29 May 2011

Different Ways for Different Times

As an owner trainer of my service dogs, I get many concepts when it comes to training my dogs. I understand that even within a same breed, individual dogs can learn concepts differently, that they may need me to alter my approach to training, that they may fit within the realm of softness to hardness differently in one type of scenario than they are as a general overall principle for them as an individual, that one dog may have certain areas where they follow your lead and other areas or times where their stubbornness can go off the charts.

I won't say these aspects are always easy or that I work with and through them in a perfect fashion. That has been far from the case. It takes the training of many dogs of different breeds and temperaments for any trainer to be truly skilled at what they do. Much of what I have done, has come through much trial and error. In Thane's case it was also clouded by grief and the mentality of trying to mold Thane into Met.

But this post is not so much about these factors- as these factors concentrate around the dog side of the training and team- much of which at this stage with Thane I have figured out the direction and approach that works best or am flexible enough to follow the lead he is showing me to get to the place I seek to be. I have figured out that he is a soft dog who vibes off me which has made me a much better handler and individual in dealing with stressful situations. This post is about the handler side of things. It is about dealing with multiple disabilities that often bring with them much fluctuation in my functional day to day life.

I don't talk much about my disabilities in my blog because frankly I just want a place where I am seen for the inside pages as opposed to the book cover of the physical shell. That all said, I am beginning to feel the need to let down my guard as others have done. Perhaps its because by letting down my guard, I can share with you the kinds of training that can truly prepare one for the unknown- so here goes.

When you wake up each morning, you probably know what you are going to feel like, how much energy you will have, how your limbs will function, whether or not you can get to point B without smacking into a wall from vertigo or any other myriad of functions that as an able bodied healthy person you probably take for granted. This isn't the side of the coin that I deal with however.

I have multiple disabilities and have for more years than not. I am a deafblind individual living with incomplete quadriplegia, complete paraplegia, MCS (multiple chemical sensitivities), low kidney function as a reminder of my chemo days, asthma that can rapidly spike to a level of it being hard to communicate secondary to a variety of triggers from my MCS, and a problem that to this day no one has the answers to. It comes on with minimal notice and can affect me in a myriad of ways- feeling like blood sugar is crashing or I'm going to pass out without typical treatments of such bearing any changes on the sensation, vertigo, loss of where I am in space, episodes of complete deafness and at the least greater level of blindness, confusion of how I got where I am- like being in a daydream but not having any daydream of thoughts to cause it. Its believed its linked to the cause of my blindness and to the cause of the further deterioration of my deafness but not the initial cause of that condition. I've accepted that possibility since it is viral in nature and the cause of my GI system roller coaster ride.

My disabilities have several causes working together from birth or shortly thereafter to accident causation to disease. The mere fact that I am alive is a testament to my tenacity and stubbornness but at the same time that survival is a factor in the progressive nature of some of my disabilities and even the causation of others.

The month of May has been MCS awareness month. You'd think I would be shouting out about it every day. Instead I sat back and let others do the shouting such as my dear friend Sharon at After Gadget blog. Its stupid I know, but I feel like it takes all the spoons I can muster to live my life with MCS- I'm not going to focus on it in the one place I really have to escape from the trappings of my disabilities and diseases. So there you have it- call it what you will- denial, anger, escape- I just don't want myself to be thought of as the woman with all these diseases and disabilities that it seems too unbelievable to be true that someone like her/ like me can function as independently as I do amidst all this crap that quite frankly, SUCKS!

This is just a fraction- a bit more about what I deal with- but you really can't even begin to fathom what all of this does to one- the amount of energy it takes to do the things I must to live my life. For instance I am severely impacted by smoke, lawn mowing (for up to a week after its been cut), amongst other things. Yesterday the new and very inconsiderate neighbor across the street spent nearly six hours open burning in the field across the way. My lungs are screaming, my voice volume is so low that at times Thane can not hear me and frankly I feel so weak and out of it unable to find my place in space easily if I change position. To say I feel like HELL is an understatement. This is just a really minute piece of what I deal with. If this was not bad enough, mowing has begun both across the street and at the complex I live in. I did other things today that used way more spoons than I had to give, but necessary things nonetheless.

I felt the need to share these aspects before I entered into the real theme of what I am wanting to convey in this post- that of working differently with ones service animal as life's twists and turns bombard you. See some people ask me when I train various skills if they are things I really need or if I am training them to keep Thane's mind stimulated and his stress level from life in an apartment in an area of the country where someone forgot to tell the sky that we should be in summer weather now.

Reality is that some of the skills are only needed on occasion and that some of them are not things that I presently need. I know from experience living in my body though that every day brings with it differences from the previous day or from the next day- surprises essentially. I never know just what I am going to be like before or even after I pull my paralyzed frame out of bed each day.

Today was one of those bad days where so much was wrong, yet with my redhead here, I achieved much. I have not been able to use my tilt for over a week now because the placement of my skin issue from the close call we had over a week ago is such that excessive pressure is placed on it if I tilt. This brings with it extra spasticity and pain as well as more difficulty breathing even without a trigger to my lung function because not only can't I tilt but I can't use positioning belts and harnesses because they too force too much pressure on my skin. Even my digestion has been affected negatively by not being able to use these things. As a result, I must work with my service dog in very different ways. Had I stopped his training, target practice, and not trained the fun for all type tasks into our routine- the errand we ran today never would have been possible.

With extra spasticity comes a need for my dog to ignore sudden thrusts of the harness handle. It also means that he has to be gentler in his approaches with me that require close contact as well as accepting my bouncing leg when he does the paws command or my hands that might accidentally hit him when I reach out to stroke his head. He has to adapt to my functional changes which includes working differently with me in order to get his harness and coat on and off of him- using paws command instead of standing, as well as frequent adjustments and *how high* with each front paw so that various straps can be positioned in just the perfect place. This is not near as easy as it may sound.

With decreased lung function and a gas mask, it also means that my service dog can not hear me make vocal commands. We have spent the last 6-8 months working some key commands in ASL and/ or home sign just for such occurrences. Though his focus and comprehension is still a work in progress with this approach, we can communicate if we take it slow for tasks related to harness work. Foundation and Obedience commands, we are quite a team with.

Today I was a bit disoriented- meaning I wasn't really sure about distances we'd travel and where we were at along that route. That could be dangerous for a deafblind individual. Thane seems to have a sense of how I am doing. On days when I am really lost like this, he seems to get that *goofing off* just isn't OK. Now when I say goofing off, its more little innuendos of harness pull and speed as well as stubbornness about which route we are going to take. In case you are reading this and do not understand the complexities of working a guide dog- harness pull is not the same thing as pulling on lead. Its an important aspect in the work a guide dog performs. A post on this topic is in the works.

Thane spent much of the day realizing I needed just a bit more today- a bit more involvement in household tasks, a bit more involvement in how I play with him, a bit more patience in how much I interacted, a bit more patience with me in realms of errors on my part in communication.

He's a tough and smart little cookie. Without Thane in my life and trained as much as he is (that training is so far from over) I really would not be living the independent life I am today. I would be forced to deal with evaluations for care workers by a worker who doesn't consider my MCS when it comes to her *bathing in everything scented* approach to her own personal care. Basically my disability would make her make changes that frankly she aint going to do. Yes that violates my rights but since I prefer my independent life and could never get workers in our area to comply with whats necessary for life with MCS, I choose not to spend my spoons educating and/ or fighting with a system that is more broke than anyone could fathom. My care worker is my wonderful little redhead smile I hate to think where I would be without this little guy curled up at my feet.

What kind of day will tomorrow bring with it? Will I wake up invigorated or will it be another day to lay at the foot of my bed watching JAG or maybe 4400 re-runs from tapes I made over the years, while telling Thane how sorry I am about not taking him for a walk or to town. Only tomorrow morning will tell that tale.


  1. This is my first time on your blog, led here through the Canary Report. Thank you for bravely sharing the MCS diagnosis and other disabilities. Someday I will do the same. Blessing to you and Thane!

  2. Dear Karyn,
    Deeply appreciating your post and resonating with the incredible energy it requires to simply exist in small daily movements.

    I often find myself saying to others, I ran another "marathon" last night. moment-by-moment making tiny shifts to re-balance basic vital signs: temperature (too hot, too cold), heartbeat (too high, too low), movement (too little = total paralysis; too much = seizure), etc. harmonizing all together to simply survive, and always opening vaster and deeper spaces to thriving.

    with precious appreciation & gratitude,