Bureaucracy – An Update

Some time ago, I attempted to explain the form filling nightmare that is the British benefits system. To be fair, I expected to fill out forms, just not as many as I did, nor did I expect to have to prove that I was not a Big Fat Liar. Three months on, however, I am in exactly the same situation I was in before I spent a considerable amount of my time writing my name and national insurance number over and over again.

If one thought that as policy makers, governments worked at a snails pace, it appears they work at a similar speed in all other areas under their remit. I am generalising here, incorrectly of course, for our Government is great, I am only talking about the Department of Work and Pensions (DWP), and then I am not even really talking about the DWP, for they have passed my claim on to a contracted out company for assessment. My claim has been under their assessment for 92 days and they are yet to have looked at it. Let this be a lesson to you all, contracting out services works!

I have applied for something called Personal Independence Payment, which replaced the Disability Living Allowance. I am well aware that I do not need the full payment this benefit can offer. I do however, find that there are certain things that cost more money, now I’m a a disabled. Travelling costs more money and it is more difficult than it was before. I get more buses because I cannot walk as far, I even venture on the tube now, even more occasionally than that, is the luxury of a taxi because I get too tired to move and my back feels like it is going to snap; these may sound like small things to you, but they cause me no end of headaches. In my flat, I cannot properly clean and I cannot carry my groceries. I attempted the Hoover yesterday, and let me tell you, today, I very much ache, despite my double dosing last night. There are small adaptations to be sure, but adaptions that cost me money that I do not have, or ruin my few good hours a day with unnecessary pain.

It is not just your money I am after. I really and truly want the government to recognise me as ‘disabled’. It would well and truly make my disabled life much easier, if I were qualify for the national concessions. It would make my bus journey safer and it would give me more energy when I am being driven. It would mean that I would not always have to say why I am disabled.

I have been waiting for the outcome of my PIP claim, before I pursue local options, as it means that I would have to jump through less hoops.

I am becoming doubtful, that I will ever receive extra support. I mean, I get up and go to work, so why do I deserve any help?

I chased my claim last week, not by actually running after it, but by picking up the telephone and calling the DWP. After fifteen minutes, I was told that my claim had been received (they do not send acknowledgments or holding letters), and it had been forwarded to ATOS to process. It was forwarded to ATOS on the 26 September. Helpfully, I was told that this was a long time ago and it should have been processed by now, for this process should take between 6-8 weeks. I was then given a schpeel about the various stages of making a claim, and I was told that they may contact my Medically Trained People (paraphrasing) to see if I am truthful (paraphrasing again). That was exactly the same information I was given in September, and given the fact I had to provide contact details, I found this statement outrageously shocking. Oh, and I may be asked to attend a physical assessment. The DWP could not help me further, so I was given the telephone number of ATOS, to hasten a response directly.

Twenty minutes later, I spoke to a lady at ATOS, who informed me that they were in fact in receipt of my claim, and I needed to be aware that when my claim is being investigated, my Medically Trained People will be contacted and I may be asked to attend a physical assessment. I asked why it was taking so long, in my polite voice, stating the timescales I had just been given by the DWP, to which the the lady became agitated. According to her, the DWP had no right to say that to me, indeed, the DWP is to blame for the whole thing, because they underestimated the number of PIP claims to be processed when they introduced the new benefit, and presumably, contracted out the service. The lady was mad. I feel I calmed her down when I said “okay”. She then decided to tell me that when my claim is processed, I should expect for my Medically Trained People to be contacted and said I may be required to attend a physical assessment. It was good to know, because I had forgotten. We finished the conversation with me being told that there is no timescale by which my claim needs to be processed, when it is, I’ll be contacted by the post.

This is my first experience of the UK benefits system. I am very impressed by it.

I just know that when I finally receive the letter, the dog will have eaten it before I have a chance to read it.



Wanted – Somebody Who Is Good With Their Hands

Ever wondered why you never see a person walking with a walking stick and an umbrella? Even seen somebody walking with a walking stick getting absolutely drenched in the rain and thought, that’s sad, it’s unfortunate they do not have an umbrella? Or have you ever seen somebody with or without a stick, struggle to hold their umbrella for a period of time and pointed them out to your companion, as a pathetic weakling who does not have the strength to hold an umbrella upright?

Rain brings a multitude of dilemmas for the crippled. Going outside can be like Sophie’s Choice. City living really can be traumatic. Something needs to be done to protect the needy from excessive moisture.


The time thus, is a time for action. Action and innovation.


Have you ever wanted to help the disableds and did not know what you could do? Do you always feel like you could be more charitable? Are you handy with some tools? Do you have an overwhelming need to show off your skills? Can you weld? Can you smell titanium?

If you have said ‘yes’ to one or more of the questions above, then maybe two can become one, to create something rather special. Not a baby you fool. Despite having a wealth of creative imagination, I have little skill, it pains me to say in manufacture, crafts and neatness. I am seeking somebody to execute my creation of the walking stick/umbrella combo. The Walking Stick/Umbrella Combo (working title only). The device appears to be a standard walking stick, but the handle either stores an umbrella or holds a weightless umbrella attachment, allowing the unfortunate to protect themselves from the rain, without having to sacrifice their walking support or changing the position of their hand. It’s ingenious. I know, you don’t have to tell me.

Artist’s impression on graph paper



So, if you think you can assist and we can make millions, do seek out contact.

If like me, you have no talent in this area, or simply, if you have no desire to take time out of your physically enabled life, then that is fine. There is no issue. No issue at all. You cannot help me. That’s fine. Just fine. I don’t care.

Emma Jane Jones

P.S. If you are feeling thankful right now that you can go out in the rain and hold an umbrella, and this sorry for those who cannot, but you cannot help my entrepreneurial ambitions, maybe just help out some cancer patients or something. Paul tells me he is going for a jog of some sort, in the east, it’s not quite welding metal, but it’s something. Here’s the link https://www.justgiving.com/PaulTompsett/
If you cannot shower my scheme with money, shower Macmillan via him.


Have you ever filled looked at a form and thought that you would rather stick a needle in your eye and eat a horse manure pie, than to complete it? Of course you have. Well, that is just the predicament I find myself in at present.

Having cancer, and a cancer that effects ones mobility so much that they once asked a stranger to tie up their shoelace, is not enough to qualify as ‘disabled’, nor does it automatically entitle you to all the money in land. The Government, it would seem, require evidence. Mountains of it. I have spent the last week finding out just how much evidence is required.

To make my life just that little bit easier, I wish to be officially classified as disabled and I would like financial assistance with my rent. I have long been a fan of the welfare state, and although I have some misgivings about taking even more of your money, I feel now is the time to cash in on your enforced generosity. I have a cancer with no cure after all.

The only snag in my planning, is that I am not eligible to your money. Well, my landlord is not anyway. During a productive meeting with the Macmillan benefits advisor last week, I discovered that I cannot receive Housing Benefit, because my half pay still means I have £71 per week to live on after rent and council tax. Please note the £71 does not include utility bills. So, with my hopes dashed of receiving an extra £5 per week, I decided to think of a glass half full and be thankful that I did not have to complete another form, which required copies of my bank statement, two pay checks, tenancy agreement, medical diagnosis, proof of identity, two utility bills and Housemate’s salary details. Tick.

The kind lady, who I eventually won over with my manners and smile forty minutes into our chat, did think I would be eligible for free healthcare services. I know what some of you not based in the land of mince pies, shortbread and Stilton, will be confused by this statement, as you may understand our wonderful NHS to be free. Well, dental care, prescriptions (except when you have cancer) and eye care are not free for all. It’s the recession. So, I was given a twenty page form to complete, which only required a pay check, a year’s bank statement, thorough breakdown of financial assets (this was brief) and a utility bill. Bar a copy of my bank statement, that bad boy was completed yesterday. Tick.

When it comes to being disabled, the bureaucratic definition is somewhat more refined than the general public’s might be, and the definition varies between central and local government. Again, I will reiterate that all of this is to make my life that little bit easier, so it may surprise you to hear that to obtain a blue badge and concessionary travel, I needed to complete and provide the following;

* A 36 page form claiming Personal Independence Payment plus three additional pages explaining my physical limitations, which if approved will mean that in some quarters, including cinemas, museums and theatres, I will be classed as ‘Disabled’
* A six page form to my local council requesting free travel, because getting national agreement does not qualify me as disabled because lyctic lesions in the spine does not an automatic disabled make
* An online form requesting a Blue Badge, I am told that my local council may not allow me this, if I have free travel
* At least one, if not two, independent physical assessments
* At least one medical professional to back up my claims
* Numerous medical documents including a list of medication

Yesterday, I spent much of my day preparing this information. It was mildy satisfying, whilst being completely frustrating at the same time. It is a well known fact that government is a well oiled machine, so it wold be no surprise that I found the forms and information confusing. I received one form in the post that came with a stamped addressed envelope to return it, but I was separately informed that the council will only accept it if I return it in person. I feel like this could be a trick. I applied for the PIP benefit over a month ago and I received the form last week, thank goodness it was not urgent. Fortunately, there is a PIP helpline, which I phoned twice and I when I asked what information would be required, I was told that the help desk person had not seen the form. So, that was useful.

I will tell you something for nothing, I am constantly heading things about ‘Benefit Britain’ and people taking advantage of the system, but in order for somebody to understand these forms, they must be a frickin’ genius and deserve whatever they get. Even the ones who warrant the reminder to complete the forms in ink, with their own information and those of another.

Personally, I do not understand why there are so many hoops to jump. The system seems to be designed so that the applicant is branded a liar and then has to prove their innocence. Living with cancer is just so easy after all. It feels like a competition. My medical ailment is worse than yours… Fact.

Now, after all that form filling and ink, I have to take a trip to a photocopier, and then wait, and do a physical assessment and find out more about a mystery taxi service and try to recover from my transplant. Tick.


The Pain Game

I do not think I have any right to complain about my pain. I have the right to complain about My Myeloma. Not the pain. Not right now.

The truth is, and this has been the case since last October, that the Medically Trained People have given me additional medication to alleviate some of the pain. That medication is called Oramorph. I would have mentioned it before, such is my distaste for the stuff. See for yourself http://ejbones.wordpress.com/2013/01/13/oramorph/.

The difference between now and then, is that I have taken Oramorph since. I took a lot if it in fact, during my 12 night stay with T13′s Angels. My reunion showed me, by slapping me in the face, why I should not take the stuff unless I absolutely, positively, cannot open my eyes due to pain, have to. Despite the pain I am experiencing now, it is not the time to take it. I do not need another cause of fatigue and delirium, and that is what it would give me.

At the moment, the benefits of the ‘morph are far outweighed by the disadvantages. I absolutely would like some temporary pain relief. I really wanted it a week or so ago when I had lady cramps rivalling childbirth. Morphine for period pain just did not sound right. In the end, as I am not allowed to take ibuprofen anymore, I settled for codeine (after checking with a Medically Trained Person). My life would be easier if I did not experience pain, but Oramorph does not just reduce pains, that’s right, plural. Oramorph makes me slur, it makes me sleepy, it makes me groggy, it makes everything appear fuzzy, and as I experienced in hospital, it can make me hallucinate.

Recreationally, some people, not me for I missed that boat and my addiction to beer is enough, would enjoy some of those symptoms, but when one is already feeling shite, it just gives you further reason to feel shite. The icing on the cake now, is that I need to take a fairly hefty dose for it to have an effect on the target area. After all, I have taken a form of morphine everyday for a year and two days; I have tolerance. Most the time, if I do not skip a dose or am I voluntarily trying to reduce it, I take 60mg of it a day. I was told by the Medically Trained People that this resulted in me needing more of the liquid stuff when I was in dire straits. Essentially, I am a druggie. I suspect, without any medical proof or advice, that this is why I experienced the other side effects so keenly.

Do not get me wrong. I like the feeling of loosening up, maybe even losing a bit of control with the help of substances. By substances, I mean alcohol because I am a square. Maybe not a square if you have seen me when I am drunk. The feeling morphine gives me, is far beyond a loosening up. It’s like I have tinnitus of a floating body.

If you had not guessed or did not know, morphine is a controlled substance. If for any reason I was to visit a prison, I would not be allowed it in my handbag. That fact it is controlled makes you know it is strong. I intend to make a punch from it when I am done for my guests at a mature and grown up party. Not really Pharmacy. I am very sensible with my drugs and follow all the rules. I concerned myself early on that morphine was controlled for a reason and in it’s breakthrough forms, was addictive. This just have me further reason to stop last Autumn. Four addictions was enough already (cigarettes, beer, fizzy water and EMan). I do not need anymore.

Most importantly, and this is what is overrules the pain, I want to be able to think and speak like I have thought. Oramorph does not afford me that pleasure. I had two days in my cell, where I had spent hours feeling and looking like I was about to give birth to an energetic octopus, so gave in and asked for the ‘morph, which resulted in some pretty funky dreams. They were not dreams, for I was awake. I know O was awake because on one occasion, my vision carried on whilst I got up and pooped the green.

My special trip felt like it went on for hours. I have no clue of it’s actual duration, but it clearly derived from the pain I was in. I imagined there was an entire planet inside my stomach, which existed within a red theatre with stalls, circle, a dress circle and an upper dress circle. The planet was made up of ants who were appeared human, who walked by playing the drums. It went on and on and on. The more it went on, the more uneasy I became. I do not recommend it. The following day, I knew, that Oramorph and me, should only go together in a controlled environment.

Aw, the choices we have to make. I choose me.


P.S. I maintain that I can withstand a considerable amount of pain, especially with the MST. Myeloma did that for me. I guess, pain in itself, does not scare anymore, not after the fractures and all the pokings. That said, the all consuming pain experienced during my menstral cycle, which was post transplant and post artificial mess me arounds, was surprisingly. Women and men, I can honestly say, that the pain of that period was on par with my first rib fracture. I may even have preferred the rib fracture. True story.

The Lover’s Tiff

I have made no secret of the fact that I harbour a little torch for my walking stick. My feelings may be stronger than that. We are in a relationship. It’s ideal really, because He does not talk back to me.

Since the start of our relationship, there have been a few instances where He has decided to run off. Perhaps it’s because I am high maintenance, I don’t know, but He has these occasional disappearing bouts which leave me heartbroken and in need of Magic FM’s Ten at Ten. For the rest of the time, we are very happy together. We hold hands and He feels valued. I am sure of it.

This week, we had an episode. We had gone out for dinner and on our return, we decided to pop into Sainsbury’s to buy some orange flavoured ice lollies. I thought everything was fine. We had spent some quality time together; things were good. So, imagine my surprise the following evening when I went to leave my flat for an excursion to the BFI, and I discovered that my stick was not there. He had disappeared. He had gone. It was over.

Two days went by. I retraced my steps and I could not think where He had gone. I thought that the end was here. Our relationship was done and I was going to have to confront the outside world by myself. In that two days, I did confront the world by myself and let me tell you something for nothing. Public transport, without my anchor, is terrifying and dangerous. Without Him in my hand, nobody knows I am sick and nobody was willing to give up their seat. Walking down the street, I felt alone and I knew that I am not at the stage in my illness yet, where I can venture outside my front door completely alone.

Fortunately, by Friday, I remembered. I remembered getting so excited that the orange flavoured ice lollies and if I am honest, the Ribena ice lollies were on offer, that I put them in my basket and left Him learning against a glass door staring at the choc ices. I went on to google, I got the telephone number for the Sainsbury’s in Dalston and I dialled. I then asked the embarrassing question.

Me: Um, hello, I know this sounds strange, but do you have a lost property and if yes, has somebody handed in a walking stick?
Sainsbury’s Customer Service, Dalston: No.
Me: [silent devastation]
SCSD: Actually, we have something, it’s silver. Can you describe what it looks like?
Me: Yes. It is silver…. It’s a standard NHS issue walking stick, with a grey rubber handle, and there is a cap missing on the handle so you can store things in it. I love it. It has a rubber bottom as well.
SCSD: Yes, it is here. Just come to the Customer Service Desk.
Me: Thank you so much [exhale].

He was collected later in the day. I approached the desk unaided and left limping. To the passerby, I must have looked like a benefit cheat. I did not dwell on this, for I know why I need my beloved. And let’s face it, if it were not for me, He would have no purpose in life.

People may wonder how I could mange to leave my stick in a store and not realise. It’s not because I am absent minded. No way. It’s not because I cannot multitask. Not even. It’s not because I lose things all the time. Think again. It’s because I am a fool in love with a big, long stick.


Every relationship has its ups and downs right?


Today I found myself on the tube or to go by its official name, the London Underground. I have never been a fan of the tube, it’s the sweat aspect of it really, people’s sweat in my face and my sweat on my pits. Anyway, I was on the tube because I was running late and even though I do not like it, and there are more changes, which does me no good at all, it is faster than the bus. Practical.

So there I was on the Victoria Line, with my walking stick. I walked through the sliding doors into the carriage, rattling my stick, to find all the seats taken. People looked up and me, but nobody was budging. Bastards. This threw me into a dilemma. The only reason I travel with the bloody stick is to avoid situations where I have to ask somebody for a seat. In terms of my manners with strangers, at times when I do not have steroids pumping through my veins, I am the most English of English people. I say sorry to people when they bash into me, I like to queue if there are seats, and as it turns out, I do not ask people if I can have a seat on the tube because I do not want to appear rude.

Ordinarily, I think I could have managed the 15 minute journey standing, but somebody on my train was taken ill, which added a further 20 minutes to the journey. People tutted. I rattled my walking stick some more and sighed. People did nothing. Instead, I had a couple who both needed to wash their hair, shove their instruments in my face.

I then had a hot flush, one really needs to sit during one of those bad boys, if only so there is something else there to absorb the sweat from my butt. And still, my fellow commuters, travelling outside of rush hour, were oblivious to my plight. Perhaps they were all afflicted with an invisible disability like me and were brave enough to face the world without a visible symbol of weakness, but the odds of that are pretty slim, like getting myeloma. I will take a gamble however and say that the majority did not have an invisible disability. The longer I stood, the more I could feel my back, invisibly poking me. Perhaps I need a badge, like the ‘Baby on Board’ badges that says, ‘Cancer. Weak Bones. Take Pity’. I did contemplate theatrically removing my hat, because I thought that my head plus walking stick would definitely result in somebody giving me there seat, but I vetoed that, because it would have meant that I had to carry my hat as well as my coat, stick and handbag. The longer I stood, the more I believed that everybody in my carriage was evil, and I mean urinate on puppies and kittens type of evil. By Oxford Circus, I was convinced that there were so evil, that they might actually defecate on those puppies and kittens too. Bastards.

All of that venom and anguish because I was too polite to ask for a seat. I say polite, you may say something else.

I’ll have to learn…

My name is Emma Jane Jones and I have a disability.

Fortunately my faith in humankind was almost restored on the District Line when a Mr Darcy-esque male with manners, offered me his seat without prompting when I changed tubes. I felt a bit sorry for him, not because he was wearing a pointy loafer, but because I was only on that train for a stop. But my, did that seat feel good. I sighed with pleasure. Trust me, that’s not a pleasant sound for anybody. I then felt sorry for everybody on the carriage. Well, the people not listening to their iPods.

Your Own Fault

One of the things about being disabled that really bothers me is having lost the ability to punch someone right in the nose. Of course, the disability is central to wanting to throw the punch in the first place. What I’m mumbling about is the category of self-appointed prophets of social wisdom who make statements like “You’re only a victim if you let yourself be one. If you’re a victim, it’s your own fault. Aside from wanting to pop them on the button, I also start wishing for a bolt of lightning or a meteorite to fall from the sky and smite them, laying them forever low.

I understand what they mean. They aren’t saying the people have terrible accidents or contract profound illness by choice. They mean that those of us who have suffered a significant physical handicap should grin and bear it; make lemons of lemonade. Do something inspirational so Reader’s Digest can ooh and ahh in enlarged type or the local news can put you in a “making a difference” segemnt. The fact is, people with profound handicap do pretty much the best they can with what they have to begin with, and so some ignorant bastard intimating that we should somehow do better is inevitable ill-informed and disrespectful. Not inspirational. Even Wilford Brimley would never suggest such a thing, fountain of inspirational Americana that he is.

Like ol’ Lance Armstrong. Everyone looks at Lance and because he had a suppressable cancer and managed to continue his life, he is lauded as an example of how it should be done. Lance was merely lucky enough to be able to continue his life because his cancer wasn’t the debilitating catastrophe that it is for many. The truth is, a lot of people with cancer continue their lives as much as they can, only relinquishing capability as it is wrenched away from them forcibly. No offense to Lance, but I’m impressed by him for his Tour d’ France cycling on its merits alone. I don’t consider him a cancer victim so much as I view him as an athlete with one of the cancers that modern medicine is able to contain –to the degree he is able to continue his career. His very physical state is testament to the limited effect cancer hand on him. So holding him up as an inspiration is actually kind of dishonest in my view.

The vast majority of people who are handicapped yet out and about are already doing their best. Otherwise, they wouldn’t be there to listen to some senseless pundit tell them they’re only a victim because they choose to be. The people who throw in the towel self-isolate to the point that they won’t be anywhere to hear those words or active enough mentally to encounter the words on a video broadcast or the printed word. So strike two for the dimwits who utter senseless phrases that cast blame on the victim.

Strike three is that those who spew this verbal diarrhea usually don’t know the people who are the target audience, meaning that these people are speaking out of turn about people they know nothing at all about. You see them floating from person to person at cocktail parties, madly painting themselves as intellectual illuminati for reasons I have to assume stem from low self image. I tend to think they belch their verbal flatuence to hide, even from themselves, their own low oipinion of themselves. After all, who but a low life is going to pick on a gimp?

Where society would be up in ars immediately had someone slapped the face of a disabled person as they sat in their wheelchair, for some reason much of society merely nods sagely as people speak their so called inspiration. No one stands up and asks “What do you know about this person? How can you make an assertion like that?” No one calls a person who inflicts an emotional assault like that on the carpet as they should. Why? Because we perceive this person to be learned and positive rather than a wolf in sheeps clothing.  There is something very terribly wrong with what these people are saying and they have no idea how much emoptional pain they dump on a handicapped person when they spew that shit. I know. I have had it said to me and I felt terrible for a few days as I took the responsibility for all of the things that people had to do for me because I couldn’t do it for myself. Then too, I would end up hurting myself as I tried to be more active and to be more contributory, taking a double hit off of the single incident.

Much better to congratulate the people who have to work with disability for the things they manage to do as they try to live their lives in spite of pain or challenge. Life is not something that can be summed up in a Hallmark Card phrase, and anyone who thinks it can should be folded, stapled and mutilated.


Woe, oh woe

“Yooo gotta have heart…” crooned the radio I found in the basement. I didn’t even know there were still radio stations. Had to figure everything was online by now –or reflected off of a satellite. But the radio was belting out hits of yesteryear –all of the artists dead and buried. Here I was listening to these songs and recognizing them, able to name their performers. Not something I can do with today’s artists. Nowadays all these kids are out there under the spotlight and I have absolutely no clue who they are. Anyway, I listened to the radio and sat looking into my back yard, lamenting how much the grass had grown. My brand new, super sleek, much too expensive lawn tractor threw its blade off and the lawn had gone unattended while I awaited the parts to fix my beloved mobility mower.

In order to fix the mower, I had to lift it. Since I had no jack that would fit it, I had to locate a jack. Turned out that the best I could do was a tractor jack made for my tractor, available from good old Sears. It’s basically an L shaped chunk of steel tubing with wheels mounted at the bend of the ‘L.’ You hook it under the front frame member and lay the ‘L’ on its back and the front of th tractor lifts up about eight inches. Enough to reach under the cutting hood and replace the blade. I noticed that the blade had suffered abuse in the first couple of months of ownership, the blade having lost its edge. The last bit of mowing was done by brute force rather than cutting. That meant that I needed to sharpen the blade, and so of course I bought a bench grinder.  I was now well equipped, what with a tractor, a 48″ cutting deck, a snow plow, sweeper, broadcast sprayer, jack and grinder. This brought me to the conclusion that tractors were actually a lot like heroin. The salesman hooks you into buying a tractor and then bleeds you for life over fixes of accessories.

The radio kept playing and I tried to imagine Frank Sinatra riding a garden tractor. The image failed, but for some reason I could picture Bing Crosby scooting across a lawn on one. I dispensed with the images, considering that neither of them happened to be on the radio. Herb Alpert was blowing away on his trumpet and I turned my attention back towards by crippled tractor. There was a time that I would have had the thing fixed and back reeling in the years in minutes. But these days I have to sit back and try to direct others in how I would like my devices repaired. This always produces squeaks and squawks from me as people take pliers to the nuts and bolts instead of using the set of perfectly good box end wrenches I have produced for the event. That might be one of the most difficult parts of disability; having to rely on others to do things we are actually very good at –which is to say that there is something to the expression about having to do a job yourself if you want it done right. At the moment, I don’t even have anyone available to do it wrong, and that’s why I’m listening to old music on an old radio while looking at my pretty black but wounded tractor.

I toasted my machine with a glass of Coke, saying “you and me kiddo!” as an homage to the fact that we are disabled together. Of course, the tractor’s problems can be solved by a bit of mechanical endeavor where as my problem is a bit more of a poser. I wish I could simply buy some off the shelf parts and replace the worn and abused parts of my body, perhaps shaping bits of it with that bench grinder. There are times that I wonder if the medical research field has actually figured out ways to repair the body, but using the mandate of planned obsolescence, the miracles are being held back. You know, like Detroit is doing with all of those cars that run on water instead of gas.

I turn to look at the radio, snapping my head so fast that it makes a crunch noise. Frankie Avalon is singing “Beach Blanket Bingo.” That does not belong in the run of music that has been played and it yanks me from my conspiracy theory reverie. I give the tuning knob a twist and find a country music station. Hank Williams Junior is singing and that means I need to turn the tuning knob faster. I don’t care what genre of music it is, I really hate nasal whining. For some reason, whenever I hear someone whining nasally, I think of Jerry Springer guests, each holding a beer and trying to explain their political views as they relate to infidelity, big rig trucking, and honky tonk bars with sawdust on the floor to soak up the beer, blood and urine that gives the air such an indescribable odor. The spell is broken, and my tractor becomes just another of the things I need to address in my growing to do list. At least the weather is warming up. It’s looking like we might have a nice summer.

I turned off the old radio and carried it back down to the basement where I would let it sit for another few years of inattention. When I got the radio, my world had room for a lot more music than it apparently does now. I bought the boom box at a K Mart for $35 back in the wonderful days that I had never heard of Multiple Myeloma and cancer was something other people had. Somewhere along the way between then and now, my education and experience have caused major changes in preferences and priorities, and somehow music doesn’t have the import it once did. I used to have music playing in the background all of the time. Come to think of it, I have entire disk drives filled to capacity with the music of my lifetime. Music which, I might add, did not include the run of tunes I had been just listening to. While I recognized the music and could hum or sing along should I choose, the music my radio played was the B side to the albums that scored my path of life. It was popular at the same time as the rock and roll to which I pay homage. Now my $35 radio is a kind of time machine; a diversion to pull out occasionally. I let it act as a muse to see where those thoughts take me, only to find myself in the cul de sac which is my pathetic life.

Did I mention my tractor was broken?

Unforeseen Side Effects

The stupid van was late again. He hated it when the van was late, it just added to the feeling of helplessness and vulnerability that draped over him like a wet blanket. At times it was almost suffocating. He sat in the wheelchair, looking a lot smaller than his five foot eight inch height. His brown hair had turned gray at the temples, but it wasn’t a distinguished look. Not with the scraggy way his hair had grown back after chemotherapy caused him to lose it –leaving him bald as a cue ball for fourteen long months. He still wore a hat, a habit after wearing one so long to hide his baldness. Actually, the bald part wasn’t so bad as getting there, when his hair came out in bunches and left him looking mangy and diseased. The chemo had dried his skin out as well, leaving him with patches of flaking areas that rained dry skin flakes from his head to his shoulders like dandruff gone berserk. Once weighing in at 180 pounds, he was a slight 102 now, his muscles atrophied, consumed the same way the cancer had consumed his entire body. He was being eaten alive.

It was a blustery day, snow flurries on and off were driven by a cold wind that cut through the coat he wore and chilled his legs through his pants. If he’d had his druthers, he’d have stayed home today, but the doctor made an appointment for a reason and so he came. He rode his scooter the six blocks from his apartment to the outreach center where he parked his scooter in a storage room and was helped into a wheelchair by a volunteer and loaded into the step van that made a courtesy circuit for a number of disabled veterans, getting them to their appointments various places around town. It was almost haphazard, appointments of some causing delays that built up and affected the others on the van. He appointment had been over for nearly forty minute, leaving him sitting on the corner, shivering, and waiting for his ride.

He felt a presence from behind him and arms reached to either side and unlocked the chair’s brakes. He felt himself start to move and spoke over his shoulder that it was about time they picked him up, he was freezing his ass off. His comment brought no reply and he craned his neck around to look at the van driver and attendant pushing him along. But the man he saw wasn’t the driver he expected, it was someone he didn’t know. Even with the quick glance he knew something was amiss. He was being pushed by a scruffy looking kid, maybe eighteen, maybe more. He had that look of life wearing heavily, like the countenance of a drug addicts. He noted the greasy look to the coat worn by the man, a look that said it had been a long time since it had seen a cleaning, the cuffs frayed and threadbare. “Who’re you?” he asked. But still he got no reply. He began to look up and down the street, but there was no one in sight, just a few cars, their windshield wipers trying to stay ahead of the wet flurries that had been growing in intensity along with the wind. They were moving pretty quickly now, faster than he liked and his fear was adding to the chill he felt, it was making his legs shake almost uncontrollably. “Where are you taking me?” he shouted. But still no answer.

The area of town had the streets fronted by buildings of concrete and brick, mostly medical, a thousand different offices located within them. Some had parking in under-building garages, and his abductor was wheeling him into one. In through the wide door, his captor pushed him and then darted him in between a row of cars before roughly spinning the chair around. His hand was pinched between the side of a van and the arm of the wheelchair and he shouted in pain. His abductor backhanded him across the face and finally spoke. “Shut the fuck up, gimp.” he said. “Just shut up and cooperate and we’ll be done and you can get back to wherever it is you crips disappear to. But first, I know you got money. Give it to me. And if you got any drugs, I;ll take those too.”

“I don’t have anything. I got nothing. I’m just a diabled guy, no better off than you.”

“Naw, you’re worse off than me, dipshit. I got arms and legs that work, I’m no gimpy ass retard like you. Now give it up.”

“But… I don’t have anythi…” he was cut off by another vicious backhand. He felt the pain and warmth it made on his face, and then felt the trickle he knew was blood running down from his nose. His captor roughly pushed him aside, almost teetering the chair over. He roughly started feeling for bulges, stuffing his hands in pockets. Finding nothing on one side, he repeated the move on the other. This time his hand came out of a pants pocket with a small wad a bills.

“Nothing, eh? Lyin’ sack o’ shit.” He slapped his victim again, much harder this time. It caused stars and a rushing noise in his ears. The frisk continued and from the coat pocket he pulled a small paper bag. In it were a pair of amber medication bottle. The label of one was marked “Calcium,” the other was marked “Morphine.” I knew it. I fuckin’ knew it. You wimp as bitches are all alike..” The assailant pocketed the money and the morphine and threw the calcium supplements on the concrete floor of the garage.

“Okay, okay. You got everything I got. Take it. Leave me alone, please.. Just go.”

“Go? You don’t fuckin’ tell me to go, gimpy. You lied to me. Tere’s a price for that. Where’s your wallet?” He didn’t wait for an answer, but pulled his victim forward by his collar, dumping him face first onto the cement. The impact was agony, his entire body reacting painfully to the fall. He lay there on his hands and knees as the perpetrator checked his back pockets for a wallet. He found it, empty except for some ID and a debit card. He pulled the debit and tossed the wallet so it skittered across the floor, coming to rest under a parked station wagon. “What’s the pin number, Gimpy?”

Angered and humiliated, the last thing the vet was going to do was give his pin number to his prick. He remained silent. “Nothing to say, fucker? Fine.” he was grabbed and stuffed back into the chair, again sending jolts of electric agony through his tortured body.”I think you’re gonna tell me.”  Then he was moving again. His chair was shoved forward and out from between the parked cars that had concealed the mugging. “You got one chance, asshole. Tell me the number or I’m gonna shove your ass in front of a bus.” The agonized vet just gritted his teeth and refused to give the punk satisfaction.

The chair was accelerating and the vet could hear the exertion of his captor as he got the chair moving faster and faster, the wide garage door coming closer all the time. On the street outside, traffic had started to accelerate, the cars released by a stop light at the end of the block. “Last chance old man!” And then he was freewheeling into the street. In his pain, spiked by fear, his vision was a jumble, he only registered the pickup truck bearing down on him at the last moment. There was a squeal of brakes and then everything went black. He didn’t see that he’d been knocked from the chair to sail across traffic where a woman with her two teen aged daughters in the car ran over his broken body. He didn’t hear that squeal of brakes –nor the hysterical screaming of the woman driver or the confused shouts of the pickup driver. Truth told, his last earthly experience was the adrenaline rush of realization as he saw the truck coming his way, much too fast to stop. Time’s up, he thought.

An overloaded police department gave some attention to the case. But no one was sure whether it was an accident, no one having seen the assailant vanish back into the garage to exit through the back side of the building. The victim wasn’t alive to testify, and so the death certificate was marked as “Death by unknown misadventure” and the case was closed. There was some question on the part of the responding officers, but tight schedules and reduced budgets left him a low priority. After all, disabled people, especially cancer victims died all the time. His premature death might have done him a favor, said a number of cops.

An ironic death, like so many. He’d been disabled as a result of his military service. Fighting for the rights and freedoms he found important enough to risk it all for. A dedication too many American’s simply don’t feel. Fact was, his van driver had forgotten him entirely. He’d been abandoned and there was every chance he might have perished from hypothermia. But those who fight and return as disabled vets knew the risks going in. It was he who volunteered to go fight, so it wasn’t anyone’s fault but his that there was a later price to pay. After all, a single choice can lead to any number of consequences.


First Post in 2012

I don’t like that I’m so inconsistent in my blogging here. My intentions were good when I created this blog. They remained good throughout the years even. But I just can’t seem to get to it on THIS blog.

I started out with three blogs (on three different locations). My purpose for each blog was not clear…to me. I thought I’d had a plan in my mind, but I really didn’t. I’d hoped that in time it’d just work out and I’d figure it out. It hasn’t happened. Yet.

What mainly keeps me linked to this blog is that every once in a while I receive comments that touch my heart, inspire me, or plain old get my attention. Last November I made friends with a wonderful lady who had commented. We send emails back-and-forth periodically (she’s better at it than me). (NOTE TO SELF: I need to not only write her, but get pictures together and send her a package. Maybe I can accomplish this by July.)

I also receive a load of spam associated with it. Comments do not show unless I approve them. There are options for the comments to approve, trash, or assign as spam. For some reason, I suddenly started receiving lots of spam comments. Over the years I’d accumulated over 1500 spammed comments. For some reason I deleted them. I think I opened the gates for those spammers to spam me again. Perhaps in time the spam will once again slow down…once I respam the spammers. *sigh* I don’t even understand what the purpose is for spammers, but they must be really sorry people/groups.

Anyway — here is my first offical post for 2012. Thus far my MM is remaining dormant. I am not taking Revlimid or any other treatment for it. As I explained in previous posts, my doctor told me that the current regimen is to place MM patients in partial remissions as I am in, on a maintenance dosage. It’d probably be Revlimid and I don’t know if it’d include a steroid or anything else. Since I’ve maintained very well without it for over four years, he’s leaving well enough alone.

Again, as I’ve stated in previous posts, I do have spinal cord damage and have major issues with it. The tumor I’d had at my T8 caused my spinal cord to atrophy. I don’t function well from about the waist on down. That includes walking and even moving my legs and feet, let alone eliminating (urinating and bowel functioning). With not functioning well comes extreme discomfort and pain. There’s a difference between the two and one is not any easier to cope with than the other. That might be a good topic for another entry in that maybe I can reach another individual dealing with the same thing.

While frankly I hate having to deal with this spinal cord damage because of the pain and discomfort, I think just as challenging for me is that I do not know of one other individual in the same predicament as me: MM’r in partial remission & doing fairly good but has spinal cord damage with similar effects as me. As weird as it sounds, I envy women who get breast cancer as opposed to this. They at least have common issues and can bond. They can relate with what the other women are experiencing. Even other people with MM seem to have much in common. At least it seems that way to me. I’ve not come across another individual who got MM, went into a partial remission and doing relatively well considering the MM progression–but then have to deal with the crippling & demobilizing effects of damage to the spine. My spinal cord damage does seem to be getting worse, too, which is a little alarming to me. I get around, drive to the store and to most doctor appointments, and such – but it is difficult. And it’s getting more difficult. But I still can do it. It would be so helpful to talk to another in the same predicament.

I’ve checked out support groups, asked the nurse practitioners, doctors, and other medical personnel I come in contact with if they knew of one, but to no success. I haven’t tried in a while, so it may be time to search some more.

I do belong to a MM support group and I highly recommend anyone with MM to find one. The one in my area is a great group. They have bbq’s and special meetings throughout the year and are supportive of each other. Over the years I’ve lost contact with them. It’s weird I say this as I don’t attend the meetings – but I am on their mailing list. It’s like I’m a lurker…lol. They’ve just started sending out meeting minutes. I had attended only a few meetings at the start but discontinued when I started having problems getting around. They are about an hour’s drive away and in the depths of the city. Last I attended they are on an upper floor but I do recall there is an elevator. I’m not sure I have the physical strength to first make the drive, then make the walk to the meeting room, then have the stamina to endure the meeting and make it back home. This is something I should reconsider. Perhaps during the nice summer weather I can try to attend a meeting and get reacquainted. If there is another in my personal predicament, by being an active participant in the group would be a way meet them.

I need to try to muster the courage and the strength to perhaps give one of those meetings a try. But I also must have the wisdom not to bite off more than I can chew. As I type this I know that it’s not feasible for me to drive that far to a meeting – as good as it would be for me. I will still ponder it to make sure it absolutely is not feasible…that I’m not wimping out. Sometimes I get myself in trouble when I’m afraid I’m being a wimp and I get myself out on a limb I have no business being on.

This post is disorganized. There’s really no central theme or point in it, is there? Well, I guess I did touch base.

I plan on writing again, perhaps one entry to focus on just where I am in my mobility or lack of. It will either be helpful to another with similar symptoms OR I may meet someone with whom we can share our ideas and what works for us.

Also, I will post pics of my patio. As I’d mentioned in an earlier post, I planned on enjoying my patio this summer. I’ve been sensing that I am slowly getting worse in this spinal cord damage. I don’t even want to admit it, but I suspect I will eventually be wheelchair bound. *sigh* In the meantime, I am going to do as much as I can to enjoy what independence I have left. That stated, I planted lots of flowers and veggie stuff. My patio is full of various potted plants. I got that new umbrella I needed. I love it. In another post I will not only describe my patio but I hope to post pictures of it. But I will inform that I have four different tomato plants (all with tomatoes on them already), four green pepper plants (one with two nice sized peppers already!), herbs of thyme, rosemary, cilantro, & parsley, and spinach. Then I have violas, impatients, gerbara daisies, another kind of purplish-white daisy, and some other lovely flowers that I forgot the name. I’ll list all that in the post.

Until next entry….hopefully in a timely manner…God bless!