Being A Blind Artist

10/14/14

One thing that was always nurtured in me as a child was art. My father was an architect, and my mother is an art-lover. I remember they would collect all my artwork from preschool and elementary school. I used to have trouble sleeping as a kid, so I started drawing on the wall next to my bed; it would comfort me until I fell asleep. Most parents would probably scold a kid for drawing on the wall, but my parents loved it! In fact, my father would bring his architect friends into the room to “see my daughter’s mural.” Art has always been one area where I don’t feel inadequate. Art is so subjective, and anything can be art, so there is no judgment, and it’s very liberating. I’ve done abstract painting, mosaic tile work, ceramics and, currently, sculpture.

Becoming a Blind Artist

When I became blind, maybe five or six years in, I started going to Braille Institute, and I rediscovered art as a blind person. I saw people there creating art, and I thought, “This is amazing.”
Kooshay scuplture - blind artist
I always wanted to learn how to sculpt, but every time I called art schools about classes, when I told them I’m blind, they told me I had to take private lessons. Fear came up, and they did not know where to put me. Finally, two years ago, I started taking private lessons. My first piece was a portrait of a man, and the school was so amazed, they not only offered to put me in the sculpting class, but they gave me a full scholarship.

My private-lesson teacher wasn’t even a sculptor; she was a painter, but she was so tickled by the idea of a blind person wanting to sculpt that she wanted to be involved. She was a true artist and wanted to try something new. It was a wonderful experience for both of us. My second teacher would blindfold herself to figure out how to teach me. She really went out of her way, and I learned some really great techniques. I started my current class, which is a figure-sculpting class, by sculpting shoes — I have a shoe fetish — but I starting getting jealous of everyone else sculpting figures. I can’t touch the naked models, so now I touch other people’s sculptures and use that as a study to make my own.

I love it. I love the feel of clay. I’m a very tactile person, and I love the sensation of it in my hands. It’s so malleable. I use my hands more than sighted people; I don’t really use tools. I need to feel the clay to shape it, and I think there’s more emotion involved for me. It’s me, the piece and nothing else. Maybe it’s because I can’t see it — it’s like a meditation for me. I get lost in my piece. There is so much emotion — that’s where I get my inspiration. It’s a way to fantasize or fulfill an emotion or need. For me, it’s more about the process — I don’t see the finished product. It’s a very fulfilling way of expressing myself that words can’t; it’s more about expressing what I feel.

Kooshay Malek - seeingKooshay Malek
Marriage and Family Therapist
Los Angeles

Our First Three Months Of Eye Care

9/30/14

Discovery Eye Foundation Blog’s First Three Months

It is hard to believe, but this blog has been providing information and insights into eye disease, treatment options, personal experiences of living with vision loss, and other eye-related information for seven months.

All of this would not have been possible without the expertise of remarkable eye care professionals who took time out of their busy schedules to share information to help you cope with vision loss through a better understanding of your eye condition and practical tips. Since so much information was shared in the seven months, here is a look at the first three months, with the additional four months to be reviewed next Tuesday.
Thank You - first three months
I am very thankful to these caring eye professionals and those with vision loss who were willing to share their stories:

Marjan Farid, MD – corneal transplants and new hope for corneal scarring

Bill Takeshita, OD, FAAO, FCOVD – proper lighting to get the most out of your vision and reduce eyestrain

Maureen A. Duffy, CVRT – low vision resources

M. Cristina Kenney, MD, PhD – the differences in the immune system of a person with age-related macular degeneration

Bezalel Schendowich, OD – blinking and dealing with eyestrain

Jason Marsack, PhD – using wavefront technology with custom contact lenses

S. Barry Eiden, OD, FAAO – contact lens fitting for keratoconus

Arthur B. Epstein, OD, FAAO – dry eye and tear dysfunction

Jeffrey Sonsino, OD, FAAO – using OCT to evaluate contact lenses

Lylas G. Mogk, MD – Charles Bonnet Syndrome

Dean Lloyd, Esq – living with the Argus II

Gil Johnson – employment for seniors with aging eyes

We would like to extend our thanks to these eye care professionals, and to you, the reader, for helping to make this blog a success. Please subscribe to the blog and share it with your family, friends and doctors.

Susan DeRemerSusan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation

Seeing the whole picture: My life after a telescope implant

9/11/14

I’ve lived with my family in Schenectady, NY (outside of Albany) for more than 50 years and I love my home because it’s within walking distance of my grocery store, bank and church. But ten years ago, my vision was severely impacted because of age-related macular degeneration.

Patty and Linda - telescope implant
Patty (on right) and friend Linda have some fun

My children had to help me so much because I just couldn’t see. For example, they had to drive me to the doctor and on errands. I needed help shopping because I couldn’t read labels. After a while, it was very depressing. I started to avoid social situations, like at family parties and church events, because I was embarrassed that I couldn’t recognize faces any longer. I felt terrible about this. I sat and cried every now and then.

But then my doctor told me about a treatment I wasn’t yet aware of called the telescope implant. The device is very small (the size of a pea), and it is implanted in one eye to restore vision. My doctor explained that it works like a real telescope in that it magnifies images, which reduces the blind spot that blocked my straight-ahead vision. The other eye does not get an implant because you need to keep some peripheral vision to help with orientation and balance. This sounded like science fiction! But I wanted to see if it could help me and decided to take a chance on the procedure.

I worked with an entire team of specialists, which were part of a treatment program called CentraSight. My retina doctor, cornea surgeon, low vision optometrist and a low vision occupational therapist all counseled me about what to expect from the outpatient procedure, particularly afterwards. For example, I learned there was a significant amount of occupational therapy required to adjust and become proficient at using my new vision. I also was warned that my sight would not be like it was in my youth, I wouldn’t be able to do everything I used to nor would I be able to see, differently, the minute I opened my eyes.

I had my surgery in February 2013. The cost for the telescope implant and visits associated with the treatment program were covered by Medicare, which was very helpful.

Thinking back, I was nervous on surgery day, but shortly after the procedure, I was back with my family and going out to dinner. The most amazing part is that I was able to see my daughter’s face almost immediately, despite not expecting to see anything right away. It was such a gift! After the surgery, I worked with the low vision specialists for about three months. The exercises varied because you use different techniques to see things when you are standing, sitting or moving around.

It’s been more than a year since my surgery and I am very happy, mostly because I can do so much more now that I can see better. I can read, sew, do canning and work in my garden. I can see the crosswalks, which lets me walk to the grocery store safely. But most importantly, I can see my family and friends. I’m enjoying spending time with the people I care about. I would recommend that people learn more about the telescope implant. There are CentraSight teams all over the country. When you call 877-99-SIGHT or visit www.CentraSight.com a trained CentraSight Information Specialist will point you to the team closest to your home and can even help schedule the appointments for you. The telescope implant isn’t for everyone, but it can make such a difference in your life.

Patty Gadjewski - telescope implantPatty Gadjewski
Schenectady, NY

I See You

8/12/14

This is the second article from Kooshay Malek, a blind therapist in Los Angeles. Her first article, The Habit of Seeing, discussed losing her vision and her choice of becoming a marriage and family therapist. Here she discusses at how she uses her vision loss to help her patients.

When I started as a therapist, I was really concerned about my blindness. I had faced prejudice in other jobs. With my first few clients, I gave them this whole spiel at the beginning, explaining about being blind and about why I wear dark glasses.Therapy cloud - blind therapist My supervisor said not to work so hard to explain. He thought it was a nonissue: “If you were blonde and blue-eyed, would you be describing that over the phone to them?” he asked. He was right. It didn’t faze most people. In the 11 years I’ve been practicing, only a few people had a problem with it. To this day, once in a while, it may come out organically that I’m blind. Most of the time, I don’t tell them beforehand.

I think I pick up on certain nuances sighted therapists may miss. I sense shifts in energy in the room. I have very strong attunements: I notice the slightest change in tone of voice — or even in their silences — and I know something’s going on. If necessary, we talk about my blindness, and we process my blindness in the session. I don’t leave it as an elephant in the room. The main concern of everybody who comes to therapy, whether they are seeing a blind person or not, is, “Am I going to be heard and understood?” In this case, they may wonder if my blindness will affect whether I can hear and understand them. I say: “Well, we’ll have to wait and see. If there is something you think I can’t understand, would you be able to tell me?” That makes them self-sufficient in asking for help or expressing a need. Many patients tell me they find it so much easier to talk to me, because I don’t have my eye on them, so to speak, like a microscope. They find it close to the traditional psychoanalyst’s couch, where the therapist would sit behind them and not look at their face. They find out I see them better than anyone else in their life. That’s the reward of it. Especially with clients who have self-image and self-esteem issues. I get to see who is inside, not who is outside, and that’s powerful by itself. People open up more easily. My blindness is a really quiet, subtle intervention in the room at all times. It’s always present. It’s a gift I carry in there with me, and I use it.

Kooshay Malek - seeingKooshay Malek
Marriage and Family Therapist
Los Angeles, CA

How To Choose A Home Care Agency

7/31/14

When life changes due to vision loss, illness, accident or aging, it can be difficult to maintain your independence and personal care as you once did. Help with errands, grocery shopping, doctor’s appointments, personal care, medication reminders, meal preparation, laundry, housekeeping and more can relieve much of the stress you and your loved ones may be experiencing. Care provided by a qualified, professional home care agency can be the best option for many individuals and their families.
Caregiver for home care
But with so many aspects to consider, the task of selecting an agency to bring into your home can be daunting. So what should you look for and what questions should you ask when selecting a home care agency to provide services to you or your family?

Qualifications

  • Is the agency licensed by the state? Most states — but not all — require agencies to be licensed and reviewed regularly. Reviews may be available on request through your state health department. If your state is a non-licensure state (such as California), you will need to be more vigilant in screening potential agencies.
  • Does the agency meet federal requirements for health and safety with such things as OSHA, HIPAA, infection control, a disaster plan? If not, ask why.
  • What type of employee screening is done? To ensure caregivers are reliable and honest, drug and alcohol tests, extensive background checks, should be performed on all new hires and we are insured and bonded.
  • Are the caregivers experienced? The very best agencies hire experienced caregiver or have a Personal Care training program written by a Registered Nurse with extensive experience in home care and education.
  • Do the caregivers receive health, skill and competency testing? A good home care agency will test employees to assure their personal health, skills and capability. Standard testing should include competency testing, TB tests, pre-employment health screening and skills competency testing, and drug testing.

Quality of care

  • Does the agency value a caregiver bond? A great caregiver becomes part of the family, and a good company will recognize that and try to match you with one or more caregivers with a regular schedule to promote the development of this bond.
  • Does the agency provide training and continuing education? A quality home care company will provide an opportunity for continuing Personal Care training as well as specialized training in specialized areas such as dementia and Alzheimer care, chronic and acute illnesses, and best practices and procedures.
  • Is there supervision and unscheduled visits by the agency’s supervisor to evaluate the quality of home care? A good home care agency will provide supervisors or care coordinators who perform unscheduled supervision visits to help make sure that you are receiving the best care possible. The field nurse supervisor visit is also a good time to communicate any concerns you may find uncomfortable discussing with your caregiver.
  • As part of the agency’s quality assessment, do they have a client satisfaction survey system? For peace of mind you need an agency that has a process to know you are satisfied and keeps you and your family informed. Some agencies work with a third party to make calls to ensure your satisfaction with our caregivers and our agency. Caregivers should also be trained to alert family members regarding any changes or concerns regarding the client, in addition to responding to clients’ or family members’ concerns.
  • What happens if my caregiver does not show up? One of the most common problems that people have with the average home care agency is that the caregivers don’t show up. Choose an agency that has a system to handle the caregivers who cannot fill their shift such as incentives and/or pay bonuses for perfect attendance and have “on-call” caregivers.

Costs

  • How does the agency handle expenses and billing? Ask for literature explaining all services and fees, as well as detailed explanations of all the costs associated with home care.
  • Will agency fees be covered by health insurance or Medicare? Find out what arrangements are in place for specific health insurance plans. Although home care agencies do not bill Medicare there are many other insurances that will pay for service such as the Veteran’s Aid and Attendance, Long-term care insurance, Work Comp insurance and some traditional plans.

Understanding services

  • Will you receive a written care plan before service begins? The care plan should include details about medical equipment and specific care needs, contain input from your or your loved one’s doctor, and be updated frequently.
  • Will you receive a list of the rights and responsibilities of all parties involved? This is sometimes known as a client or patient’s bill of rights.
  • Will the agency work directly with you or your loved one, family members and health care providers? Look for a company that will coordinate your care with everyone involved.
  • When will service be provided? Is care available round-the-clock, if necessary? Care is provided to you as planned during your initial in-home visit from our Care Coordinator. The agency should be able to provide for 24 hour care either by shifts or a live in situation, if the setting is right.
  • What procedures are in place for emergencies? Ask how the agency or home health aide will deliver services in the event of a power failure or natural disaster. Your agency and caregivers should be prepared for emergencies and practice in ensure your and their safety.
  • How are problems addressed and resolved? Who can you or another family member contact with requests, questions or complaints? Ensure the agency provides you with contact information and that their phones are answered 24 hours every day!
  • When can services begin? A quality agency should work with you to create a schedule which will fit your needs and can be flexed if your family is in town or you go on vacation.

Monitor your home care services

After you’ve found a home care services provider, monitor the situation. If you’re concerned about the care or services provided, discuss it promptly with the agency. If necessary, involve your doctor or your loved one’s doctor as well.

Robert Mahoney - home careRobert Mahoney
Owner
First Light Home Care

The Habit of Seeing

7/22/14

We often take our vision for granted – and if you lose it, your life is turned upside down. I met Kooshay Malek at a Pacific Palisades Lions Club meeting and was amazed by her story. She has agreed to share with you how she “gave up seeing.” This three-part series will explore losing her vision, how it affected her career choice and how she expresses her creative nature.
kooshay malek
My eyes are what brought me to the US. I was 16 when my father and I came here from Tehran, Iran, for eye treatment. My case was an unusual case: We still, to this day, don’t have a name for it, but it’s retinal tumors of some sort. My case had been through Europe, Russia, Israel, to different conferences, and they sent me to the US as a final recourse. During that time, in 1982, it was the Iran-Iraq war, and the airports were not open. My dad and I had to get special permits to get out for medical reasons. Then to get American visas, we were stuck in Frankfurt for a couple of months waiting. It was a very challenging time. Long story short, we got to Boston, and I started receiving treatments on my left eye. It didn’t respond well, and I became totally blind on the left side. Meanwhile, I could still see 20/20 on my right side. We moved to LA, where we had friends for support, and my mother and sister joined us. I was 18 when my right eye started going bad, and I started going to UCLA/Jules Stein for treatment. I went blind in that eye when I was 22.

My father passed away two years after I lost my sight. I finished college and went through independence training at Foundation for the Junior Blind in LA. I eventually decided to go back to school to get a master’s degree in psychology, because I realized I’m a good listener and I’m always wanting to help people, so I thought it would be a good way to channel that. And as a blind person, I didn’t think I had too many career choices.

I’ve been licensed as a marriage and family therapist for the past five years. I have a part-time practice, I do volunteer work at the clinic where I did my internship, and I help train up-and-coming therapists. I think one of the reasons I was so drawn to this field is the fact that when I became totally blind while I was in college, I was able to receive free counseling through school. But once I got out, I was looking for support groups and the camaraderie I had found during independence training — being around other blind people and helping each other emotionally. I couldn’t find anything like that. The only support groups I found were for seniors, so I just found a low-fee therapist to get some support. I’d lost my dad, lost my eyes, lost my country. I was dealing with so many losses. I think that’s why I’m so passionate about doing volunteer work in this area. I tried to pull together a support group for some blind clients, but it didn’t work out, partially due to transportation and location and the same stuff blind people always run into, but I do offer low- or no-fee counseling to them. I also have good relationships with some rehab counselors who refer people to me. I think therapy is an important part of rehabilitation; you have to approach this holistically.

I’ve always been very proactive and resourceful. I’ve often thought, “If only there were a 12-step program for blind people.” I’ve always been able to relate to people in these types of programs: They have to give up a habit that’s no longer working for them, and they have to put their lives back together, step by step, day by day, one day at a time. I really related to that: I had to give up the habit of seeing.

Kooshay Malek - seeingKooshay Malek
Marriage and Family Therapist
Los Angeles, CA