Diminishing Returns

Spam THIS!

Even while worsened eyesight and the latest leg crisis combine with other responsibilities to keep me away from my writing, including this blog, the international spammers have kept passing but constant attention to the blog. Real readers wouldn’t notice, because most of my actions have been to delete the link spam posted as comments.
The spam is obvious to me on so many levels. I’m not pounded soft by the empty and insincere compliments to how well written an article is or how I must be an authority on "this topic." I’m not taken in by compliments to the appearance or layout and do not feel the need to give free coaching to people asking what software I use to create the blog. I’m not even going to address the people who post with the advice that the blog needs "more" pictures. This is a blog by and mostly for blind people.
Most of the link spam is posted anonymously. It makes me think back to an online conversation I had with fellow writer Brandon Bell when he was being harassed by someone posting anonymously to his blog. There have been a couple friends or readers who posted legitimately, and I do not want to limit them. I also believe that limited comments in any way can inadvertently lay a foundation for censorship. No one has to agree with me, we just need to disagree respectfully.
Censorship opposition aside, the idea of this blog is to force myself to communicate the experiences of vision loss and diabetes and the other problems that arise. Most of the questions friends and acquaintances have but feel impolite to ask can be answered here. Judging from search engine hits, many other people have gotten useful information among these posts. It’s not a commercial site. If I am not even trying to make money off of it, I see no reason to allow people across the world to post a pasted comments on my blog along with who knows how many other, just so they can end with a link to their commercial sites that hawk things like trick teas, rascally raspberries, gimmicks for overall weight loss or specific weight gain solely to the penis, supplements and non-American approved drugs, cosmetics, prostitution, and the worst among others, boner pills. Do these assholes really think I will allow boner pill links when I have maintained the most frequent label tag as "Cialis = Blindness"?
The spam filters here work very well, and what garbage they do miss, I am quick to delete.

Feelings of Abandonment

I have not abandoned this blog, despite the lack of a new post since April. (Forthcoming case in point, no sooner did I write that one line on June 4^th when I was distracted away and unable to get back.)
Now it’s July 6^th and I believe I can finish a hasty missive.
2013 has left me with an overwhelming sense of loss. On top of reduced capabilities and an attrition of friends, over the time since the eye problems began, I started the year with poor feelings for having sold my car. I can accept the inability to drive more than no longer owning a vehicle.
As the year progressed, I had an eye procedure that brought complication and less result than anyone had hoped. My father passed away, I noticed that the Crow boot-bound leg is losing muscle mass and even routine things took more effort. Even further reduced exertion was more than I found I could handle. I’ve had to give up more, especially when "over" exertion inflamed the tendon in my leg, which re-triggered the Charcot Foot inflammation and ended up ulcerating the ankle. The hole was larger than a silver dollar. More than three months later, it’s about the size of a penny or nickel.
I suffered the worsened by moving prized possessions to a venue for their sale. Despite the pride in ownership, this stuff is heavy and bulky and useless to a blind guy. Removal became critical because the fact that my apartment–in a house I own–is no longer livable for me, even before the reduced eyesight and worsened leg. There’s 34 steps between the street and my apartment; 48 between the street and my bedroom. It’s hard enough getting in the house empty handed. Groceries are outright burdensome.
The eyesight, particularly effects of and adjustment to changes in light, is worse. This limits everything, including functional computer time. Work on fiction projects has stagnated as much as the blog while I try to close out responsibilities and roll with the changes.
Things are looking less bleak. My guardian angels may be masochists, but they are on the job!

Circling Charcot

My resurgence of Charcot "Sharko" Foot makes it a good time to go over the condition, especially as one of the biggest threats of the condition is that it is rare enough that doctors can easily make it worse. To the cost of the patient’s limb.
Charcot Foot these days is almost an exclusive diabetic condition characterized by sudden and often "inexplicable" swelling of the foot. The foot will often "run a fever" and can be seven degrees Celsius warmer than the non-afflicted foot. The condition is most often painless to the patient.
Usually, the Charcot Foot is triggered by a break or fracture among the bones of the foot. With reduced circulation and/or nerve damage, the diabetic does not feel the break and continues to use the foot as normal. The swelling is the body’s way of protecting itself.
The unintentional risk posed by doctors is that the attending physician will not recognize or know of the condition. Often, the doctor will probe the swelling to test for bacterial or viral infection within the foot. In doing so, the doctor may introduce surface skin bacteria inside the foot and cause a sever infection that can jeopardize the limb. The patient should neither allow biopsy nor any type of mechanical reduction of the swelling. About half the patients who allow those thing quickly lose the foot.
Treatment for the Charcot relies on treatment for the underlying cause. X-rays and MRI’s are often necessary to determine the damage location and extent. Staying off the afflicted foot as much as possible will be necessary. The bones must heal properly. If they do not, they can separate further, mal-forming the foot permanently and risk ulceration of the foot. To be bluntly graphic, ulceration of the foot is when the bones poke through the skin from the inside out. The risk of infection during an ulceration is high, and the diabetic patient may not be able to feel it happening.
As usual with me, everything was slightly unusual. I developed Charcot Foot not because of a broken bone, but by tendon damage in my toe self inflicted by a hard kick. I had an inept foot doctor who prematurely declared the Charcot had passed Phase One and did not take into consideration that I was on eye-dropped prednisone for an eye surgery. The Charcot Foot renewed with a vengeance, and the swelling further reduced circulation. With further impeded circulation, nutrients including high levels of calcium and deficient Vitamin D could not reach the center of the ankle. The central bones collapsed, permanent damage that put me in a Crow Boot.
Overuse re-triggered the Charcot Foot recently by re-inflaming the tendon. When the foot swelled, the Crow Boot no longer fit correctly and the ankle bones that are twisted and misshapen ulcerated through the side of the ankle.
The tendon will ever be likely to re-inflame while a broken bone would likely have mended. The crushed ankle cannot mend. I have to be diligent, and my situation of not being able to feel much pain in the ankle combined with an inability to see things wrong with the foot makes that even more of an effort.

Insensitive

Long story short on the latest malady:
I over-exerted from the third week of March through the first week of April, with a steady increase in activity. This caused no immediate strain, but inflamed the bad tendon, which inflamed the Charcot Foot, which caused the ulceration of my ankle. The open wound is typically encased in a Crow Boot, which is a tight, foam-lined brace that supports the permanently I have to wear the Crow Boot at all times or risk further ankle collapse whenever I put weight on the right leg. The Crow Boot can be very warm on the leg, and a symptom of Charcot Foot itself is temperature of the foot that can be seven degrees Celsius above the rest of the body.
This forms the ideal conditions for bacterial growth, dark and warm and moist. The problem getting so bad so fast is not a sign that I am a bad diabetic who does not take care of himself. It is a matter that I am a diabetic with nerve damage who could not feel the break in the skin on the foot. I am a blind diabetic who could not see the break in the foot, or blood on a dark sock.
Two things made me aware of the problem. The first was a lingering smell. I wondered what the bad smell was in the kitchen. I noticed it in another room. I thought the cat box in the bathroom had a funky odor. When I went to bed that night, the smell from the removed boot was overpowering. I happened to notice that the sock was wet, but not in a uniformly sweaty way. I touched what is normally a rough, dry area of skin and squished my finger in a wet hole.
I called a tenant who helps me out a lot. He came over and we cleaned things up. He found my emergency pack of antibiotics and I started those.
By specific criteria, he agreed with my decision not to go to an emergency room that night, but to get in contact with my regular foot doctor in the morning. This decision was not for financial reasons, but logistical ones. The truth is, Charcot Foot is not all that common and many doctors will not recognize it. Many, in the course of good and reasonable treatment, will do things that will increase the risk of Charcot Foot leading to amputation. I felt safer going to my doc–Thomas Mancini of North Providence–rather than to someone who I could only hope would not make things worse. I’ve been there and done that.
Dr. Mancini saw me that day. He cut away some dead tissue and was surprised by the amount of bleeding. Nerve damage is not the same thing as circulation problems. He prescribed Augmentin, a powerful antibiotic. I am making a concentrated effort to stay off the leg and keep the boot off when I can so the wound can breathe. I did catch the problem soon enough that the infection had not reached bone or flooded my system. The antibiotics knock me out a bit, but do not bother my stomach. I will be staying on them (and off the leg as much as possible) until the wound is healed up.
This may sound odd from a blind limpy guy, but I am lucky.

Life and Limb

Yes, the blog’s been neglected this month. So has everything else. The new hole in my ankle is my excuse and my valid reason.
The Charcot Foot has relapsed with new complications. People who have read the older posts about the Charcot development may remember that I did not get Charcot Foot in a normal way. It is an esoteric diabetic thing, but normally stems from unfelt breaks or fractures in the foot. Mine resulted from tendon damage. During a "second" stage of Phase One, my circulation reduced During that time when nutrients could not find effective delivery to my swollen foot, the central bones of my ankle collapsed and a minor toe problem gangrened inside of three days. Luckily, somehow I did not have any part of the foot or toe amputated, although some meat was shaved off of the big toe. I’ve been in a Crow Boot since to reinforce the structural weakness of my ankle.
I am now a patient of podiatrist Thomas Mancini, who has offices in North Providence and East Greenwich Rhode Island. Doctor Mancini did great by me in every way. Instead of rehashing the bad things involved in last year’s mess, I’ll refer newer readers to the label for "Sturdy Hospital" and an old post titled "Doctor Dumbass."
So what went wrong this time? I over-exerted. I had to be a little more active with some things through the final weeks of March. That bothered the leg tendon in the thigh somewhat. Just having to walk to the adjoining building from my apartment is some 75 stairs each way. Having to make that walk so many times took more out of me than "it should."
April started with a project of moving things out of the house and setting up for sales in a booth at an antique co op. I arranged to hire an old friend ahead of time, a big brawny guy who can handle moving 40 boxes better than a limpy gimpy blind guy can. The fault in that plan was in hiring someone without a job. This friend has not outgrown his lazy streak since we’d had more exposure to each other. He called on the appointed day with supposed willingness but plenty of work-aversion ideas and theories. I went to the back up plans, which required more direct effort of me and did not get the entire project done in one day. It’s still not finished.
The efforts inflamed the tendon from toe to groin. This re-triggered the Charcot Foot. The foot swelled. Being trapped in a fitted brace that was now too tight, the collapsed ankle bone ulcerated the inside of the ankle against the boot. The Crow Boot is tight and warm, an ideal environment for bacterial growth.
My roommate was away that week. I can neither see nor really feel a problem on that lower leg. I realized it was infected by the smell.
Infection on that leg is literal risk to life and limb. Unchecked, an infection can flood my entire body pretty quickly, or it can root into local bones and necessitate removal of those bones and the part of the leg they form.

Awkward Silence

The last thing I wanted was to have the flow of posts interrupted where it was, amid observations about how control freaks make the best caregivers. That could sound like An empty or ungrateful criticism of some of the people who have been there for me most. That’s the furthest thing from my intent, partially because my core statement is true: control freaks make the best caregivers. Those without the ability to plow forward can’t do as much and are often not as effective.
When the blood hemorrhage happened, my friend Pat dove into the deep end of my care. For any minor complaint I could raise, I don’t know how I could have gotten through that time without Pat. The cycle of needs almost cost us the friendship. Pat took over more and more, too much for my liking both as someone trying to learn where and when I had to let go, and more as someone traditionally viewed as uncontrollable. Pat put so much time and effort and energy into my care that Pat’s marriage strained. We both needed a reset of the boundaries for our individual well being. That process was the right thing that never felt right to either of us. Pat had said at one point, I had such a look of hatred in my face; that moment had demonstrated the need to back off to Pat. I had unintentionally inflicted a hurt without being aware of it. I barely remember the incident as anything beyond one of my helpless, self-pitying moods.
It’s been three years. I am more adjusted to my situation and all its stark realities. Pat’s marriage has stabilized. We’ve maintained a friendship with roots back into the mid 1980’s. I am grateful for all that.

Ghost in the Rear-View

After considerable delays, the anthology Our Haunted World" is finally available for purchase at Amazon.com and should soon be available at Barnes and Noble.com as well.
http://www.amazon.com/Our-Haunted-World-Stories-Around/dp/0977095681
My contribution to the volume is "Ghost in the Rear-View." The story is solidly set here in Providence Rhode Island. It’s more than a haunted car story, to which the title gives some hint. It’s a nifty story inspired by a line in the Jim Steinman song by Meat Loaf "Objects in the Rear View Mirror May Appear Closer than They Are." My story focuses on the appearance of a ghost in a guy’s car and moves towards the answer of why she began appearing there whenever he drives past a highway-side graveyard, as can be readily seen by people heading northbound on I-95 just pas Branch Avenue.
It is one of the favorite three short stories I have written. Originally the publisher planned illustrations for the stories, and mine was the first one chosen by the artists for some of its haunting imagery. The illustrations, unfortunately, were later omitted from the publishing plan.
The anthology features some other good writers I have encountered before and promises some great stories. It’s a must-have addition to the bookshelves for my three fans and anyone who enjoys ghost stories.

Caregiver Seizing Control

Continuing on the ongoing theme of control freaks make the best caregivers....
It’s only special people who can truly rise up and become major caregivers to others in need. Vows of "in sickness and in health" often get broken under such circumstances. I find myself remarkably lucky to have or have had some of the people who have passed through my life and/or remain part of it. I am a cantankerous unmarried and unattached man without close family who went blind at 40. I’ve had more than one person who did or does take excellent car of me, often going out of their way to do so. Two of those rise above all others to the depth of their efforts. Conflict is inevitable with each. They have control freak tendencies in general, and my loss of control and ability creates a vacuum that is natural for either to want to fill.
One is my former employer, business partner, friend, border, roommate and probably a lot of other roles and definitions that escape me right now. I’ll deal with him later.
The other is "Pat," a name I assigned for gender neutrality in the policy I have always maintained with this blog of not specifically mentioning friends and rendering almost all of them anonymous to the blog readers and mutual acquaintances alike. I’ve known Pat for well over half my life and while there were intervening years without contact, at several points we were close, if not intimate.
When the blood hemorrhage happened, it seems Pat dropped everything to be there for me. It did not seem that way from the onset; he just gave rides and other favors here and there. The frequency rose quickly. My parents had taken me to the first few eye appointments in October 2009, but Pat took over that responsibility and had driven me to all the PRP sessions and other appointments. This was one of the first signs that Pat’s help was expanding from charity to control. I want neither Pat nor no one else to misconstrue anything here or think that I do not appreciate everything he did. I appreciate Pat’s actions and the person behind them.
The PRP appointments and intervening exams went from the option of Pat driving me to a mandatory thing by his actions. Pat was rearranging hectic work schedules to do this for me, and taking time away from an already troubled marriage at the time, which made that aspect worse at home. I was dealing with the loss of independence and self control as well as the loss of plain old eyesight. Pat was helping me, but it soon developed that he would arrange future appointments to his work schedule. He would take the appointment cards for upcoming visits; I would never have possession or sometimes even much knowledge when the next appointment was without his reminders and scheduling of my time.
I do not think Pat was intentionally acting out any control freakishness with any bad intent or simple goal of controlling me. Pat simply found it expedient to make sure he knew when the appointments were so he could rearrange his schedule and make sure the treatments were met.
I see this as a classic way that caregivers end up taking control. There’s no sinister conspiracy to seize someone else’s life. Pat did no wrong to me and in fact did much, maybe too much, right. Yet in that time, while I was trying to hold on to everything I was losing, there was no way that the small things Pat took over for expediency or ease in providing help could be surrendered without resentment.

Freaky

While talking about caregivers and control freaks, I would be negligent to ignore opinions of some that I am a control freak myself.

Losing Control

There, I’ve said it: The best caregivers are often control freaks.
They do not proceed with sinister intent. They are good people with the best of intentions, with the heart and mind and patience to look after a gimp like me or their agin parents or relatives.
Two digressions before I continue.
First, I was labeled "uncontrollable" as a teenager. I never lost the label as an adult, because it was always true. I can be worked with, guided and even directed, but not controlled. Employers and bosses who wanted jobs done were always happy with me. Those who wanted hoops jumped through soon became frustrated, and more often than not, former employers sooner rather than later. I was always brazen enough to meet the statement "If I tell you to jump, you’re to ask ‘How high’?" with open contempt. I am not an extension of other people and do not exist to boost the egos of others. That has not changed since I went gimp. Nor is it likely to change.
The second reminder for this subject holds true in my case and most others, whether the person needing help is going gimp or just getting old and feeble. People like us are psychologically dealing with losses of control over ourselves and our lives. I looked at giving up driving as a responsibility to the communities through which I would be endangering. I just have a certain mix of competency and confidence And genuine humility. My convenience and self control is not worth the danger I would pose to others. I wish more elderly people would have this reason and just stop driving before they kill someone. Yet I understand why they don’t, often until they total their car or their kids take the keys away. Loss of independence to go where you want when you want is an enormous loss of self control. It is not always the beginning of the end, but is usually the turning point from which there is no recovery. Getting a driver’s licence and car is a milestone for most people, and losing that privilege is akin to picking out your gravestone.
All on our own, we see, even blind, out self control and independence dwindle.
We feel grateful for those who are willing to help us and do for us.
We understand that we are a burden to those who help us the most, and even at our most cantankerous, we truly appreciate the efforts.
Watch that sandwich generation person in the grocery and department store as he shops with both children and a frail parent. Often the sharp barked orders to the parent are as commanding to the elderly parents as to the grade schooler. The caregiver is happy to help, but the daily demands and obligations take over. Getting shoes for the kids and prune juice for the parents become equal things on the to do list, often with similar annoyances: the kid doesn’t like the trim color on the shoes and the parents thinks that bottle of prune juice is too heavy or hard to grasp.
"Normal" or mediocre caregivers get frustrated by this. Usually they make the shopping trips less often or reduce the help they give. I do find that understandable.
The best caregivers seize the reins and take over the situation. This is less pronounced with children. With adults who are already losing control of aspects of their lives, the cycle can soon escalate.
The size and shape of that prune juice bottle really doesn’t matter. But the representation that even such an insignificant decision is out of our hands becomes a small point of stress in a growing porcupine that we sleep with each night.
Conflict between the caregiver and the receiver becomes inevitable....

Caregivers

The experience of going blind and gimpy is much like getting elderly. I’m less capable by far but can remember all the things I could do and could do well if only my body still possessed the physical capabilities. I can see to neither drive nor read nor much in between. Especially when wearing pants with cuffs that do not fit over the Crow Boot, the walking disability is clearly evident to people.
Many people, perhaps the majority, have an aversion to getting close to me for this, as if the blindness or diabetes or collapsed ankle was catchy. Some people just don’t know what to say in the face of evident misfortune and steer clear of the person to avoid saying the wrong thing. I understand this and mean no criticism. I was much the same way. I would look after people in my life when they needed help, but I just was never the type to see an old woman at the curb and grab her by the arm to help her across the street. People with something other than my lump of cold coal for a heart will take that old biddy by the arm and escort her across the street. People do this with me. Often they grip my arm to guide me along, and the hold is not completely different than police escorting handcuffed prisoners. I need help less when I am on familiar ground. I can say I am all right or can get by where I am, but seldom am I released to stand or fall on my own. I get the help, need it or not, want it or not.
I know some readers will take this line of complaints as ingratitude or general surliness on my part. I do appreciate even small kindness from others. I express gratitude without hesitation, to the person who earned it, and often about the person who earned it. People who truly know me do know that I say things how they are, and I am good on stating the positives rather than just the negatives.
Some dark paths run close parallels to the bright and cheery roads that the casual caregivers travel. The first is that offers to the effect "if you ever need help, call me" are moist often empty offers. The person making the offer is often making it in front of others, to make themselves seem charitable and caring. Actually being taken up on those offers strikes them as inconvenient.
The second pitfall is someone who does want to help but finds there can be no end to it. Giving an occasional ride is no problem, but a regular ride somewhere becomes an unwanted obligation. The receiver of the recurring favor needs to keep aware of this. The "now-obligated" caregiver can quickly grow resentful of the obligation but feel unable to separate from it. The stress of the situation will grow in those caregivers and reach a boiling point.
The other type of charitable caregiver can be the most sinister situation of all. My reference to arm-grasping assistance being like police corralling prisoners was not casual. Care-giving is often an expansion of mommy (or daddy) instincts. The best caregivers are often control freaks.

Adjusting the Dividing Lines

It’s been nearly three and a half years since the vitreous hemorrhage that started the permanent decline in vision and other diabetic related maladies. I’ve dealt with it OK, admirably, according to some people. I find irony that some of my personal strengths that have gotten me through these days and years are the same elements that did (and still do) grate on other people.
I’m not a warm and fuzzy guy. There’s a cold center beneath a warm midrange beneath a somewhat icy shell. Not everyone sees that. Cordial introductions can make people overestimate my social demeanor. Introductions made with a cool distance can lend opposite perceptions. Neither extreme is either wholly true nor untrue.
I’m cold and analytical. I judge no one but appraise everyone. Depending on where and how I know the other person, my appraisals often are twofold, personal and professional. Nobody’s all good or all bad, no one’s better than me and I’m not better than anyone else. I don’t force my way into others’ conversations with a driving need to express my opinion, yet have no fear of calling a spade a spade, or a diamond a diamond. I can come across as a wise ass, a know it all, a cold hard ass, a sympathetic shoulder, a passionate debater or a non-caring stone. They’re all legitimate parts of me, and different people tend to bring out different aspects under different circumstances. Under all circumstances, I stay true to myself. I don’t pander or jump through hoops for anyone, but compromise easily to find common ground with compromising people.
It’s those who don’t compromise from their own ways and desires who have had the greatest problems with me. Making friends by burying all my thoughts and needs for others never struck me as worth it. Those people can be very loyal, but only for as long as they are getting their own way. I’ve recognized since early adulthood that no one can be liked by everybody, and too often, the harder someone tries, the less they succeed.
That subtle and easily overlooked willingness to compromise and let others live as they would on their side of any dividing lines has also served me well, even when also being some of the greatest hardship to my adjustment. I have to learn to compromise on my own turf more, learn to accept help and adjust to things I can no longer do or control for myself.
That process of adjustment is still underway.

Finding Accomplishment

I get compliments on how well I handle my situation, this limpy-gimpy blind guy routine. Some compliments are direct by words. Others, demonstrated through actions, mean even more.
Things are a struggle, daily and continuously. I’m stating that clearly, without whining about it.
In some ways, I could cope better. My roommate demonstrates awe for my struggle. He says he could not handle it as well. I disagree, because he likes being taken care of. I built my life on self sufficiency, and that has been the greatest loss overall. I know my roommate likes having someone do all his shopping, meal prep and driving. He would not feel an inappropriate shade of shame when he needs to be led from the car to any unfamiliar building. I know this for certain as a roommate and a former employee. He can feel accomplishment for having requested or ordered something to be done and come back later to find things squared away. I always found accomplishment in doing for (and often by) myself.
I still cook, not as well as I once did, but with remarkably few mishaps. On bad days, it is an accomplishment to pour my own coffee and bring it to another room without spilling it. I’ve learned to find accomplishment in small things. I could never paint a fresh even coat in a room again, but I can still change locks.
I believe that luck is an exchange of fortunes and misfortunes that all evens out in the end, between individuals if not for one individual. This whole eye thing, that’s bad luck that forever stole so many of the things that had provided me true happiness. I’ve trudged and limped on since then. The exchange of luck came with my writing. At about the same time as the blood hemorrhage, I started being published regularly. This blog gets good readership, especially since I don’t advertise it outside my website, email signature and Facebook links. My short stories have usually been well received (usually.) I never expected to set literary or commercial worlds afire. Story submission can be grueling and brutal, more often than not a constant stream of rejection for personal and heartfelt work.. Thick skin is necessary. I learned to take pride in the small accomplishments.
My ability to submit to editors is hindered. I used to regularly review all unpublished stories that had been returned for re-submission somewhere else. I can usually now submit only one in the same timeframe. Despite my de-acquisition of responsibilities, I still get called away from the writing with frustrating regularity.
The thing most important to the overall view of my life is the first things that must be put aside. "Life is what happens when you’re busy making other plans," someone said long before John Lennon popularized a similar phrase.
Things are slower with the writing as with everything, but I am plugging on.
I got real close with the very last story I've written, "Stone Soup." A big "professional" magazine, Abyss and Apex, held onto it for months beyond their normal time. They said they had been considering it closely but ultimately chose other material. A bummer, but maybe because I've been spinning my wheels with the fiction efforts so much lately, I find it very encouraging.
"Stone Soup" a Sivil Galaxi tale based on the old folktale but with a couple of my psychotic twists.
It will be available, someday.

Rose Colored Lenses

My fiction piece "Through Rose Colored Lenses" is in its final month as part of the latest issue of the Breath and Shadow online magazine.
http://www.abilitymaine.org/breath/win13f.html
This is the only fiction story to date I have written about being or going blind, and it’s a black humor satire. Other free reads and links to paper publications that feature some of my stories can be found at www.kozzi.us
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Forest for the Trees

"Things are never as bad as they seem
You just gotta learn to see
The forest for the trees...
"Huey Lewis, "Forest from the Trees"
I have the opposite problem from the old, often unclear expression quoted in that song. "Can’t see the forest for the trees" indicates an inability to see the whole for the individual components. In so many ways, physically and psychologically, I can’t see the details for the whole.
I can’t see what is in my vision clearly. My range of vision is also greatly reduced. At home, to walk from the living room and down the length of the house to the bathroom, I can get a sense of the hallway and know the territory, but any cat that walks under my feet gets inadvertently stepped on or kicked. I can’t focus on the end of the hall and the intervening steps. The hallway is clear unless something independently mobile puts itself in my path.
The bowling alley is a similar circumstance. I am familiar with the place. The playing area itself is one of my safest and most stable environments because lighting is consistent and the approach area is clear, all according to the sport’s rules. Navigating through the building from doors to bathrooms and lockers and the lanes I’m playing on is more difficult. I do as well as I do from years worth of familiarity with the place and massive effort. The specific invariable difficulties are inconsistent lighting, especially unshaded fluorescent lights at the front desk and vending machines. Sundays are easier than Thursdays; my locker is directly across from the lanes on which I bowl. Thursdays require navigation of the entire building. If I focus on the final destination, there’s no way to avoid all the people who will step in front of me, thinking I will see them to avoid them. With the differences in lighting, lack of contrasts and bustling people, it’s a slow walk. I need to concentrate on individual details rather than the entire environment.
Psychologically, I need to concentrate on specific trees more than the forest. There’s many things I procrastinated or delayed over the past few years, often with the thought "My vision will be better next week." That was true for a while, but did not hold true over time. I know now that there are things I will never be able to do again. The landscape of my life is littered with ongoing projects big and small that I need to complete, have someone else complete, or I need to give up on with acceptance of the impossibility for me. Becoming handicapped has been a humbling experience that has taught me to re-prioritize. I’m trying to release responsibilities in a responsible manner, make sure batons are passed in workable ways, where other people can pick up right where I left off with minimal disruption to others who are affected by the change.
My more private responsibilities and desires are harder to prioritize. There are things with eventual deadlines that I feel I should have more progress on. My fiction writing gets pushed aside for all the other things that come up. New writing is easy enough, but editing can be difficult, and my loss in acuity for reading web sites is one factor that has pushed submitting work to potential publishers into the nearly impossible category.
Slowly, and with help, I manage most things. Each task done is one less tree in the overgrown forest.

Interpreting Offers

People see a blind guy, and he’s all limpy and gimpy with problems sometimes more evident than legal but not full blindness. Many people are inclined to offer, and sometimes even provide unsolicited help.
Two guys in one of my bowling league give unsolicited help when my team plays theirs. They’ll see me hesitate at the step down into the well. They will flank me and move me down the step by lifting me by the elbows. The assistance is also followed by a pat on the back and a kind or humorous remark.
That type of help grates against my old self sufficiency standards. I’ve never said this to them. The annoyance is one of my personality quirks. They’re likable guys being altruistic and helpful when they see a needs. I sincerely appreciate the efforts, probably in greater proportion than the annoyance. It’s kind, cute in a way, and humorously entertaining.
I’ve learned to accept things like that. The acceptance took time, and the resistance definitely originated in my personality. I can be surly and abrasive like that, one of my many personality flaws.
But there’s another aspect of my personality flaws that maintains a positive effect. I feel and express appreciation for things done to me. I have a bemused gratitude for each time those two bowlers have lifted me up or down that precarious step. I have a tendency to cultivate too much appreciation for people who do small things with willingness and natural humility. Sincerely and freely given efforts at even small and relatively insignificant things earns somewhat disproportionate appreciation from me. I am one of those people who feels awkward asking for help. When an entire process where the help and getting it is easier than expected and remains dignified, my cynical expectations are surpassed. The best general circumstance I can compare this to for the non-disabled is the retail return of something defective, when you expect resistance from the store but find them friendly and accommodating.
I use the word cynicism with careful intention. My condition can bring out altruism in others, and that is not always sincere. I’ve learned that generally vague offers of any kind of help, especially the offers that begin "If you ever need..." are best avoided. Politically minded people are particularly prone to making empty offers, because they know they sound good publicly when heard making the offer. They are creating a public persona of altruism and express incredible inconvenience and frustration if actually taken up on such offers. It becomes a highly undignified process just to get a ride home from someone who lives a quarter mile away. This is a sharp contrast to people who have gone and are willing to again go miles out of their way to help out.
It’s another of life’s tightropes to walk. My reluctance to accept help has unintentionally offended friends with good intentions and intentionally offended people who only pretended to be friends. I have a tendency to say what’s on my mind, good or bad, with cold, analytical demeanor. I’ve developed a tendency to not test the sincerity of casual offers because sometimes I’d rather not know which people are fair weather friends.

Charcot Revisited

The Charcot "sharko" Foot seems settled and healed. Perhaps I should do another visit with the good foot doctor, Thomas Mancini, before declaring that, bur I say so from observation of my own body.
The biggest "wild card" advantage I had during the Charcot cycle actually came from the retina reattachment. I was dropping prednisone into my eye, which regulated and reduced the swelling.
On the eye doctor’s advice, I ceased the prednisone. I did this with reluctance; when I tried getting off the prednisone in spring of 2012, the Charcot Foot, then erroneously declared "past Phase One according to Doctor Dumbass, flared worse than before.
This time, judging by the lack of a flare up, Phase One was truly over. The leg has not reswelled with discontinuation of the eye drop prednisone.
I had discussed the side effects of the prednisone with my eye doctor on previous occasions. She wrote off the stomach problems as a probable diabetic thing, perhaps bad kidneys. Maybe her opinion changed the morning she treated the post-victrectomy pressure build up. That was a bad morning altogether, even before she stuck a needle in my eye. Perhaps watching me retch acidic bile convinced her that the prednisone was having the stomach acid overproduction. Who knows? Maybe my puking in her trash barrel was the real reason she stuck a needle in my eye.
With the prior massive swelling of the left leg below the knee last fall, my already hindered diabetic circulation was further impaired. This had led to the gangrene infection on the toe, the problem that sent me to Sturdy Hospital in May. That all recovered nicely, without amputation but with a loss of some fleshy tissue from the big toe. More devastating, the swelling reduced circulation to the structure of the foot. I did not particularly stay off the foot, particularly with Dr. Dumbass telling me all was well. During this time, the bones could not get the nutrients they needed. Those nutrients were there; the semi-regular blood tests always show my calcium on the high end of the scale. While swelled, the center bone of the ankle and the inner portion of the hell bone weakened, rolled and collapsed. My right leg shortened about an inch, and it will never be safe for me to put weight directly on that ankle. The crow boot I wear everywhere except to bed and in the shower keeps the weight off and protects the leg with immobilization. I don’t complain about the Crow Boot. Without it, I would rely on crutches, and there’s not as much I could do with my hands otherwise occupied. The immobilization by the Crow Boot has had its own side effect. My calf muscle has diminished, to the point that it is noticeably smaller than the left calf. The Crow Boot is not a temporary cast or brace, but a permanent fixture.
It is what it is. I am accepting about it, even when I freely acknowledge that the combination of bad leg and blind eyes is a particularly difficult combination.
Difficult, but not insurmountable.
　

Turning a Blind Eye

Maybe one day, it'll happen to you,
you know lighting strikes without warning!
Who'll see you struggle and who'll hear you cry,
when everybody there just turns a blind eye?
"Blind Eye," Graham Goble as part of Little River Band
Occasionally, I find or seize advantage in my disability.
Don’t get me wrong. No temporary or fleeting convenience can ever compensate for all I’ve lost. I miss driving. I miss reading. I miss being able to watch a movie. I miss being able to observe people. I miss the clear and colorful world and all its little details that I cannot capture on my own. I miss working in my yard and plowing snow. I miss my independence and self sufficiency, things I worked so hard to develop.
I miss taking the trash out. I still do that when my roommate is not around sometimes, during daylight hours when I can see well enough to het down those thirty-four stairs to the barrels. If he is around, my roommate yells at me for doing it. He’s wrong to do that, but the fact that I have fallen down the stairs carry it out puts shades of gray into that statement. I miss being able to do things and being left alone to do them. Now, many people offer help that while appreciated, would be taken better if it was actually offered rather than forced. The situation of increasingly lost self sufficiency has hit me hardest. I can’t do much, and I used to do so much. I still wake some morning, and before opening my eyes, start telling myself I should do this or that item on long neglected lists. When I finally do open my eyes, I remember why that list of things I :should: do got so long. Despite sporadically failing health over the past year, my father helped me or more accurately did for me a number of things I could not do and some others could not do right.
I have not reverted to seeking every easy way, something I was firmly warned against at the age of 17. Now things are just too hard to get too wrong on my own. I realized last fall that I would have to leave my house. This month’s experiences of the blizzard and the loss of my father have only emphasized that.
When it comes to coping mechanisms, I do actively exploit the advantages of being blind. I got out and tried some shoveling, only to learn I really can’t do it. That’s a hard realization to accept. I can block it out even easier now because I can barely see the contrast between snow covered areas and the street’s bare asphalt. Just looking out the window isn’t enough for me to see; if I avoid a prolonged gaze that gives time for adjustment to changes in light, I can block out that stress rather easily. Out of sight, out of mind.
I stated that I dealt with my father’s death perhaps too well. My poor vision helped that. I could not see him in the casket. I could hear my mother’s reactions, but my disability spared me the sights. This worked with my cold core to keep me unemotional throughout the experience.
I cultivated that disability on that sad day. Even adjustment from eyes closed to eyes open needs time. So I kept closing my eyes and then reopening them to keep the adjustment from happening, to keep a blind eye to things too hurtful to see.

Blocking It Out

Two things have me thinking about the mentor who took me under his wing when I was 17 and helped me find and develop and focus personal strength through my adulthood. The first was a comment on an old post here ("Finally, a Good Doctor") that asked about how I found center for my writing and overcame start of day writer’s block.
The second factor was the February 18 death of my father. This family trauma predictably ushered in a lot of family drama. I handled everything OK, maybe too well. My father and I had our rough periods. Extended family seem to fall short of understanding how I always avoided the list of disowned kids and grandkids. My family, including myself, we are not easy people. I can’t answer how I held on through specific rough times, but in general, the emphasis and a level of blind loyalty to family is something the old mentor specifically developed, sometimes even when he was also saying "You don’t go mentioning me around there." No, I am assuring my readers, the relationship with my mentor was not a form of "Greek apprenticeship."
The issues of my writing center and getting by with my family both stem to the guidance I received when I was 17 to 18. In short, the mentor had told me about negative things, "Block it out." That’s easier said than done. It’s not advice I was able to say "Yeah, sure," about and just do. I developed the skill over years. I’m still a work in progress.
I started writing at age 13 as a means of escapism. Fleeing to space now known as the Sivil Galaxi gave me a refuge when life on earth got to grim. I blocked out the grimness with distractions. I wrote longhand in those pre-PC days and carried a loose leaf notebook anywhere and everywhere. My father had times of direct pride in what I was accomplishing, but little specific encouragement or interest came from family. It’s possible that any interest they would have shown may have invaded my private places. I don’t think my father could understand that escapism aspect; when I was reading Lord of the Rings, he told me he thought only people with problems with reality read that type of thing.
I blocked out the bad things with my writing, with work, and sometimes with music. I block things out long enough to make any situation less stressful, then I deal with it head on. I have found myself both respected and despised for my tendency to be direct, my willingness to meet confrontation and call out bad behavior with some of my own, my knack of saying what other people will only think. From those kernels planted by my old mentor in 1986 and 1987, I did learn and internalize that not everyone can be pleased, and that what others say, think and do doesn’t matter if I am not treating them wrongly. There’s important distinction there; I question myself. I do not get from others or give to myself a blank slate to trample others. I hold to my beliefs and opinions without deeming those who don’t agree as automatically wrong.
I hope that earnest humility and willingness to agree to disagree comes across in the blog. I’ve seen many people’s surprise when they realize that I enforce my ethos (and pathos) only to my own life and maintain the feeling that everyone needs to make their own decisions about their own lives and tolerate everything on the other side of that line drawn in the sand.
I owe most of these unobvious good qualities to someone who helped me out so much in so many ways so long ago. His time was not wasted, and I have tried to live up to those ideals ever since.

Undue Influence

For a year stretching between 1986 and 1987, I was fortunate enough to have a mentor. I worked with him at the long-defunct restaurant The Maple Root Inn, and greatly considered him a father figure. Despite working two jobs and being utterly dedicated to his wife and four kids, he had taken this punk kid under his wing. He provided direction and outlook that was desperately needed. I really needed more than he or anyone could give. I am not a child from a "broken" home, but things were pretty badly shattered and had been for years. I’ve regretted the loss of the mentor but never blamed him and did my best to implement the things he taught. I was lucky to have him. His influence includes balancing loyalties to both myself and the troubled family, fighting my own lazy streak and what was then (if not still now) my crazy streak. I still think I never succumbed to drug addiction or alcoholism due to his influence.
Those coping mechanisms laid out for me so long ago have carried me through my life, particularly with the strength needed to get through these past few years as my eyes and leg have failed me. I had an inherent but inconstant strength, but my old mentor taught me how to tap into it and provided direction.
A lot of people, including some who do not particularly like me, have been amazed and complimentary in how well I have dealt with the disabilities. I credit that strength to the old mentor. I credit the strength to have stood tall and strong through so many things over so many years to the influence of someone I have not seen since 1987.
At http://www.kozzi.us/LongWay.html,
I have posted an essay published in 2006 by Dana Literary Society Online Journal. This essay dealt with a lot of things that have come up over the past month, including family irregularities and vulgarities and the fact that I am living in a very difficult property to manage and maintain at the best of times. The essay made it clear that I relished the challenges of daily life and the little difficulties that reminded me I was alive. That outlook also came from my mentor, who’d asked pointedly, "You have to have everything the easy way?"That challenge adjusted my attitude and energized my efforts. I don’t give up on this because they prove difficult.
That outlook has been invaluable.

Bowling Blind

I am still bowling. I’m blind and need to wear the orthopedic Crow Boot at all times, but I’m still out there trying. The Crow Boot is allowed, but I need to cover it to make sure that I do not introduce foreign objects to the floor as these could pose hazards to others or damage the lanes. I wrap the Crow Boot in a pillow case and secure it with a couple bungee cords. I chose dark pillow cases so I would pick up evidence if anyone was illegally using powder on their shoes.
Bowling is not easy. I’m contending with not being able to see the pins. My teammates tell me what pins remain standing after the first ball. I line myself up by the contrast between lane and gutters and hope for the best.
The Crow Boot is not always stable. The pillowcase can puff out and pose a tripping hazard to myself. My foot does not always feel stable or level inside the boot. I can be misaligned to the lanes and not fully realize it.
Sugar fluctuations plague me even more often. My sugar is inclined to fall suddenly with the onset of activity, and the bowling is the most exerting thing I do in life. Actually, it’s one of the few things I do.
My fourth barrier to success this season was my choice of purchase place for my new ball. I changed only because my blue ball blended in with all the other dark balls on the return rack. I bought a cow print ball just so I could see easily which one was mine. I could have–and should have–gone through the pro shop at the lanes, but I wanted to buy local to me and not in what I figured was a captured audience. I went to Bowler’s Edge in Pawtucket, essentially in my neighborhood. That was a mistake. He ordered the ball and said it should be in next week. He forgot to mention he would be on vacation for two weeks. When, a month later, the ball came in, he ignored my mention of being blind and needing to throw a straight ball and he drilled the finger holes for a hook ball. I certainly won’t be doing business with him again nor would I recommend him to anyone.
I started off lucky this year, but all the various handicaps with me and the ball before it was filled and redrilled played havoc. I was trying to learn to bowl with the Crow Boot, increasing visual impairment and a ball most definitely not reacting to my typical throw. I had plenty of nights where breaking 200 was an impossibility. That’s a 200 total between three games I could not do. My high game was a 157. I had to take time off from both leagues post victrectomy, and seem to be going a little stronger now.
I need of course to acknowledge my teammates in both leagues. Almost all are new teammates this year, and have been accommodating to my gimpiness. I am in less competitive leagues, and while I tremendously miss some prior years’ teammates, I still feel lucky to be bowling with such understanding people.

Eating Crow

I mentioned the orthopedic brace that is a permanent fixture, but neglected to ever cover what it was here. It’s called a Crow Boot. Pictures are readily available through any online search. I could post one here, but considering the blind angle, I decided early on that this would be a text site with no pictures.
The Crow Boot has two halves, upper and lower. It’s made of lightweight but highly durable black plastic and is lined with lightweight foam. When fitted for it originally, they took a cast mold of my leg. They have had to add foam as the Charcot swelling on the leg decreased. My foot goes into the lower half. The upper half then interlocks and is held in place with velcro.
The Crow Boot is needed because of the Charcot Foot. As it turned out, prednisone being dropped in my eye post retina reattachment went to work on the swelling of the Charcot Foot. When I had temporarily discontinued the prednisone, the foot swelled back up worse than before. My underlying injury seems to have been tendon damage rather than a broken bone, and the foot thickly swelled up to and even slightly beyond the knee. This swelling reduced circulation already naturally impeded by more than 35 years of diabetes. Oddly enough, as long as I kept exerting and moving I was fine. When I truly stayed off the foot–after last May’s development of a toes infection also triggered by the lack of circulation–the ankle collapsed. The central bone in the ankle, the one on which the tibia’s cupped end sits, and the inner part of the heel bone soften, collapsed and twisted. My right leg is now about a half inch shorter than the left.
The Crow Boot does nothing directly for any aspect of Charcot Foot. It compensates for the structural collapse and weakness that is a permanent disability.
The Crow boot immobilizes the ankle to make sure I cannot do further damage to myself. It also diverts weight from the ankle to the ball of the foot or the upper calf. It has a lifter to compensate for the different leg lengths.
I wear the Crow Boot when not in bed or in the shower. Even to get up in the middle of the night for a leak or a snack, I need to put the Crow Boot on. I’m still living in a place with way too many stairs for a blind guy with a bad leg.
Without the boot, I would need crutches. Times when I do "cheat" and use neither the boot nor the crutches leave me feeling the error for a few days.
I do not complain about the boot. I’d be able to marginally get around on crutches, but all these stairs would be a lot more difficult, and I would not be able to bowl. The Crow Boot is bulky, and on my right foot, so I probably would not be able to drive with it due to pedal spacing, but driving was lost a half year before due to the eyesight. The boot is inflexible at the ankle and sole, so even slight bumps or lumps in a smooth surface can make me feel like I am about to fall over.
When I say I am limping along, I mean that literally. Blind eyes and a bad leg is an especially bad combination.

Golden Starches

In December’s diet for/not for diabetic series, I did talk about the three basic things I never eat. There’s a fourth, in a broad category defined by brand. That is McDonald’s.
Maybe it was easier for me to stay away from McDonald’s than it would be for most people because I detest onions in all forms. That’s a plus for me as a diabetic.
My parents noticed since the onset of my diabetes that McDonald’s always triggered high sugar surges no matter what was eaten. Burger King, Burger Chef, and Dairy Queen did not have this effect even with directly comparable meals.
As an adult I noticed that a McDonald’s breakfast did not seem to trigger such high sugars, but I could never figure out the specifics. I thought maybe they added sugar to their frying oils or to the grills themselves. Maybe fries had a sugar coating that leaked into the fryers.
I learned more recently the direct cause. A former manager who was retired due to disabling complications of his Type 2 diabetes spilled the beans.
The sickness uniformly inflicted on diabetics by McDonald’s food is directly related to all the health problems caused by the chain’s food. The secret is not within the fries and oil or meat. It was fully compatible to why the Egg McMuffins never seemed to bother me.
McDonald’s sandwich bread is more this composite of sugar, old-time lard, sesame seeds and just enough wheat for the alien product to be classified as bread. There’s some exaggeration in the way I wrote that for attempted comic delivery, but the general content is accurate enough. The sandwiches may have the taste you want, but eating anything on the luncheon rolls is traitorous to the diabetic body.
The nature of McDonald’s bread-type products explains the sugar spiking tendencies, the calorie content and the cholesterol costs.
Neither Burger King nor Wendy’s ever had such severe effects on me. I state this as a diabetic who always managed his condition by feel, not by sugar numbers. McDonald’s always made me feel unwell while its competitors did not.
I’ve avoided most fast food whenever possible. I lean towards Subway whenever lunch on the run was something of a necessity. The alternatives are just healthier and the vegetables more diverse.
That does not mean I’ve been perfect, but that I choose healthy options whenever possible or productive. If I need a boost before bowling, I am inclined to snatch a couple Burger King cheeseburgers. The food itself does not overwhelm me as McDonald’s will, and Wendy’s burgers are usually dressed with mayonnaise rather than sugar-rich ketchup. When I stop for those burgers, I am eating for the sugar rather than enjoyment. Burger King burgers seem to have gotten smaller yet again.
I do not view McDonald’s as a viable choice under any circumstances.

Impaired Driving

For years, I drove despite one eye total blindness.
I did not drive overmuch. I bought the jeep Wrangler in late 2005 with 115,000 miles and sold it in December 2012 with about 145,000 miles. I was mostly local and worked out of my house and mostly in my own neighborhood. I planned shopping of all sorts for one day per week and generally gassed up to a full tank on that day, need it or not. Less than once a month I would make a strip to New Hampshire or Southern Maine on business for an antique dealer for whom I worked.
I had no accidents. Certainly other will find this post via search engines when their driving is "prohibited" when they develop problems in one eye. Here’s some tips and cautions.
Always remember that everyone assumes you can see them. You must be a defensive driver who anticipates everyone else’s stupidity.
The people in your life will always have reservations, concerns, and opposition to your driving. To get angry about this is to be angry that they care.
Your field of vision is reduced on the side you cannot see out of, so you must compensate for that. My blind eye was on the right. I stopped making left hand turns at uncontrolled intersections, which require a full range of vision. I’d turn right, then make a safe left hand turn and circle the next block. The safety far outweighed the inconvenience. Passengers who objected to the roundabout ways were asked if they would prefer to walk.
I still tended to be a cowboy when I knew the immediate area was free of hazards. This could make people who knew I had eye difficulties very nervous.
Pedestrians will always be a problem, and if you can’t see perfectly, you are extremely likely to miss some spots when washing their blood from your fenders. When driving through parking areas, drive slowly and with the destination building on the side of your good eye. Better yet, drive on the accessway further away from the building. Again, people will always assume you see them.
Park in what are called "sprews." A sprew is a spot that you drive into the bumper-to-bumper adjoining spot and pull through to the next. When you leave, you can pull straight out rather than have to back into the accessway where drivers can carelessly rush you and pedestrians can walk behind you. This means you can’t often park close to the building, but the ease in getting out again was always worth this sacrifice to me.
Don’t resume driving until you’ve had time to get used to the missing depth perception. Depth perception tends to be less important from four to six feet away as your brain will fill in the differences. It will take time to get used to and develop those "automatic translations."
And the basic stuff that applies to all drivers becomes even more crucial. Don’t drive overtired, after any alcohol or on any new meds. Don’t drive with distractions. Need to use the cell phone? Pull over.

The One Eye Plow Guy

My right eye went dark in 2003. I failed to leave a cornea abrasion covered long enough. The eye looked around the obstruction. The muscles pulled to the outside and peeled the retina off the back of the eye. Diabetic retinapathy, opportunistic of other problems.
I started plowing in 2006, in part because other peoples’ unreliability had crossed all acceptable lines. The city had thoroughly plowed me in, not just with a massive plow ridge, but by moving the snow from the main street to the dead-end access that led to my parking. I had a contractor plowing, but he vacationed to Florida every February. I have not driven since October 2011 but only sold the jeep two months ago. I’m feeling that loss and it triggers feelings of uselessness and helplessness via things outside my control. These things are issues I had handled after experiencing them but have come full circle.
I can only accept limitations. I can only try to impress those genuine limitations on others. A blind guy with a bad leg and reliance on an orthopedic boot brace cannot go shovel someone else’s car out.
I was good at the plowing. The first snowfall after I obtained the Jeep Wrangler was a minor but complicated storm. An inch of snow fell, then turned to rain. The precipitation stopped when a cold front blew in and froze the slush. Wanting to practice and play with the new equipment, I plowed the properties I managed. The tenants were thrilled. Their home lots were bare dry pavement while everywhere else, work, commercial establishments and most municipal streets, were slicked over with layers of ice that remained for days.
I no longer have the equipment to do that because I am no longer equipped to operate the equipment. I did not stop driving because someone made me, or because I had gotten into a serious accident because I was driving past the time I should have been. I stopped on my own because I didn’t want to kill myself or someone else.
Medications combine with insulin fluctuations to trigger periods of vertigo. I have a hard enough time moving and standing without carrying things when the ground is smooth and dry. Snowstorms had been my active times since 2006, and also periods of productive alone time. I miss those aspects. I would prefer to be able to continue some of them, but that’s now physically possible for me any longer. There’s a negative emotional charge to the entire situation for me.
A Wrangler is one of the shortest vehicles that can handle a plow (and I still burned out two transmissions.) Mine was equipped with the narrowest plow blade available. I could get into tight areas despite the fact that my field of vision was reduced and I lacked depth perception. I really was performing beyond my physical capabilities
Those physical capabilities are further diminished now, permanently. I am learning to accept that. Can others do the same?

Snowblind!

I write from Providence, Rhode Island. I am told by roommate and TV media that everything out there is covered by some 20 inches of snow. I can’t see for myself.
It’s not just that basic fact that depresses me. I used to drive a Jeep Wrangler equipped with a plow rig. I never went out and hustled work, but used the truck to maintain the buildings I managed. I picked up occasional local jobs, but the purpose of owning the rig from the beginning was to be self sufficient. In 2005, the city ran out of space to put the snow on the main street and had plowed in the side street that serves as only access to the parking.
I sold the Jeep and plow rig last December, long after I should have. I had last driven it in October 2011.
There’s no self sufficiency left, for the storm or the property management or much of anything else. Things I was real familiar with I can still do. That list grows short. The combination of blind eyes and structurally deficient leg is a particularly bad one. I can’t really shovel 3 inches of light and fluffy snow. Twenty inches of the wet and heavy stuff is beyond me. I know that. I’m not writing it to whine or solicit help, but to add a layer of acceptance to my condition. Like not selling the Jeep for fourteen months after I could last drive it, sometimes the coping mechanism works slower than "it should."
The more valuable analogy for this post is the blizzard blinding white out. My eyes are like that all the time, although the level varies. Car visibility is measured in quarter miles. My visibility is measured in feet, but the cause and effect are identical. If there’s too much gunk between you and what you’re looking at, you just can’t see it.

The Coping Mechanism

I am permanently blind, not from the Cialis-induced vitreous hemorrhage, but because of the PRP laser treatment inflicted by Dr. Michael O’Brien of Koch Eye Associates. I think his employer is as much to blame as Koch has advertised for PRP patients rather than eye tests to see if PRP treatment is prudent for specific patients.
But I still see it as my own fault for letting myself be scared into it. "O’Brien had said, "You’re probably right about the Cialis, but what if you’re not?"
Yes, three years later I remain angry and bitter about this, and other massive "wrongness" from the Koch offices and associates.
I suppress the anger and fight the negativity on a daily basis. Some days don’t succeed as well as others. This is a pattern that has enshrouded me for my entire life. I won’t get into why that’s so. Who wants to hear self pitying whining?
I’ve lost maybe eighty percent of my life to this, and maybe more. Nothing is the same and everything is different, every function, every relationship.
My blindness is legal blindness. The left eye is not dark, just greatly impaired by a few different factors. As long as I have that bit of vision left, as long as I can still find the fridge and the toilet and the keyboard, I can make the most out of what I have left.
I have to content myself with that.
I will content myself with that.

Rosy Lenses

The online magazine Breath and Shadow is carrying my story "Through Rose Colored Lenses" in their current Winter 2013 issue.
My friend who is most involved in my writing was surprised. He thought this story was non-fiction, so was a bit surprised by the content.
I wrote the story in 2010, targeting for an anthology about life in the near future. I was disappointed that the editor did not take the story. He was working for a small time publisher I had worked with. I didn’t take the rejection personally, but some factors added to the feeling of rejection. I had read a bit of work by that editor and thought the edge was right, and that the story worked on at least two interpretive themes of the anthology’s proposed title.
A rarity for me, I followed the project. I discovered another minor published story by the editor and read that. It eased me into an appraisal that the editor was what I deem a Harlan Ellison Wannabe; failing that in writing he was turning to editing. When the contents were announced, I felt a little bad for the publisher for having financed a project that was almost exclusively composed of stories by friends of the editors. Only one of the writers in the anthology had been written by someone now personally known by the editor on some level. I wasn’t angry by the circumstances, but they left a sour taste in my mouth. I shelved the story for two years. The publisher has printed at least one other story by me since then.
Things worked out well enough. Breath and Shadow pays more than the anthology, and they were only the second submission of the story.
Those who know me well enough will recognize by many aspects that the narrator of "Through Rose Colored Lenses" is not me. The story was inspired by the things that set my disabling circumstances in motion, but is not really about them. It’s a satire on the pharmaceutical monopoly and its machinations.
The story’s narrator pretty much gave up while I’ve been stubbornly fighting on.
The story can be read at http://www.abilitymaine.org/breath/win13f.html
It’s open online, a free read courtesy of Breath and Shadow.

Adjusting

I’m coping OK. Not perfectly, but OK, and many people in my life think I have been dealing with the blindness and then the Charcot foot better than they or most people could.
What I miss most and have accepted as unrecoverable is the ability to read. This specific handicap should not have happened. When being "prepared" for cataract surgery, I should have been told about lense options, as well as the risk factors to diabetic retinapathy. I was warned of neither. Dr. Paul Negrey of Koch Eye Associates chose a far-sighted lense for me. This killed my close vision. Glasses greater than 6.0 magnification–twice the strength of what is allowed to be sold as over-the-counter reading glasses here in Rhode Island–still don’t allow comfortable reading.
This is frustrating enough in things I can do–usually–such as figuring out what kind of soup is in an unopened can by recognizing word patterns and shapes and making an effort to remember what varieties I bought in different brands.
I can read the computer only with a series of enhancement. Reliance on a magnifying mouse as one of those enhancements has me unable to see an entire web page as a whole. Before the 2009 Cialis-triggered catastrophe, I had done professional web design. Now I am an even better judge of poor design and navigation. The teenagers and twenty-somethings who lead the field don’t factor in reduced or handicapped vision needs when promoting hover menus, small typefaces and busy layouts.
Audio books can replace novel reading, to certain extent. Rhode Island does have a great interlibrary loan system. I’ve gone through all of Kate Wilhelm’s Barbara Holloway mysteries and Sue Grafton’s alphabet. I’m pushing through Lawrence Block’s body of work with considerable enjoyment. But classics can be problematic because there’s no way to glance over the boring parts.
My unread home library consists mostly of out of print classic science fiction. Not a lot of this is available in audio.
I most miss what had been my greatest source of "childish" escapism, comic books. My interest had been waning for years, but at the time of the vitreous hemorrhage, my long-time favorite Alpha Flight saw publication of a new 8-issue series. My eyesight continued to decline and I was not able to read beyond the third issue. Now I have trouble even discerning covers and logos
Worst, on the most personal level, I have been unable to read the hard-copy versions of the anthologies that have published my work in the past few years. I can recognize the shape of my name in print, and have to content myself with that.
I’m adjusting well, but it’s not always easy.

Getting Complicated

The post-op complication of the victrectomy was an intense rise of pressure in the eye five days after the procedure, during which the silicone oil placed inside the eye last year was swapped out with saline solution.
Pressure problems in the eye are known as glaucoma, pretty much whatever causes it. I traditionally have and maintain good eye pressure, usually between 14 and 18. Over 25 is a cause for some concern. Following the retina reattachment the pressure rose when my doctor allowed the elimination of drops that regulate pressure. That prior and temporary effect did not cause the agony that the recent spell did.
My roommate was tempted to bring me to the hospital. More cavalier, I took percocet and Nyquil and went to bed. The roommate called Doctor Krzystolik’s answering service after ten. She got back to us with willingness to meet us at her office at midnight. I deferred to 7 AM, and the doctor met us then in her office local to me, without any assisting staff.
I was candid that I had lifted and exerted more than I probably should have. She said that effort probably did not cause the problem. One friend did try assigning blame to Krzystolik, that she may have overfilled the eye. I reject the entire line of thought as desperately seeking to assign blame to a standard risk of the procedure. Unlike when I was afflicted with cataract and PRP treatment by associates at Koch Eye, Dr. Krzystolik has been clear and honest with every risk of every step. This blog shows I am not afraid to assign blame and point fingers when appropriate. I don’t find it appropriate this time.
She relieved the pressure by reducing the fluid in the eye with a needle through the center. My roommate was astounded that I didn’t even flinch. I felt it, but it didn’t come across like you’d think a needle in the eye would. I’ve been told by doctors and others that I have a high pain threshold, so I may not be the best judge.
She repeated the process in an appointment later that afternoon. My roommate didn’t watch so closely that time. Through the reduced pressure and regulating drops, the eye pressure has stayed in its normal range. The needles caused two more of those bubbles or cornea scars, but these have also diminished as time marched on, day by day then week by week.
Her willingness to meet me any and all hours and her subsequent treatment have raised my regard for Dr. Krzystolik. The eye still gives pain, but this is manageable with over-the-counter relievers, I’m limping along with my usual steps and stumbles, which my roommate often finds comical to watch.

Victrectomy Post Op

I described "scars" on the cornea that I thought were left from incisions necessary during the victrectomy. This procedure involves draining the eye of existing fluids and replacing it, usually with saline solution. My highly recommended retina specialist who performed the January 10 procedure, Doctor Krzystolik, said that the circles I can see are more likely to be drops of the silicone oil that was put in my eye during the 2012 retina reattachment. Her theory is probably the case. She’s the doctor and has more experience in these things. From my perspective, the larger circles have begun to either dissipate or have merged.
My vision has changed since the recent procedure, mostly for the better. I can see better at a distance of about four feet, but not particularly clearly or in detail.
Light sensitivity remains a major problem and affects me in different ways. The computer is still problematic, but in different ways. Prior to the victrectomy, I managed the computer by using a 32-inch TV as a monitor, with the screen zoomed in, with a magnifying mouse, and with glasses. Now the glasses actually hinder view of the monitor but remain necessary for me to see the keyboard.
Of course, having a cataract lense that blinded me to close vision remains a major problem. The "Cataract" label will bring up most of the old history on that, as would many of the posts under the "God Complex" label.
I feel more discomfort from the eye since the victrectomy. Redness in the eyeball is common. They eye often feels itchy and raw, and it tears often, as in wetness, not ripping. There’s also frequent pain, in the eye, the socket, and headaches that radiate on that left side of my head.
The pain was worst five days after the surgery, to excruciating levels. I have a high pain threshold, so I can’t imagine how others might describe what I was feeling.
I blamed myself for this onset of pain, because I had exerted that day, lifting barrels of ice melting salt and carrying groceries up all the stairs necessary to get home.
Doctor Krzystolik said she didn’t think the exertion caused the problem.
I was suffering a side effect from the procedure....

Not Blaming the Blameless

On opening my eyes without bandages and shield following the victrectomy, my vision was improved. Dr. Krzystolik had not been convinced, but I had theorized that this procedure of replacing the fluid in my eye would improve my vision because the new fluid put in my eye would be cleaner. I’m happy to have been proven correct on this, not in any sense of "knowing better" than the doctor but because my vision is better than it was before the procedure.
My vision will never be fully functional. Two great loves of my life are permanently lost to me, reading and driving. It can be hard to explain what I can and cannot see at any given time. It’s not just diabetic retinapathy that limits my vision. Obstructions, light sensitivity, cataract lense restrictions, muscle damage within the eye and other factors all contribute variable conditions. Doctor Krzystolik herself noted on her first examination that I had the most complicated eyes she had ever seen.
I like and respect Doctor Krzystolik. She has been cautious in promising expectations following any treatment. She has told me what I cannot expect for improvement. She has listened to me on every level and addressed some aspects of coping with what’s been going on.
I can’t emphasize enough my approval and satisfaction of this retina specialist with offices in both Providence, Rhode Island and Plainville Massachusetts, for two reasons. First, I have been so candid on this blog when doctors have done wrong that I feel it fair and necessary to accentuate the positives. Secondly, the victrectomy saw complications for which I do not blame Doctor Krzystolik.
There’s a schoolyard oath that I must have vowed then broken during my wayward and turbulent childhood: "Cross my heart, hope to die, stick a needle in my eye." That theory is as useful as if I wanted to blame Doctor Krzystolik , which I don’t.
I think rightfully I still blame Negrey and Michael O’Brien at Koch Eye Associates for most of my current and permanent disabilities. Doctor Krzystolik , however, has done her best to temper those conditions and correct what she could, all without pushing me towards things with a lack of necessary information.
Details of the surgical complications to follow.

Surgical Scars

Following the victrectomy, I have spent a lot of time with my eyes closed. I used bandages and shields longer than recommended to keep the left eye dormant. I don’t exactly do much these days, especially while I am supposed to not exert and thus strain muscles that may be connected to the eye, so this has been mostly manageable. My reasoning ties directly to the experience of the complications that darkened my right eye ten years ago.
Back then, my right eye misaligned as the eye looked around the obstruction caused by a temporary cornea abrasion. I recently had an inexplicable minor abrasion on the left eye, which I did not worry about because I couldn’t see out the eye too clearly anyway.
Post victrectomy, the cornea is more of an issue. The procedure involved draining the eye of silicone oil and refilling it with saline solution. I didn’t ask many details about the procedure, because I didn’t want to know details that sound horrific in theory. But my basic ideas of sticking something in the eye to drain and fill seemed about right.
There’s scars in the cornea. They are at the bottom of the field of vision, but can rise to more central prominence as the eye looks around. I tend to look at the scars as they strike me as cool in a morbid way.
The most prominent are three perfect dark rimmed circles in the formation of an upwards-pointing triangle. Aside the dark edges, I can see through these bubbles. There’s a fourth circle to the right of the upper part of the triangle. I can really only see that one when I focus on the strange pattern. Two much smaller circles will also become evident These are the scars of needles or hoses stuck in my eye during the surgical procedure.
I do not expect these scars to be permanent. But until the limited cells of the cornea resettle, the formation is a distraction to my vision. I’m pretty confident that the circles are on the cornea as the formation realigns when I focus on it. The triangle spreads out or flattens and the smaller "needle holes" will rearrange around the larger circles. Unlike the retinapathy flashers or the scar of "light" that is the mark of the original Cialis-induced vitreous hemorrhage, these scars are only visible when the eye is open and hit by light. Closing my eyes makes the circles go away. The next time I see them, they return in their original formation.
I am afraid of any instinct to look around the scars, or to focus on them. My right eye suffered permanent damage to the internal muscular structure by looking around the minor obstruction on the cornea.
I figure better safe than sorry, and the closed eyes help ensure I take it easy during the healing process.

Blinded on the Right

Wearing the bandage and shield following the victrectomy is a difficult thing. My right eye is blinder than the left and has its own set of complications.
I don’t usually realize how much the right eye can see because I rely on the better left eye.
The right eye suffered a cornea abrasion in 2003, ten years ago this month. Due to an incident with an idiot and a hot, heavy steak fry, I’d previously had a serious cornea abrasion and knew how to take care of it. Unfortunately, I didn’t take care of the 2003 incident long enough. While active and routine risks had passed, the cornea still contained an obstruction, which my eye looked around rather than through. This made the eye pull to the right. Muscles striated and diabetic complications developed. The right retina detached. The eye went dark except for the outside perineal and a pinhole that aligns with neither the left eye nor my brain’s expectation of where it is looking. The reduced vision is further obstructed by a cataract. When she first saw me, Doctor Krzystolik said that I had the most complicated set of eye problems she had treated, and I don’t think she was exaggerating or that I have been surpassed.
The time of reliance on the right eye was thankfully short. It’s been remarked that I have great aim for a blind guy; that was no longer so true when what I see is actually shifted in position from where I see it. I miss when I put things on the counter. (Yes, we’re out of the bathroom now.) I am more likely to walk into doors and the edges of walls when relying on the right eye. Except for the bad aim, my roommate finds it comical, all except for the bad aim. My realization that the tub presents a much larger target alleviated his burden.

Oil Change

During the January, 2012 retina reattachment of the left eye, the dirty vitreous fluid at the center of the eye was exchanged with silicone oil. Yeah, I guess that amounts to a boob job for the eye. Lucky me, I guess, that no one told me it was too round.
As the vision diminished through 2012, my theory was that the silicone oil got dirty with detritus from the beleaguered eye. Doctor Krzystolik wasn’t too sure, but her reattachment seemed to hold in place and remain healthy looking in and of itself despite increasing vision loss.
This past January 10^th, she performed a victrectomy. This seemed less risky than the reattachment as it seemed more basic. Instead of elaborate "welding" on the back of the eye, they would simply be changing the fluid on the inside to a saline solution.
I was surprised to hear the potential risks as Doctor Krzystolik read them off, but these factors did not encourage the slightest hesitancy. I’d gotten too blind to do nothing while any hope remained.
While some doctors do these victrectomy procedures under local anesthesia, I was put under. Maybe Doctor Krzystolik was afraid I’d wake and start giving directions or criticisms. I’d had local-only during the cataract surgery and prefer total unconsciousness and just waking with everything all done.
A bandage and eye shield were set in place. I would be unable to determine any change until the end of the day when eye drops had to be applied.
My range of vision is improved. I can see the knobs and pulls on kitchen cabinetry from across the kitchen. In good lighting, I can see details and if someone is nearby.
But there have been side effects. Complications arose.
I blame Doctor Krzystolik for none of them. I think that on a blog that has been clear with the failures and bad practices of other doctors, I should be clear that Doctor Krzystolik has done very well by me.

Through Rose Colored Lenses

This story is now live on Breath and Shadow.  This is a free read online.
http://www.abilitymaine.org/breath/win13f.html

Victrectomy

The procedure I will undergo this Thursday is called a Victrectomy. Basically the doctor will be draining the fluid in the center of the eye and replacing it. The replacement is usually with saline solution, but that may not necessarily be the case with me. My eye currently holds silicone oil rather than natural vitreous fluid. It’s been this way since the retina reattachment surgery in January 2012. This has necessitated up to five different eye drops daily, covering eye pressure and sterilization, dilation and a steroid. The steroid has given me the most problems from the beginning, including nervous/psychological tics, like I need more of those. Most disruptive is a natural side effect of increased stomach acid production. Water on an empty stomach, too much acidic food or not enough food like milk to act as a base and I have been prone to puking. The last year, obviously, has been less than pleasant. The regimen of eye drops affects my vision at least for a while, and I suspect may contribute to the overall and still increasing decline.
My hope is that the silicone oil has gotten "dirty" over the last year. My vision is now massively disabled by light sensitivity or light processing issues, and a constant fog, not at all unlike early morning fog. The fog has thickened over time, and I can see it as "TV white noise" even when my eyes are closed. The insertion of fresh fluid should provide a clear globe for me to look through.
That’s what I, and my eye doctor, are hoping anyway.
The decline has not been anything like the typical progression of diabetic retinapathy. I’ve been there and done that with the right eye ten years ago. The vision hasn’t gotten darker per se, but the eye cannot process light or readjust to changing light sources and that fog just got thicker and thicker until I could no longer see a foot in front of me.
I consider the
Victrectomy a "procedure" rather than a "surgery," but that is probably hair splitting semantics. There was far more risk to last year’s reattachment, which is why I had told very few people about the surgery. My doctor had to warn me about possible adverse effects, which could be dire, but I don’t think that’s likely.As the vision has gotten worse, I have been looking at–or rather groping for–this surgery as the last chance to improve and be able to stay functional on anything. I know my vision will never be what it was, but regaining any function will be a welcome change.
Wish me luck.