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:

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:

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?

One More Time.

It’s been quite a year.

Stood in front of the armoured War Elephant in the Royal Armouries in Leeds at our wedding.

In the middle of January, mere weeks after getting married, my husband & I began the search for a new home. Our current apartment was falling into disrepair at an alarming rate thanks to a disinterested landlord & unhelpful letting agent. It was almost impossible to keep warm, & we were both heartily sick of sticking our hands down the back of the toilet to reset the cistern after every flush. Almost immediately on our search we found a block of smart-looking apartments on the edge of the city centre, nestled behind the shops & arena. We booked to view an apartment which was cancelled at the last second, so booked to view another similar apartment, & despite making an appointment to pay the deposit were told that someone had snapped that one up at the last second too. Although it didn’t feel like it at the time, this was a good thing.

I viewed the third apartment alone as I had more lenient annual leave arrangements than Jarred. The letting agent surprised me with the higher rent, but once inside the apartment it was clear why. It was more spacious, easily able to accommodate the wheelchair in all rooms, & had large windows overlooking the little garden outside. Of course, the office of the letting agent was inaccessible, so much to their displeasure we were forced to do the paperwork in the apartment block’s reception. The agent bumped up the rent even more much to my displeasure, & repeatedly reminded me how much easier it would be if this could be done in the office. There were queries over their guarantor policy & my ID, & the agent added an extra month’s rent to the tenancy agreement, but eventually after a stressful couple of days, it was all finalised.

Now that we knew we would have a home once our current tenancy arrangement ended, we could move onto more pleasant things; arranging the honeymoon. We planned a week in London around a wrestling show, of all things; after all, Jarred did propose at such a show. At the start of March we hopped on a coach down to London, staying in a hotel near King’s Cross in the north of the city, & enjoying a range of activities including the London Eye & a matinee show of Phantom of the Opera (Part 1 & Part 2).

All too soon we were travelling North again, & a couple of days & several loads of washing later, I returned to work. I was approaching six months in my job by this point, & my probationary period was up for review. I was disheartened to learn that my probation would be extended for a further three months, although my line manager was as kind & supportive as ever. However, it did seem that my difficulties in the job mainly stemmed from the fact that it was a step above entry-level, & I essentially had to learn everything the entry-level role should have taught me, & then learn my actual role on top of that.

After the Easter break came a succession of birthdays; a close friend, my dad, my father-in-law, my brother-in-law, & then me. A couple of those birthdays were milestone one’s, although I think if I disclosed which milestones I would be disowned, & so my brother-in-law came up on a bank holiday weekend to stay with us. I had booked the rest of the week off work, & I spent most of that playing my birthday present; the much-underrated Rage 2.

In amongst all of the birthdays was a trip to the gynaecology department at the local hospital (yay?). I wrote about that saga rather recently (Part 1, Part 2, & Part 3) so won’t go into the details here, but I was pleasantly surprised at how well that appointment went. It was after that appointment that my journey towards getting an answer about my gynaecological issues truly began.

June was a stressful month as we prepared to move house, & I also undertook a trip across the Pennines to Manchester, for an ironically inaccessible conference on disability. The end result was essentially having to pack the entire apartment on my own in a weekend, which also turned out to be one of the hottest weekends of the summer. To make matters more awkward, our landlord was not too happy that I had disclosed the extremely long list of broken things to the letting agents they were working with, & kept trying to charge us for things that had been in a sorry state long before we moved in two years before, but after obtaining some legal advice they were forced to back down. Still, July 1st, the day we got the keys for our new apartment, could not come fast enough.

The day we moved was bright & sunny, filling the apartment with natural light as we unpacked the essentials. Both of us had booked the week off work, & with the help of my bridesmaid & her partner, we were settled within that week. We were all pleasantly surprised at just how smoothly everything had gone!

Looking up at our new home; a red-brick building styled to look like a large house, nestled behind some trees.

The day we moved house was also the day I passed my probation at work, earning my place working alongside a characterful team of like-minded individuals. I’m not sure I had ever felt so positive & confident before; I had a gorgeous home I could be proud of, a brilliant job I could be proud of, & a gorgeous husband I could be proud of (for the most part, anyway). For about six weeks I was rolling on cloud number nine, even going so far as getting a new tattoo, & then I had to return to the hospital.

The black & white skull & rose, with 5 red ladybirds crawling over it, on my right shoulder.

This appointment was harder. The temporary treatment I had been on had already worn off, & I had to work hard to convince the doctor that the best way forward for me at this point was diagnostic surgery. Fortunately, the man saw reason once I had explained the situation, & I was told to expect a letter in the post. Sure enough, a few days later I had confirmation; on 24th September I would undergo a diagnostic laparoscopy.

I’m lucky to have an understanding & considerate employer, who allowed me to take the necessary time off work for the surgery & recovery without needing to use any of my annual leave. As the date got closer I got increasingly more nervous, not necessarily because of what they would find, but what they wouldn’t. Above all else I needed the validation that my symptoms were not all in my head, as had been suggested countless times before.

Sat up in my hospital bed post-surgery, with a disconnected drip still stuck in my hand.

Unsurprisingly the surgery did find something, that something being the endometriosis I had been telling doctors I had for years. The next two weeks post-operation were miserable. I was predominantly alone & housebound, in a lot of pain & still without treatment despite now having a diagnosis. My stitches, which as it transpired had been applied incorrectly, became infected. Then my GP was less than helpful, but fortunately I had managed to wrangle a telephone appointment with the gynaecologist for the end of November.

In mid-October I returned to work, now having been employed there for over a year. Given the large pile of paperwork waiting for me, & the even larger bouquet of flowers, it would appear I had been missed. It took a couple of weeks, but by the start of November, the majority of the backlog of work had been cleared. My line manager also had a new daughter.

A large bouquet of pink, white & purple flowers, of many varieties.

As our first wedding anniversary approached, Jarred & I decided to book a mini-break in York for late November. York is always spectacular as Christmas approaches, & considering the nature of the historical buildings littered throughout the city centre, is surprisingly accessible. You can read about my trip here: Part 1 & Part 2.

Upon my return to Leeds I had my telephone appointment with the gynaecologist. Fortunately, he was significantly more supportive than my GP, & proposed that I go back on the only treatment that had proved effective without miserable side effects in the past. Unfortunately, that did involve being injected in the stomach every few months, but it meant relief for the foreseeable future.

Now we have Christmas in our new apartment to look forward to, although of course when this is published, both Christmas & our first wedding anniversary will have passed us by.

As for the coming year, we know we have a home for well into 2021, so can relax on that front. My career in medical research could take several paths, & I look forward to finding where I end up. I don’t tend to plan as something will always come along to scupper plans; plans cannot be scuppered if they do not exist. I know I say this almost every year, but to have a less eventful year would be a pleasant relief; we will just have to wait & see.