Tricia Downing | Paraplegic, Sports Woman & Novelist

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 Downing

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.

Visit Tricia: www.triciadowning.com


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.

‘Chance of Rain’ by Tricia Downing is now available to buy from Amazon

You Got A Friend In Me: The Importance Of Social Connections For The Chronically Ill

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.

Companionship

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.

Support

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.

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Perspective

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.

Interview | Spoonie Warrior

Saidee Wynn discusses life with chronic illness and her candid new book

Saidee Wynn, aka the Spoonie Warrior

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.

Saidee’s book is available to buy on Amazon


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