This page is all about answering people’s questions, starting from years back until present. You would be amazed at some of these encounters, but the world is thankfully big enough to accommodate everyone in all their glorious diversity. When I became disabled, not many people asked me things right away. Sometimes a total stranger would walk up to me with a strange comment or unusually nosy question.
I am one of those people you might see using a wheelchair, not the other way around, allowing the wheelchair to become a blanket excuse for others to treat me different or specially. I am as capable as any other woman I know and in some areas I excel over my peers. Everyone has things they are good at, but for me it has always been writing that I dreamt of excelling at to make connections with people who were open minded enough to take up a book I had written.
Over the years I have undergone several evolutions in my thinking on the subject as I take very seriously the responsibility I have to myself to face my own disability with bravery and courage. I strive to set an example to others about living life to the fullest and enjoy every moment of it. Sometimes though I am confronted by questions and even though I understand the curiosity of people, sometimes I think if they thought about it, they could answer their own questions.
It would be hard to list each question, so I will just go through them one at a time. Everyone knows I lost my left leg almost to the hip, right? Well, now that that is the set foundation, allow me to share some questions I have been asked over the years. "How can you drive?" My answer : "Just like you do, I was lucky not to need special adaptive equipment, since I still have the full use of the right leg and foot, I drive like everyone else. Only one exception, I cannot drive a standard transmission and that I can live with since I never could get out of 1st gear when I tried with two feet!"
"Do you still feel the other leg?" My answer: "Yes, and it feels a lot like how it feels when a foot or a hand falls asleep from lack of circulation. Sometimes it hurts and causes shocking nerve pains that are usually gone as quickly as they appear. Some of the sensations I have felt over the years include a hot ‘poker’ in my heel, feeling charlie horse pains from the ‘phantom limb’ into my stump, there have been times I can feel something as subtle as wind blowing over the ‘skin’ of the ‘phantom’ and a few times while in water, I have actually felt water, between the toes and over the ‘skin.’ For the most part, now after almost twentyyears, I feel a pleasant ‘awareness’ of the missing leg that is rather comforting although I am still unable to move this ‘presence as I can move my real leg.
Even the toes are paralyzed, with the knee usually slightly bent, unless I stand and walk, when it seems to straighten out slowly on its own. On this subject, I find it interesting to not for you, that during my meeting with Rick Allen, fellow amputee, we talked about it and he also feels it still as well, sensations similar to the above description. My recently passed grandmother was also an amputee, below her left knee, and eventually toes from her right foot. She was diabetic as was her sister, my great aunt Mary, who was also a below the knee amputee, also the left leg lost. Both of their surgeries were ‘planned’ and not like Rick & I where blunt trauma is involved.
I recall asking both of them, upon seeing them for the first time, I was about 14 or so at the time, "Can you still feel it?" Another interesting side note, my great grandfather had lost two digits of one of his index fingers and I was about three or four around this time, and I asked him too. It is remarkable to add that later upon asking my grandmother if she still felt it, she said she didn’t. I have heard that this is attributed to the differences in how we each became amputees.
It is interesting to me how the mind adapts to its own changing environment, as seen with amputees and their ‘phantom sufferings.’ Since I have experienced this firsthand, I feel that I am in a unique situation as a writer and as a person. From this standpoint I have 18 years of body memory intact and now added to it, almost 20 living with levels of pain daily that would drain anyone, believe me. I broke my back, pelvis, right leg in seven places that has seen three surgeries to set and fix it properly. Biofeedback in a clinical situation can help some people to train their minds to negate the pain and cope with it as it happens.
I have meditated and experimented throughout my life with working to influence things in my body that we weren’t supposed to have control over, starting with the heart. I am able to ‘will’ it to slow down and I can put myself in a state that allowed me to swim the length of a pool and back underwater without surfacing for air. That goes back to childhood. But after becoming disabled in 87’ I had not tried to do anything regarding pain, because my frame of reference at the time did not include the horrific agonies I would suffer after that accident.
Right there in a nutshell, "Frame of Reference" is the reason the mind is able to adapt, guided by our own conscious will. I believe that is why some people look upon amputees with a feeling of facing their own mortality. If a person hasn’t considered what possibilities exist in a world where people die in accidents every day. People need to be aware to truly be alive and if seeing me rolling along with my beautiful child, inspires someone to rethink actions in their personal life, I am sympathetic to them, but I encourage them to face the consequences of bad judgments.
Accepting the inevitability of death frees you to live life to the fullest. When disability touches your life, things change in ways you never dreamed of. People treat you differently and you begin to see yourself and the world around you in different lights. Even if the way it touches your life is through a friend or family member, you begin asking more questions and seeking answers about the world and answers about how people in it treat one another. To change the world all one needs to do is change themselves.
"Been in any good wheelchair races lately?" Not exactly how I like to be greeted by a person who had made fun of me in school before my accident and then seeing me while shopping in a grocery store or something, but this has happened more then once from different acquaintances, I would rather have not talked to. That is one thing I would never ask a disabled person, unless you know that they specifically participate in that type of sport. Otherwise it’s just plain insulting.
I have been told by people who had come to see me right after the accident, during my stay in Bayfront Medical Center, that : "I could never live like that, I feel so sorry for you Pam." Certainly this was their minds way of trying to empathize within their ‘frame of reference’ what living in mine would be like. It isn’t as bad as some might think. I was fully capable of carrying my son’s baby bag, my purse, hold him on my lap and get into our apartment without having to need a ramp, just out of sheer desire for independence and the upper body strength, developed over years in the wheelchair.
I am still capable of taking care of myself, and my family. I will be thirty-six at then end of this year and am very proud of the way I have grabbed the bull of life by the horns. For now, in 2004, I have given up on walking again. My son is too strong and might not realize his strength playing with me so I have just put it in the closet and am focusing on him, our diet and adoption of the low carb way of living. I haven't given up totally and know I will walk again before I am forty. It is one of my goals and I will reach it. It's really important to have firm realistic goals, no matter what you're aiming for as a result, you have to be realistic with yourself and whatever challenges you perservere through to make it happen.
Every disabled or otherwise challenged person is an individual-not a diagnosis or disease. I can tell you from experience one thing we all have in common: we all want to be looked at and treated just like any other person. I have no qualms holding doors open for all kinds of other people just out of courtesy and 90% of the time the way people treat me is as I want; perhaps with one important distinction, they see me like some kind of 'special person' in the way that I so confidently move around, from hopping to my driver's door after putting my lightweight wheelchair into the trunk of my car, and when I hop to the car and get it out. I can see that people are affected in a positive manner even if we only make eye contact, sometimes people see you and you don't realize it but they see you around a few times and finally stop you to express compliments to you.
That is the reason this site exists and the reason I write things like this. Because it's important to me to enjoy going out shopping or running errands getting things done. I like to whip around in my chair if I am in a big store and I am very good with this chair. People like to joke about me getting speeding tickets in my chair and it's like I described above, you meet people and see them as you're out doing things. Sometimes you realize the effect you have on others and other times you can't see because you can't read the expression you see someone gaze at you with, you can just feel that there is something deeply emotional or moving introspection is occurring. When you see someone in passing you can get a feel for their personality, this is true with people who get around in chairs or use prosthetic limbs. If you feel comfortable and as long as you are sincere when you approach a person I'm sure you will feel enriched afterwards.
The main thing I'd like to convey is that we're all the same and we should respect one another. No matter what you think you see in another person, you can't always trust what's on the surface and if it matters to you, then you dig deeper and get in the other person's shoes. I think it's human nature to want to interact with people and to feel accepted. That goes for kids and adults. I think that sometimes people tend to forget that kids are people too and should be treated with love and understanding.
But from experience I know firsthand that kids can be so cruel to other kids. In this case I feel it's even more so that kids suffering being bullied in school or otherwise harrassed by a malicious peer, are affected deeply if when they cry out to adults for help that they have the door slammed on their feet and personal credibility comes into question instead of taking their word wrong doing was done (or even seeing it but ignoring it-if it happened to me it happened to others) thus shrugging the duty as someone in a position of power to help protect all students equally. As I said above, to change the world you truly only need to change yourself and how you choose to live out your life.
Thank you for reading over my editorial on disability. I invite you to email any question you want answered here to me and it will be added here. Thank you for visiting my Disability Questions page!
