it, feeling disheartened.

It didn’t help that Mr. Carver insisted she trains with able-bodied kids who all appeared to have some experience, but then she would get some extra coaching afterwards.

“Teamwork is good for you, Steph. It’s going to help you learn faster,” Mr Carver said. Who was she to doubt? Besides, her fellow learners were encouraging & even giving advice once they had overcome their initial shock.

While she came back home with lots of bruises, Stephanie’s was high, & this feeling returned after each training session. She did it every weekend, but Steph wished she could do it every day. However, she knew she must pace herself to avoid getting sick, thus losing out on all the fun.

***

After weeks of learning the basics in the indoor pool, it was time to go into the ocean. Steph would never forget the unbelievable feeling when they rolled her down into the ocean water in her beach accessible wheelchair.

The waves were a bit intimidating, but once she got used to them, she felt like spending forever in the water. With the help of Mr. Carver and Todd, she got used floating in the water and feeling the waves wash over her without fear.

After a week, Todd and Mr. Carver strapped Steph into her sit – wakeboard and hooked it onto a speed boat. They then took her for test rides at slow speeds with two other employees of the water sports centre supporting her on either side of her board.

She thought they were treating her like a fragile egg and didn’t like it. But Mr. Carver said it was standard procedure when teaching disabled people to water-ski.

“It’s just until you get used to the waves and learn to balance Steph. You have to understand that ocean water is different than the pool, okay?”

“OK then, Mr. Carver, ” Steph said. She was prepared to follow the rules just to be allowed to water-ski in the ocean. Already she could feel the other learners treat her with a little bit more respect for venturing into the waves, and she liked it!

***

It took a couple of weeks to get her balance on the ocean water, but Steph finally started water-skiing without support. With each passing day, the speed & difficulty were increased marginally, and it was terrific. To feel the wind on her face and her body glide effortlessly over the water while on her sit -wakeboard was a dream come true.

Learning how to ski with able-bodied kids was great. They really supported her, but Steph could see they didn’t really think she could do any of the fun tricks they could. She wanted to prove them wrong. So, every time she had one-on-one sessions with Mr. Carver, Steph concentrated on learning how to do one awesome trick. She wanted to master the 360 degree turn, and was working hard to achieve it.

The use of her adaptive equipment made skiing safe and easy to learn for Stephanie. Usually, she used a sit-ski, outriggers for stability on the water, and arm slings to support her arms, but for the trick, she was learning to do, Mr. Carver had her use the sit-wakeboard.

Apart from the thrill water-skiing gave her, Steph could feel her body growing stronger. She also started doing some extra physical exercise at home with her mom to get fitter.

With time, Steph felt she was more in control of her skis. She had learned the rules, top of which was to relax, maintain her balance, and of course, to enjoy herself.

***

After a class one day, Mr Carver took her aside after class and gave her a brochure. It showed that there was a small tournament in the area for water-skiers, and they were accepting amateur disabled water-skiers to sign up. This seemed quite a specific category to Steph, but maybe there were more people like her than she had imagined. Some of her fellow learners were going to participate, and Mr Carver thought she would be interested too. Of course, Stephanie said yes. What was there to lose? Other than the competition, of course. Most important of all, what better place was there to show off her new trick?

When she got home, Stephanie excitedly told her mom about the competition.

“Are you sure, Steph? If you can’t do it, it could be very demoralizing”. Her mom said, only half listening as she tried to balance several loads of laundry while avoiding the rogue disability aids that littered their home.

“I don’t mind mom, I just want to give it a shot,” said Steph.

“Okay, honey, let’s do it!” mom said.

Steph was over the moon again, but a little anxious too. Could she actually do it?

***

After Mr. Carver put her name in for the competition, and they met all the requirements to enter, it left Steph with only three weeks to prepare. They were a pretty emotional three weeks. First, she was afraid, then she was petrified, but then the excitement would kick in again.

The day of the competition came, and everyone at home was on tenterhooks. She could see some doubt in the family’s eyes, but she felt supported none-the-less. Even her pals at the water-ski centre came to cheer her on if they weren’t already competing.

Watching the other able-bodied skiers at the competition do their amazing tricks, Stephanie wondered if she could do it. But when she saw other people with disabilities showing off their tricks, she was confident she could at least meet the basic standard.

Then she heard her name over the loudspeaker, mispronounced as ever.

“Up next, Stephanie Kowalski!”

Everyone was wishing her well as she made her way to the start of the course, but she could barely hear them over the sound of her heart was pounding in her ears.

Then she was out on the water, feeling the drag of the wind in her hair and the water under her wakeboard, and like a drunk at Christmas mass, she suddenly remembered why she was there. She loved this, she knew a great trick, and she was here to show it to her family and friends.

Off Stephanie went on her wakeboard, moving out to the middle of the water, preparing and then turning all the way round, executing her 360 just like Mr. Carver taught her. She could only hear the rush of the wind in her ear and not the applause she expected the crowd were making, as she concentrated on landing the move, but she felt fantastic! When she glided to a stop, she was surprised to hear silence.

“What happened?” she wondered, ” Did I mess up?”

Then after a silent moment, the crowd erupted (not literally), & there was thunderous applause. When Steph looked at her mum, scouring the crowd until she saw her face, she saw that her mum appeared to be crying and jumping up and down. So were her other family members.

“Steph, that was amazing!” Her mother screamed.

Steph looked at her pals from the ski centre, and they were applauding too.

Over the noise of the crowd she could hear the announcer say;

“Fantastic trick there from beginner, yes beginner, Stephanie Kowalski (with butchered pronunciation again), ladies and gentlemen! What a performance! Congratulations Stephanie!”

Right there, Steph knew that she wanted to do this for the rest of her life. Who knew what other tricks she could do? Her adventures were just beginning!

10 Year Challenge.

As we approached the end of the decade, the 10 Year Challenge began to circulate on social media. On all platforms people were sharing pictures of themselves from the start of 2010, & comparing them to current pictures of themselves. I was tempted to share a social media post showing my transformation, but as I started to put together the tweet, I realised it could easily be taken out of context. So, I decided to make a blog post instead.

The reason for my concern is this; 10 years ago, I wasn’t sick.

If I had posted that tweet, it wouldn’t have taken long for it to be turned into a pity-post, further contributing to the ableism disabled people face on social media & on the street. Worse still, the possibility of it becoming “inspiration porn” was not remote either. The truth of the matter is that the change that occurred over the past decade is a lot more complex than just becoming sick.

10 years ago, I looked like this:

Me & Dad outside Top Withins, the setting of the Bronte Novel Wuthering Heights.
Stood on Bronte Bridge in blue anorak & purple jeans.
Stood next to my mum near Bronte Bridge. We look extremely alike, even tilting our heads the same way!
Stood at the edge of the stepping stones to cross the river outside Bolton Abbey. It’s the 2010 world cup & I’m wearing an England t-shirt.

I picked these photos primarily because they show me in engaging in some very physical activities; crossing the river via stepping stones outside Bolton Abbey, & hiking up to Bronte Bridge & Top Withins, the setting for the classic book Wuthering Heights. Another factor was trying to find images where I didn’t look like a complete dork. I may have failed on that count.

Anyway, here’s what I look like now:

Lay in bed, face half obscured by pillows, in the midst of a relapse.
About to head out to pride 2019, decked out in rainbow everything, carrying a sign that reads “Couldn’t find an accessible closet so I’ll roll with it.”

The change is obvious; not only do I now have boobs, but I also have a wheelchair. Without full explanation, it would be all too easy to misinterpret the meaning of my post. If you’d shown me the current photos then, I would have freaked out big time.

When I first contracted meningitis, & then when I went on to develop M.E., it honestly felt like my life was falling apart. Nothing was certain anymore; my education, my friendships, my potential career, it was all gone or so I thought. Had you shown me the current photos then too, it could have only made things worse.

However, the physical transformation shaped & was eventually overshadowed by my personal transformation, & that is something no photograph can show. Adapting to life with a disability meant that I developed skills & emotional processing I could never have unlocked without it, which much like a vampire will never show up on camera. Posting those images straight to social media could not capture the most important part of the change.

My story is not meant to evoke pity, nor is it meant to be inspirational. What I want it to show is how adaptable even a naïve & inexperienced kid can be. Most people would have adapted to disability in much the same way I have, it’s just that never having become disabled they don’t know that. 10 years ago I would have said the same had someone asked me about how I would react to becoming disabled. While I want to show that seemingly impassable obstacles can be overcome, I also want to highlight that it’s still OK to feel frustrated by them too.

I don’t want to be pitied because of my transformation, although a little empathy would go a long way instead. I don’t want to be heralded as some kind of hero for surviving it either; we all have our own hardships to face, it’s just that mine aren’t as easily hidden as others (not that we should have to hide them at all). 10 years has changed an awful lot about me & my circumstances, but you’d be hard-pressed not to find someone who hadn’t undergone some significant changes in the space of a decade.

What I want to show is that the unexpected will come out of nowhere (I mean, otherwise it would be expected), & that all you can do is adapt. Survive. Overcome. This is what I did; no more, no less. Nor can I predict with much certainty what the coming decade will throw at me, but I’m not too worried about it either. I know I’m tougher than I look & I’m adaptable. Who knows what transformations lie ahead?