Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.
Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.
Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.
1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?
I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.
2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?
My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!
It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.
3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?
Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.
4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?
5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?
Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”
I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!
6. Has your attitude to disability, your own in particular, changed over time?
Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.
7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.
Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.
I would like to thank Shane for taking the time answer my questions.
While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.
I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.
I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.
For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?
My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.
Here are a few of my coping mechanisms:
1. Music therapy ~
Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).
(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)
There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!
Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.
He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…
3. Alone time ~
Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.
4. Get out the house ~
Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.
5. Avoid social media ~
It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.
This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.
Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.
Though I’d rather not admit it, I have a pretty big birthday coming up. In just over a week, I turn 30! It might not seem like much of a milestone to most people. But for those of us with muscular dystrophy, 30 is a big deal.
I’ve never really considered or cared much about age. Getting older has never bothered me, and I didn’t think I’d be fazed by reaching the big 3-0. But I’ll be honest, it is getting to me…just a little.
For various reasons, I’m not a fan of my own birthday at all. I’d rather it went unacknowledged and unnoticed. I hate any form of attention and am much happier when the focus is on other people. I’m definitely more of a hide in the corner type!
Back in October, I went on a five-day cruise to Amsterdam and Bruges, to celebrate my birthday. There are no other upcoming plans (at least, none that I’m aware of).
Those closest to me know I don’t like surprises (perhaps I am a bit of a control freak). So, if anything, all that’s left to come is a small family gathering – basically Sunday roast with the folks, the brothers, my sister-in-law and baby nephew. And that suits me just fine!
Muscular Dystrophy ~ A Life-limiting Condition
Accept it or not, the sad fact is, muscular dystrophy is a life-limiting condition. I’m aware of others who were told by medical professionals that they shouldn’t expect to live beyond the age of 20 (if that). In contrast, my parents and I were never given any indication whatsoever of my life expectancy. At no point were we told, ‘Carrie won’t reach adulthood’. Perhaps my consultants were being overly cautious. Perhaps they were just clueless! (I suspect the latter).
In a way, this allowed me to grow up in a state of blissful ignorance. For a long time, I believed I had just as much chance of growing old and wrinkly as the next person. It wasn’t until my late teens that I realised this wasn’t the case.
Now, I don’t want to get all deep and downbeat – just trying to keep it real (on the advice of certain people. You know who you are!).
Essentially, for better or worse, life has taught me to expect nothing. Expectation often leads to disappointment. These days, I try to go with the flow, I don’t make long-term plans or look too far into the future. I prefer to focus on the here and now.
Right now, I’m going to hold on to my youth for as long as possible by continuing to laugh at silly, childish things. I’m all about laughing, playing and having fun – believe me, I’ve had more than my fair share of serious!
And to anyone who doesn’t know otherwise, I’ll soon be 25, not 30 ~ thank’ya muchly!
Today is Remembrance Sunday. A century has now passed since the signing of the armistice, marking the end of the First World War.
11/11/1918 ~ the day the guns fell silent along the Western Front, and four long years of fighting came to cease.
‘The war that will end war’ ~ H. G. Wells
On the eleventh hour, of the eleventh day, of the eleventh month, a two-minute silence is held every year to observe and remember all who have fought and lost their lives in war, both past and present.
Above:‘Poppies: Weeping Window‘, Installation. Here at Hereford Cathedral in April 2018. Part of the 1914-18 NOW, WWI centenary commemoration #poppiestour.
Explaining Remembrance Day to children
Recently, a friend told me that her seven year-old daughter had asked why we wear poppies and what Remembrance Sunday means.
She didn’t really know what to say or how to explain it. So she asked if I knew of any age-appropriate books or films to give her an overview.
I’ll be honest, I was fairly stumped! She’s a mature kid, but still, she’s only seven.
How do you explain, to a young child, the concept of ‘poppy day’, and the importance of remembering those who fought in a World War that took place 100 years ago?
(If you’ve any ideas or suggestions, please leave a comment and let me know. Thanks!)
Last weekend, I watched the film War Horse (2011), based on the novel by Michael Morpurgo. I’ll admit, I cried.
It’s an incredibly well told story depicting the perpective of the English, French and Germans during WWI, via war horse Joey who travels throughout Europe, encountering numerous owners.
I had previously read War Horse the novel as well as Private Peaceful, also authored by Morpurgo. Though I wouldn’t recommend these titles for a seven year-old, they are, I feel, brilliant for anyone wanting to know about the effects of the Great War on individuals, families, relationships and communities.
(What books or films would you recommend for primary school children who want to learn about WWI and Remembrance Day?)
~ Please do let me know how you are spending this Remembrance Sunday ~
~ Are you attending a service?
~ Will you be thinking of relatives who served in war?
~ Do you have children with questions of their own?
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I was recently contacted by Orange Badge, who supply mobility aids, such as wheelchairs and mobility scooters, to holiday-goers in Tenerife. With expert knowledge, they offer free accessibility advice and information to ensure a stress-free stay in Tenerife.
About Orange Badge:
Established for over 20 years, the name comes from the original Orange Badge disability parking scheme in the UK.
Since 2003, they are the largest, most respected and professional mobility supplier on the island. Orange Badge provide unique products and free advice.
The Orange Badge team, who between them speak 7 languages, have lived and worked in Tenerife for over 60 years. they offer a unique ability to help you find mobility equipment and the most suitable places to spend your holiday.
Top 10 Hotels
1. Sheraton La Caleta Resort & Spa
Sheraton La Caleta Resort & Spa is a luxurious hotel in the picturesque Costa Adeje, just 200m from the beach. The terracotta coloured hotel boasts 284 spacious rooms with private terraces, 4 restaurants, 2 bars, a spa, fitness centre, and 3 pools.
2. Iberostar Grand Hotel Salome
Iberostar Grand Hotel Salome is a luxurious 5-star hotel. With stylish and modern rooms that have been recently refurbished, the Iberostar is an adult-only hotel that offers exciting cuisine, beautiful sea views, an infinity pool and spa, and even butler service for total relaxation.
3. TUI Sensimar Arona Gran & Spa
TUI Sensimar Arona Gran & Spa is just 800m to the buzzing centre of Los Cristianos and 800m to beautiful sandy beaches. This is a luxurious hotel with stunning views of the sea and harbour, 2 relaxing pools, and lively entertainment.
4. Gran Tacande Wellness & Relax
Gran Tacande Wellness & Relax is an elegant 5* hotel on the seafront in Costa Adeje. Dedicated to making your holiday as relaxing as possible, the hotel has 4 pools, a spa, restaurants, bars, lush interiors, and beautiful grounds for relaxing in the Tenerife sunshine.
5. Adrian Hoteles Roca Nivaria
Adrian Hoteles Roca Nivaria is centred around a family atmosphere. With fantastic sea views, 2 infinity pools, 3 restaurants, a lift that takes you down to the beach, and shuttle services to Playa de Fanabe and Costa Adeje, book this hotel for a relaxing and fun family holiday.
6. Hotel Villa Cortes
Inspired by Mexican hacienda design, Hotel Villa Cortes is located on the beach in Playa de las America’s golden mile, close to many shops, bars, and restaurants. Boasting 6 restaurants, a spa, a freshwater pool with waterfall and a saltwater pool, the hotel promises a fantastic holiday.
7. H10 Conquistador
H10 Conquistador is a contemporary, modern, and stylish hotel in Playa de las Americas. It benefits from 4 restaurants, 3 tropical pools, family entertainment, and access to both a shingle and sandy beach.
8. Hotel Paradise Park
Located in Los Cristianos, Hotel Paradise Park has stunning panoramic views of the town and the coast. It offers rooftop and grotto pools, beautiful gardens, and a shuttle bus service to the beach.
9. Adrián Hoteles Jardines De Nivaria
Located in Costa Adeje, Adrián Hoteles Jardines De Nivaria is a beachfront hotel with art deco interior, tropical gardens, and 2 lagoon pools. It has direct access to Playa Fanabe beach and benefits from 3 gourmet restaurants, a spa, and evening entertainment.
10. Mar y Sol Hotel
Just 400m from the sea promenade in Southwest Tenerife, Mar y Sol Hotel promises a lively and relaxing holiday with spacious apartments, 2 pools, restaurants, bars, and a gym.
Experiencing more joy might seem a long way off to you, or even impossible to achieve. However, you can improve your happiness simply by adapting your everyday activities, habits and way of thinking. It may sound harsh but it’s important you first choose to stop being a victim of circumstance and start being the hero of your own life!
This is your own unique journey, and you can still make it positive and fulfilling if you are determined enough. Below we have some ideas for finding joy in your everyday life, no matter what your disability, illness or condition. Take a look…
First thing’s first: you should not suppress or ignore your true feelings when you begin to feel them.
Inflicting self-judgement and criticism will only have a negative impact. However, this is not to say you should force yourself to feel positive all the time – this just isn’t realistic. We all get down and feel lost and hopeless from time-to-time. Allow yourself time to grieve for whatever or whoever you have lost throughout your life.
Healing Is Not Linear
Healing does not happen in a straight line – it isn’t linear or consistent. One day you may feel great, and the next day you might feel worse than ever.
Write Daily Gratitude Lists
It is hugely beneficial to keep a physical record of all that you are grateful for. Try to get into a regular habit of doing this everyday. It will keep your mind focused and positively proactive.
You might be grateful for your job, friends, family, your home, health and so on. These are just a few ideas to get you started. Try to be specific and review how many different things you can come up with each time you write your gratitude list.
Setting Daily Goals
When you get up each morning, try to set an intention for your day. How do you want to feel today? Is there a specific task or chore you’d like to accomplish? Setting daily goals or intentions can help your day run smoother. As a result, you should find yourself making faster progress towards improving your mood and well-being.
Appreciate At Least Three People Every Day
Whether it’s your partner or a considerate stranger – nurture the important relationships in your life.
Are you appreciative of the people who perform your home care services?
Appreciate The Small Things
You don’t have to have lots of money, possessions and exciting things going on in your life to feel good about it. Appreciating the really small things is important too. Whether you’re reading a good book, chatting with a friend, enjoying a hot cup of coffee or simply watching your favourite TV show – find the enjoyment and fulfilment. The way you frame things in your mind has a lot to do with how happy you feel each day.
Learn To Love And Accept Yourself
Most people find this tough, let alone those with limitations who maybe struggle with things that others don’t. Learning to love and accept yourself will likely be one of the toughest things you set out to do, but it’ll be one of the most worthwhile and important. Don’t compare yourself to others, and find things that you really love and appreciate about yourself every day.
If you want to meet like minded people and share stories and advice, joining a support group could be a great idea. Check out support groups in your area and visit them to see how you feel.
Accept Help If You Need It
If you need help, please don’t be afraid to ask for it – it DOES NOT make you weak. Taking care of yourself and getting other people to help take care of you, whether mentally or physically, is nothing to be ashamed of – quite the opposite. It’s natural to want to maintain as much independence as possible. However, seeking appropriate help and support will allow you to do this for much longer.
Develop New Hobbies And Find Things That Make You Truly Happy
Developing new hobbies is a wonderful way to find happiness. Perhaps you could join a book club, learn to play an instrument, write poetry, paint, draw or do something else with your time – whatever you want to do, just give it a try!
Exercise In A Way That’s Possible For You
You may not be able to exercise much, if at all, but there are likely a few things you can do. Rolling your feet in a circle or moving your head from side to side, for example. Whatever physical activity that is within your limits, do it regularly.
Eating healthily will make you feel good from the inside out. Learn how to read and understand nutritional labels and aim to get plenty of vitamins and minerals into your diet.
The dating world is a bit of a minefield, but it can be especially difficult if you have a disability. Unfortunately, there is still a lack of awareness and much stigma around some lesser known disabilities.
Able-bodied people may be unsure about acknowledging their date’s disability, for fear of causing offence. This lack of understanding, awareness and confidence often leads able-bods to avoid dating disabled people.
Regardless of ability or circumstance, there are great dating coaches out there who can offer guidance and support.
You might feel more comfortable, confident and secure in your own home, and therefore prefer to date in this familiar setting rather than in public. Let’s not forget, going out to eat at a restaurant is expensive when you factor in drinks as well. You might not be able to afford such a social luxury, thus adding even more stress to the situation. For this reason, conducting your dates from date home is sometimes better.
Of course, it’s not sensible or advisable to first meet somebody at your home (even if you’ve spoken on the phone). But once you feel safe, reassured and familiar with each other, a date night at home could a viable and appealing option.
Here are some great ideas for a stay-at-home date:
A movie night is the classic at-home date idea, but why not take it to the next level and give it a bit of a theme? Pick a movie series or genre you both love and hold an all-night movie marathon. Order a takeaway (to make life a little easier) or maybe cook your signature dish to impress your date.
Watching a French film, why not cook some French food to go with it? Make it more of an occasion!
Cooking together is another fun idea – it’s romantic and will encourage bonding, interaction and tactility.
Turn Your House Into A Wine Bar
Going to a fancy wine bar may seem great, but it’s going to cost a fair amount of money. However, if buying booze from the supermarket, you could create a mini wine bar of your own. Get a few different bottles, they don’t have to be expensive, and maybe splash out on a classic bottle of moet chandon to make the night extra special.
This is a particularly good idea if you’re nervous about a date and want to make it a bit more casual. Invite other couples along and have a games night. This way, you’ll still be able to spend time with your date in a fun setting, minus the added pressure of being alone. Being part of a larger group will aid social interaction and enable the conversation to flow more freely and without any potential awkwardness.
So, as you can see, stay-at-home dates can be just as fun, engaging and romantic as going out, (and they’re a lot cheaper too, which is always a bonus!).
Fiction novel ‘Chance for Rain’ shows disability experience for what it is: another version of the human experience
Tricia Downing is recognized as a pioneer in the sport of women’s paratriathlon, and as the first female paraplegic to finish an Iron distance triathlon. She has competed both nationally and internationally and represented the United States in international competition in five different sport disciplines: cycling (as a tandem pilot prior to her 2000 accident), triathlon, duathlon, rowing and Olympic style shooting. She was also a member of Team USA at the 2016 Paralympic Games.
Tricia featured in the Warren Miller documentary, ‘Superior Beings’ and on the lifestyle TV magazine show, ‘Life Moments’. Additionally, she is founder of The Cycle of Hope, a non-profit organization designed for female wheelchair-users to promote health and healing on all levels – mind, body and spirit. Tricia studied Journalism as an undergraduate and holds Masters degrees in both Sports Management and Disability Studies. She currently lives in Denver, Colorado with her husband Steve and two cats, Jack and Charlie.
Love and disability: Do the two actually go together? In the eyes of 32 year-old Rainey May Abbott, the uncertainty runs high. But with a little arm twisting, this paralympic skier embarks on an adventure that takes her completely out of her comfort zone…
Tricia Downing: “Rainey May Abbott came to me one night as I was drifting off to sleep and wouldn’t leave me alone – until I got up and started to write.”
“I never intended to write a fiction novel. My first book, the memoir, ‘Cycle of Hope’, was a feat in itself for me. I never had enough confidence in myself that I could write and publish a book. Fortunately, my expectations were reasonable and I really had only one goal with that book; to share the complete story of my accident with those who attended my motivational speeches and were intrigued enough to want to know more after hearing me speak on stage for an hour.”
“On September 17, 2000 I sustained a spinal cord injury. At the time, I was a competitive cyclist and was out on a training ride with one of my friends when a car turned into our path. My training partner barely missed the car, as I hit it square on. I was launched off my bicycle, landed on my back on the windshield, and fell to the ground. I was paralyzed on impact.”
“I was 31 at the time, and just beginning to get my stride both professionally and personally. The accident turned my life upside down. I had to learn to live life from a wheelchair, use my arms instead of my legs, create a new body image and not only accept myself despite my disability, but to believe others would accept me too.”
“Will anyone actually love me if I have a disability?”
“Fortunately my question was answered only four years after my accident when I met the man who would become my husband. However, I have found through talking to many other women in my position, that this concern is not only real, but seems to be pervasive in the disability community. Is it possible to find love when you don’t fit the mold of the typical woman regarded as beautiful in our society?”
“When I imagined Rainey in my dreams that night, I knew her plight and I could empathize with her fear when it came to relationships. And with that, the story of ‘Chance for Rain’ was born. So too was my desire to see more disabled characters in literature.”
“I think, so often many people with disabilities feel invisible. We aren’t seen on the cover of magazines, in the movies or books. Unless, of course, we’re the tragic character or overly inspirational and defying all odds.”
“My goal with Rainey was to show that she could have a normal existence while embodying a fear that is not unique to women with disabilities. I think at one time or another, every woman has grappled with her body image or desirability. Rainey just happens to have another layer of complexity to her: her life is not as common as the popular culture ideal.”
“I hope my novel will give readers a new perspective on disability, love and relationships as I continue what I hope to be a series of stories featuring characters with different disabilities, navigating the ordinary, complex, and the unknowns of life and love.”
Chance of Rain
Elite athlete Rainey Abbott is an intense competitor, but inside she feels a daunting apprehension about her chances of finding true love. Her life as a downhill skier and race car driver keeps her on the edge, but her love life is stuck in neutral. A tragedy from her past has left her feeling insecure and unlovable.
Now that she’s in her thirties, Rainey’s best friend Natalie insists she take a leap and try online dating. Rainey connects with ‘brian85’ and becomes cautiously hopeful as a natural attraction grows between them. Fearful a face-to-face meeting could ruin the magic, Rainey enlists Natalie to scheme up an encounter between the two whereby Brian is unaware he is meeting his online mystery woman. Rainey is left feeling both guilty about the deception and disappointed by something Brian says.
When they finally meet in earnest, Rainey’s insecurities threaten to derail the blossoming romance. As she struggles with self-acceptance, she reveals the risks we all must take to have a chance for love.
Isolation and loneliness are issues affecting many people living with chronic illness. You may live in central London, surrounding by people and yet still feel completely alone and separate from the outside world. Anxiety, depression and other mental health conditions, along with physical limitations can make it incredibly challenging to leave home. However, social interaction and the opportunity to form meaningful relationships is something we all need.
Read on to find out why and how to nurture more of this in your life, no matter what physical and mental health issues you are facing.
Even those of us who enjoy our own company and identify as introverts, experience a sense of loneliness from time to time. Ultimately, we all benefit from and appreciate the bonds of friendship, family and loved ones with whom we can connect, interact and share our lives.
Life with chronic illness can be isolating for a number of reasons. It is difficult, sometimes impossible to be spontaneous and free. As a consequence, one’s social life is often impacted. You end up missing out on events, occasions and turning down invitations even though you may not want to. Furthermore, it can be hard for other people, who have no knowledge or experience with chronic illness, to understand what you are going through and why you are unable to involve yourself as fully as you’d like to.
It is therefore useful to find a real-life group or an online forum that is focused on the specific condition(s) you live with. This will help provide support and information, enabling you to better manage your issues, whilst also connecting you with others in a similar position.
Of course, it’s not just companionship that makes social connection vital to those suffering from chronic conditions. Many of us need other people in our lives to support us directly with day-to-day activities.
This takes many different forms – from employed support workers to help with personal tasks like washing, dressing and feeding, to family members who voluntarily play their part. Others in your life may take on a less direct, but still supportive role in helping out with childcare, for example. They might even assist financially, by offering to be a guarantor should you need a loan. Find out who can be a guarantor by clicking on the link. This option is worthy of consideration, especially if you are unable to work full-time because of your condition.
Finally, personal relationships and social connections are so important because they give us perspective. After all, it is often all too easy to fall into a negative thinking pattern when you have a chronic illness. But interacting with as many people as possible, both in real life and via social media, will offer comfort, companionship and the realisation that we are not alone in feeling low, frustrated and isolated.
In addition, pursuing social connections in this way can present us with the rewarding and mutually beneficial opportunity to reach out to help other people. Something that can help tip the balance from feeling like we are a passive sufferer, to someone who is making a valuable contribution to society.
Saidee Wynn discusses life with chronic illness and her candid new book
32 year-old Saidee Wynn is the author of a new book about life with disabilities and chronic illness. A product of the successful blog, Spoonie Warrior, the book is a candid first-hand account that will make you laugh, cry and shout, “me too!”
1. Saidee, could you please tell us about yourself and your experience with POTS, EDS and PTSD?
I currently live in Atlanta, Georgia with my husband and six year-old daughter. Before POTS(Postural orthostatic tachycardia syndrome) hit me hard, I was a middle and high school teacher. I taught history, literature, and drama. I now work part-time as a copywriter and do my own writing whenever I actually have the energy to do so.
When I first got sick with POTS, I couldn’t keep up with my regular work load. My boss was very accommodating and worked with me. I started working part-time on what we hoped was just a temporary basis. That was in the middle of the school year. Towards the end of the school year, I knew that I’d have to make a decision about whether or not I could continue to run the classroom as a lead teacher.
I wasn’t getting any better and my doctors said they weren’t sure I would, so I made the decision to step down as a lead teacher. I continued to work part-time for a little while, doing about 3 hours a day, but after a year of attempting to do that, it was still too much.
Since my health is so unpredictable, it was difficult to stick to any kind of set schedule or keep up with deadlines. I ended up missing the last six weeks of my final year of teaching because of an injury. That was just over a year ago, and I still miss it.
I’ve had EDS (Ehlers-Danlos syndromes) my entire life, I just never knew it. EDS causes a lot of chronic pain as well as frequent dislocations and subluxations. There are a lot of things that I used to think were normal that I now know aren’t normal. Most things have to do with how the body moves. With EDS, our collagen is faulty, and collagen makes up the tissue that holds your joints in place. Actually, collagen makes up a good portion of your body.
Anyway, I always knew I was more flexible than other people, but I didn’t always realize to what extent. Those with EDS have a habit of sitting in weird positions, especially keeping our legs up on a chair or tucked in. I didn’t realize this wasn’t a normal thing that everyone did until people started pointing out to me how weird it was that I did that. I started paying attention to others and noticed no one else did it. I also didn’t realize intense joint pain wasn’t normal. I was always told it was “growing pain” and just assumed everyone else was better at dealing with it than I was.
I still discover strange things that aren’t really ‘normal’ all the time. My husband and I have a game of sorts where I’ll do something and ask, “EDS or normal?”. It usually means moving my body in some way that I didn’t know others couldn’t do. Also, being able to zip up my own dresses or put sunblock on my own back. I thought people were just being lazy when they asked others to do that stuff for them. I didn’t realize it was because most people legitimately can’t reach.
I’ve also had PTSD (Post-traumatic stress disorder) since childhood, but never recognized the symptoms or the depth of my trauma until a few years ago. It affects how I react to the outside world and other people. My brain can perceive danger even when there isn’t any danger around.
POTS didn’t really hit me until about 2.5 years ago, but it changed my life completely. I used to be an incredibly active overachiever, and now I celebrate having the energy to take a shower! POTS is a type of dysautonomia, which is a dysfunction of the autonomic nervous system. Think about everything your body does without you thinking about it, like breathing, digesting food and circulating blood. That should give you a rough idea of what parts of my system are affected – basically all of them.
Obviously, all of these conditions have a pretty big impact on my life. I can no longer hold down a full time job. I can’t dance, act, or sing like I spent my whole life doing. I’ve had to create a totally new ‘normal’, which isn’t easy to do and definitely involves a grieving process. But, somehow, I’m making it work.
2. You are also a wife and mother to a young daughter. How does your disability impact on family life and how have you all adapted?
The biggest impact is that I can’t do everything I would like to do with my husband and daughter. I can’t go play outside, have dance parties, ride bikes, or even play in the park. I have heat intolerance and live in the south, so I’m pretty much restricted to the indoors most of the year.
When my husband and I were first dating, we used to take a lot of road trips together, even going camping on the beach, but now I can’t handle long car trips. We mostly just spend time watching Netflix and Hulu.
Matt, my husband, picks up a lot of the slack as far as doing the things I physically can’t do. He does all the driving, shopping trips, and play time duty. While I can’t do all the physical things I wish I could, I can still be there for my family, emotionally. We read together, watch movies, laugh, and play (gently, of course).
My daughter still sometimes struggles with the fact that I can’t do everything she wants me to, and will sometimes lament by saying, “I wish you weren’t sick”. Despite this, we still have a very strong relationship. It’s pretty normal for kids to wish something about their parents was different, right?
3. How do you explain your condition and limitations to your young daughter?
There’s no one way. Every day she gets older, bigger, and smarter, which changes how we can talk about my illnesses. She knows I have “chronic illness” (yes, she actually uses those words), and that it means I’m always at least a little sick. But some days I feel better than others.
She also knows that I get dizzy when I walk or stand too long, and can’t be around lots of bright lights and loud sounds. When we were getting ready to go to her kindergarten graduation she said, “Mommy, it might be loud, so you should probably bring your earmuffs”. It was sweet.
There are two great books on Amazon, written by Moms with chronic illness, that we sometimes read. This helps her understand a little better. They are Mommy Can’t Dance and Why Does Mommy Hurt?
4. When and why did you decide to blog about your life and experiences with chronic illness?
I’ve used writing as a form of self-expression and therapy my whole life. When POTS came along and I suddenly couldn’t do any of my other passions anymore, I really leaned into my writing.
One day, I got the idea to start a blog and before I knew it I had bought a domain name. I thought I’d be lucky to even get one reader, so I’ve been overwhelmed by the response to my writing.
My goal has been to keep writing as long as I enjoy it, and I’m still loving it. Although, I have had to take breaks due to health issues or because of things going on in my life, I haven’t given up on it yet.
Most popular blog posts: “Why You Should Stop Spreading Inspiration Porn,” “Disabled: Say the Word,” and “Dear Doctors, No It’s Not All In My Head.”
5. In what ways have you benefitted from blogging and how does your blog, Spoonie Warrior, helps others?
I get so much from blogging. It gives me a great outlet for my experiences and a sense of purpose. I’m able to connect with other people and feel like I’m making a difference in some small way. The greatest feedback I get from my writing is, “oh wow, you too? I thought it was just me!”
I like to tell it how it is, and give a real look at life with chronic illnesses, rather than the polished, sugar-coated version we often see. People seem to need to see that. It helps them feel less alone in their struggles, which is a big deal because life with chronic illnesses can be so isolating.
I think it’s important to remind people that everyone is affected differently by chronic illnesses. Just because I was unable to continue teaching, it doesn’t mean someone else with POTS won’t be able to, so don’t be discouraged. And just because I’ve been able to blog and publish a book, it doesn’t mean others should feel ashamed for not doing the same.
We all have different levels of ability and this can change with every passing moment. So, try not to compare yourself to others or get bogged down with what we think we should be doing. I don’t ever want to be the example someone’s doctor/parent/teacher uses to say, “well, she could do it, so why can’t you? You’re just not trying”.
Do what you can, when you can. Don’t put your health at risk in order for others to feel more comfortable with your abilities.
6. Can you tell us about your first book – a collection of short essays – entitled, ‘Tales of a Spoonie Warrior: Chronicles of the Chronically Ill’.
I wrote the book because there isn’t a lot of literature about life with chronic illness/disability, actually written by someone with a chronic illness and/or disability.
There are a lot of self-help books and novels turning the lives of disabled people into inspiration porn or tragedies, but not much about the everyday realities of our lives. That’s a book I would have loved to read when I was first diagnosed! And, they say you should write a book you would want to read, so I did.
It’s mostly aimed at other people with chronic illnesses and disability, however, there’s also some stuff in there for healthy people who just want to know more about our lives and struggles.
The tone is very conversational. Some of it is funny and sarcastic, some of it is gut-wrenchingly sad, and there is also anger. All of it is very personal. It reads like you’re sitting down to coffee with an old friend. I think readers can expect to find themselves within the pages of my book and walk away from it knowing that they are not alone.