The Common Thread

 

by Kim Griffiths, PXEer
This article first appeared in the September 2013 eNewsletter.
 


Kirk Waters will amaze you with all that he has accomplished in his relationships and his career since going legally blind due to PXE. His optimistic outlook and his passion for life will inspire you whether you are someone with PXE going through your own health journey or someone who loves a PXEer. The Common Thread is a not-to-be missed article about the courage to continue on even when life isn’t being kind.


 

Kirk Waters

Recently I had the pleasure of interviewing a fellow PXEer, Kirk Waters, a new resident of New Mexico, USA. Kirk has led such an interesting life that I didn’t know where to start with this article. After my interview I kept asking myself what is the common thread in Kirk’s life? I knew if I kept asking that question, the answer would come to me.

The common thread is this: Through it all, Kirk hasn’t just been adaptive; he’s been very experimental with his relationships, willing to try one new thing after another, all in an effort to get the most out of life despite the loss of his central vision due to PXE. This has included his relationship with his wife, his career, and his religion. Kirk’s perspective on relationships is so optimistic. He has a wonderful personality that exudes hope for those who might be struggling on their PXE journey.

Kim Griffiths: When did you find out you had PXE and when did you lose your eyesight?

Kirk Waters: A biopsy was taken from my neck at 12 years old. The doctors told me that I had chicken-type skin around my neck due to PXE. I didn’t know until I was 25 and in the military what possible physical challenges were associated with PXE. One doctor told me that I most likely would be legally blind by the age of 45. I started losing my central vision at age 41.

Kim: What is your vision now?

Kirk: I am even worse than being legally blind. I am “count fingers” at two feet in both eyes. I have scar tissue from four thermal laser treatments in my left eye and two in my right eye. At night, I now use nonvisual skills when I’m in unfamiliar places because I don’t see curbs, holes or objects in my path. I have issues with glare and fluorescent lights. Shadows can cause blind spots, so low vision skills are not useful to me in dark areas.

Kim: One interesting comment you made is that not only do many marriages struggle when one of the spouses becomes disabled, but that many of the marriages actually fail. Your transition of going from a fully sighted person to being legally blind, all within six months of your marriage, was not for the faint of heart. The fact that you and your wife worked through your disability and have recently celebrated your 10-year anniversary is a wonderful story. What advice would you give other PXEers and their spouses whose marriages are strained by the PXEer becoming disabled?

Kirk: I am working on a book and a documentary regarding this topic. I was told that 78% of married people who are diagnosed with a disability become divorced. The two people in the relationship must know that when one is diagnosed as disabled, the other WILL go through the phases of grief and loss. The first two stages are denial and anger. It is common for the newly disabled person to direct his anger and frustration onto the other partner, who is trying to cope as well. For example, once a man lays his car keys down for the last time because of legal blindness, his ability to provide for his family and to function independently is now uncertain. His wife is now understandably questioning her security while she also has to deal with the emotional frustration of her husband.

An issue for us was that my wife Deborah didn’t know when to help with something or not help with it, especially when I was very frustrated. The key is for the spouse NOT to take over and just do it. Instead, the two need to work together and talk about alternative ways the task could be done.

The title of the book I am writing is The Dance with Blindness. You and your spouse must learn to dance together again. The first few years in a marriage can be very rocky and require lots of adjustments. It is similarly rocky at the onset of a disability.

There must be alternative skills training for the person with the disability so that he doesn’t become too dependent on his spouse. A healthy interdependence can, nevertheless, be established. This is the long life dance we do as a couple. The dance has enabled Deborah and me still to experience times of intense fellowship!

Both spouses must have boundaries and be able to say that she needs to take a walk and process whatever is triggering her emotionally. Cueing is important. For example, never use the phrase “you should…” but instead consider using the phrase “I feel like…”

Kim: Can you share a bit about the vision rehabilitation and career training you received in Louisiana? The program is so unique that I think the PXE community would be very interested in knowing about the options that may be available to them.

Kirk: Initially I went to a local state school for blind training. The training would have made me dependent on my wife for most things, including travel. Later, I attended a conference run by blind people who were continuing in their professional lives, working in their fields as attorneys and business owners. The director of the state blind services was there, and he was a very independent blind person. Back at the state school, I asked to be trained non-visually, as though blind, so that when I was out at night, I could use alternative skills instead of low vision skills. They refused to teach me and stated that the school I was attending was not a National Federation of the Blind (NFB) training center where I could be taught such skills. At that time, I did not know what NFB was. I just wanted to be able to continue to be independent and work.

Once I was denied access to be NFB trained, I called the state director and he sent me to the Louisiana Center of the Blind (LCB) in Ruston, LA. I had to give him a six-month commitment to complete the program. He assured me that, once I completed blind training, no follow-up training would be necessary. Most state schools are set up for the individual to be trained again and again as his eyesight fails.
 

Colorado VA's orientation and mobility training, Boxwood Gulch, Colorado

 

I was asked to become an orientation and mobility (O&M) blind instructor. We train non-visually so that when we are in shadowy and dark places, we can switch to non-visual skills and so not limit our activity. Many low vision people avoid going out at night because they have a tough time navigating in the dark. I believe that if visually impaired people were trained with these alternative skills, their lives wouldn’t be so limited. I have done more as a legally blind man than I did sighted due to my training at LCB. This training was difficult but saved my life and has been a blessing!
 

AMTC Shine Winter 2013
Talent Showcase

Kim: You have reinvented yourself over and over through your career. You were in the military, and then you returned to school for a Master’s Degree in 2006. Now you are back at school learning how to create and edit film. All through your career you have leaned on your hobby of music. You are now a professional musician and an actor/director. Do you have any practical suggestions to PXEers going through a career transition due to loss of sight?

Kirk: Yes, one must gain the proper skills to navigate a blind lifestyle. Technology cannot replace these skills. The low vision specialist wants to fix your situation with technology, but when you walk in dark restaurants with steps and chairs at night you would be well served to know how to navigate your environment. One can’t be independent if they can’t take care of themselves. Remember, it can be a healthy interdependence, not a dependent situation, when you take your wife out. With proper blind skills, one can do most anything independently. I don’t use my wife’s arm to travel. In fact, I have been on a feature film set with horses, cables and many obstacles using my cane and blind skills that are transferable. I don’t care to use the term low vision, because in many situations, I – and others with my degree of vision loss – are essentially blind either by the shadows or the glare. That is the real world.  

 

Kirk and Deborah Waters in costume for Steam Punk 48 Hour Film Project

Kim: Please share how you came into an acting career and how your wife works with you.

Kirk: My wife completed an Actors, Models & Talent for Christ (AMTC, www.amtcworld.com) audition in July, 2012, and she received a call-back. I went in with her on the call-back to understand more about the company. When they met me and found out that I was a musician, they encouraged me to audition on the spot. We both started training in acting classes at AEC Studios in Denver and took improvisation classes. We performed at the AMTC Winter Shine event in January, 2013, and received a good response with some call-backs.

At this same time I put in for a medical retirement with the Veteran’s Administration (VA). For the preceding five years I had been working at my VA facility as a counselor teaching vision-impaired people the skills I had learned in Louisiana. My application for medical retirement is still pending.

All of these events had me thinking about my life’s passion – music and film.  Because I can no longer do what I was doing at the VA, I decided to go to film school and learn the skills needed to create documentaries and write projects. My goal is to create work that will include both people with disabilities and veterans. Deborah and I have been featured as background on a number of films including: A Million Ways to Die in the West (Seth McFarlane),LongmireTranscendence and Persecuted. This has been the best training ground to get into the industry and to learn the local market.

Kim: What else in your journey do you feel would be helpful to share with other people struggling with PXE?

Kirk: Don’t quit! Do your homework. Get the blind skills you need even when the professionals say you are only low vision and you don’t need blind skills. I would not be able to do a night film shoot if I only had low vision training.

Also educate those around you on what you are good with and what your weaknesses are so that they can work with you to forge a strategy that works for you.

Don’t push away your support people, particularly your spouse, when you are struggling. Take a walk or clean something when you are angry. Allow yourself extra time on everything. 

Don’t take all medical opinions as fact. Most medical professionals don’t know what to do with PXE. Your doctors will say you can’t and then your dreams say that you can. Do the research and JUST DO IT!

Kim: What’s next for you?

Kirk: I start the Santa Fe University of Art and Design Film School on August 28, 2013, for post-production, screenwriting and audio development. The plan is to finish writing the web series, The Blind Leading the Blonde and two documentaries called Mad with RAD and The Dance with Blindness. The treatments, the step between screen cards and the first draft of a screen play, are being submitted to a publisher as we speak. We should have a response in a few weeks. My projects will be organized under a non-profit organization so that we can incorporate people with disabilities. My wife will be the director and I will volunteer while I am in school. Together we plan on doing most of the film scoring music tracks with some musicians with whom I have traveled over the last 27 years. I plan to keep writing till they say that I am checking out of this PXE body. The cup has to be half full, NOT half empty, to live! We should keep one another in our prayers and encourage our spouses to enjoy themselves by taking care of themselves.

Kim: Thank you for taking the time to share your PXE experience with all of us. 

Kirk:  My pleasure!