The Medicine Game

 Let me tell you about my boy, Jack...

Born in Syracuse, NY, in the heart of lacrosse territory, and in Onondaga County, which is named after a tribe of the Haudenosaunee Nation, he first picked up a lacrosse stick at the age of three. He never put it down again. 

Cursed with British parents who knew nothing about the Creator's Game, he has taught us all about the Spirit of lacrosse. Since he discovered it, he has lived, breathed, slept and eaten the game. Every spare moment, every ounce of energy, every flicker of attention has been devoted to it. Imagine how weird it is to show up at a holiday resort and have to ask the staff if there is a wall somewhere on site with no windows because he has to play wall ball every day; paying excess baggage on every flight for the lacrosse gear that goes with us everywhere; the family holidays that get planned around lacrosse tournaments, even when he is not playing in them; or, that the very first purchase we made when we moved back to England was a Bownet that we dragged to the park every day. Not to mention the hours of driving across London, and up the M6 to Manchester every weekend, just to get to a place where Jack could train with his peers. But we had promised him that when we moved back, leaving his beloved Resolute Lacrosse Club in Ohio behind us, we would find a way for him to play.

School was a challenge for him -- sitting still, in a classroom without a stick to hand, was a kind of hell. Eventually diagnosed with autism and ADHD, which were a key to his devotion to the sport, and his constant, unyielding desire to practice, but were also seen as a "challenge" by teachers, he eventually took matters into his own hands and simply refused to attend school anymore, or walked out when he had had enough, refusing to be boxed in by arbitrary rules that stifled and oppressed him. When one, small, supposedly "caring" school who had promised to support him, asked him to leave, with no notice, the head teacher said to me, "in a way it is good that he is autistic, because it means he won't miss having any friends around him." I was so flabbergasted I could not think of words to respond, although I have thought of many choice ones over the years since. Ultimately, though, I realised I did not want to send him to an institution that saw him that way.

Those were the dark years, when he gave up on himself, and, heartbreakingly, he gave up on his dream to play collegiate lacrosse because he had been taught that he was stupid, and could not do schoolwork. He was anxious and depressed, but he never stopped playing or practising lacrosse -- it was, and will always will be, as the Haudenosaunee say, his Medicine Game. It kept him sane, and, in some ways, I believe it kept him alive.

When I told him that I would never, ever make him go back to school again unless he wanted to go, I saw his spirit lift a little, and he looked at me with trust again. So I gave up my job and promised him that we would find a way together, although I had no idea what that would look like, and I was terrified of getting it wrong. From then on, his days, weeks, and years rotated around his lacrosse, and, very slowly, but surely, I saw him come alive again.

It took a while for him to start to believe in himself again, and even longer for him to believe that maybe, under the right circumstances, and with the right motivation, he was smart enough to do his schoolwork. As his spirit returned, his desire to play at the highest level was unleashed again, and he started to believe that not only could he do the schoolwork he needed to go to college, but he wanted to do it so that he could play lacrosse. We enrolled him in an online American High School programme from England and, fitting it in around his lacrosse training, gym workouts and daily, meditative wall ball drills, he finished high school with a 4.0 GPA in less than 2 years.

Meanwhile, he had been selected to an elite, selective club travel team, called the English Knights, where he found his English lacrosse brothers. Most of them went on to be selected to U19 National teams, including the England squad, which selected Jack when he was 15. But nothing was plain sailing. The English Knights tour of the US had to be cancelled due to logistical problems after two years of training, and then Jack was too young to play for England in the European Championships, and had to support his teammates remotely on TV. 

Jack & Vinnie in Mukuru

As a consolation, we raised the money for him and I to travel to Kenya in 2019 to help to support and coach the first ever African womens' team to travel to their U19s World Championships. Within hours of stepping off the plane, Jack was getting down and dirty with a bunch of boys from the Mukuru slum outside Nairobi, where Kenya Lacrosse had an outreach programme to bring lacrosse to the kids there. He made friends for life, through his beloved sport, with both the women and the young men he met and played with. Jack has always promoted and worked to grow the sport he loves so much, from the little boy in our little village outside Cambridge, who approached Jack on our village green one day to ask him what he was doing, and who now calls for Jack every day after school with his lacrosse stick, to the local university team, which have welcomed him and learned from him since he was 10. The uni boys had to learn to moderate their language, but quickly learned they did not need to moderate their shots on goal...! Then, just as he was selected for the England squad for the U19s World Championships in 2020, COVID hit and the tournament was postponed. Then it was postponed again in 2021.

Jack & John Galloway

Last summer Jack travelled to the US with his Dad, to play with his former club team, Resolute, in Columbus, Ohio. He played at the highest level tournaments with his Resolute Black 2023 team, helping them reach the finals of the NLF -- the furthest they had ever gone in that tournament -- and attended a prospect day at Jacksonville where he was awarded MVP. He chose Jacksonville because his all-time hero, John Galloway coached there.

In September, he waited, with bated breath, to see if any colleges contacted him, only to find that although his peers in the US were getting calls, he heard nothing, except for a lone email from Utah, and a few Division 3 colleges. We hopped on a plane to Utah, and had a fabulous visit, and also managed to squeeze in a couple more prospect days at Drexel and Duke, to make the most of an expensive hop across the Atlantic. He had fantastic feedback from all of them, only to hear that they had all recruited homegrown goalies. Undaunted, if disappointed, Jack kept emailing, and touching base with coaches, and working hard at his lacrosse, deciding that he needed to focus on the upcoming World Championships, which were finally going ahead after a 2-year COVID delay.

Now he is here, in Limerick, at the World's, playing with a team of dedicated athletes, who have had to self-fund their way here, and fit training in between school and jobs, and who are the most wonderful group of brothers to Jack. On paper, their results do not tell the whole story -- a series of tough losses to much better funded and trained teams in the top division, and they still keep on fighting and working hard. We have been buying warehouse-sized boxes of cereal bars and cartons of an Irish brand of chocolate milk that Jack is now addicted to in order to supplement the meager rations being fed to our always-hungry boys. In return, we are feeling lucky because the Kenyans are excited just to have regular meals here. Yes, some of those boys from the Mukuru slums finally made it after endless visa problems and are playing their hearts out with joy and dedication. Now that is the true spirit of lacrosse.

On Saturday, in England's big game against Australia to determine 4th place in the top division, the coaches decided to keep the other goalie in for the whole game. Usually, Jack and his teammate Sam Rogerson, share each game -- Sam is yin to Jack's yang, and they decided that Sam's easygoing nature suited the first half, giving Jack the chance to scout the other team and come in as "The Closer" for the second half. This time, Sam was seeing the ball really well and everyone agreed he should keep playing for the whole game. Jack wholeheartedly supported this decision with grace and understanding, and was unfailing in his support of his fellow goalie and team. As I paced the sideline in frustration, I realised that he is a better person than me. Once again, my boy is teaching me about grace and resilience under pressure.

From England Lacrosse

On Sunday, the coaches put Jack in for the whole game against Canada, under the lights, and in the midst of a brewing thunderstorm. I could not have been more proud. He faced shot after shot from top international players, many of them starters at D1 schools in the US, and kept bouncing back with focus, skill and cheerfulness. The stats are conflicting (as they often are), but ESPN counted 16 saves, although the official stats counted 13. I was unable to count, watching with my heart in my mouth and immense pride.

Afterwards, he was relaxed and happy... truly in his element. This is his happy place. The place where he is meant to be -- facing shots all day and all night, from the best in the world, with his teammates by his side. He will be on the field again today, in the must-win game for England to stay in the Championship bracket. Whatever the game, whoever the opposition, he will be out there, putting his heart and soul into the Creator's Game. It is what he was made for.

He is still uncommitted and college eligible.

Peeling Eggs

 

Quail Eggs - a gift from a friend

I like to have eggs for breakfast -- usually scrambled, but sometimes I will boil them to minimise clean-up or so that I can eat them on the go. When I peel hard-boiled eggs, I have learned to tap the shell against a hard surface, all around the girth of the egg. Then I peel that central belt of shell off the egg, and, if I'm lucky, the polar caps pop off quite easily, more or less in one piece.

Watching me do this once, my Dad said, "you know, it's better to peel them end-to-end first, rather than around the equator."

"Oh really..." I muttered, rolling my eyes slightly and continuing to peel the eggs the way that I had always peeled them.

"It works better," he said.

"Umhm..." I murmured.

I could have asked him why, and, knowing my Dad he would have had a good explanation as to why he knew better. But I didn't ask, because I knew that even if his explanation was convincing, I had no intention of changing my habit. I was used to his regular unsolicited advice, but I was pretty opinionated myself -- I had, after all, inherited his independence and logical brain, and I was old enough to have my own thoughts and habits. So, usually, I smiled sweetly, thanked him for his input, and carried on doing things my own way.

A few weeks ago, I was peeling hard-boiled eggs, and the memory of this unremarkable exchange came back to me through the sensation of cracking and peeling. I caught my breath, and braced myself for the now familiar ache in my chest that I would never again have those little interactions with my Dad. He died last December and I miss him terribly.

As I picked up the next egg, I paused for a moment, and then reoriented the egg in my fingers, before cracking the shell around the egg, pole-to-pole. I may never know why that method is supposed to "work better" and I don't really care if I ever find out, or even if does make a difference. I just know that whenever I peel a hard-boiled egg, I will always do it this way from now on. It's just one more little habit that I will change to keep his memory alive.

Too Many Hospitals, Not Enough Humanity

If there is a cosmic game of hospital bingo, then last December I was winning the non-medical professional category for a few weeks. I visited three different hospitals, and was in at least one almost every day. I became the Queen of hospital car parks, and a pro at finding the right ward name in an endless list on direction signs. I can tell you that Musgrove Park Hospital in Somerset favours optimistically literary-themed names in buildings named for the junior royal who opened them, whereas Addenbrookes Hospital in Cambridge feels somehow more business-like with its less-evocative, descriptive names. Eliot Ward in the Duchess Building. Barrington Ward in the Jubilee Building. Rheumatology Research Unit, X-Ray, Outpatient Clinic 2.  I have learned that the bigger the hospital, the higher the parking rates.

I didn't plan my December like this - let's face it, no one really plans a tour of hospitals, do they? Hospitals usually crop up in our lives when we least expect it. Or, if the visits are more planned, they are still a somewhat reluctant choice of destination, even when they provide the relief, care and answers that we need and seek. And, of course, more people than ever have had more encounters with hospitals than probably ever before, and my experience was not unique at all, although it was definitely new to me.

Late in November, I called my parents, which I had been doing daily for the previous week, because Mum and Dad had not been well. My intention was just to check in on them. Mum was getting better, but Dad was not. In fact, although Dad's symptoms were all very non-specific, he was clearly, and noticeably, just worse. In the space of a 10 minute conversation I went from care and concern, to a very clear intuition that I needed to get in the car and make the 4 hour drive down to Somerset to see him. If you had asked me what I was planning to do once I got there, I would not have been able to tell you, but I was very clear that I needed to go. 

I had a window of opportunity of a few days without any appointments or commitments that I could not rearrange. One of the advantages of being a home-school Mum is that life is very flexible. So I just had to check in with my husband and the boys and make sure that they could take care of each other for a few days. I assumed I would be back home in time for my hospital outpatient appointments at Addenbrookes for the tests and assessments needed to get my Psoriatic Arthritis treatment started. I hoped that seeing Dad in person would reassure me that he was doing okay. That hope was not fulfilled. As soon as I saw him, I knew that things were not right.

Mum and Dad had both, very sensibly, taken a COVID test the previous week, when they had developed gastrointestinal signs within 24 hours of each other, and were both negative. With that in mind, taking Dad into a medical environment had its own risks, but it was clear that he needed to be assessed in person. After a restless night's sleep, ruminating on a combination of 25 year old veterinary principles and Dr. Google, I woke up convinced that he needed to be seen immediately, rather than wait for the GP appointment that had previously been offered to him for the Monday. I was worried, as a daughter, about how to persuade him to call the NHS Urgent Care line again when he kept insisting that he did not want to "bother" anyone. The fact that he ceded to my judgment fairly readily, further confirmed how terrible he felt. 

I pulled out the big guns of all my medical terminology to get the on-call doctor's attention, and she asked me to take some of Dad's vitals - pulse, respiration, blood pressure. That was enough to prompt a referral to the first hospital of the week - Bridgwater Community Hospital. The out-of-hours GP there took a full and detailed history, and examined Dad. After much discussion, he reluctantly agreed that Dad needed intravenous fluids, and further assessment, and so referred us to hospital number 2: Musgrove Park Hospital, which is the biggest local hospital in Taunton.

I learned that the ward that we were told to report to was the COVID Assessment ward, just as they came to collect Dad in wheelchair. They told me to say good-bye to him, as they whisked him away. Remembering all those terrible stories we've all been reading about seeing loved ones disappear into COVID wards and dying without ever seeing their families again, I felt like I had been punched in the gut. Was this the last time I would see my Dad?

That thought felt melodramatic, but, in the end, it turned out that it was correct. Ten days later, after COVID had once again been ruled out, and Dad was transferred to general medicine geriatric ward, Dad died suddenly and unexpectedly. Even the doctors, who were clearly frazzled and distracted by the big pandemic going on in the rest of the hospital were clearly shocked and upset, having triaged him as non-urgent. In between Dad being admitted, I had driven back to Cambridge for my own rheumatology and x-ray appointments, and then returned to Somerset to drive Mum to Musgrove Park every day for a week. Once Dad was off the COVID ward, he was allowed the same, single visitor for an hour a day. Mum was too anxious to drive the 45 minutes there and back, so I drove her each day and sat in the hospital car park. I spoke to Dad a few times on the phone, including on the day he died, when I had to tell him that Mum would not be visiting that day because the hospital had been closed to visitors due to rising COVID numbers in the area.

What to make of all of this? Who knows...? Certainly not me. I started to write this blog before I knew the outcome, and when I was thinking about witty commentaries about the state of caring in our society these days. When asked how my Dad died, I answer that although he did not die OF COVID, I believe he died BECAUSE of COVID. A post-mortem revealed that my Dad had lymphoma, a largely treatable disease in this day and age if caught early enough. But that was not diagnosed because my Dad was "parked" -- his case did not seem too urgent, and, to be honest, because he was not one to make a fuss. To be clear, I do not blame individual doctors and nurses. They were as kind as they could be, both to Dad, and to us, when they had a moment to spare. The doctor who called me the day after he died, who had been a bit brusque, and maybe slightly irritated with my constant questions on the phone earlier in the week, sounded genuinely horrified and upset that he had died so suddenly. I feel for her and all her colleagues, working in such an under-resourced, stressful environment, with nothing but clapping on doorsteps to support them. 

In the meantime, under the same circumstances and under-resourcing, I had had a very positive meeting with a brilliant team of rheumatologists, researchers and nurses, who had guided me through the process of starting treatment for my PSA. Most importantly, they had given me hope that things would get better for me. I would 

Clearly, I cannot be clear-headed or objective about my Dad's death. I loved him very much and he was one of the best of the best. I am still being battered by the storms of grief, and have struggled to put much of any of this into words until now, almost 4 months later. But if I had ever suspected that this country, and society in general, has neglected caring and humanity over the bottom line, and political expediency, then this whole experience has shed a much more personal light on that belief. I am heartbroken... not just for my Dad, although that would be enough to devastate me, but for the state of our collective humanity. 

Bluetits, Blue Gyms and Greenspace

One of the many (too many!) outdoor and wild swimming groups I am a member of on FaceBook, is a local outpost of an organisation called the Bluetits, which is a good example of the lovely humour and sense of community of swimming groups in my experience. The logo for the group (below) is a playful picture of a blue bird, dressed chastely in a red, polka-dot swimsuit. But anyone who has gone swimming in an outdoor body of water in Great Britain in the winter knows that the name references a routine side-effect of the act as well.

Not that any of us are looking. We're all pretty adept at getting changed back into warm clothes after a cold dip, without flashing the wildlife too much, using a range of techniques, towels, and the sitting-down wiggle. A favourite piece of equipment, although somewhat divisive, is a changing robe, often referred to by the most common brand name of Dryrobe. These practical, if not flattering, items of clothing, have become quite divisive, with a recent sign at a Irish beach actually attempting to ban them (https://www.theguardian.com). While I suspect that the "ban" is tongue-in-cheek, it does represent some of the tensions in the wild swimming community between established swimmers and newcomers. 

Even the name of the activity represents different factions - some of the old-school types say that swimming outdoors in natural bodies of water is just swimming, since it is something they have done since childhood without thinking of it as anything fancy or new-fangled; others distinguish between wild, open and outdoor swimming, since the bodies of water can be man-made or in an outdoor lido; and, others emphasize the cold-water aspect. Similarly, there is a huge range of types of swimmers, from serious-minded triathletes decked out in layers of neoprene, working on their mileage for their next event, to groups of middle-aged women who gather for a quick "swimble" or dip, before sharing cake and giggles on the shore or bank of their preferred swim spot. There are men who swim lightheartedly, too, but they are definitely in the minority, and although all age-groups are represented there is also definitely a skewing of the demographics towards the later stages of life. As an example, a recent post on one of the swim group chats was about whether cold-water swimming helped to mitigate hot flushes or not. To be honest, I am quite impressed with the men who navigate those sorts of chats graciously, to join in. 

Another feature of wild swimmers, in my experience, is openness and inclusivity. You can't really be too shy if you are fumbling back into clothes after a dip in front of someone who, until 20 minutes earlier was a complete stranger. And there is something about submerging yourself in ice cold water that equalises everyone, and breaks down barriers. So I may not know a fellow swimmer's last name, but I know that they swim to ease their PTSD. Or I may know that someone I met five minutes beforehand has had a pacemaker fitted, since she cheerily told me what to do if there was a problem with it as we were getting in to the river, and that another new swim buddy has chronic fibromyalgia, that is only eased by cold-water swimming.

I can't give you statistics, but anecdotally, a very high number of wild swimmers have chronic mental or physical health conditions. It is no coincidence, therefore, that during 2020, and especially during both British lockdowns, there has been a huge influx of wild swimmers, and membership of all the online groups has soared. I am sure that some of this is due to the frustrations of many that they can no longer go to the gym or local swimming pool for exercise. But I believe that the increased numbers and passion of these new swimmers may be also due to the fact that many are drawn to and stick with the activity when they find that it lifts their spirits and eases their pain. Most outdoor swimmers have discovered for themselves what science is only just beginning to investigate and validate - that cold-water immersion seems to have all kinds of health benefits, especially for those with chronic conditions.

A beautiful, pre-COVID example of such a discovery was chronicled in a short documentary film I saw recently, called 100 Days of Vitamin Sea. In the film, a young woman who suffers from horrendous, chronic migraines, which are unresponsive to even the strongest painkillers, found relief from the frequency and severity of her affliction through daily cold-water dips in the sea off the coast of North Wales. It is a moving, and fascinating account, and in it, she and her partner, who is the film-maker, and who also accompanied her on her swims, try to find out if there is any science behind their discovery. They are led to a researcher called Professor Mike Tipton, who works at the University of Portsmouth, and originally studied cold-water swimming and cold-shock due to his concern about the dangers of the activity. In the process, he started to hear about the benefits that many swimmers report, and use to justify an activity which, in his opinion, was unnecessarily dangerous.

Dr. Tipton has researched the anti-inflammatory effects of cold-water shock, as well as the effect of vagus nerve and trigeminal nerve stimulation. He theorises that these mechanisms may be involved in some of the benefits that swimmers report. Meanwhile, Professor Giovanna Malluci, here in Cambridge, has discovered that proteins expressed by mice in response to cold-shock, and which appear to have neuroprotective effects against aging and dementia, are also up-regulated in cold-water swimmers. So cold-water therapy may be good at preventing cognitive decline in old-age. Of course, some might argue that the desire to immerse yourself in cold, muddy rivers already indicates a degree of cognitive decline, or at least some kind of madness, so clearly I may not be the best judge of that! But I do have a vested interest in finding out more about the science behind my mad hobby.

In a webinar panel to promote 100 Days of Vitamin Sea at its premiere, Dr. Tipton complained that one of the challenges of studying the effects of wild swimming was that there are so many elements of the activity that could be beneficial: the health benefits of exercise have been well-documented, there is ample evidence that exposure to nature has positive mental health effects (Mind.org), and there is also evidence that time spent in or near water has further benefits (blue gym). For example, did you know that it has been documented that people who live in coastal areas of Britain are generally happier and healthier than those who don't? (The Blue Gym Initiative).

Of course, Dr. Tipton's scientific dilemma made me chuckle, because it is also the reason why so many of us fall in love with outdoor swimming in the first place.... we are getting all of these benefits at once. That is also why, despite his concerns about the dangers of open-water swimming, many of us will continue to pursue the activity, even while understanding the risks. It will be interesting to see how many of the COVID lockdown newbies keep up the habit after gyms and pools reopen more reliably... my hunch is that some will, if not all of them.

In the meantime, I am due to meet two other Bluetits at my favourite swim spot tomorrow morning. I have not met them before, but connected with them because they live locally and were asking for recommendations of places to swim. All I know about them is that they are passionate about getting into wild bodies of water, no matter how cold, and I know that whether we become long-term friends or not, we immediately have a strong bond, and will have fun together. Not a bad start to any friendship... 

Belatedly Giving Thanks

Thanksgiving is not a traditional celebration for us, and I love it all the more because of that. As I write this, the turkey is in the oven, the homemade cranberry sauce and pumpkin pie are chilling in the fridge, and the NFL is on Sky Sports. It's the wrong day, but it is a typical, Allen Thanksgiving.

Matthew and I moved to the US just after we got married, and spent the first few Thanksgivings invited into the homes of dear, American friends. Those were lovely, but we felt like alien interlopers. Strange, British onlookers to a very American tradition. Many people would think of the Fourth of July as the classic American holiday, but, to me, Thanksgiving is more so. Of course, some of the over-simplified narratives of pilgrims and natives sharing the bounty of the land gloss over the colonisation, introduction of disease and genocide that underlie America's complicated history, and I am glad that those are being discussed and unpacked a bit more. But that is precisely why Thanksgiving is so emblematic of America to me, since it incorporates all of the best and the worst of its history in one glorious tradition of food-packed over-indulgence and togetherness.

After those first few Thanksgivings in other people's homes, Matthew and I had a few alone, not really celebrating, but just spending the day together like a Saturday without anywhere to go. I imagine that our experience of Thanksgiving in those years was a little like Christmas must feel in a christian country for non-christians - all those Santas and pine trees, but none of the meaning. It felt a little lonely to know that all around us, people were gathering with their nearest and dearest, eating turkey and pumpkin pie, and recharging all the old family tensions over who was making Granny's traditional stuffing, and who never pulled their weight when it came to the washing up.

At some point, after Sam was born, though, we decided that we should celebrate Thanksgiving for our American son. We had no family obligations or traditions, though, so we could pick and choose whatever menu items we wanted, and just spend the day at home, together in our own, little Allen family world. Slowly, but surely, especially once the boys started school, our favourites started to become traditions, although still without any sense of obligation. Matthew and I enthusiastically embraced the turkey and pecan pie, although we added roast potatoes, and skipped the candied yams. The boys started to request pumpkin pie as they got older, even though our British palates could never quite reconcile a vegetable in a dessert. The commentary for the Macy's Thanksgiving Day parade and Westminster Kennel Club Dog Show became the background noise while I cooked, and the endless NFL football games on TV provided the backdrop to the post-prandial tryptophan coma. Over the years we even started to invite British relatives over for Thanksgiving, or became hosts to other non-American outsiders who had nowhere else to go.

I don't think that it was until we moved back to the UK, though, that we really started to treasure and actively embrace our Allen family Thanksgiving traditions. Being back in England meant that celebrating Thanksgiving required more effort and planning, and took on a kind of sentimental attachment. The logistics and timings were more difficult - it really isn't practical to cook and eat a huge Thanksgiving meal on a workday, and sourcing some of the ingredients were more challenging. Just like when we lived in the US and had to import mincemeat and Christmas puddings, and make our own British Christmas treats, I now had to source tinned pumpkin and French's Fried Onions to make our favourite Thanksgiving recipes. Whereas I used to just order store-made pies, I learned to make a decent homemade pumpkin and pecan pie... even if they aren't as pretty! And we have continued to welcome people into our celebration - American friends who are feeling homesick for their family traditions, and our British family and friends who are new to it all. When I looked back through my photos to find a picture of previous gatherings, I realised that I did not have any because I am usually too busy cooking.

This year, the challenge has been further complicated by COVID, and, of course, we cannot welcome others into our home. Even Sam, who is only 8 miles away, in his college house at Girton, cannot come home this weekend, due to the national lockdown. So I asked the boys what they wanted to do. Did they want to wait until Sam does come home next week, at the end of term? Or, celebrate without him? Or, just skip Thanksgiving this year? I wasn't surprised that the latter was not seriously considered as an option, but I was a little surprised that Jack insisted that Sam had to be part of our celebrations. 

"It's not Thanksgiving without Sam," he said. "Even you and Dad are not as important as having him here, since you are not American. Sam and I are American, and so I want to celebrate Thanksgiving with him."

A little taken aback by Jack's willingness to throw the cook under the bus, I was also touched that he felt this bond with his brother. So, we are implementing a new tactic this year, which, hopefully, won't become a tradition...! Instead of Sam coming home for Thanksgiving dinner, we are taking dinner to him. I have started all my timings earlier than usual, to allow time to pack up a plate of food, and half a pumpkin pie, which Matthew will then deliver to Sam's door. Once Matthew is back home again, we will set up the laptop at the Allen Thanksgiving table, and FaceTime Sam into the family gathering. It's not perfect, and may even be a bit silly, but it's an Allen thing.

One of the things that I have come to realise about Thanksgiving is that having rituals and traditions are important to really honour the gratitude fully. Of course, if you asked me, I would feel grateful for my family and friends, and all the abundance of food and drink we are lucky to have every day of the year. But it is through making the effort to create a ritual of the meal and the togetherness that the gratitude becomes more meaningful. And that is even more important this year. So, as I head off to check on the turkey, I would like to say Happy Thanksgiving, to all our family, friends, colleagues and aquaintances, whether near or far, American or not. I am grateful for you all.

Sore Fingers and Self-Doubt

We have a sofa being delivered today. Ordered three months ago, to the day, it is much anticipated by human and canine members of the family. It will replace the old sofa and armchair that we shlepped from the US with us 6 years ago, which are literally falling apart. Nonetheless, my feelings about the new arrival are more ambivalent. 

I know that the new sofa will be more comfortable, and will definitely smarten up the look of our tiny, cottage living room, but... I am worried. Not just about whether it will fit in the spot we have designated for it, but how we will rearrange the other furniture around it, and the logistics of disposing of the old sofa and armchair. 

You might consider that a mundane problem, maybe even a good problem to have... 'oh, the poor thing... she has to worry about how to fit her nice, new sofa into her lovely little cottage when others don't even have a home to live in.' You would be right, of course, and I remind myself of this as I sit here, worrying. But I still don't know how we will manage it, and the delivery is due in about 3 hours.

I have a new layer and perspective on this worry, that would not have been present before this year... I know that I will struggle to physically be able to move much furniture around. I also know that whatever energy I expend on moving furniture will likely leave me depleted for any and all other tasks that I need to get done today. Like making the pumpkin pie that I promised our American boys for our belated Thanksgiving celebration tomorrow. Like making dinner tonight. Like being able to move at all when I get out of bed tomorrow morning.

The nasty voices in my head want to dismiss these worries with a constant stream of snarky cynicism. They berate me with how I am just making excuses, that I am lazy, and that I should just get on with it, and get myself moving. And that I should also finish that novel I have been meaning to write, redecorate the rest of the house, and broker world peace in my spare time while I am at it(!). The nasty voices in my head have always been hard taskmasters. But recently, their cruelty has become more pointed, and harder to bear, as their criticism of my inability to get out of bed most mornings has come to sound more reasonable. Why can't I get up? Why are my back and feet always so sore? Why do I keep dropping things from my sore, swollen fingers, especially first thing in the morning when my hands are usually numb? How is it possible that I can sleep until noon, without even changing position in bed, and then be still tired for the rest of the day? Or when I do get up and start my day, something as simple as taking the dogs for a walk can leave me exhausted and aching for days afterwards? I don't recognise my body, and feel a sense of alienation with it. I feel imprisoned by it's limitations, and angry with myself for not being able to shake it off.

The nasty voices don't like to let me complain to other people much, but eventually I did talk to my doctor about this. In fact, in looking back over my medical records, I first talked to a doctor about my sore, swollen fingers about 18 months ago. Just early osteoarthritis, he said. Wear and tear in an aging body.

Then I saw a doctor earlier this year, when I had debilitating fatigue for days after going for a run. "You're pushing yourself too hard," he said. "Just back off a bit, and take it slower. You're not as young as you used to be."

So I stopped running. Then, I started to notice that even a long walk left me worn out for days. Then, I started to have days when I could barely manage to get the dogs outside at all without collapsing into a heap for hours afterwards. 

I saw doctors about my recurring plantar fasciitis (foot pain from inflamed fascia) years ago, when I was running a lot more. Despite all their suggestions, it seemed to come and go with no correlation to the orthotics, painkillers, different shoes and lifestyle adjustments. For the last year, it has come back much more persistently and painfully, to the point where I could barely walk first thing in the morning, and would be in tears at the end of the day. I had stopped mentioning it to doctors, since nothing they had ever told me about it seemed to help.

Then, I noticed a few patches of red, raised skin plaques. I didn't think much of it... they weren't really bothering me. Just a bit of an eyesore. But between COVID and my other physical limitations, it's not like I had much of a social life and so my appearance was not high on my list of concerns. Eventually, they started to itch a bit and would not clear up, so I called the doctor again. The receptionist made me wait to talk to the GP in the practice who had an interest in dermatology, and she asked me to send her pictures of the lesions, due to COVID-related social distancing. She only works two days a week, and so she did not get back to me right away. But when she did, she said, 'it's psoriasis.' She sounded surprised that I did not know this. 

"Have you not had psoriasis before?" She asked.

"No."

"What about family? Has anyone else in your family got psoriasis?"

"No." I racked my brain for any mysterious skin lesions mentioned by family members.

"It usually runs in families," the doctor assured me, as if I must be mistaken. Then she said something that changed everything. "And it can be associated with psoriatic arthritis. Do you have any joint pain?"

"Well, my fingers have been very sore recently..." I said, cautiously, not wanting to whine too much. "But the worst pain I've been having is due to my plantar fasciitis, which is obviously not joint-related."

"Actually, plantar fasciitis can be a sign of psoriatic arthritis," she said, casually.

After we'd spoken, I went to Dr. Google. There were lots of images of severely swollen, sausage-like fingers and toes, and extensive, angry red skin lesions all over anonymised bodies. That couldn't be right... nothing I was experiencing was that bad. But then I found an account from a psoriatic arthritis (PsA) sufferer who had presented with unremitting plantar fasciitis before any other signs appeared. Apparently it was possible to have PsA before any psoriatic skin lesions were present, and, in some cases, the skin lesions never appeared.

Finally, I was referred to a rheumatologist. One of the advantages of where I live is that there is a high concentration of specialists and world experts associated with the university. My rheumatologist is no exception, and he specialises in PsA. After about 20 minutes discussing my history and physical symptoms, he confirmed that it was highly likely that I have PsA, and probably have had it mildly for years. There are no definitive tests, although part of his research is looking for blood markers. The best way to confirm a presumptive diagnosis is response to treatment, which I will begin next week.

The various general practitioners that I have seen over the years, while initially sympathetic, have had a tendency to be quite dismissive of my reported signs, especially once any bloodwork they ran was within normal limits. Depression and peri-menopause are the catch-all diagnoses for a woman of my age and presentation. I don't blame them for that. PsA is not well recognised or understood, even by medical professionals, and it is hard to diagnose in it's early stages. But I do feel frustrated at how easily my doctors and I colluded to convince me that there was nothing really wrong with me, despite what my body was telling me. I believed the depression diagnosis in particular, because being tired and painful does make you depressed, and because I believed I must be a little "crazy" to keep thinking that there was something wrong with me when medical science could not find anything. I don't think it is a coincidence that it was only once I had visible skin lesions that a doctor took my concerns more seriously, and was willing to dig a bit further. I also suspect it may not be a coincidence that that doctor, who looked back over my whole medical history in search of a holistic answer, was a woman.

That is not to say that I think the other GP's were consciously dismissing me because I am a woman, but I do believe that all of us, myself included, were less likely to take my signs seriously because I am a woman. Unconscious bias is powerful in all of us. And even now, as I feel the relief of validation for how I am feeling, I still struggle to give myself permission to rest when I am tired. So today, I am worrying about the new sofa, and how we will find a way to make space for it. And I am struggling to be kind to myself and admitting that getting the new sofa installed may mean that I won't be able to do much else later in the day. I am, like many of us, a work in progress. A work in progress with psoriatic arthritis.

Polar Bear in the Fens

 

Today, I shrugged off my early winter blues, pulled on a swim suit and drove out to a remote little village on the banks of the River Cam, downstream from Cambridge in the Fens. This spot is so remote, that the pub nearby is called The Five Miles From Anywhere. The scene that was greeting me was what the Scots would call driech -- foggy and damp. There was a certain, mystical beauty in the way that the river merged with the sky, in a blanket of condensation on a very short horizon. But nobody in their right mind would call it an inviting prospect for slipping in to the river for a swim. I took a picture as I waited for my friend, Catheryn to arrive. When she did, apologising for being late, like I had been, we commiserated about the lack of sunshine that had been forecast. 

"I wouldn't have come if we hadn't arranged to meet," she admitted. I agreed. It wasn't the first time that we had made this admission to each other in this very spot. 

We sighed, and then started stripping down to our swimsuits on the river bank. I was undressed first, and, not being willing to stand around in the damp long enough to think about what I was doing, I stepped off the grassy bank into the water. I took a few tentative steps, avoiding the big rock that I had stubbed my toe on once or twice before, but which was easily spotted in today's clear-glass, still surface, and then pushed out into the water. I puffed and panted a bit, and tried to convince myself and Catheryn that it really wasn't that bad, before deciding that it really was quite bad, and shut up to concentrate on forcing my arms and legs into a stilted breaststroke. 

After making my way about 40-50 meters into and along the middle of the water, I glanced back at the bank to see how Catheryn was doing. She was picking her way carefully down the slipway, into the water. With neoprene boots on, her feet were a little more protected from the slippery edges of the concrete tiles, so she could take a more gradual approach to the water than I had. But we both knew that whatever approach you use, at 3 degrees Celsius air temperature and about 8 degrees water temperature, on a murky November day in England, the cold shock of immersing yourself in a natural body of water was literally breathtaking. I trod water for a while, and then swam back towards Catheryn a little, waiting for her to catch up. Part of the reason for swimming with a friend, beyond the safety element, was to share the moment of shock and awe.

By the time Catheryn caught up with me, my skin was getting numb, and a delicious tingling feeling had taken over. I was breathing a little more naturally as well, and was able to appreciate the view of a serene swan gliding into the mist ahead. The surface of the water felt completely still. The joy was setting in.

"Okay?" I checked with Catheryn. 

"Yep. You?" she responded. When your breath is short, conversation can be terse. 

"Yep." 

I turned and we breaststroked further up the river, approaching the bend up ahead.

"Don't think I'm going to get to the tree today." Catheryn commented, referring to our usual turning point. Or, what had been our usual turning point in earlier months, when the water was a few degrees warmer.

"That's fine. Me neither," I reassured her.

As we made our way under the power lines, we chatted a bit more, our breath coming a little easier, although we both decided that we weren't in the mood for submerging our faces today. A sedate, heads-up breaststroke was better for conversation anyway.

"That's about 6 minutes," Catheryn pointed out, "better turn around."

"Okay," I agreed. 

As we are still acclimatising to the colder temperatures, we are careful to keep track of our time in the water. Catheryn tends to stick to about 10 minutes, I sometimes push it a minute or two longer. I have more of what wild swimmers jokingly refer to as "bioprene" than Catheryn, who is generally fitter and leaner than me. While some swimmers wear wetsuits, made of neoprene, Catheryn and I are relying on our natural, bodily insulation layers to keep us protected from the cold. Hence, biological "neoprene" or "bioprene".

After doing my first winter dips back in January, as a sort of New Year's challenge to myself, and then enjoying wild, outdoor swimming more and more over the summer and autumn, I signed up, in a moment of madness, to the Polar Bear Challenge this winter. Polar Bears commit to swimming in open water at least twice a month from November to March, at different levels, which correspond to different distances they have to complete. There is a Penguin level, which allows swimmers to wear any or all layers of neoprene or other synthetic layers that they want. But all of the other levels of Polar Bears commit to wearing nothing other than a standard swimsuit, and a latex swim cap. I am doing the Gold level of the challenge -- which means at least two swims a month of 250m or more, and a total of 5000m over the whole 5 months. The advice from MamaBear (Pauline Barker, a champion ice swimmer who sends out helpful and encouraging weekly missives) is to do more of your distance for Gold in November and December, as there is a lag in water cooling compared to air temperatures, so the really cold water temperatures do not happen until February or March.

At 2300m so far, after today's estimated swim distance (thanks to Google maps), I am on track for the Gold level so far, as long as I keep getting in the water. As someone who was pretty competitive about distances and times a long time ago in my youth, this is a very different kind of challenge. But since then I have had injuries and illnesses that have made it hard for me to recognise my own body, and it is a relief and a strange delight to challenge myself in a different way. Swimming 250m is barely a warm-up for most athletes, but most of those same athletes might think I am crazy for doing it in sub-10 degree water in nothing but my swimsuit. This challenge is less about athletic achievement for me, and more about my desire to move my body, and reconnect with the natural world. 

In the last year I have developed signs of a chronic disease, which has brought new experiences of chronic pain and fatigue. As well as being challenging physically, that has caused mental struggles as I have tried to figure out what that means about my self-identity and self-respect. Swimming gives me some freedom from the weight and pain, and the cold exerts a kind of magical analgesia on my pain, too. So, for now, I will be maintaining my transmogrification to Polar Bear, even if I still grumble on the riverbank before I get in.