Where poets, writers & artists won’t let chronic illness stand in the way of creativity
Welcome to Poet’s Corner (& Artists too) ~ Issue #29
From our Editor:
We are going to be doing something very different this time by featuring a Sports & Activities Issue. We hope to highlight that even though living with chronic illness can be challenging, it does not have to keep us from doing the physical things we enjoy so much. Even if you can only walk around the block, or do your exercises sitting in a chair, you are doing something physical.
Every person featured in this issue lives with the day-to-day struggle of living with a chronic illness, perhaps even more than one. One thing they all have in common: Living with chronic illness does not define who they are. I just want to mention, that titling this issue ‘Sports & Activities’ was the idea of Dr. Ben Nowell, PhD, Director of Patient-Centered Research. Thank you Ben.
Our special guest is Dina Neils, Titanium Triathlete, who is CreakyJoints SpokesAthlete and a featured CreakyJoints Blogger. Dina, who offers a lot of inspiration to so many out there, recently qualified for the USA Triathlon Nationals! Congratulations, Dina!
I hope this issue will be a real source of inspiration, to each of our readers out there. If you live with a chronic illness and enjoy creativity, please feel free to contact me at [email protected]
CJ Poetry Editor
In this issue:
Heart of a Champion (Story by Dina Neils, Titanium Triathlete & CreakyJoints SpokesAthlete)
Why I Create (Story by Jennifer Taft, featured artist)
Why I Ski (Story by Alan Brewington)
Walking to Victory (Story by Brenda Kleinsasser)
Dina Neils: Her Story
“You will never run again and you will be in a wheel chair by the time you’re in your mid 20’s.”
Not willing to accept that diagnosis, Dina Neils told the doctor that she was wrong and walked out – she was 18. For 12 years Dina battled RA (rheumatoid arthritis, an auto-immune disease with no cure that causes chronic pain and inflammation affecting joints and organs throughout the body.) RA deteriorated her hips – nothing but bone grinding on bone. Dina, a beacon in the arthritis community, has since had two total hip replacements, has learned how to walk again (twice), and literally swam, cycled, and ran herself into remission. Dina achieved remission from Sept 2013 – Sept 2014, and is fighting every day to continue to do what she loves – triathlon.
At the age of 18, Dina was an accomplished long distance runner embarking on her first year of collegiate competition. While training for cross country season, RA started in her foot – within weeks chronic pain spread to her toes, knees, hips, hands, elbows and jaw. In a couple of months Dina went from being a healthy athlete to becoming disabled. Even with an arsenal of the best medical treatment, (daily pain killers, steroids, cortisone, weekly self injections, chemotherapy, and monthly infusions), the nature of the disease seemed never-ending.
Over the years no matter how difficult the fight became, Dina never gave up. Despite a 12-year battle with RA, Dina has continued to defy all odds to train, compete and act as a role model. Dina’s journey back to running has been remarkable – and it has only just begun. Within the last two years, Dina has completed 12 races (triathlons and running races), many with top age group finishes and medals, in addition to a couple of top overall female achievements. Dina’s main event is triathlon, and her ultimate goal is to make Team USA. Dina has also set her sights on completing her first Ironman 70.3 in 2016.
Dina’s passion to help others and “never-give-up” attitude has enabled her to inspire people who are battling adversity to pursue their dreams and not allow a medical diagnosis to detour them. As the official CreakyJoints SpokesAthlete, Dina represents CreakyJoints at athletic events to raise awareness of RA, educates local, state and national legislators about issues and legislation important to arthritis patients, blogs about her racing, education and life experiences with arthritis. Dina is also an Arthritis National Research Foundation and Arthritis Foundation advocate, and is also on the Racing for a Cure team (which helps raise funds to find a cure for arthritis).
Over the past couple of years, Dina’s visibility as an inspirational and highly motivated public figure has exploded. Dina has been featured in international publications, including The Platform Magazine, Everyday Health, LAVA Magazine, Good Day Sacramento, Arthritis National Research Foundation, Arthritis Digest, and many others.
As an infant Dina was adopted out of the foster care system by her loving foster parents. They treated her as their own and gave her the chance at a better life. Her parents continued to foster children in need for over 20 years – providing a safe haven and a nurturing environment. She grew up in Antioch, CA, a small city in the East Bay Area. As an honor student, Dina excelled in the class room with little interest in sports until high school – where she joined the cross country and track team. Junior year, she earned a spot on the varsity team – one of the top ranked teams in the state. Dina went on to join the cross country team at California State University of Sacramento. In 2007, she graduated with a B.A in Public Relations and a minor in Journalism.
Dina currently resides in Elk Grove, CA and trains with the Elk Grove Triathlon Club. Every day, Dina lives by these words: “I want to inspire people. I want someone to look at me and say, “because of you I didn’t give up.”
Dina Neils – Titanium Triathlete
Arthritis Foundation Ambassador
Here is Jennifer in her own words:
I had always been creative including photography, drawing, and painting. I tend to believe it’s a genetic thing, as my grandmother painted wonderful paintings which I don’t believe I appreciated their beauty, until I was an adult. They reminded me of Grandma Moses who painted the beauty of Vermont.
My mother also drew and painted and left it behind as the responsibilities of being a “grown up.”
I had in high school actually failed an art class as I was not good at on the spot creation and following the confines of expectation. I had drawn and created, as my children were growing up, with sometimes different art forms. When I was diagnosed with rheumatoid arthritis, I had no idea that it would inhabit every facet of my life and suck away my love of creativity. The dark times we’ve all been there the doldrums of RA. It has hills and valleys. I rediscovered my passion after breaking my foot. Although my hands do shake and hurt making details harder, I have found that creativity and art have motivated me to maintain Jennifer! Not lose her to the RA monster that can easily consume. I adapt on bad days, as oil pastels are more forgiving. Good days pen and ink. Paint boosts my moods mixing joyful colors. Seeing things thru creative glasses! My biggest advice to those with RA, is to find a passion and adapt, find your inner joy, creativity brings me a sense of purpose and challenge to conquer. I have even sold a few pieces of my art which is the ultimate compliment!
So find your passion, go out experience the world and the good days, you will appreciate so much more.
Editor’s Note: Alan Brewington ~ Alan is going to share his love of skiing with us. I work with Alan, as we are CreakyJoints Regional Outreach Managers. I really have to give Alan credit for this issue, as he thought it would be a good idea to feature those who enjoy sports, even though they struggle with a chronic illness. Alan also authors a blog, Pain Talks, but DOES NOT WIN! http://www.paintalks.com/
Here is Alan’s story, in his own words:
Why I Ski
by Alan Brewington
“If you don’t do it this year, you will be one year older when you do.” ~ Warren Miller
Any post about why I ski has to start off with this quote from the famous ski film producer Warren Miller. His movies are skiing, tradition, fun, and stupidity all rolled into one 2-hour introduction to each winter. I can’t remember the last time I did not start the ski season off by watching his yearly film. Today I’m more determined than ever to keep this tradition alive and the sport of skiing a part of my life no matter where my disease path might take me or for however long my adventure in life might last. To put it another way, you can have my skis Arthur (my nickname for arthritis) once you pry them from my cold dead hands!
I started skiing at 5 years old at my local resort called Bogus Basin Ski Resort. Bogus is only 16 miles from the base of the hill but that ride does include over 100 turns. For those of you that have never been to Boise Idaho (my hometown), Bogus is very easy to spot from the valley in the surrounding mountains. The ski resort is a huge part of Boise culture and appeal because of its proximity to the city. You can’t live in Boise without at least once driving up the 16 miles to check it out.
Growing up I was lucky; both of my parents had been skiing before I was born and my arthritis issues would not appear for years later. The ski bug is understood well in my family. This meant that getting to try skiing was not a difficult sell. I have no memory of how skiing was first introduced into my vocabulary, all I know is that basically the only thing that has slowed me down somewhat since I was 5 has been some of my various surgeries. To give you a better idea of my passion, yes I’m bragging here too, I had my right hip replacement on October 23rd of last year and went skiing on New Years Eve. Stupid = Yes, Fun = HELL YES!
My passion towards skiing led me to become a ski instructor for about 10 years. Teaching skiing was incredible! Watching someone’s eyes light up as they finally make their first turn to a stop or seeing the smile on my student’s face as they shred their way down a mogul run was as addicting as skiing itself. Being a ski instructor also helped me to take my own personal skiing to the next level. I was now making turns down runs previously thought only possible in a Warren Miller movie.
In the summer of 2003, my life as a ski bum changed rapidly. While rock climbing at the Black Cliffs, which is just outside of Boise, I fell about 15 feet and hit the deck. Luckily, I was with 2 other friend’s at the time who remained remarkable calm and collected despite seeing my wrist sticking up in the wrong direction and non stop blood coming from my head. They got my off the cliff, into my car, and rushed me to the emergency room. By the time I left the hospital 2 days later, I had 10 screws and a plate in my left wrist and 6 staples in my head. The entire left side of my body was an odd color of jet-black, blue, red, and yellow (crushed and destroyed red blood cells make for colorful bruises my doctor would later tell me).
As you can probably imagine, the trauma associated with that accident has played havoc with my memory during that period. I do not remember if I made it up skiing that winter or not although I think I managed it once. My teaching career was now over though. Teaching full-time was hard on my body when healthy; I was no longer healthy physically or mentally thanks to that fall.
Today my arthritis resume includes inflammatory arthritis, gout, posttraumatic osteoarthritis, spondylarthritis, ruptured disk, bulging disk, pinched nerves, facet arthritis, and chronic pain. This definitely has changed the reasons why I ski. Skiing is now more than just a hobby, it is one of several ways I need in order to fight this horrible and confusing disease called Arthritis. It does everything from reducing my stress, strengthens my passion for life, and keeps me active.
As odd as it sounds, the 16 miles and 100 plus turns up to Bogus is long enough that it almost feels like I’m going on a road trip every time my friends and I go skiing. There is enough time during the drive that we can complain about work, life, girls, or now our own health yet arrive at Bogus smiling and ready to turn. The 16 mile trip forces us to leave our lives temporarily behind in Boise so we can return to a state of being kids on sticks again in nature. As anyone with chronic pain issues will tell you, this is more addicting than any narcotic. Pure fun and sport is an amazing pain reliever. Side not, I would like to take this opportunity to brag again. I’ve biked to Bogus before on my road bike. With some luck, I would like to attempt that again this year.
As a skier who started at age 5 plus has 10 years of ski instructor knowledge under my belt, I have an advantage over most patients. I understand the sport and have obtained a skill level that most people, let alone patients, won’t. This is definitely reflected in the runs I choose to ski/photograph and equipment that I buy. However, I STRONGLY BELIEVE that every patient should try making some turns at least once in their lives. When done correctly, skiing is a relatively safe sport that offers so much in return. Skiing extreme is anything that gets an individuals heart racing or makes them smile bigger than they thought they could, whether it’s on the bunny hill or with my friends and I it is entirely individual dependent. That is the biggest misunderstanding of the sport I think. All patients should have at least one extreme run under their belts simply for the pain relieving aspects of it.
The one draw back to skiing with rheum issues is that sometimes the mountain, with rheums help, will win the day. By winning, I mean they will cause pain that wasn’t there earlier. I’ve had many days where I’ve lost big despite my knowledge and experience. There are days where I only make one run because my hips, knees, neck, or something else simply does not want to be at Bogus. Going home after only one run is tough, but no tougher than any other aspect of this stupid disease.
These types of days are depressing and hard on me mentally I won’t lie, but it is no different than not being able to tie my own shoes because of hand swelling or not having enough energy to shower. Life with a rheum issue is always a battle of can or cannot. I choose to play this game in nature because the reward of can has sustained me mentally for weeks at a time. With skiing, unlike other sports I think, all it takes is one picture perfect turn and my pain no longer matters for a moment in time. That moment, however long, is pure gold!
Famous mountaineer George Mallory, who when asked why he wanted to climb Mount Everest, responded by saying “because it’s there”. That is a perfect quote to end this post on. It is incredibly easy to forget all about my diagnoses and medications when my body and skis are working together. My days of turning like I did when I was an instructor are over because of my disease but I still can hold my own against most other skiers. On good days, skiing becomes more about me conquering the mountain, not about when I need to take my next round of methotrexate. I can concentrate on skiing just because it’s there, nothing more and nothing less.
I have lived with rheumatoid arthritis for almost 24 years. For me, moving is so important to keep from becoming so stiff. I have always enjoyed walking, but it became a challenge after being diagnosed with RA. Four years ago, I was diagnosed with a torn tendon in my right ankle, and had to wear an air cast for 6 weeks, even to bed. It healed up nicely, but I might have to have some surgery down the road. I am trying to avoid that as long as possible, so I got fitted with good orthotics and wear good walking shoes.
Several years ago, I started walking to and from my place of employment once again. It averages to about 15 minutes, twice a day, usually 5 days a week. I started what I call the RA Games, in which I keep track each week, how many times I actually walk to and from work. If I complete a whole week, then I get 10 points. Most weeks I kick RA’s butt. I live in North Dakota, so I walk in all kinds of weather, so the last few years, I invested in some ice treads, which help immensely.
Last year our clinic, which I am employed with, was having a 5k Walk/Run for a fun activity on a Monday evening in August. I thought I had been doing enough walking by this time, that I decided to go for it. I am happy to say, that I completed it in 55 minutes, with no stops and even at the last mile, I was actually speeding up.
I was so proud of myself for doing this and I plan to do it again, as I am sure we will have it this year, as it was a huge success. I also do full range of motion twice a day, pretty much every day. I am also a six-year brain tumor survivor and one of the things that my neurosurgeon wanted me to do, was to go for short walks after my craniotomy, as I was told, that it stimulates the brain. That was great, because I love to walk. So you see, doing a little of something not only helps to stimulate your brain, but it could also make you feel better in the long run. My theory is, even doing a little exercise, whatever you can handle, is better than nothing at all.
We hoped you have enjoyed this very special Sports & Activities Issue.
Next month, we will be featuring RA and Fibro warrior, Elizabeth Wald, who handcrafts jewelry from Stones In Harmony.