The Many Losses of Blindness

There are many aspects of blindness a person losing their vision must adjust to. I just found an article describing twenty losses of blindness. These include:

• Losses in the basic sense of psychological security.
• Losses in basic skills, such as mobility or techniques of daily living.
• Losses to communication, such as loss of social adequacy, ease of written and spoken communication.
• Losses of appreciation, such as loss of physical integrity, visual perception of the pleasurable or beautiful, or loss of confidence in the remaining senses.
• Losses concerning occupation and financial security.
• Losses affecting the whole personality, such as loss of independence.

For me, losses in my basic sense of psychological security are common and not just blindness-related. I am not dealing with losses in basic skills at this point, and have never felt a loss in communication. Oh well, I have, but it was easy to adjust to.

Where I really struggle is with loss of appreciation. To be honest, I'd hoped to gain color perception back after surgery. This didn't happen, and there is no way of compensating for the meaning of colors. After all, they can't be touched, heard or otherwise non-visually perceived. Having always been quite a visual person, I still have a vivid but decreasing imagination of color, but this actually further reinforces the knowledge that I've lost the actual perception of it. I remember in 2004 going to blindness rehab and discussing with my fellow students what we would do if we gained sihgt. Most people said they'd read, travel or otherwise gain independence. I said I'd appreciate the beuaty of the sights around me.

As for losses to occupational or financial security, these have not really been related to blindness in my case. My parents say I would've gone into engineering or math if I'd been sighted, but this not at all interests me and never did after the age of around twelve. Whether vision loss contriubted to my loss of interest in math, I do not remember. I did consider career paths, such as in speech and language pathology, that are not suitable for a blind person, but I do not know whether I genuinely wanted to become a speech/language pathologist or just wanted to read up on it in university. What I did lose that somewhat relates to this, is recreation. I still miss not being able to draw, for example. Whether this is a loss of appreciation or a loss of occupation, I do not know.

Lastly, there is the loss of personal independence. I did lose independence skills when I lost vision up until my most recent vision loss ten years ago, but now my dependence is mostly related to my mental health conditions and autism. I have to think further on how this personal independence thing affects the whole personality, as is postulated. I think more is meant than just loss of practical independence, but I'm not sure.

Adjusting to Total Blindness

In his book Freedom for the Blind: The Secret Is Empowerment, James H. Omvig talks in the chapter on emotional adjustment about the importance of discussing blindness intensely and mentioning the word "blind" over and over again. This, according to Omvig, makes blindness part of a blind person's everyday language and desentiszes the negative connotation of blindness.

I have been practising this desentisization for years, and it has helped me to adjust to my blindness. In 1999, when I transferred from special education into mainstreaming, I made a conscious decision to identify as blind from then on. After all, my tiny bit of residual vision was not going to be relevant amongst all fully sighted peers.

Still, I know that blind does not necessairly mean no visiion at all. In 2005 or 2006, I wrote my Dutch information page on blindness, and one of the FAQs I answered was whether all blind people are completley blind, and I answered it with a clear "No".

As I'm facing the reality of the mostly failed cataract surgery, I wonder if I need to do a further desentisization, this time with the term "totally blind". I have been doing this for a bit already since early this year, when I noticced my light perception had decresed to the ability to discern daylight from nighttime, but at the same time I was hoping it wouldn't be necessary with surgery. Now my vision is back to probalby where it was around 2004 or 2005, with my being able to see room lighting, detect the position of windows, etc. I was writing this post, then midway through it left my darkened room and realized that my vision, while still technically being only light perception, had increased a bit from before surgery. Should I use this as an excuse not to desentisize myself to the idea of being totally blind?

I know that now that I've had cataract surgeyr, I've had my last chance of regaining sight. My intention with seeking an ophthalmologist's opinion on surgery was more of a psychological nature than of a medical nature. Of course, I hoped for that hand motion vision the eye doctor said was the best possible outcome, but at the same time, I realized right from the start of this journey that a more likely outcome would be no improvement in vision. After all, before the cataract specialist had pretty much given me the choice, I'd expected him to flat out refuse to perform the surgery on me. Once I'd been put onto the waiting list, my hopes were somewhat up, but I still counted on a bad outcome.

Okay, I know this adjustment process has taken me over two decades, so can I technically expect to accept that I'm totally blind and will never regain my vision two days post-surgery? I'm not sure, but I'm actually tired of this adjustment process.

Stages of Adjustment to Blindness

Today on the Psych Central blog, I found an article on coping with chronic illness. According to Donna White, the author of the post, people who are facing a chronic illness go through the five stages of grief populated by Elisabeht Kübler-Ross as occurring in bereavement. These stages are denial, anger, bargaining, depression and acceptance. This post inspired me to pull out Dean Tuttle's 1996 book Self-Esteem and Adjusting with Blindness. He describes not five but seven stages of adjustment:

1. Physical or social trauma. This is a situation or circumstance the awareness of which brings about severe anxiety, discomfort and/or turmoil. In blind people, this may be the onset of blindness or vision loss (for those losing their sight later in life), becoming aware of one's blindness (for the congenitally blind), or the knowledge of impending vision loss (for those who know they will lose their sight at some point before actual onset of blindness).
2. Shock and denial. This involves mental numbing, including feelings of detachment or unreality, as well as the cognitions involving denial. Denial can be partial or full.
3. Mourning and withdrawal. This stage happens when people become more aware of the reality of their situation and the psychological defense mechanism of denial decreases. Characteristics of mourning include self-pity and a sense of helplessness. People in this stage often withdraw from their physical or social environment. Hostility may also be part of the mourning phase.
4. Succumbing and depression. This phase involves a gradual awareness of more specific consequences of vision loss. When these (real or perceived) consequences exceed a person's ability to cope, they may fall into depression. The succumbing phase is characterized by negativism and pessimism.
5. Reassessment and reaffirmation. This phase involves the re-evaluation of one's situation. Anger, depression and self-pity begin to recede and people re-examine the meaning of their life, their values and beliefs and habitual patterns of behavior.
6. Coping and mobilization. In this stage, individuals manage the demands of their social and physical environment and direct their energy towards the tasks of everyday life.
7. Self-acceptance and self-esteem. Having a positive self-image is the last stage in adjustment. Accepting one's blindness is a prerequisite for this. However, a positive self-image is far mroe than accepting blindness. It involves the realization that one is a valuable person. This means confronting one's beliefs about oneself and one's blindness, and challenging negative ideas about oneself.

I was unable to see where bargaining fits into the seven-stage model. Bargainign is where I believe I've been stuck for years, although I may confuse bargaining with partial denial.

In 2004 and 2005, when an online friend had sent me Tuttle's book, I had done a series on my old blog on adjustment with my vision loss and actually the reality of finally having become totally blind. I guess in the next few weeks, I will revisit these posts. I realize I'm actually back where I was in 2004, realizing I've become totally blind and (now truly) there is no way this can be fixed.

Eye Surgery Was Yesterday

Yesterdy was my eye surgery. I got onto the unit half an hour early and was admitted over an hour late because the person before me required complex care. I would've been operated on at 10:00 AM but wasn't until around noon. Technically, the operation was somewhat of a success and somewhat of a failure. The ophthalologist was able to remove the lens, but not implant an artificial lens. She told my husband that for color vision, which I was mostly hoping for, this would not make a difference.

Functionally, well, what can I say? I went to get checked up today and was able to see the flashlight on the first try and also see the blue light used for checking eye pressure. Prior to surgery, the optometrist had had to move the light closer two times before I could see it and I didn't see the blue light. To be honest, I knew the blue light was blue; I could not actually see that this time either. The doctor checked whether I could see what direction the light came from (light projection) or whether I could see her hand move right in front of my eyes, but I could see neither. I had swelling on my cornea, so it could be once this clears up I will get some further improvement in vision. Overall though, I feel that functionally surgery mostly failed, and I reckon the cataract specialist would never have put me on the list had he known this tiny improvement would be all I got. I do hope once I'm all recovered, I can close this chapter and finally accept the fact that I will always be completely functionally blind.

Eye Surgery

I've been legally blind all my life from a condition called retinopathy of prematurity. This condition is i itself not degenerative, but it often leads to retinal detachment due to scar tissue pulling on the retina. In addition, cataracts and glaucoma may develop. In 1993, I developed a cataract on my right (worse) eye. The cataract specialist felt it would be useless to operate on, so my own retina specialist removed the lens, but didn't implant an artifical lens because I was either too young or she didn't have the ability to perform this procedure. In around 1998, I lost what little vsion I had retained in that eye due to a retinal detachment.

In 2003 or 2004, I developed a cataract on my left eye. I went to an eye doctor for somethigng different (suspected glaucoma, which was then ruled out) in March of 2004. While we were there anway, my father asked the doctor whether cataract surgery would make any sense. The doctor was vague, saying if I thought I would regain some sight he might be willing to put me on the list, but he wouldn't recommend it really. I was raised with the idea that I had to accept blindness and, from my last surgery in 1994 on, my parents treated me like I had no useable vision, so I decided I shouldn't pursue surgery.

But the thought ate at me: what if surgery could restore some of my sight? In 2011 or 2012, I started discussing this with the nurses at my former institution, and they advised me to seek out a medical opinion. Earlier this year, I took up the courage and asked my GP to refer me to an eye doctor at the city's university medical center. When there, the doctor proposed an ultrasound to look at the condition of my retina and optic nerve. He also requested my records from the hospital I'd been going to in the 1990s. Then he sent me on to the cataract specialist.

The cataract specialist said there was really no way of knowing what the actual functional outcome would be. Like, I had no retinal detachment on my left eye and my optic nerve was fine, but that didn't mean I'd actually gain any sight back per se. I read up on some research and found that structural condition of the retina really does not say everything about visual function. The cataract specialist was willing to put me on the list for surgery, and I came in hoping to get surgery, so I consented to this. There is some risk that I'll get bleeding or a retinal detachment due to surgery, but given that I only have a minimal bit of light perception now (being able to discern daylight from night time but not much else), I'm willing to risk this.

Surgery is next Monday. I'm kind of nervous. I guess I'd feel guilty if there were no improvement. Then again, I'd at least know that this was the last thing I could do for my sight then. I feel if there's going to be no improement and I remain totally blind, I will be able to close this chapter sort of. The doctor had some hope that I would regain hand motion vision, which I had in the 1990s, but I am more pessimistic. If I will be able to see colors and very large objects, that would be absolutely great.