Asymmetry

My journey as an amputee

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Welcome aboard!

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Free-Wheeling

 For someone who doesn’t drive, getting from one place to another can be a matter of timing and logistics. Sometimes I need to work back from when I need to be somewhere, and other times I have to figure out when I’ll get to my destination if I leave now.

     A few years ago I discovered the ease and independence of riding public transportation. While the special paratransit service (Access) is good in our county, it is limited, and not always convenient. I have said (more than a few times), “Access does not exist to make independent travel convenient for people with disabilities; it exists to make it possible.” It also costs considerably more than the regularly scheduled buses, especially since my employer provides us with the “Perk Pass,” a free annual bus pass, and only reimburses half the cost of Access coupons.

     Public transportation in many metropolitan areas in the US is used by people at every socioeconomic level, from unemployed to upper management. In cities like Boston, New York, and San Francisco, it is not unusual to see no-collar, blue-collar, and white-collar workers in the same mass transit vehicle. In Southern California, however, the widespread highway system, the sheer size of the metropolis, and the relative novelty of a well-designed public transit system have contributed to an automobile-heavy commute. Since the culture is more conducive to using private vehicles, the buses are still seen as only for those who can’t afford a vehicle or who have, for whatever reason, lost their license to drive.

     About fifteen years ago, my roommate rode the bus to work every day, as she couldn’t afford her own car. At an office party that year, a coworker of mine mentioned that his wife was looking for a short-term carpool because her car needed repairs. I suggested the bus. The wife shuddered and said, “Oh, I would never ride the bus! Do you know what kind of people ride the bus?” My roommate quietly said, “Yeah; people like me.”

     In recent years, though, the ridership demographics have changed. As I ride the bus to work or to the mall, I notice more and more riders who appear to be using the bus as an alternative to driving, rather than merely because they have to. The increase of employer-sponsored commuter assistance, the price of gasoline, the cost for parking, and the annoyance and frustration of driving on the highways have all contributed to this increase. After all, why sit fuming in a traffic jam, getting yourself all worked up possibly to the point of road rage, when you could be texting, scrolling through social media, watching cat videos, catching up on work, or just snoozing while someone else drives?

     Of course, there are still riders who appear to live on the bus. Many of them seem to be polite and reasonable folks, although there are some who are belligerent or in some way impaired. The bus drivers have a smooth relationship with many of the all-day riders who appear to be using the bus as a way to stay warm and dry in the winter and cool in the summer. A day pass, or possibly a monthly pass (frequently given to them by a social service agent or a charity group), allows them to continually ride to the end of a line, get off the bus, get on the next return bus, and repeat this all day. Sometimes they change routes just for a bit of different scenery or to chat with a particular driver.

     The “Transit” app on my smart phone allows me to check arrival/departure times and plan a route to almost anywhere I want to go. I can tell the app that I want to start at a particular time or to arrive by a specific time, and it will show me several options for local bus routes that will take me to my destination. There is even an extension to the app on my smart watch.

     Sometimes the route shown in the app includes a short segment on one bus route and a longer segment on another route. If that short segment is a mile or less, I will just trek in my power chair for that distance. There is no reason for a bus driver to have to lower the ramp, tie down my chair, and then raise the ramp as I board and then do the whole process in reverse at the transfer point. I can do that distance in my power chair in just about the same amount of time.

     I have found that for the most part, the bus drivers are courteous, cheerful, and helpful. Of course, that is the attitude I expect from everyone I meet, and the attitude I see most of the time. Even groups of young men gathered on the sidewalk part like the Red Sea to allow me to pass through, and as I accept that courtesy with a cheerful “Thank you,” they usually respond in the same tone. In fact, I have found that a courteous attitude on my part seems to bring out the best in most people I encounter.

     I have had some not-so-good rides on the bus, but most of those have been caused by equipment failure. Keeping a positive attitude while the driver struggles to deploy the ramp so I can get off the bus may not be easy, but what good would fussing and fretting do? I have been stuck on a bus long enough for the next bus on the schedule to arrive and take all the other passengers from the bus I’m on, while the poor driver is trying to get that ramp out and down so I can roll off. Twice my chair glitched, and I couldn’t engage the gears to go. In those instances, the driver unlatched the drive from the wheels with a handy set of levers and pushed me off the bus so I could work through the issue without holding up the other passengers. I have never been stranded with a non-operational power chair, thank goodness. Once in a while I have encountered a driver with an attitude, who perhaps resented having to put forth an effort to secure my chair, or maybe is just having a bad day. Those instances, though, are remarkable mainly for their rarity. A few times, I have had to remind the driver that I had activated the “lift requested” signal for a particular stop, but that also is rare.

     For those occasions when I’m going to be returning home after the last bus, or leaving home before the first bus of the day, or if it’s raining, I use Uber. When I use that service, of course, I have to be in my manual chair, as the local Uber service does not have many (if any) wheelchair-accessible vans on their roster. Although more costly than Access, Uber is about half the price, or less, of a taxi, and the drivers are nicer and their cars cleaner and more comfortable. I gladly use the manual chair for those trips because it means I’m not tied to the bus schedule. Uber is the last piece of the solution to independent travel for me.

     I still use Access, but the trips are now limited to journeys to distant places like my wheelchair guy in Laguna Hills, or to trips that would require several route changes on the bus. The Access drivers continue to be considerate and helpful, and I appreciate the ability to get where I need to go without undue complications. However, the requirement to make reservations at least the day before my trip, and the fact that I have to allow for a 30-minute pick-up window both going and returning means some mental gymnastics to ensure a fairly hassle-free trip.

     So where do I go on the bus? Where do I not go? Work, of course, is my main destination, paired with the trip back home. On my days off I have been known to go to one of several shopping centers or malls in my area of Orange County. I sometimes choose my destination based on what stores are available at a particular location, and sometimes based on how far I have to trek to get from the bus stop to the stores. Disneyland is one of my favorite destinations, and as a Cast Member, although working offsite, I take advantage of the fact that I can enter the Park almost any day of the year. If I’m meeting friends there, I take the bus or Uber; if my friends are picking me up, of course I go in the manual chair. That helps build up my “step” count on my fitness tracker, and helps keep me in shape for when I go for the next 5K race.

D. Elizabeth Robinson

June 3, 2017

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Why I Don't Walk

     When i started this blog, the theme indicated that the journey I’m on was intended to lead to my walking with a prosthesis. That is no longer the case. I have no current intention of walking. That may change, of course; intentions are constantly changing, and I could go back to that goal. For the time being, however, my goals have shifted.

     For some time now, I have had to answer the question, “Why don’t you use a prosthesis?” The question is asked in many different tones, with many different unspoken sub-texts, although I seldom hear it asked as simple curiosity.

     My answer to that question has changed over the years. At first it was, “I can’t afford it, and I don’t have insurance yet.” Then, when I got the first prosthesis, and it didn’t fit properly, that was my answer. Then when I decided to try again, I just didn’t “get” the process. I had been in my wheelchairs (manual and power) for so long that I was accustomed to them, and I felt as though my stumbling efforts to walk were taking me backwards. Patience has never been among my stronger character traits, especially patience with myself.

     I have given the answer that my visual impairment impedes my walking, and to a degree that is true. Because my right eye is totally blind, I have no depth perception. A dark bar across the sidewalk might be a shadow, a hose, or just a different color of concrete. If I make the wrong decision, I could either trip over the hose I thought was a shadow, or misstep because I thought a shadow was a hose. Of course, I knew within myself that that was still just an excuse, and I could overcome that fear if I really put my mind to it.

     Yes, fear played a part in my hesitation. I hate falling. No. I dread falling. I have always hated falling, even when I had two legs. I would not run, or even walk rapidly, downhill. I had fallen numerous times, with little effect each time, but I still hated and feared it. And now, with only one leg, the fear was even greater. It was not so much the fall itself I feared, but the process of getting back up again. It’s embarrassing to “trip over nothing” and tumble to the ground, but it is even more humiliating to have to ask others to help me up afterwards. It is especially mortifying to have to call for paramedics to come and lift me back to my chair; I would hate to think what it would be like with a prosthesis to deal with. I’m sure I would be even more terrified to try to set off again after such an incident.

     I learned, however, that when I repeated my reasons, they were dismissed as mere excuses, and my well-meaning friends would try to counter them with arguments such as, “You just have to give it time,”  or, “Well, if you worked at it harder, you wouldn’t fall.” I knew all those answers; I said them to myself many times, and I scolded myself for being lazy or unreasonably fearful. And yet, I did not want to put that heavy piece of machinery on my leg and try not to drag it along behind me. Some soul-searching was in order.

     After a lot of self-examination and questioning of my motives and reasoning, I reached an unanswerable conclusion:

 I DON’T WALK BECAUSE I DON’T WANT TO.

      I get around just fine in my wheelchairs. For short distances and within my home, my manual chair is just fine. In fact, I have proven that I can go 5 kilometers in that chair. I wouldn’t do that every day, but I do go out for long “strolls” just to keep my strength and endurance up (and to keep in shape for the next 5K I enter). When I visited Walt Disney World with my brother and his family, he joked that he had a hard time keeping up with me. I have a wonderful chair, and the company that sold it to me takes very good care of it to keep it in tune for me to get the best performance from it.

     When I want to go out and about farther afield, I get into my power chair. My “wheelchair guys” also take care of me with this chair. I get pretty good “mileage” with the chair, going as far as 5 miles before my battery charge indicator starts dropping. I hang a large canvas bag on the back of the seat and go shopping on my days off, trekking to the closest mall or taking the bus to other shopping areas.

     I do occasionally find myself wishing that being in the wheelchair didn’t make me “short.” I generally “fly under the radar,” so to speak, as I am below eye level for most adults. Most of the time it’s not a big deal, but when I’m in a place like Disneyland, where most of the people are tourists, I have to make allowances for the fact that they are rubbernecking, far more interested in the scenery or where they want to be than in who or what is between them and their objective.

     Most of my friends have only known me since I’ve become an amputee, and they are so accustomed to seeing me on wheels that they might not recognize me if I were to appear on two legs. They are so accepting of the wheelchair that they sometimes forget that I can’t go up or down steps. I readily forgive the lapse, as it illustrates one of my favorite sayings:

 Don’t love me because of my disability;

Don’t love me in spite of my disability;

Love me with my disability.

D. Elizabeth Robinson

May 28, 2017

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To Disclose or Not

I am a member of an internet group of amputees who share experiences and knowledge about being amputees. A question that arises from time to time is, “When I go for a job interview, do I tell the interviewer that I’m an amputee?” Here’s my take on the subject, and a great part of my answer comes from discussions with employers and recruiters who have studied the laws regarding want can and cannot be discussed in job interviews.

The only question an interviewer can ask regarding your physical condition – and this is written in law, not somebody’s opinion – is, “Are you able – with or without accommodation – to perform the duties of the position as outlined in the job description?” This is not an essay question, nor is it multiple choice. It is a question that requires one of two answers: Yes, or No. Do not elaborate, do not describe the accommodation you need, and do not waffle. Either you can do the job or you cannot. If you can’t do the job, even with accommodations, why are you even interviewing for it? So, really, the only acceptable answer is a confident, solid Yes! And bear in mind that if they ask you this question, they must also ask it of every applicant for the position.

“But what about that nasty little zinger in the job description that says ‘Other duties as assigned’?” you may ask. Ah, yes, that little phrase that employers sometimes seem to think means they can ask you to do all kinds of non-related duties on a regular basis. Well, that’s just not true. If there is a function of the job that must be performed on a regular basis, it must be listed in the job description. Those “other duties” can only refer to things that you may be asked to do on an occasional basis, say once a month or so, or even only once a year. Don’t worry about those things; accommodation means many things. For instance if your employer every so often asks you to climb a ladder to get something from a top shelf, the “accommodation” could be that you ask someone else to climb that ladder for you. Now, if climbing ladders is a regular part of the job and you can’t climb ladders – again, why would you be applying for that kind of job?

Now, a word or ten about accommodations. Accommodations can be as simple as raising your work surface to accommodate a wheelchair, or they may include things like special computer software to enable those with visual disabilities to use the computer. If the employer feels the accommodation is too costly for them, they can usually get assistance from the state department of rehabilitation (or whatever it’s called in your state). The employer gets a tax credit for hiring a person in a “protected” category, so it should be worth their while to spend a little to make it possible for you to do the job. (I wouldn’t remind them of that, though; at least not during the initial interview. After all, you haven’t even told them you have a disability yet, have you?)

The non-disclosure attitude works fine for “invisible” disabilities. If you have a prosthetic leg, you can always wear long pants, and nobody would be the wiser. It’s a little harder not to “disclose” when you roll into the interview in a wheelchair or stroll in with your service dog or white cane. The trick, then, is to get the interviewer past the red flags that he or she sees waving all over the place. You must, without mentioning the disability, convince them that the red flags are all purely imaginary. After all, you don’t see any red flags. Ignore the tinge of uncertainty on their face or in their voice, and counter it with your own self-confidence and positivity. The same qualities that get the able-bodied applicants through the interview process should get you through as well. You just have to keep reminding yourself that you have those qualities, and as you silently remind yourself, you broadcast that confidence, and the interviewer will pick up on it. If the interviewer knows his or her stuff, your message will get through.

So – somewhere along the line you may need to inform the employer that you need certain accommodations in order to perform the job to the best of your ability. When do you do that, if not in the interview process? The answer is, you do it after you’ve been offered and accepted the job. In other words, after the contract has been made. This is for several reasons, and it is for your protection and the protection of the employer.

That’s right – the employer. Did I mention that this whole disclosure/accommodation situation was a legal issue? Yeah. The employer doesn’t want extraneous information getting in the way of choosing the perfect candidate for the position. Even though you may think your disability is anything but extraneous, it is something the employer cannot – by law – consider when making that decision. So, let’s save that employer the agony of trying to ignore something they’re legally not supposed to know.

This is also really a protection to you. If you’ve told the employer that you have a disability, and then the employer does not offer you the position, how are you going to know that the decision was based solely on your qualifications? I’m not a litigious person, so I would probably never sue a company if they decline to hire me, although I might consider it if I sensed blatant discrimination. Lawsuits can be long, tiresome affairs, and I’d rather avoid them. Keeping unnecessary information to myself is one way of avoiding them.

So how do you disclose? If at all possible, ask for a face-to-face meeting. Then, when the time comes (remember, after you have that job firmly in your pocket), you can say something like, “Before I start my duties, I must request certain accommodations in order for me to do the best I can in the position.” This might lead to an opportunity to educate the employer on things like what a person with a disability can do with a little help from modern technology, as well as the opportunity for the employer to partner with your state’s vocational rehabilitation department. The main goal of that department is to get people with disabilities back to being productive (not to say tax-paying) citizens, so they are willing to append a little to help employers in providing accommodations.

Before you do anything – in fact, even before you apply for a job, do your research! Find out how the rehabilitation department works in your state. Find out what accommodations you may need. In some states, the rehabilitation department may require you to register with them before you go job-hunting. This eases the whole “disclosure” process, as all you would need to do is refer the employer and the department to each other and let them hash out the details of your accommodation. By the way, don’t depend on the rehabilitation department to find you a job; that’s not what they’re there for. They may let you know who’s hiring for positions in your field, or they may merely evaluate your accommodation needs, make sure your resume is in good order, prepare you for interviews, and wish you good luck. Whatever the rehabilitation department does, remember that it’s you who’s applying for the job, so it’s you who’d better be ready for it!

All that being said, I should do a little disclosure of my own here.  I did work with California’s State Department of Rehabilitation, and they helped me with my resume and with classes on taking interviews. They did not send me on interviews, and they didn’t really refer me to employers. I found my job by going on the internet to a company’s website and looking for their career page. The fact that I am happily employed, enjoying all the accommidations I need, and treated with dignity and respect, is largely the result of my employer (a multi-national corporation with a sterling reputation) is very proactive in hiring and meeting the needs of  a very diverse population of employees. I am lucky, and I know it. I can wish the same for you!

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Lessons Learned

In early 2014 I learned some valuable lessons, which I would like to share with you.

 1. Multi-tasking can be dangerous. This is especially true when the two tasks are going up a wheelchair ramp backwards (which I do often, as it’s easier than going up forwards) and daydreaming. One may find oneself on the ground with no memory of having flipped off the top of the ramp.

2. Broken bones hurt. They hurt really bad. If you’ve never broken a bone, take my advice: don’t do it.

3. Even if you have a notoriously hard head (as I do), hitting your head – hard – on a concrete driveway has at least three consequences:

    A. You will probably knock yourself out for a few seconds (or was it minutes? I’m not sure of the time involved; after all, I was unconscious).

    B. A portion of time preceding the crack on the head will disappear from your memory. In my case, I’m not at all upset about not remembering exactly how my arm got broken.

   C. No matter how well you think you are hearing and answering questions, you may not be as clear-headed as you think you are. When the paramedics asked me what medications I took for my diabetes, I could clearly remember the drug I’m allergic to, the drugs I take for my blood pressure and cholesterol, and my heart medication, but the name of the diabetes medication kept evading my tongue. Only when the gurney bumped into the edge of the ambulance as it was being loaded was I able to say, “Metformin!”

4. Paramedics are good-looking. I don’t know if this is just because only good-looking people are hired for the profession, if the caring and  nurturing spirits of these fine people shines through their faces, or if it’s just because they are being one’s saviors; whatever the reason, they look very good.

5 Some questions they ask in the emergency room are not meant to be answered literally. The nurse asked me for my legal first name. Well, technically it’s Dorothy, as I’ve never legally changed my name, so that’s what I told her. Big mistake. For the next three weeks I was called Dorothy, and no amount of explaining could convince anyone to call me by the name I’ve used for fifty years. Finally, I simply said “no” when anyone asked for Dorothy. By the time I returned home, I think most of the nursing facility staff had finally gotten the message.

6. A hospital is not a place to expect any sleep or rest. If the nurses are not waking you up to take your blood pressure, give you medication, or ask questions, your roommate is getting up several times a night to go to the bathroom – and the toilet flushes loudly.

7. Don’t let the staff at a skilled nursing facility push you around. Oh, they can push your wheelchair, but don’t let them bully you into accepting what they want to hand out. Stand up for yourself and be your own advocate, especially if you don’t have family members there to run interference. I had to get my primary doctor to call the facility to insist I be given the medications he has prescribed for me, rather than the medications the staff doctor (whom I never spoke with) decided I should have, based on who knows what criteria. I also had to remind nurses that I can think for myself, and it is much easier to tell me to drink more water than it is to hook up IV fluids. I wish I had been as strong about the ambulance they ordered to take me to the doctor’s office to have the staples removed from my arm. I now owe the ambulance company $125, and I did not need an ambulance; I could have gone just as easily and more comfortably in a wheelchair van.

8. Roommates and neighbors in a skilled nursing facility are a mixed bag. Some (like me) are there for a short time to undergo physical therapy so we can return to our normal lives. Some are there to recover from surgery and return to assisted living or long-term care facilities. And some are undergoing assessment and observation to decide where they belong: at home alone, at home with a caregiver, or in a facility with professional caregivers. This can make for some interesting situations.

   A. When I first arrived at the facility, a man across the hall made his presence known throughout the day and late into the evening. When he wasn’t singing at the top of his voice, he was shouting at other patients to shut up. He was not supposed to walk, but that first night he appeared at the doorway to his room in only his pajama bottoms, demanding to be helped into the rest of his pj’s and into bed. A few nights later, at about midnight, there was a commotion in the hall, and I heard his voice calling out. The nursing assistant told me the next morning that someone had fallen. After a number of hours of not hearing him, I realized he had been the one who had fallen.

   B. The other woman in my room when I first arrived was preparing to return to her daughter’s home. She had frequent visitors, especially her daughters and their husbands. The women liked to chat about friends and family; the men weren’t so keen on that, but they noticed that I had the football playoff game on my TV. Every so often, one of them would come around the dividing curtain and ask me for the score.

   C. When that roommate left, I had almost a week of being alone in the room. Oh, joy! I could have the shades open to let in daylight! She had had eye problems and didn’t like strong light. I was very happy to be alone for those few days.

  D. The last three or four days, I shared the room with a woman who was on her way from her daughter’s home to a full care facility. She either didn’t know how to use the call button, or she simply thought hollering for the nurse was more effective. I left the room whenever I could during the day, but each night I was awakened two or three times by her calling for the nurse.

  E. A man was moved into the room across the hall a few days after the loud man had left. Dan, I learned, worked for the amusement park that is a friendly competitor of the park that employs me. We met frequently in physical therapy, and we had fun ribbing each other about our respective employers. I also met Dan’s lovely wife, Bonnie, and we had several good conversations.

9. It’s good to have friends who are willing to visit those in facilities. Our neighbor, ladies from my church, folks from my housemate’s church, and of course my housemate and – once – her brother, all visited and helped keep my spirits up. A friend brought a lovely orchid, which is still blooming on my windowsill.

10. Pets – especially cats – notice when you’re not where they think you’re supposed to be. Lily, my lovely gray tuxedo kitty, appreciated the visits my housemate paid to our room, but three weeks is a long time for “Mom” to be away, especially with no warning. When I returned home, she ignored me for about an hour, and then came out to welcome me home. She had never spent time on my lap before; the lap was just a surface to cross from one spot to another. Now, she gets on my lap and positively smothers me with kitty kisses. She’s such a love!

11. The other Dorothy – he one from Kansas – had it right: THERE’S NO PLACE LIKE HOME!

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Anniversary

December 1 marks the anniversary of the day I didn’t die. I nearly did, but through the grace of God and the skill of the surgeons and other medical staff that worked to save me, I survived. I awoke in ICU, minus a leg and with vision drastically affected, but I was alive.

I may have lost a leg and a large part of my vision, but what I gained has more than made up for the loss. I’ve gained new emotional strength; I’ve gained a new appreciation for the love and support of my friends, who for the most part not only stayed around but also accepted this “new me” as a physical change which had only a positive effect on the person they had known. I’ve gained new friends as well, who accept me as I am. All my friends, new and ongoing, cheer my every progress and uphold and support me when I have a setback.

I’ve known people who approach each anniversary of a traumatic or life-changing experience with anxiety, depression, and a renewal of the anger and other emotions that overwhelmed them on the original occasion. They relive each minute of the incident. Of course, I don’t actually remember much of that day, but what I do remember I’d just as soon not repeat year after year.

So, how does one deliberately forget such a trauma? I don’t think I really gave the process much thought. I was so busy learning how to live this new life that the first anniversary almost snuck past me unnoticed. Perhaps that was the key for me: being so involved in living in the present and preparing for the future that the past stayed in the past.

I have other anniversaries that I do celebrate. Of course, my birthday is important to me, and I find fun and exciting ways to spend the day. A friend once referred to it as my “earth arrival day” to distinguish it from another anniversary – that of my adoption when I was four years old. I don’t actually celebrate publicly that day, but I mark it with gratitude for the two people who made a new home for me when my birth parents were unable to provide one.

I pay attention to the birthdays of my friends, including the birthdays of those friends and family members who have passed on. One of those people was my very best friend for 37 years, and I still think of her often. I’m friends with her twin sister, so I remember to wish the surviving twin a happy day. Wedding anniversaries of my friends and damily members also merit my attention, and I duly celebrate with them.

But the anniversary of my amputation? I acknowledge it (most years), but I don’t dwell on it. Some amputees refer to their “ampuversary.” There’s something about that word that sets my teeth on edge. It sounds to me as though the amputation is being given more attention than it deserves. I never celebrate the amputation itself; I celebrate what I’ve learned and gained from having gone through the amputation. And isn’t that the important thing anyway?

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Common Courtesy

I’ve always had a problem with asking for help. I think I must have been one of those three-year-olds who stamps her feet and says, “No! Me do!” when adults try to help. Some people call me proud, some call me stubborn, and some just say, “All you have to do is ask. Is that so hard?” Well, yes, it is. Even now, I struggle with something longer than I really need to before I give up and ask.

When I do finally ask for assistance, I’ve found people are usually willing to give it cheerfully. By the time I’ve reached the point of acknowledging that I need help, I’m ready to accept it cheerfully and gratefully.

I’ve also noticed that people are usually willing to be courteous and gracious to someone who clearly needs a little extra consideration. I can’t count the number of times people have darted forward to open a door for me. That is one courtesy I’m especially grateful for, as most doors in public places are very heavy and awkward for someone in a wheelchair or walking with a walker or a cane. I’m especially pleased to see how many young people extend the courtesy; I’ve even seen parents and older siblings instruct the younger kids in this little gesture.

In an age when attention seems to be focused on rude or thoughtless behavior of public figures, it’s gratifying to see that people are generally behaving well. A young man on a skateboard, with his pants at half-mast and tattoos or piercings in all sorts of uncomfortable-looking places, will still jump off the skateboard and smile sweetly as he holds the door for me. His grandmother would be proud.

Many times, as I’m going along a sidewalk in my power chair, drivers who have stopped across the sidewalk while leaving a parking lot to wait for a break in the traffic will pull back to give me clear passage. I always say, “Thank you,” enunciating clearly so that even if they don’t hear me, they can see what I’m saying. The other day, a driver actually said, “You’re welcome.”

And therein lies my part of the “bargain” of courtesy. Every time someone does something courteous, I thank them. It doesn’t matter how small the gesture, there is an element of thoughtfulness in it, an indication that for that short moment that person was thinking of someone else. That kind of behavior needs to be encouraged, and a simple expression of thanks makes everyone feel good.

Courtesy and helpfulness are two-way streets. Without the oil of gratitude freely expressed, assistance becomes less cheerful and more grudging. If a person needs help but is ungrateful for the help received, other people are going to be less and less willing to offer.

Yes, I have at times felt like gratitude is hard to choke out. It can seem that I spend my whole day saying “thank you” to helpful person after helpful person. After a while I begin to wonder if I can do anything without needing help. I get embarrassed, and I begin to be a bit tetchy. That’s when that three-year-old comes out of hiding. But I remember that each time I thank someone, it’s usually a different person. I swallow the pride and resentment and think instead of how many people have taken time from themselves to offer help to little ol’ me.

Helpfulness can be misdirected, however. It can be startling to be heading somewhere in my manual wheelchair, only to have some well-meaning person grab the handles and start pushing me – in the wrong direction. At that point I have to stop and gently explain to the person that while I appreciate assistance, I’d rather ask for it first. Sometimes the help can be less than helpful. Even then, though, I make sure the person understands that I do appreciate the thought. I certainly don’t want to thwart that helpful attitude.

There are times and places where I don’t expect everyone to be courteous and helpful, and I even tolerate a certain degree of what might be considered rudeness. In certain amusement parks, everyone is looking around at the attractions and decorations, and they’re all headed somewhere other than where they currently are. Their attention is not on what’s close to them; it’s on where they’re going, and they tend to go the shortest route, even if it means walking across right in front of someone going in a different direction. Such inattentiveness is, in my mind, excusable, and I deal with it good-naturedly. Looking back, I have to wonder how many people I dashed in front of when I was younger and had all my parts. I do expect – and receive – excellent courtesy and consideration from employees, however.

Now, let me mention a touchy subject: handicapped parking spots. Each state issues placards to people with disabilities so that these people can park in special spots designated for the purpose. There are never enough of those spots, it seems. While I’ve heard of people giving a piece of their mind to someone who appears able-bodied and parks in a handicapped spot, I don’t say anything. I know people who have heart conditions, asthma, or other “invisible” disabilities. Even some amputees, wearing long pants, appear not to need to park close to the entrance. When I see someone who looks hale and hearty use those spots, I hope that they are truly eligible. The same goes for the use of electric scooters in stores. I know there are those who abuse the accommodation, but I’m not a police officer, so I leave the consequences to karma, and I hear she’s not always nice.

Recently, a major amusement park announced that due to the abuse and mis-use of special “front-of-the-line” passes for people with disabilities, that program would be drastically changed to a more manageable but less “universal” program. It’s sad to see such accommodations abused by those who think they are “above” the common courtesy of leaving them for those who need them. That this apparent culture of “me first and isn’t it too bad to be you” raises its head at a place where everyone is supposed to be happy and enjoying themselves us sad. How can one be happy when one is pushing everyone else out of the way in order to be first in line for something that’s not going away?

In general, though, I’m optimistic about the future of courtesy in our world. Somehow, whether they learn it from their parents, their teachers, their friends, or other mentors, young people today are learning common courtesy, and that can only be a good thing for all of us.

[thelegandi-blog]

Oops!

Over the years since my amputation I have had numerous embarrassing and/or frustrating experiences. I have tipped over in my wheelchair, run into things in my power chair, and had adventures trying to find accessible features in old buildings.

When I went to a conference at a hotel in Los Angeles with some friends, I was following them up a gently curving sidewalk from the parking lot to the hotel entrance in my manual chair. I didn’t notice that the sidewalk was also gently rising, so that there was about a 5” curb on my left. One of my friends turned around in time to say, “Beth, you’re left front wheel is going – “ just as that wheel did indeed drop off the curb and the left rear wheel (the big one) slid down the side of the curb, sending me falling sideways in slow motion. I had time to pull my arm away from the wheel and keep my head from hitting the ground, so there was no injury, but there I was – lying on my side in the parking lot.

I could tell that one of my companions, a young woman of about 20, was starting to panic, so I projected calmness and explained each step of getting up. First I took my purse off, then undid the seat belt, and requested someone to move the chair out from under me while I pushed myself up momentarily. Then I sat up and scooted to where my back was against the front of the chair. The young woman asked, “Shall I put the brakes on?” Um – yes.

At my direction, my two companions, one on each side, helped me stand and then sit in the wheelchair. I picked up my purse and refastened my seatbelt. Then we all looked at each other and burst out laughing. My friend said, “You should have seen your face. You looked like, ‘Oh, well, here I go.’”

Several years later I had a similar experience, only this time I was in my power chair, the fall was into a busy street, and I knew none of the people who rushed over to be of assistance. I again remained calm and let them know I was for the most part unhurt. I had scraped my elbow and had a bruise where I had landed on the armrest, but nothing was broken, not even on the chair. Everyone was calm and supportive, including the man who stopped his motorcycle across the way in front of me so cars turning the corner wouldn’t run into me. It wasn’t until later that I realized that his cycle could have been hit; that made his consideration even more valuable to me. This time paramedics were called, but the only thing they needed to do was get me back into the chair. I did take note that they were all good-looking, so it was obvious I had no head injuries.

While going through the theme park where I work, I once missed the wheelchair access at a crossing and ended up with the front wheels of my power chair on the street, the back wheels on the curb, and the middle drive wheels spinning uselessly in mid-air. I sat there, my face as red as the shirt of my costume, until a guest came along and asked if I needed help. I said, “Just give me a shove,” which she did, and with a thump I landed on all six wheels. I thanked her for her help and sped off to find a place to regain my composure.

At another time, when I was visiting the theme park as a guest with a friend, we were going through the wheelchair entrance to an attraction, which was actually the exit from the ride and paralleled the entrance line for quite a distance in semi-darkness. My vision in darkness is not very good, so I was trying to follow my friend, who was walking ahead of me and wearing a light-colored jacket. At one point she turned a corner and I lost sight of her. When I called to her to say I couldn’t see anything, she came back a ways and said, “Turn left!” Instead of turning left, I went straight ahead and with a loud clang hit a trash can. The guests in the other line were understandably startled, and I sped off again to hide in the darkness of the next portion of the tunnel.

That lack of night vision has caused other problems for me. At Christmas time, I thought I could dash over to the nearby shopping center and do some Christmas shopping after work and still get home before dark. This being the time of the winter solstice, sunset was before 5:00, and full dark followed shortly thereafter. After waiting in the checkout line for nearly an hour, I came out of the store at a little after five, and realized I would have to go home in the dark. As I was in the power chair, I couldn’t call anyone to come pick me up (the chair being too big to go in any private car), and I couldn’t call for a wheelchair van because all the wheelchair transport companies and taxi companies had a 24-hour advance reservation policy. So, with my heart in my mouth, I began the trek homeward.

The first portion wasn’t too bad. Between streetlights and parking lot lights, I could make out the obstacles I needed to avoid. I went at a much slower speed than I normally use on my longer drives, and I tended to be a little spooked at shadows, but I made it about halfway home before hitting a long block with a high wall on one side of me and a wide street on the other, with the streetlights all on the other side of the street. They did not make the sidewalk visible, and I slowed to a crawl, somewhat disoriented by the lights of the passing cars. Suddenly there were no cars going by, and I was in almost total darkness. The next car to come along turned on the bright headlights, which startled me into jerking the steering joystick slightly to the right. WHAM! I was face-first against a telephone pole. My first reaction was to make sure I hadn’t broken my glasses; then I could spare the time to realize that I was in pain. I have a hard skull, though, and aside from a lump and surface ache i had no adverse side effects.

I fell off my bed on night. I was sitting on the edge of the bed, and my phone, which was charging on a nearby table, made the sound that meant an email had arrived. I reached for the phone. I was wearing a sock, and as I reached forward, my foot slipped on the hardwood floor. The next thing I knew, I was on the floor. This was at about 1:30 in the morning, so I didn’t want to call my roommate to come help me. Besides, I wasn’t sure that she could give me the kind of help I needed. I wasn’t even sure what kind of help that would be. For the next hour and a half I tried various ways of getting off the floor just enough to get my rear end onto the wheelchair seat. The floor is called hardwood for a reason; the wood is hard. By the time I figured out the right combination of cushioning under my knee and the end of my residual limb, and the right leverage I needed, I had bruises on both sites. But at last I was sitting in the wheelchair, panting, and extremely glad to be there.

I sometimes try things before I’m really ready to do them. I decided to go to work one day walking, using a four-wheeled walker, which had a seat attached to it. On my way back from a break that afternoon, I stopped and decided to sit on the seat and propel myself back to my desk with my feet. I’m not sure exactly what happened, but I was suddenly on the floor with my prosthesis sticking straight out in front of me. I resisted the temptation to giggle while I considered my predicament. Of course, as usual, a number of people saw the tumble and came to assist. Looking at them, I realized that they were all small women, and I knew getting me back up would take a bit of muscle. I picked out the two I thought would be the strongest and asked them to help me up. They wouldn’t let me walk any more that day; I had to sit on that walker until quitting time.

All these incidents could have been scary. A few of them were at the very moment they happened, but I have always managed to maintain a sense of calmness and to keep a clear head. I have been fortunate in not having been injured, for which I am properly grateful. I have been able to find the humor in each situation, usually even as I’m in the midst of it. The best thing, according to my roommate, is that I give her plenty of material for telling family and friends funny stories about me. I’m always glad to be the subject of funny stories. Really, I am.

[thelegandi-blog]

Pain, Pain, Go Away

You may occasionally hear an amputee mention “phantom pain.” This by no means indicates that the pain is imaginary. It is very real; it just happens to be in the phantom limb – that invisible limb that the amputee still feels even years after amputation.

The first time I felt this phenomenon I just about jumped to the ceiling. This was no little tingling or pinprick; it was full-fledged level 10 pain with accompanying jangling electric shock sensation. It felt as though someone was jabbing me in the heel with a superheated electrified ice pick. It went away after about ten seconds, and I relaxed. Two minutes later it came back, lasted several seconds, and went away. This went on, with periods of relief lasting anywhere from 30 seconds to 30 minutes, for four or five hours. The onset of my phantom limb pain still takes me by surprise, and those around me will hear me screech. After each pain, I’m on edge for a couple of hours, wondering if that was the last one this time around.

The location of the pain varies with each episode, but during any one episode the location is the same throughout. Sometimes I get the jab in the heel, sometimes an electric shark is chewing on the outside of the foot, sometimes some evil genius has a pair of pliers on the 4th toe and is squeezing hard. One time when I described the pain in that way, someone said, “You mean, you can tell exactly where on the phantom foot the pain is taking place?” My answer was, “Oh, yes!”

I’m one of the lucky ones, however. I’ve heard of amputees who experience constant jangling pain all over the phantom limb, and others who have a consistent ache or tingling. I experience phantom limb pain rarely – about every two or three months – and each incident lasts from two to twelve hours. I’m so tired of them by the time they go away that I certainly have empathy for those with constant pain.

So, why do we have phantom sensation and pain? There are a number of theories, some of which I don’t even begin to understand. The one that makes the most sense to me is this:

When the surgeon removes a portion of the limb, the nerves are still there. They still think they exist down to the end they had before the amputation, so they continue sending responses to the brain as if they were in their original position. Thus we have phantom limb sensation. This sensation is “phantom” because it is not based on actual stimulation, but on memory of stimulation. If you find the location of the main nerve that once led to a certain spot in the phantom nerve, you can feel a sensation in the phantom limb as if you were touching that specific spot. For instance, if I lightly touch the outside of my biological thigh, I can feel it on the outside of my phantom foot. It’s weird, and it’s just a little bit creepy. But if I’m feeling phantom pains in that spot on my foot, I can massage that spot on my thigh, and it helps the pain go away.

After reading all that, you may not find it at all surprising that for many years a large percentage of amputees denied feeling phantom sensation or phantom limb pain. Any rational person would think they were insane, or at least delusional. In the 1970s, a survey of amputees found that 30% reported feeling phantom limb sensation. A similar survey a few years ago found nearly 100 % reporting the sensation. What changed? Either the attitude of the general population has grown more tolerant and understanding of the unique conditions relating to amputation, or amputees in general are less concerned that people might think they’re crazy. Whatever the reason, the fact that the sensation and pain are now more generally recognized means that more attention is being given to them and thus more effort is being put into helping amputees deal with them.

So, how does one deal with them? As I said before, I try to massage the spot on my thigh that corresponds with the spot on my phantom limb that’s in pain. as for the phantom limb, I just let it be there; it doesn’t bother me; it even goes away when I’m walking with a prosthesis.

But what about those with constant, debilitating pain? There are a lot of pain medications on the market today: analgesics, narcotics, opioids, and even cannabis. I occasionally use an extra-strength acetaminophen if the pain is interfering with sleep or normal activities, but I find that for the most part just “dealing with it” works for me. I don’t use narcotic or opioid substances, nor do I judge those who do. Their pain level affects them in unique ways, and they get relief however they can. Having experienced the intensity of the pain I have intermittently, I can only imagine having that pain without letup.

Some amputees have discovered that placing a mirror between the full limb and the amputated limb so that it reflects the full limb helps them to imagine the phantom limb more strongly to the point of being able to move the knee, the ankle, or even the toes to mirror similar movement in the full limb. Doing this appears to help them deal with the pain by “moving” the limb and regaining a sense of control over it.

The most interesting phenomenon I experience, however, is the fact that I don’t remember the pain I felt before the amputation. I remember being in pain, and I remember sometimes screaming with the intensity of it, but the actual pain memory is gone. I am very grateful that I don’t remember what it felt like. Other amputees have said that their phantom pain is a repeat of the pain they had before the amputation, and they sometimes wonder why they even bothered.

As if it weren’t hard enough dealing with issues like balance, weakness, and emotional issues, now we have to handle pain that “isn’t really there”? Yeah, the life of an amputee is not an easy one, but it is challenging and interesting, and meeting the challenges is rewarding in its own way.

[thelegandi-blog]

Amputation Terminology

If you find yourself in the company of several amputees (or even two) you might be puzzled by some of the words and acronyms being tossed around in conversation. Pylon, socket, BKA, AK – what do they all mean? So, here’s a short course.

Let’s start with the acronyms that indicate where the amputation is. I’m an RAKA; that means I am a Right Above Knee Amputee. My friend is an LBKA: Left Below Knee Amputee. Sometimes these are shortened to AK and BK. For those with arm amputations, the acronyms would substitute E for K, so an AE amputation is Above Elbow. There are other terms like Hemi-Pelvectomy or Hip Disarticulation, which mean the entire leg is gone, including a portion of the hip and pelvis. I know people with all these amputations. There’s nothing like a support group for helping one understand the vast array of situations that have a common thread.

And what do amputees call the part of the limb that is still on their body? In times past the word stump was almost universal. Then it became politically incorrect, and we were told to use the term residual limb. Sometimes we simply say “limb” to avoid the mouthful of “residual.” So calling an amputee “Stumpy” is apparently not to be done anymore, although “Residual Limby” somehow doesn’t sound right either. (That was a joke, by the way. I don’t call anyone by either label; I use their name.)

Then an amputee may talk about the type of prosthesis he or she is using. There are so many brands and types of prostheses that I don’t even know what half of them are. I had to ask my prosthetist what my leg is called, because I was so excited to get it that I didn’t even care what it was called. It seems that I have a C-Leg with a Runway foot and a double socket. When another amputee asks if I experience the same socket issues as they do, I don’t always understand their issue because it doesn’t apply to me.

Oh, yes – the socket. That’s the part of the leg that attaches it to my body. Most prostheses are held on with suction of some sort. Some are “direct suction” and some use a silicon liner between the skin and the socket. Mine uses the silicon liner.

Moving on down the leg, we come to the knee. There are different kinds of knees, and a good prosthetist will evaluate an amputee’s potential activity level to determine the appropriate knee. The knees range from the basic “hinge” which locks only when it’s straignt and weight is put on it, to hydraulic, to various types of microprocessor knees which provide more stability and more versatility. My C-Leg is the best for me because I need more stability than versatility. The knee works so well that if I’m wearing pants, people tell me they can’t tell that I even have a prosthesis.

And down to the foot. Again, there is a range of flexibility from the “static” foot that simply sits at the end of the leg to feet that flex (including the ankle) just like a biological foot. Mine has slight flexibility in the ankle and a light “spring” in the foot that gives me a gait that is remarkably similar to walking with a “real” foot. Again, the prosthetist evaluates what the amputee needs before making the choice. Getting the latest and greatest just because it’s out there is not the way to make an appropriate choice.

Between the knee and the foot is the pylon, which does the job of the fibula and tibia, so it has to be a strong but light material. An above-knee prosthesis weighs approximately 15 pounds. That’s just about what the limb it’s replacing weighs, so I can’t blame the leg when I see the number on the scale.

Other terms you hear may be don and doff. These simply mean putting the prosthesis on and off. Gait means the same thing as it does with horses: the way in which one walks. Gait training Is an essential part of acquiring a prosthesis.

Phantom pain and phantom limb sensation are related but not the same. Almost every amputee still feels a shadowy echo of the limb that has been amputated. When that phantom limb hurts, that’s phantom pain. Believe me, that pain is not imaginary; it’s very real, but treating it is very different from treating pain in other parts of the body. You’ll be reading more about that in future posts.

As you can see, I have a lot more to learn than just walking. I’m learning a whole new language. In the process, I’m meeting some wonderful new friends who share this experience with me. And making new friends keeps the world expanding.

[thelegandi-blog]

Frustration Station

Some days nothing seems to go right. This applies to almost every job or project, including learning to walk with a prosthesis, I’ve had my share of days like that; I think I’ve had more than my fair share. How we deal with frustration says a lot about us, and I’m afraid I sometimes don’t deal well with it.

In fact, I cry – anything from silent tears to whimpers to sobs, depending on how many other people are around. I admit to being ashamed of my reaction to frustration, and I am working on a more even-tempered reaction. It’s a daunting task, as I am erasing the habits of a lifetime.

First I have to recognize why I’m frustrated. What has gone wrong? Have I made a mistake or misjudged something? Is a piece of technology not working as it should? Or does the fault lie in another person’s words or actions? The approach to the situation is different in each case.

Albert Einstein is reported as having said, “Insanity is doing the same thing over and over and expecting different results.” Sometimes we do that because we just can’t believe that we’re getting the results we see. And when we do get the same results, frustration builds. We repeat the action, sure that we’re doing it just a little bit differently, but still we get the same results. We may get different results, but they are still not the results we were expecting or hoping for. Whether the unwelcome results are due to operator error, system error, or mechanical failure, the resulting frustration can make us fumble-fingered, ensuring even worse results as we doggedly and angrily persevere.

My physical disabilities have created a lot of frustration. In addition to the process of learning to walk, there has been the whole journey of acquiring a prosthesis, the trials of getting Social Security Disability, finding part-time work I like and can do well, and learning to live with my disabilities, all while dealing with bureaucratic inefficiencies and obstructiveness.

When I was first applying for Medi-Cal, California’s version of Medicaid, I learned that a person with a disability automatically qualified for coverage. So I took in a statement from a retinal specialist confirming that I am legally blind. The eligibility cerk threw the statement back at me saying, ”That’s not good enough; you have to be totally blind to qualify.” I was speechless. Does “legally blind” not mean that according to the law I deserve the same treatment as someone who is totally blind? That little bit of ignorance kept me without insurance until Social Security said in effect, “Yes, you are blind,” and Medii-Cal grudgingly granted me coverage for the two years until Medicare kicked in. Was I frustrated? Absolutely – to the point of screaming.

My housemate will occasionally mention that she heard me whimpering as I try to don my leg. When I know she’s in the house I try to keep my frustration quiet, but apparently I’m not quite quiet enough to escape her excellent hearing.

I sometimes feel frustrated when I see or hear of other amputees who acquire their first prosthesis and walk out of the prosthetist’s office with no difficulty. I have to remember that these people have not been sitting in a wheelchair for eight years, and many of them are young and have led very active lives. I know I have to build up strength and endurance, and then I can stride out with confidence.

Dealing with my visual impairment is frustrating mostly because I had been a voracious reader, sometimes finishing an entire book in two or three days. Reading the first five Harry Potter books was the work of two weeks of evening entertainment. This frustration continued for several years – years of gazing longingly at the bookshelf full of now inaccessible stories. I tried books on tape, but they came with their own frustration, as I fell asleep almost every time I tried to listen to them. Even when I was given a CCTV, a machine that magnified objects on a large screen, casually reading a book for long periods was impossible. Moving the platform under the camera made me dizzy. Only when I got a Kindle e-reader that allowed me to enlarge the type big enough to read easily did I regain the joy of reading. I was frustrated at not being able to use a computer until I was introduced to accessible software like MAGic and ZoomText. Now I have a tablet with an attachable keyboard and the ability to increase the size of the type on the screen, and that’s how I’m typing this now.

I often think of the famous Serenity Prayer – “Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Little by little I’m reducing the level of frustration in my life and learning to deal better with the frustration I do still experience. I’m not “there” yet, but I expect that at some time I will reach a measure of equilibrium and serenity.

[thelegandi-blog]

The Blame Game

I freely acknowledge that my current physical condition is largely the result of choices I made in my life. I can sit here and say, “If only I had done this,” or “Why did I do that instead?” But “shoulda, coulda, woulda” never changed anything. The past is over and done with, and all we can do is live in the present and do what we can to ensure a better future from here on out.

It’s easy to be angry with ourselves, with our genetic background, with someone else whose actions (or lack thereof) may have caused our problems, or with the unfairness of life in general. It may be very hard to forgive. Strangely, it is sometimes harder to forgive ourselves than to forgive others or to accept the fickleness of fortune.

Anger is a natural part of the grieving process, and amputees who claim not to have felt anger are fooling themselves. They certainly are not fooling anyone else. Anger can be a good thing; it can spur us to greater efforts to return to independence and productivity. Held on to for too long, however, anger can become bitterness. Friends and family can put up with bitterness for only so long before they start turning away, leaving the bitter, angry person lonely and even more bitter and angry. And then that person blames those friends and family members for the loneliness, and the vicious circle continues spiraling out of control,

So – how do we forgive? It’s important to know that forgiveness is not exoneration. It means that we don’t hold a grudge; we don’t carry in our hearts the sins of ourselves or others. We did make unwise choices, that glitch in our DNA does exist, or that drunk driver did indeed hit us. Forgiveness does not wipe out the consequences of the action; it puts them into perspective. When we learn that this person or that circumstance did not make life totally unlivable, especially when we learn that there are ways to regain some of what we thought we’d lost, then we can begin to forgive.

If we let the anger fester, refuse to forgive whoever or whatever we blame for our troubles, what do we gain? Absolutely nothing; we don’t feel any better about anything. In fact we continue to feel worse and worse.

If we set aside the blame and forgive, what do we gain? We’re still in the same physical condition, but we aren’t consumed by it. We have risen above the swamp of blame, anger, and bitterness and@ fluttered our wings a bit. As our hearts begin to heal, we begin a mental healing process that can have only positive results. When we reach a point where we no longer think of our condition as a result of something having been done to us, as we learn to accept things as they are, we can then take on the responsibility of improving ourselves and our lives. Then we can say we have forgiven. Then we are thriving.

[thelegandi-blog]

I Only Laugh When It Hurts

I have found that the most important thing I can have in dealing with my disabilities is a sense of humor. If I couldn't laugh at myself or make light of situations, I don't know how I'd get through the days and years. The old saying, "Laughter is the best medicine," has been true for me.

If I couldn't laugh when I tipped over in my wheelchair (after I had righted myself  - with help), I might have developed a fear of getting around on my own. The fact that I've run into pillars, posts, and at least one trash can might be humiliating except for the fact that when I tell others about those mishaps I am able to do so in a way that they laugh with me instead of looking at me with pity. They may still see me as pitiful, but I don't see well enough to discern that, and I use my sense of humor to rise above it.

Humor in my situation, however, can have its pitfalls. There are certain things that I can say about myself or that I can tolerate when my very best friend says them, but I don't much like it when someone I don't know very well says them.

Take the word "gimp." I can call myself a gimp, and there are certain other women who can call me gimp with impunity. That's mostly because these women are also dealing with mobility challenges. If a stranger or mere acquaingance were to call me that, though, especially if that person is able-bodied, I wouldn't like it much. Yes, it's a double standard, but think about it, and I'm sure you'll understand what I mean.

I have also found that those most likely to laugh when I make a joke about myself are again those who have similar disabilities. Another person with visual impairment is more likely to see the humor in something I say about my vision than someone with perfect sight. And someone with two good biological legs doesn't have the reference point necessary to "get" jokes about being an amputee.

So when I say, "I'm literally blind in one eye and can't see out of the other," and there's a deafening silence, I can conclude one of two things. Either those hearing the remark think it's not something to joke about, or they didn't grow up with that old saying.

Don't get me wrong: I take serious situations seriously, and I do what I must to solve them. But if I make a joke about it later, please don't think I'm making fun of a disability, I'm HAVING fun WITH a disability. Big difference.

[thelegandi-blog]

The Long and Rocky Road

The process of getting and learning to walk with a prosthetic leg has been for me a long and sometimes rocky journey. Some of the problems I have faced were my own doing, some were imposed upon me by others, and some just happened.

The first time I went to the office of my current prosthetist, he gave me a silicon liner and told me to wear it every day. Somehow the instruction to apply ointment to my skin before putting on the liner didn’t get through to me, and I dutifully wore the liner home from the office. When I took it off that evening, I had very large blisters all over my residual limb. The next day everyone at the prosthetist’s office was horrified to see the blisters, and I was scolded and instructed not to wear the liner until the blisters had healed. Being a diabetic, I take a while to heal from any injury, so I lost two weeks while waiting for those blisters to go away.

Every time I had an injury to the residual limb, I was unable to don the prosthesis while things cleared up. I waited out a neuroma, a MRSA outbreak, and more blisters. Then I had a doozy of a winter cold that kept me home in bed for several days. Each time I returned from an injury or illness I had to go back over ground already travelled to bring myself back up to where I had been.

My prosthetist told me when I started that learning to live with a prosthesis is a love/hate relationship. When you first put on that marvel of engineering and take those first heady steps you experience an almost religious ecstasy. Then when the hard work begins and you stumble and lose your balance, and you don’t make the progress you want to make as quickly as you want to make it, you just want to throw that piece of junk in the corner and sit in your wheelchair and pout. Then you have a breakthrough, and you are miraculously on top of the world again.

You alternately love and despise the prosthetist as well. First, this marvelous technician fits you with a leg that feels almost like it is a part of your body. Then he (or she) prods you to do something you don’t think you’re ready to do – or that you’re flat-out afraid of doing. Then, when you do it (because you don’t want to disappoint this person who is helping you walk again), he cheers your tiny step of progress as enthusiastically as if you’d just climbed Mt. Everest. And once again you are best friends.

Of course, making progress is not all the result of the prosthetist’s urging and encouragement. The amputee has to want to do it, and to put forth the effort involved. Walking with a prosthesis does not come naturally; one must learn to use other muscles to make up for the muscles that are no longer there. Just standing still, I have realized that I am constantly flexing the muscles in my left foot to keep myself upright, something that people with two biological feet do unconsciously.

I’m on my way – today the vinyl-tiled hallway, tomorrow the carpet, and then the sidewalk outside. Step by unsteady step, I’m emerging from wheelchair-bound to freedom!

[thelegandi-blog]

Through Faith

I thought I had been a “good girl.” I had lived my life without many vices. I certainly didn’t smoke, drink, or use recreational drugs. I didn’t even swear, and I was celibate. I was generous to my friends, and I was scrupulously honest.Why, then, was I suddenly struck with the physical problems that landed me in the hospital? I had been raised by a mother who taught me that when I had a physical problem it was a result of thoughts or deeds that were not in keeping with being a “perfect child of God.” I lay there in the hospital bed thinking I must have done something horrible; I must have failed God in some vile way for Him to have inflicted this upon me.

While I was sobbing with remorse for my failure and my unknown acts or thoughts, I heard something. There was no one in the room with me, but I clearly heard a voice saying, “I still love you.”

Wow!

While I didn’t bounce up and laugh immediately, that voice sustained me through many dark times that followed. I still thought I had done something wrong, though, until a friend told me to stop thinking that.

“You are not being punished,” she said. “These things just happened to you. You know the old saying ‘Life isn’t fair’? Well, you’re experiencing that.” This was another positive thought to hold on to.

As I became stronger, I strengthened my faith as well. At one point, after feeling like I was banging my head against a brick wall trying to make things happen by myself, I cried out, “I can’t do this alone! I need help!” At once, a feeling of peace came over me, and I almost heard that voice again, but this time it was saying, “Well, it’s about time.” Shortly after that, it was as if the heavens opened and things started to happen without my having to make them happen.

Someone once said, “You know, God doesn’t give you anything you can’t handle.” I don’t believe that, for two reasons. First, God didn’t give me my afflictions; they just happened to me. Second, God doesn’t expect me to “handle” them; He is right beside me, helping me every step of the way.

Sometimes His help comes in the form of people or agencies that provide services or aid. Sometimes it comes as a friend helping or giving suggestions as to courses of action I can take. And sometimes He sends thoughts that lead me to a solution of a problem.

I’ve had setbacks, and I’ve had moments when I feel alone. But at those times I just think back to that lonely night in the hospital that turned out to be not so lonely, and in my mind and heart I hear once again those four words.

“I still love you.”

[thelegandi-blog]

One Step At A Time

Because I didn’t have insurance coverage, I was sent home straight from the hospital – no physical therapy, no rehab facility, nothing. My roommate at the time, Cynthia, was apprehensive about what she would need to do to help me, and she spoke with the discharge counselor about her fears. “I don’t do bedpans,” she said. After being assured that bedpans weren’t needed, she sighed with relief and resignation, and said she’d do whatever was necessary to help me regain full independence.

So I began my recovery with the help of a good friend. Cynthia and I had been friends for 32 years and roommates for several years prior to my amputation. She had assisted both her parents through their final illnesses, so she understood the needs of an invalid. However, her experience had been mostly with those who were becoming more and more dependent rather than someone striving for independence. And, believe me; I was definitely striving for independence. I couldn’t imagine depending on someone else for assistance with everyday tasks and activities.

I don’t know if it was my general attitude of going forward, or if I was just lucky in my choice of friends, but most folks I came in contact with honored my spirit of independence and allowed me to try things on my own. I do remember a couple of times, when I was struggling with a simple task – like buttoning a shirt – that Cynthia had to put her hands behind her back to keep them from moving forward of their own accord to help me.

As I became more physically fit and stable, Cynthia would suggest trying new activities. For instance, we started with me sliding from my wheelchair into the back seat of the car with a sliding board. Then I graduated to using a walker for support while I transferred. One day we got out to the car and realized that we had forgotten the walker, and there wasn’t time to go back to the apartment and get it. Cynthia said, “Well, here’s your chance to see if you can get into the car without the walker.” By this time I was getting into the front seat because the front door opened wider so I could get closer with the walker. By getting the wheelchair as close as possible and grabbing the door handle, I made it in with no problem. We both cheered at that accomplishment!

Some things I wanted to try were not so successful. I once tried to go up a short but rather steep ramp by myself. This ramp had a 2-inch drop at the bottom, so I popped a “wheelie” to get the front wheels over that gap. What I hadn’t figured into my calculation was the fact that I would still be leaning backwards as I started up the ramp and couldn’t stop the backwards motion of the chair. I landed on my back on the asphalt parking lot surface, hitting my head fairly hard. I think I blacked out for a few seconds, because when I was again aware of my surroundings, Cynthia had pulled the chair out from under me and set it up beside me. A young couple, walking by, offered to call for an ambulance. All I could think of was that if I went to the hospital, they might want to shave my hair at the point where I hit my head, and I didn’t want that to happen because I had just spent $90 on a perm. Besides, I was wearing a hoodie, and I was sure there was no real damage. The couple helped me back into the wheelchair, and we went on into the apartment. I had a walnut-sized bump on my head for a few days, but no other damage, other than to my ego.

Sometimes it seemed to me that I was just not making much progress. One night I was feeling particularly depressed, and I was sitting up in bed crying. Cynthia came out of her room and asked what the problem was. I replied, “The only thing I can do by myself is go to the bathroom.” She was quiet for a moment and then said, “Well, I’d say that was a good thing.” I had to laugh at that.

There were times, though, when Cynthia seemed to feel disappointed when I made enough progress to be able to do something on my own without her assistance. It was almost as if she felt her purpose in life was to help me, and I was growing out of needing her help. A few times, when I proudly announced that I had done something on my own, she would complain that pretty soon she wouldn’t be needed at all.

Not true, of course. I would always need someone to drive me places. I was becoming fairly independent using the paratransit service supported by federal funding, but for quick trips to the store, or even to and from church, it was nice and convenient to have my own chauffeur. And even though it was possible for me to throw a sandwich or salad together, I did appreciate the meals she cooked for us. I was especially grateful for that because cooking was something Cynthia really did not like. Our meals were simple, but she was careful to make them nutritious.

Sadly, just about the time that I was ready to live on my own, Cynthia was diagnosed with kidney cancer that hat metastasized to the lungs, and within three weeks of the diagnosis she passed away. Even as I grieved her loss, however, I thanked God for bringing this willing helper into my life.

 lived on my own for two years, with few problems. I did have to call on some friends a few times to help me out of jams I had gotten myself into, but generally I was totally independent. I am once again sharing a home with a friend, but that is mostly for companionship and financial reasons. My new housemate, Jo-Anne, does encourage me and help me out when necessary, but she follows the philosophy that if she does something for me I will never learn to do it on my own. That suits me just fine. 

[thelegandi-blog]

Been There, Done That

I’ve been through The Valley of the Shadow of Death. How I got there and how I got through it are stories for a different time. This is the story of my journey afterwards.

Sudden devastating experiences change a person. I remember saying to a friend a few months after my trauma that I felt like a totally different person. She said, “Well, you seem like a different person to me, too – a better person.” I was relieved to hear that. There were times when I wondered if I was indeed a better person. My life certainly didn’t seem better.

After years of being relatively active and an avid reader, I was suddenly an amputee and legally blind. Not only did I have the physical limitations to deal with, I had to negotiate tangled masses of red tape just to get help finding out how to get help. No one told me anything about what I might encounter in the way of physical or emotional changes, or about where I should go to get financial help for medical care and equipment. I wore out a battery on my cordless phone trying to get Social Security Disability and Medicare – and I was one of the lucky few who was approved on my first application.

If I were able to go back seven years to counsel my younger self, I would have lots of information about who to contact and where to go for this or that kind of help. I would point the new amputee in the direction of a good amputee support group, and the newly visually impaired person towards the Braille Institute. These organizations, and similar organizations in other locations, exist to help those who are struggling with new obstacles, new feelings, and lots of questions. I would also refer me to the State Department of Rehabilitation early in the process. This Department provides referrals, training, and equipment to help those with disabilities return to the workforce or to live independently in their own homes. Life would have been so much easier, and I would have gotten through my stages of grief so much more quickly.

Yes – grief. Anyone who loses someone or something that is a constant and is important to their life goes through a grieving process. A loved one, one of the senses, a limb, the ability to move freely, even a large sum of money – these are all important to most of us, and losing one or more of these can send us into a whirlwind of emotions. Denial, anger, bargaining, depression, acceptance are the accepted “stages of grief,” and I experienced all of them. The emotions were not in no particular order, nor did I pass through each of them only once. Anger, particularly, played a big role in my life for quite some time.

After a while, when I had my income and insurance settled and found some kind of purpose in my life, I reached acceptance. I thought I was done grieving and could get on with my life. I learned, though, that there is a place beyond acceptance: thriving. That’s where one takes what one has experienced and learned and uses the knowledge gained to help others negotiate their own grief-path.

I didn’t settle long in accepting that I was a person with a disability who couldn’t do much in the way of productive work. I began looking for employment, just about the time that the economy tanked and able-bodied people with perfect vision were having a tough time finding work. As frustrating as the search was at times, I persevered and finally found the perfect outlets for my creativity and my ability to interact well with people. There is also the added advantage of being able to share my journey with my friends and coworkers. As they see my progress, as well as my setbacks, they learn what it is to be a person with a disability.

One of the key elements in my growth was recognizing the activity that brings me great joy – singing – was something I could continue doing. At our community chorus rehearsals other altos sat next to me and made sure I could hear the notes and words as they sang them. By performance time, I had mostly memorized the music. As my vision improved and I acquired adaptive equipment, I was eventually able to read the music by myself again, but I still find myself memorizing the music more quickly than I ever did before.

I also continued writing poetry, which I’ve been doing since my first very bad attempt at age nine. I spent most of 2007 writing 366 short verses, creating a “calendar” for 2008 with a verse for each day of the year. This was an uplifting bit of work, as well as occupying me for hours at a time, composing, dictating the verses into a portable tape recorder, and typing them into my computer.

I did get prosthesis after about a year and a half, but the socket didn’t fit me properly. After more than a year of trying to learn to walk with the thing, I gave up. A prosthetist has said, “If the socket doesn’t fit, the amputee will sit.” I sat … and sat … and sat, for five years. After a good friend suggested I might look into the possibility again, I learned about microprocessor knees, and started working with a prosthetist who works with these knees. I’m currently on a journey of learning to walk with this marvel of electronics and mechanics. Stay tuned for the reports on that journey.