Theory of Relativity

Chronic Pain is an insidious thing, often misunderstood by those who don’t suffer with it on a daily basis. I have been living with Chronic Pain in one form or another for most of my life. Big Pharma has been able to mitigate most of my pain until the past few years when My disAbility has stepped up to the plate in a larger sense. I endure pain daily, be it muscle and joint pain, nerve pain or neuropathic pain. Some days they simultaneously duke it out inside my body for attention. I resolved long ago to not allow pain to rule my life. I discovered that I had an “elevated pain threshold” according to a neurologist that I was referred to. He was astounded by the level of pain that I could tolerate without screaming. I had to explain to him that I had been dealing with a baseline of pain most of my life.

Big Pharma and I are old friends/adversaries when I was younger I was given so many types of  pain meds to control my persistent migraines. It seemed, there was no end to which chemicals Big Pharma had to offer, provided I was able to afford relief. Back then, I was foolish and naive enough to believe what my doctors told me. I was often the “trial person” for a few of the newer meds that they were trying out. Some worked wonders, others, not so much.  The chemical compounds used to control my pain often involved the use of anti-seizure meds, which left me unable to think clearly. The pain meds simply made me pass out so that I had a brief respite from the incessant pain.

As I aged, and my disAbility became increasingly apparent, I began to choke on almost anything. It scared the hell out of me, and anyone around me. I later learned that this was one of the first manifestations of my disAbility.  Choking, and Pain. This was going to be a real* adventure I told myself.  For a while I stopped engaging with Big Pharma and tried to tough it out without ant pain meds. My pain level was tolerable for about a week, and then* the pain tsunami that struck my body had me begging to die. The thing about Chronic Pain is this* no matter how wonderful the support system or “team” we are, all of us are very alone in our pain.  It’s a fact. No one else can feel your pain, but you.

I have chosen to deal with My pain differently for the final chapter of my life. I have minimalized my use of Big Pharma, (alas, there are still* some chem meds* that I must take to function). I have begun to deal with my body  on a more wholistic level since moving to the West Coast of Canada. I have been using Cannabis with some amazing effects almost daily.  I am able for the most part to manage my pain level, and am able to function like a human being most days. I do however* occasionally require a more aggressive approach, and it’s only then* I engage with Big Pharma.  I have found that I can deal with the neuropathic pain much more effectively, the migraines have all but gone.  My muscle and joint pain occasionally remain, however in using the Cannabis in place of the Pharma, I can think more clearly though I still endure my baseline.

I have been advised by the agents of Big Pharma (physicians) who have not yet been “enlightened” as to the use of Cannabis for specific Types* of pain, that I will be returning to the fold (consumers of Big Pharma), the truth of the matter is, I have never really* left.  I have simply found something that works…for me. I am so glad that I took a leap of faith, and found an alternative method for pain management. Pain is not* relative, It’s deeply personal, and it’s real.  We all deal with ourmpain in different ways with the unspoken silent courage we are able to muster.

~Crip Out~

 

 

 

 

 

 

 

 

 

 

 

 

The Making of a disAbled Activist

I was not a born activist. Not even close. Women of my generation set about changing the world around the time of the Vietnam war. (I was born in the US) All hell began to  break loose during the time of racial segregation down in the states. My first taste of activism was when Dr. Martin Luther King was murdered. I watched the Black Panthers take up arms and become a force for radical change by any means necessary back then. I remember the words of Angela Davis, Medgar Evers and Malcom X.  Racism was and still is prevalent in the US and here in Canada. I watched the events of that era unfold as a young girl and was affected by them throughout my life. Indeed, I continue to be. Black Lives Matter has brought the struggle for equality back into focus, as racism persists in our society.

My parents were of the heads buried firmly in the sand ilk. In short, if we didn’t see it, it did not affect us. But it most certainly did affect me. I remember watching the riots  and marches on my grandmother’s TV. She was not one of the oblivious. She spent a good part of World War II saving Jewish children from Hitler’s death camps.  People were losing their lives attempting to right so much of which was and still is terribly wrong.

Oppression in its myriad forms has been an issue for as long as I can remember. When I was a very young girl, I was  acutely aware of my preference for the company of other girls. I didn’t mind boys, but my comfort definitely rested solidly with those of the female persuasion. During the late 1960’s Women’s Liberation, and NOW were all over the news, women were burning their bras and marching in the streets, and were encouraging us to be “liberated” from our oppressors. While this was a positive move, women still had a long road ahead toward equality. It can be argued that even in the present day, not much has changed for women.

In the late 60’s to early 70’s Gay Rights took up the charge as Police and other people openly attacked LGBTQ folks in the bars and streets. I was becoming a young adult who identified as Queer back then. The actions of those Gay men and Lesbians directly affected me, as I was among them. Gay Rights was on the nation’s radar.  I began to become acutely self aware. If I didn’t stand up for my own rights to move through the world as my authentic self, who then would?

The 70’s gave way to the 80’s and yet another crisis descended. AIDS had decimated my community. I had so many of my friends suffer and die while the government of the day dragged it’s feet on financing any meaningful research on how to control or eradicate the Aids virus. Aids Action Now lead so many of the existing Pride Day events and marches. Silence=Death was the banner we all marched under. Gay men and Lesbians together in concert were heralding the call to action.  After caring for so many of my friends who would later die of the disease. I, like so many of us during those times, was exhausted.

I was involved in a serious car accident and was rear-ended by a drunk driver on my way to work early one morning, abruptly ending my career. Prior to having the accident, I traveled to Canada and found myself in love with the person who is now my spouse. I had no other pressing plans, nor any positive outcome for myself, as any sense of self worth was utterly gone. With the help of a friend, I sold what I could of my possessions, and began to formulate an escape plan. Within a few weeks I was on my way out of the US headed toward a very uncertain future.  I believe the effects of the accident precipitated the onset of my neuromuscular disorder, some professionals disagree alas,they don’t live in my body.

Soon after my accident, I moved to Canada to be with my now spouse. I figured, life as I knew it, was over so why wallow in deep pain of any sort stuck in a cycle of poverty? I, as many of you know, disAbility does indeed equate to poverty in the US. My condition began to make itself known in earnest during my first few years in Canada and would increase in severity as I grew older.  I found that there was not much difference between being a disAbled person living in Canada as opposed to the US. Poverty was still a reality. The sole difference being, I would not have to spend my life alone.

Granted, ignorance knows no borders. I had encountered as many ignorant folks in the US (more blatantly so than in Canada) as where I made my new home, but they were for the most part of a different ilk.  In true Canadian fashion, not as verbose as their US counterparts, but alas, the undercurrent remained true to it’s nature. My universe began to shrink as my disAbility became more prevalent. The built environment was a daily challenge, but not as insurmountable as that of people’s attitudes toward folks like me (I was then using a cane or crutch, which would later evolve into using a wheelchair). I experienced small humiliations on a daily basis, from physical barriers to my access to buildings, facilities and venues (Stairs, curbs and the like). However, the most hurtful aspect of being a disAbled person was the  level of ignorance  I encountered from other people almost daily. I began to isolate myself from society. I had often surpassed my quota for tolerance for the Abled* world.

In Canada, we pride ourselves as living in a “polite society” where we (Canadians) fancy ourselves more civilized that our friends to the south. It is my observation that while may be slightly more “civilized” and informed as a nation, societal attitudes toward those of us who are living with a disability requires a great deal of revision. Indeed I was angry and resentful that the Abled* just didn’t understand what the “Problem” was. Prior to my becoming visibly disAbled, I must admit I was oblivious as well. I suddenly realised that I was now being oppressed by Abled* society, and I was not about to allow for that, not after all I had been through and fought for in my life.

I began to get active, and educated as to how Ableism* affected me directly on a daily basis. I was in effect fighting for my life. I marched, yelled, sat and died in, raised my fist and organized with my peers. I began to fight for equal access, equal rights to employment and access to the society in which I lived.  My rise to activism came to fruition slowly, insidiously, and manifested itself with a vengeance when I realized I was the one whose rights were being denied and I was being dismissed as just another cripple by society.

I have been watching as things have been changing in the US under the new political administration. Our rights as human beings have been challenged with the threat of cuts to Medicaid. When watching the actions of the ADAPT movement, I have thought that if I were still there, I would have been among them. I applaud their fortitude. I have my own fight to remain independent on a daily basis.  I have become politically active, and loudly visible.  I sit on boards and advise on disAbility policy and disAbility rights. I still march and will continue to do so as long as I am able. disAbility does not discern between race, colour, religion, gender, sexuality (or preference thereof)  or socio- economic status. We are literally everywhere, and everyone.  My existence IS my resistance, and so it is with so many of us. Be loud, be heard, be visible.  Things will take time to change, as change creates tumult, and upsetting the apple cart makes people think, and take a look at what change needs to happen. Challenge Ableism every day. If we don’t change the world, it will remain inaccessible for any* of us.

~Crip Out~

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Adaptation of our Species

Having had use of a power wheelchair for only a few years, I have found that it was often necessary to devise work arounds for my everyday needs. Allow me to expand on that statement. The majority of the time I have found that technology still* hasn’t caught up with some of us (or, most of us).

When I was first introduced to the world of powerchairs, I learned that some came equipped to the hilt with different functions (provided one had the financial means to acquire the latest gizmos) My own chair had a couple of interesting add ons, however, I found a few functions impossible to perform from a seated position. (I  fortunately do have the use of my arms and hands).  My primary difficulty lay in reaching for buttons, knobs, handles, fumbled items,and the like. Being of the seated and financially precarious persuasion, I was forever roaring in frustration at said knobs and buttons, until I began to carry my Stick-It (my unique invention for attacking knobs and buttons) It is a retractable stick with a rubberized hook, a magnet on one end (for small metal items) and a rubber tip (for things like elevator buttons etc). I thought I was pretty slick when I made this myself, after spending hours cruising the net searching for something that ostensibly could work at what seemed like at exorbitant cost (anything deemed assistive* or medical* implies great expense). Then, I began to interact with other seated folks…

I was soon to discover that among my people*  were a plethora of makers and inventors who found themselves likewise frustrated by an Abled* world.  I was having some difficulty in using the joystick on my chair for extended periods of time and when I did, my hand would become fatigued and spasm.  I tried several adjustments to my chair, controller, and several joystick configurations, balls, goalposts etc. until one evening I was surfing the net and found a call out for a beta test of a new idea for a joystick from an engineer in Baltimore MD.  I was at my wits end.  I was losing the function in my hand overall and was not quite ready to go the head array route.  Ergonomics! eureka! of course! I count myself as one of the disAbled stubborn Mules who could tough anything out… (until my hand and shoulder locked up for a few agonizing days) I contacted the person and agreed to test his product out. I now can’t imagine my life on wheels without it.  Thanks Roll Geek*, you saved my sanity, and my hand.

In my journey on wheels I have found so many brilliant folks on and offline who have created devices and modifications that have made my life a happier place.  Indeed, I have interacted with “assistive device dealers” and their ilk, but I must say, thus far it’s the other disAbled folk I encounter who are the finest source for adaptive ideas.  We are a community of makers, we understand our own challenges better than anyone else out there.  Not to discredit the professionals who do their work, (my joystick handle creator is an engineer) as some of them live with disAbilities and really get the picture.

One person I interact with has developed a retractable wheelchair canopy. I have seen safety lighting, durable wheelchair storage bags , positioning bolsters and seating, adaptive external electronics and lazer modifications, the list goes on. They say if you want something done right, you have to do it yourself. I have encountered such brilliance rolling along in my chair.  People indeed are our greatest resource. My advice, if you see something brilliant, that someone else is using, ask them about it. You may be speaking to the inventor of the best adaptive device you ever imagined.

~Crip Out~