3 posts tagged “working with a chronic condition”

The ALS battle forces changes

Posted September 25th, 2017 by

Jim Burton in Dalton, Ga., in January 2015 while on a freelance assignment for a statewide newspaper. Photograph by Gibbs Frazeur.

A guest blog by member Jim Burton, the ALS Warrior

 

A harsh reality of progressive diseases like ALS is that your body is constantly changing. After my ALS diagnosis in January 2013, I noticed that the progression seemed to happen in stages. After losing some degree of capacity, I’d settle on a new plateau, which became my norm for a while. The plateaus have become shorter, and the declines have become more pronounced.

Neurologists call ALS a progressive disease, but to my family and me it’s digressive as my health declines. In turn, the digression forces change as today I can’t do what I did yesterday.

The biggest changes happened early on as I lost the ability to walk and began using a motorized wheelchair. As dramatic as the change appeared when I became a de facto paraplegic, the new plateau felt manageable. With a handicap-equipped van and hand controls for driving, I maintained most of my independence.

For several years after the diagnosis, I worked as a freelance journalist not only writing stories, which I could do from my home, but also going on location for the photographs. In one week, I traveled alone about 900 miles throughout Georgia and stayed in several hotels. Two years later, I had digressed to yet another plateau, and that independence became history.

Transitioning to a motorized wheelchair represented a radical lifestyle change. Now the disease has reached my shoulders, arms, and hands, creating new and different challenges.

Jim Burton in Dalton, Ga., in January 2015 while on a freelance assignment for a statewide newspaper. Photograph by Gibbs Frazeur.

Recently, I’ve made another major adjustment. Practicing journalism and doing location photography has become impractical. Just this year, I’ve lost the capacity to type, which I’ve done since the ninth grade. I now produce copy like this blog with talk-to-type software, and I’ve written four novels. The capacity to continue writing has kept me “in the game.” Though fiction is a new genre for me, I’m growing as a writer and continuing to exercise my creative capacity as a communicator. This new discipline keeps my mind sharp and my motivation high to press on and live as fully as possible even with my digression. Still, new challenges arise daily.

Jim Burton speaks with M.B. Howard, a former colleague, during the twenty-year reunion July 29, 2017, of a former Memphis-based nonprofit where they both worked. The trip from Atlanta to Memphis would have been impractical for Burton, so the organizers recommended an adjustment that allowed him to participate via Skype. Photograph by Bill Bangham.

In my home office, I have a workstation with a desktop computer and printer. When first diagnosed, I worked daily on my final doctoral writing project and used the printer constantly. Normal functions included loading paper, changing ink cartridges, loading documents into the feeder, and of course retrieving the printed pages. Each of those seemingly simple tasks now exceeds my physical capacity. The most frustrating challenge has been the inability to retrieve a printed piece of paper that lays on a shelf about four inches off the table. Unable to raise my hand that high, I discovered a way to work around that challenge. By placing my stapler beneath the shelf, I can put my hand there and then reach the printed paper. Another problem solved. These incremental changes that allow me to solve new challenges, create hope. And with every accomplishment, ALS loses.

Several years ago, I determined that I would not see myself as an ALS patient or victim. I’ve chosen to be an ALS warrior because I fight this disease every day along with thirty thousand other Americans and their families. Whether large or small, each victory matters.

I encourage you to remain determined each day in your battle to defeat ALS.

Jim Burton is a writer based in Atlanta who frequently writes about his ALS journey at http://life-bluezone.com/blog.html.

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Patients at work: Member Nancy on being her own boss

Posted January 10th, 2017 by

We recently launched a blog series about patients who’ve started (or are gearing up to launch) their own businesses, sparking a discussion around how to manage your health without giving up on your career goals.

Say hello to Nancy (@spicerna), who sat down with us to discuss how she finds a balance between living with bipolar I and expressing her creative side through her art. Nancy chatted with us about the kinds of projects she likes to work on, and why it’s important for her to be her own boss: “I need a job where I am the boss every day. There is an unpredictable nature about the illness…not a day that goes by to where I am not making judgment calls to maintain my health.”

Can you tell us a little about yourself and your diagnosis experience?

I have struggled with symptoms of Bipolar I, since I can remember. I really noticed the ups and downs in the teen years. And at age 16, I had my first psychotic break, (1 out of 5 breaks in my life.) I have always been an overachiever and had big dreams and goals for the future but the combination of everything that I needed to succeed broke me. My body and mind couldn’t handle it. There was never a balance of my life. I never took a break I was a workaholic. I slept just 3-4 hours a night most nights. I had as many successes, as I did years of crash and burn.  It was just hard for me to work a mainstream job. I can’t do deadlines very well, stress triggers Mania. I was in complete mania working a full-time job and going to school for 7 years of my life then in a complete depression for 8+ years as I worked each day to recapture my life. Since I had 5 times of extreme psychosis. It wears on your body. I just had to begin plans to do a 180*. I was choosing the path to the most resistant and not enjoying the ride along the way. There were many things that I was doing wrong. I needed the balance, peace of mind; love for myself and to not live in extremes.

I have a certificate in residential planning and I planned on having a career in kitchen and bath design but that is high stress and the 180* was to find that my hobbies and being an artist is more of a goal and where I should be headed now. If I could make that work and market it to make some income. Then I can kill two birds with one stone I could have my success and support myself and take care of my illness at the same time.

I need a job to where I am the boss every day there is an unpredictable nature about the illness there is not a day that goes by to where I am not making judgment calls to maintain my health. I have to take many brain breaks clear my mind. That gets in a way of a full time every day job.  So to work at my own pace is crucial. So I can work around my mind.

How did you first get into making art? What are some of your favorite projects?

I started cross-stitch at age 8 at the same age I would draw in 3rd grade floor plans of my favorite houses that we vacationed at. In high school I took drafting class. I was very into residential homes and design. Through school I loved anything design and art related and at age 12 I determined that would be my life goal, I wanted to get into homes and design the plans for them. Well that idea evolved and now the goal is to be an artist and create art for people’s lives. It took a long time to make that distinction. I guess that is part of the process of the journey.  My cross-stitch was an obsession growing up. I made over 45+ pictures most of them were gift to friends. By working with my hands and heart it was a release to use the needle and thread, very healing. Then after a while after I chased after my career for a while I realized that I wanted to get involved with other mediums so with no money for school I began to teach myself using YouTube for advice other mediums, to illustrate for cards and create paintings. Wherever my ambition will lead. I am interested in paper, wood and fabric. I am defiantly in the experimental stages, working on many different projects to see where that may lead.  Right now, I am drawing and gravitating towards architectural element and gardens.  The sky is the limit.

Where have you been able to sell your art so far? What are your plans for growing a business out of it in the future?

I was making and illustrating some cards for people around me I would go to market and sell my cards just for the experience and wow they sold like hotcakes and had some people pay $10 for one card and there were orders for batches of 12 cards for Christmas and finally I just got warn out with all the work and found better ways to market my cards. I have one idea to sell and make good money buy illustrating my cards then making copy’s at the printers then selling or making silhouettes on the Internet for Cameo cutting machine sell the rights to the company and then when people buy my silhouette on the web I get paid a percentage I liked that idea. All of this is going to take me a long while to manifest I am becoming an expert in my own field so I am gauging down the road. 

How does living with bipolar affect your creative process?

When I am in mania my mind is racing the world it is so much deeper and broader and I have so many ideas. I have so many ideas but there not concrete. On the meds I struggle with similar issues as in mania; plus to focus, concentration, comprehension, low energy. I do think clearer on the meds but the symptoms never go away. It takes much strength to break down and be in the mood to do art so I am surprised when I look over my work and see so much progress.  So maybe once a day do a little bit. It is hard when your mind is choreographing dance songs in my mind and you know how to make that happen but all the details of the work and learning everything to piece that together. I don’t have energy for that. But it goes through my mind. All I know I can do anything I set my mind too there is just isn’t enough time for it all in this lifetime. Sometimes I think that I have the illness to keep me down to earth instead of a balloon flying off into the universe I have so much internal power.

On the flip side, does the process of making art help your manage your health?

Art is passion: it is metaphysical and spiritual. It takes you places. Color, and creating: helps release your mind. It keeps me occupied, during this life we call on earth.  It take’s skill and the process of learning, growing and creating that specific look is a life long job so fascinating to find.

I can manage my health by getting to a place to where I feel at complete peace and feel like I am doing my calling in this world. I feel depressed and moody if I am not doing that. I need Art in my life.

Do you have any advice for others with chronic illnesses who wants to start their own creative businesses?

Do it for fun first for years then add the buying and selling part. That is what I am doing? I feel more prepared to sell my work that way. Do your research about the business end and start with small classes to help you understand the business world. Become and expert first and then the process will be less stress on you. Owning a Business is a risk and you want to do what you can to succeed.

Most of all love you and have some faith. There is power within your heart that is just waiting to break through. Believe in that every moment of every day. Love yourself first and foremost and love others around you. Give to them in increases the harmony. Don’t get trapped in the hole of oppression and burden, get out!! Then you can succeed in all area of life and be ready for your own business.

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