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Chronic Illness Chronic Pain Essays

My Son Gave Me A Kidney. He Has Been Chronically Ill Ever Since.

I'll probably never know if he got sick because he donated an organ to me, but after years of soul-searching, I'm determined not to let his kidney go to waste.

On May 15th, 2007, my 22-year-old son, Dylan, saved my life.

He donated a kidney to me.

It wasn’t my first kidney transplant. In 1993, over the span of three days, my renal function plummeted to 3 percent, leaving me in dire need of a new kidney. After what seemed like endless tests, I was diagnosed with ERSD, End Stage Renal Disease. But after surviving 5 years on hemodialysis, then spending 8 wonderful years with my first transplanted kidney, I became gravely ill again. For some unknown reason, my body rejected my anti-rejection medications I’d been taking for so long. By the time my symptoms appeared, it was too late to save my kidney.

My youngest son, Dylan, sat beside me on my hospital bed. At 6’3”, he was like a giant as he wrapped his arms around my frail body, enveloping me in hope and love. “Mom, I want to test to be your donor,” he said.

Doctors assured us he would be fine living with one kidney. After much discussion, the tests were administered, and he was a perfect match. On May 15th, 2007, Dylan and I were wheeled, side by side, on gurneys down the long, lackluster hospital hallways to our individual operating rooms.

And just like that, my life became mine again, thanks to my son’s gift.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

Weeks after surgery, he began experiencing excruciating joint inflammation leaving him unable to walk or care for himself. He was initially diagnosed with gout. His rheumatologist prescribed several medications, but the results were abysmal.

He has since been diagnosed with fibromyalgia, rheumatoid arthritis, and chronic fatigue syndrome. Additionally, due to the intense pain and crippling flares these conditions present, he quickly became addicted to his pain medications, presenting another challenge to overcome.

His chronic pain left him broken in spirit,  and a prisoner in his home. Since he could no longer work or party, his friends disappeared.

I couldn’t help but wonder if this was due to him donating a kidney to me.

There are no definitive answers for us as to whether organ donation caused his illnesses or made his body more susceptible to them. Studies indicate some donors may be more prone to developing ESRD than others but even those results are not conclusive. Lainie Friedman Ross, a physician and professor of bioethics at the University of Chicago says: “The consequences of organ donation might not be apparent for decades — and the risks are not the same for everyone. Young or minority donors have a higher rate of kidney failure than the general population.”

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

I felt heartbroken watching my son, the person who saved my life, walking around my home barefoot with a cane. He was unable to wear shoes or slippers due to the inflammation in his feet. It was ironic, because thanks to him I could walk and hike for miles again… just not with him, as I longed to do.

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

As my son suffered, my guilt grew, because the reality was I was feeling better than I had in a long time. So I temporarily moved in with him, helping with every aspect of his daily routine: going to the bathroom, getting himself into his shower chair, helping him dress, get in and out of bed, and so on..

Mary McLaurine and her son, Dylan, who donated a kidney to her 11 years ago.

As a mother, and the person for whom he had (perhaps) sacrificed his health for, all I wanted was to help Dylan get better. But nothing worked entirely, and even when it did work, the side effects added new wrinkles to his suffering. For example, ome steroidal medications helped with his inflammation and pain, but led to sudden mood swings, uncomfortable boating, and persistent nausea.

He knew I blamed myself for his debilitating illnesses, and the guilt was eating me alive. I did my best not to burden him with my self-blame, but it was impossible for him not to notice, at least a little, the tears that would sometimes fill my eyes as I saw him suffer.

How could I not blame myself?

One quiet morning, when he finally noticed my tears, we sat down and talked. He let me off the hook. He told me he never regretted his decision and would do it again tomorrow. But what he said next was profound.

“Mom, I gave you this kidney because I love you, you gave me life, brought me into this world and I wanted to give you that same gift back. We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life. And that life will be ruined if you keep carrying this guilt with you, because the doctors have told you that stress can injure your already compromised immune system. Don’t let my kidney go to waste. The best thing you can do to help me get well is allowing me to witness you living your life to the fullest! Joy is good for my soul, and yours.”

“We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life… Don’t let my kidney go to waste.”

I realized he was right. From that moment on, I tried to focus on my gratitude, not my guilt. Some days were still hard, and  I could feel the guilt rise in my throat like a poison trying to escape, but then I would try to recenter myself, remembering that regardless of whether or not giving me his kidney had caused his health woes, I still couldn’t let it go to waste.

And as my attitude changed, it had a positive impact on my son too. We were now linked, he and I, by the kidney that he had given me. In a way, we both shared a body, and as my guilt went into remission, Dylan began responding positively to new medications. His activity levels spiked, and he was able to get off opioids. His arthritic flares have calmed, and we are optimistic things will continue to get better. Changing to a healthier diet, and routinely exercising has allowed him to get out and do routine shopping, outdoor activities, and even socialize with friends.

Watching Dylan’s health spring back has helped further alleviate some of the guilt pangs that surface in me from time to time. And every year, on May 15th, my son and I celebrate our lives, his monumental decision to donate life to me and my unwavering appreciation and gratitude for his generosity and love. We don’t look back anymore. We move ever forward.

He is my hero.

Creative Common photo by Helen Taylor.

Chronic Illness Health & Fitness

How To Have Great Vacations When You’re Chronically Ill

Because let's face it: people who are dealing with a health condition probably deserve a good vacation more than anyone.

Since her diagnosis 4 years ago with Crohn’s disease and Chronic Fatigue Syndrome, my mother and I haven’t had a vacation together. Our regular twice yearly trips to London—one of our favorite city breaks —have had to be put on hold as we adjusted to the daily realities of her illness, including her limitations and how to work with her new dietary needs.

Until now. With the arrival of the smash Broadway musical, Hamilton, to the London Victoria Palace Theater, we decided to finally arrange a trip back to the City. After all, when two people who don’t normally enjoy musicals find themselves captivated by a soundtrack for two years straight, it seems worth the effort to travel a few hundred miles to see the show for real.

The point of a vacation, of course, is to take a break from your daily routine. When you’re chronically ill, though, you can’t just switch it off for two weeks. So as we plan our trip, we do so with full knowledge that, this time, there will be things my mother can no longer do.

But while there may be new hurdles and challenges to overcome, the trip can still be very rewarding, providing we plan accordingly. Here’s some of what we’ve learned as we plan so far.

Choose your destination wisely

When you’re planning a vacation with chronic illness, think honestly about where you would like to go, and whether it’s achievable. You’re looking for a destination that hits that sweet spot between ‘fun’ and ‘practical’. It’s not weakness to accept that there are certain places you might not be able to go. A long hiking trip is no use if you have mobility issues, while a foodie excursion will be limiting if you have specific dietary needs. Plan accordingly. Consider things like how weather or temperature may affect you, or whether you’ll be able to get satisfactory care locally if something goes wrong.

If you’re traveling with someone, discuss your limitations with them.

Because my father grew up in London, we’ve been visiting the city for most of my life. We love to shop, and walking through the City conjures up memories of my childhood for my mother and me. It’s also only 3 hours away from our home in South Wales, meaning we won’t be too far geographically if she has any health issues. It’s the perfect ‘first trip’ after her diagnosis.

Likewise, if you’re traveling with someone, discuss your limitations with them. My mother was worried about the journey as she suffers from claustrophobia and didn’t want to feel trapped, so we’ve opted to drive rather than take a train to London. It’s a little more effort for me as the driver, but it means we can stop frequently if she needs a rest or some time out.

Pack smart

Make sure to pack what you can ahead of time. It’s likely to be a tiring process so avoid leaving things to the last minute. It also gives you time to consider anything extra you need to purchase or arrange. Items like a doctor’s certificate or note can be useful for getting care abroad, but also make sure to think of creature comforts like a favorite blanket to keep you warm, or make you feel more at home. If there’s going to be a lot of downtime, a tablet is great for Netflix rather than being restricted to hotel TV.

If you’re taking any of your meds or supplements on board a plane, make sure they’re clearly labeled with what they are

Consider using a pill organizer box to arrange your medications for each day of your trip. When you’re away from your daily routine, it’s very easy to forget to take your meds even if you’re normally very organized. Set an alarm on your phone to be doubly sure that you never forget to take them at the relevant time of day. If fatigue is an issue, like with my mom, it’s even easier to forget out of tiredness. An alarm reduces that risk. (Alternatively, you could also subscribe to a service like PillPack, which prepackages your medications by the dose and ships them directly to you.) (Disclaimer: Folks is sponsored by PillPack.)

If you’re taking any of your meds or supplements on board a plane, make sure they’re clearly labeled with what they are, along with your name. Take them on your carry-on luggage so there’s no risk of losing them if your luggage is delayed.

Book ahead

If you’re planning a trip that’s focusing on a specific event such as a shopping trip or attending a concert, make sure to book your hotel as close to the location as you can afford. Hotels.com and Expedia.com are great options for booking, allowing you to enter an address and view hotels nearby. After you’ve participated in the activity, you’re likely going to be tired, especially if you have a chronic illness. You want to be able to return to your hotel room fairly quickly. If visiting a city, a central location is ideal if you want to rest up for a couple of hours before heading back out.

Pre-Crohn’s, my mother and I would choose a hotel just outside of London and take public transport in. While that’s a cheaper option, this time around, we’re paying the extra to be nearer to the action. If she’s going to be out late, we want it to be spent in fun, not in transit.

Consider any additional requirements you might need and let the hotel staff know ahead of time. Do you need wheelchair access in your room? Or a walk-in shower? Both Hotels.com and Expedia.com allow you to filter results by accessibility features. It’s still worth informing the hotel at the time of booking to guarantee you get the assistance you need. We’re prioritizing somewhere that has elevator access. The last thing we need after hours of traveling is my mom struggling up multiple flights of stairs.

Finally, if you’re planning on dining in your hotel, this is also the ideal time to make them aware of your dietary needs. Outside of your hotel, sites like AllergyEats are great for looking up allergy-friendly restaurants. Elsewhere, a quick Google for a restaurant you’re considering will often provide information on how well they cater for specific diets. Restaurant chains are particularly efficient at offering everything you could need to know.

Plan, plan, plan

Everybody’s energy levels are finite, but with a chronic illness, your batteries recharge slower. Take that into account to to use your energy to the fullest.

Plan some rest days amongst your trip.. Ideally, have a rest day the first day you arrive at your location, so you’re well-rested to go out the next day.  If financially possible, extend your trip by a few days so you can take it easy as needed without giving any time up for shopping and sightseeing. Reading a book by the pool or indulging in a spa day can restore you a little for the next day of sightseeing.

Everybody’s energy levels are finite, but with a chronic illness, your batteries recharge slower.

Think about what’s essential for you to achieve on your trip. Is there a walk you particularly want to take? A show you desperately want to attend? Place that at the top of your list then write up everything else that you’d like to do. Prepare a ‘worst case scenario’ plan of action alongside a ‘best case’ list. For our list, we’ve made Hamilton our biggest priority, with short shopping trips to Selfridge’s or Harrod’s being next on the list. Everything else is optional.

Check out services like Google Street View to see exactly where you’re going, and whether a location is accessible. Apps like AccessNow crowdsource information to determine places that are accessible for wheelchair users. For those with mobility issues that don’t require a wheelchair, it’s great to be able to know exactly where a seat or bench is along a public walkway. Use apps like Uber or Lyft to arrange rides ahead of notice so you don’t have to rely on hailing a cab the old fashioned way. It might cost a little more than using public transport, but it’s worth the extra few bucks if you’re able to enjoy your trip.

Eat well

Many chronic ailments also require you to follow specific diets Luckily, most restaurants and eateries can cater to specific allergies and diets, but you still should do research beforehand. Don’t be afraid to email or call to double check a restaurant can meet your needs. Check out potential places to visit on Yelp or TripAdvisor, and see if any customers with dietary needs have had issues before. We’re not booking reservations ahead of time in case my mother’s Crohn’s is acting up, but we still have a list of options prepared of places that we know can cater to her gluten-free diet, if needed.

If you’re traveling to somewhere that involves a different language, brush up on learning key words such as what dairy or gluten are in that country’s language. Before your trip, use Duolingo, a language app, to learn the basics for food items. Make index cards that explain your allergies in the relevant language, saving you the hassle of learning correct pronunciation. Google Translate will help you in a jam while you’re there, but don’t rely on it as it’s imperfect.

If you’re able to, take some snacks with you. These can sustain you while you’re walking around, and if you need to eat and can’t find a place that caters to your needs, a bag full of snacks can be a life saver, especially for women like my mom, who weakens quickly if she doesn’t eat regularly.

Don’t put too much pressure on yourself

My mom is already feeling a little sad that this trip won’t be as jam-packed with sights and destinations as previous visits. We’re probably not going to be able to be as active as we have been in the past. But that’s okay. The important thing is: she’s still on vacation. Sure, the trip might not go perfectly to plan, and sure, it might be bittersweet at times. But she’s made it, and that’s a big step.

The important thing is: she’s still on vacation.

Feeling obliged to get everything possible out of an experience can make things more stressful than they should be. Just enjoy the ride. Take pleasure in the little things. Like me and my mom. We’re going to see our favorite city in the world from a whole new perspective. That’s exciting no matter how you cut it.

Neurological & Cognitive Disorders Profiles

An Unbreakable Silver Thread, Woven Through Everything

To create her award-winning art, New Zealand comic artist Jem Yoshioka has learned to juggle her doubts, her anxiety, and Chronic Fatigue Syndrome.

When I arrive at Jem Yoshioka’s loft in downtown Wellington, the first thing she does is offer me tea.

It’s the same ritual every time I come to her home in New Zealand’s capital city. I ride the rickety iron elevator, which is like something out of Titanic, to the loft, and Jem ushers me in, then she opens the wooden tea cupboard and starts pulling out boxes.

I covet her electric kettle, a space age gadget that heats water to the optimal temperature for different types of tea. She sets a timer on her phone so the drink steeps for exactly the right number of minutes.

A meditative tea ritual is an important part of Jen's daily routine.

A meditative tea ritual is an important part of Jem’s daily routine.

Jem’s been living here for as long as I’ve known her; close to five years. When we met in 2011, she had just tentatively entered part-time work, after a long recovery from an illness that left her devastated.

Five years before that, she was in the middle of of studying for a degree in design when she contracted a stomach virus. The virus soon passed, but Jem’s body refused all of her efforts to get well.

“Everything exhausted me. I got no rest from sleep. Over exerting myself would leave me drained for days,” she says. “It took two years of this before I was diagnosed with Chronic Fatigue Syndr

Jen at work on her illustrations.

Jem at work on her illustrations.

ome. There was nothing I could do to heal myself.”

An estimated one million Americans and a quarter of a million people in the UK have CFS, or Myalgic Encephalomyelitis (ME). The cause is not fully understood, the symptoms are complex and inconsistent, and there is no known cure.

“I slept in weird snippets when it seemed the thing to do, I would eat healthy and get pain from wholegrain bread one day, but be fine with it the next. Exercise would be fine until it destroyed me and I’d be unable to move for days. I learned I needed to listen to my body and follow what it was telling me.”

Plagued by exhaustion and anxiety, Jem struggled to continue her study, and the art that had always sustained her.

“It was difficult and I went through patches of being unable to draw. I had to teach myself all over again. My heart was broken. Drawing was something I’d always had, and I didn’t even really have it anymore.”

Now, close to a decade later, Jem uses her hard-earned degree and her artist’s eye to tell stories in steady full-time work, making space for drawing in her own time.

Her drawing and illustration work has won her both awards and acclaim, and is informed by her experience with illness–and her special heritage.

Yoshioka is Jem’s grandmother’s family name. When she married Jem’s New Zealander, or “kiwi”, grandfather in the 1950s, she refused to drop her name. It was a brave and an unusual choice. Jem initially adopted it as an online pseudonym.

“Drawing was something I’d always had, and I didn’t even really have it anymore.”

It’s always been a beautiful name to me, and I thought using it would help to solidify my connection to my heritage and direct my art practice. After about 5 years, I realized that the only places with my other name were official places. It sounded dull to my ears, so I decided to change to Yoshioka. It’s probably one of the best decisions I’ve ever made.”

This is one in a string of choices Jem’s made about her mixed race identity. Like many people with diverse backgrounds, she has questioned her right to belong, and this exploration is present in much of her recent artwork.  

“I remember growing up feeling proud and also feeling quite alone. There’s not a lot of other Japanese here, and the other families who are here are often quite different from mine. I worry about how much claim I have to my heritage, that really I use it as an excuse, an accessory. I’m sometimes scared of talking with other Japanese people, in case they think I am a fraud.”

Jem has travelled to Japan twice in the past two years, and has another trip planned in 2017.

A panel from Jen's ongoing coming, Folding Kimono.

A panel from one of Jem’s comics.

“I was able to be in Japan to commemorate the 70th Anniversary of the Hiroshima bomb, which my grandmother survived. I got to spend time with my great uncles, see places important to my family and travel with my younger brother. A three week trip with so much walking would have been absolutely unthinkable as little as 5 years ago. I am so grateful that my body has been able to recover to the point where I can walk around.”

“Artistically I think these trips will be feeding me for a long time. Japan is very important to me and this will be a common theme through my work, but it’s also important to know I’m not from Japan, I’m from New Zealand, and so my worldview and the work I make is different because of that.”

In the autobiographical comic Folding Kimono, Jem attempts to engage with her heritage through the gift and care of a traditional kimono. The work has been extremely popular, racking up over ten thousand notes on Tumblr, and earning Jem first place in the biannual Chromacon Art Awards.

“When I first wrote Folding Kimono I was convinced it was terrible,” she confesses. “But people seemed to connect with it, and I felt like they could see me.”

“I have been so moved by hearing other people of mixed heritage (especially mixed Asian heritage) talk about how my comic made them feel. I had people telling me they’d never seen their experiences recorded so accurately, that the piece resonated very deeply within them.

In May this year, Jem finished Visits, her third autobiographical comic.  She says it stills feels weird to create such personal things and share them with the world.

“I feel oddly selfish putting myself in the center of my work and getting people to look at it. Despite the response to Folding Kimono, I worry this isn’t something others will understand or be able to access or see value in. But it’s very cathartic material to make and it’s helping me to process a lot of things.”

Along with the lingering effects of her Chronic Fatigue Syndrome, Jem suffers from an anxiety disorder. She describes how this feels with typical artistic eloquence.

Anxiety is like an unbreakable silver thread woven through everything.

“Anxiety is like an unbreakable silver thread woven through everything. It’s a slightly different texture to the rest of the fabric, and it catches the light. I want to pull it out, but it causes the fabric to buckle and bend, and so trying to remove it only makes things worse. Now not only is the thread still there, impossible to remove, it’s ruined everything around it.”

“I work hard to learn about my anxiety,” she says. “I treat it as a living part of me that needs to be acknowledged. It’s learning to leave the thread, to see and experience the grey. It’s being happy with nothing being quite right, but maybe things are okay.”

Now that she is able to have a full-time job, Jem has discovered that working benefits both her mental and physical health–and improves her ability to make art.

jematwork

Jem hard at work on her comics.

“Without a steady job I tend to sleep until at least noon and rarely get drawing before three or four anyway,” she says. “By filling my days with work I’m less likely to mess around online and actually get a decent amount of time in drawing most evenings before aiming for a sensible bedtime.

She’s filled with gratitude that she’s now well enough to support herself and her art.

“As every single artist and writer knows, eating is important. Having somewhere to live is important. Having a job that means these things are a guarantee is probably the single most vital thing to me being able to fill the rest of my time with drawing. While I do sometimes miss drawing while I’m at work, the payoff of being self employed just isn’t worth it for me. I need the structure.

It’s a privilege to be able to work in this way, and I am thankful every day I have been lucky enough for my physical health to come back to me.”