From Regimen to Discipline – Journeying to Acceptance (rewrite March 19, 2017)

Sometimes folks suggest ‘acceptance’ is equivalent to giving up. For me, it is living in reality as opposed to fighting it, denying it, or however else I might struggle with it.

I used to spend lots of time visiting doctors to ‘fix’ my condition. If a doctor asserted there was no ‘fix’, I interpreted this to mean they, in particular, could not ‘fix’ me.  It took a year or two for me to realize every doctor I saw had essentially the same answer: There is no fix for my body. Today I know this is true — there is no ‘fix’ for my body, today.

When I could really hear the words, “there is no fix”, I came to a new level of acceptance. I’ve not given up. In fact, medical innovations happen all the time. I still stay in the loop so I can be aware of anything which might improve my situation.  But I am no longer spend time looking for the one doctor who can ‘fix’ me.

Acceptance also includes being okay with my current reality. It is one thing to realize and own the idea ‘there is no fix’, it is another to be okay with it. Still, it’s not the same as ‘giving up’. It doesn’t mean I don’t plan. It doesn’t mean I don’t take responsibility for my actions. It doesn’t mean I use my condition as an excuse or a crutch. It doesn’t mean I don’t look for solutions or stay up-to-date with my care.

It means I acknowledge and am content with my body’s conditions and the limitations it places upon my life. That is my reality today.

Living in reality works better for me. There is less frustration and a greater ability to see options and assess them. Whenever I choose to do something, there are consequences – some may be positive, some may be negative, and some may not seem too significant. This is true for everyone, whether they are in pain, dealing with a chronic illness, disabled or not any of those things. Each choice we make has an impact on something.

Imagine if, on a whim, I decided to send astronauts into space. No NASA, no scientists, just me, all by myself.  Maybe I would go grab some dynamite, and a chair of some sort. I might think to get an oxygen tank. I mean, it’s just me, it’s not like I can afford a real rocket…and it’s on a whim, so I’m just going with whatever might work to get it done.

You can see where this is going…wish me luck finding a volunteer and God be with me if I decide to ride my contraption myself. But this is how I used to treat my body (sometimes still do). Then, when the outcome was horrible, I would be angry and resentful.

If I am living in any sort or reality about my condition, I can see impacts of my potential choices more clearly, before they happen. If I am not, I am probably pushing things too far on a regular basis. I can make more realistic choices which consider my body’s limitations as well. This includes the choice to say ‘no’.

Some folks argue this point. They say it is important to keep stretching. I agree with them. Stretching keeps the body limber, provides more flexibility.

There is a huge difference between stretching and running full speed into a brick wall thinking I can get through it. Reality of my situation (aka acceptance) helps me tell the difference. When I see folks running into brick walls, it reminds me how confusing this all was for me when my body began revolting and refusing to comply with my choices. When my body finally refused, and I was forced to rest, people would tell me I needed to “work harder” or “try more” or “not give up”.

Nice phrases of little meaning. Glittering generalities. What is worse, is I had doctor’s say these things — and I really wanted to please my doctors! So I would work harder. I worked hard enough to re-herniate my back — it is true. Exercising things too soon can cause real damage. Ignoring our body’s signals can cause real damage.

At first I wanted to blame folks for giving me bad information (I called it ‘lying to me’) – but in reality, I wanted that they said to be true. I wanted to believe if I only worked harder and pushed more my body would get better. So some folks might have suggested more realistic and balanced actions, but wanting my old body back, I filtered out the ‘reality’ and ‘balance’ and listened only to what I thought would ‘fix me’. I was willing to do whatever it took to be in less pain and more able-bodied again and I couldn’t hear or consider the idea that my body would never be the same, that I would have to adjust my life to meet its abilities.

In those days, I didn’t have acceptance, avoided reality and had no concept of ‘stretching’. I’m not alone. Many PWD’s are afraid if they don’t keep pounding at that brick wall their situation will deteriorate further.

Many in the health care field become frustrated by the myriad of people who simply don’t do the suggested exercises to recovery fully. So they are trained to push people, encourage them, motivate them. But saying these things to a desperate PWD can really exasperate the situation.

I somewhat feel anyone having a surgery or treatment to deal with a chronic condition should have to go to a 3rd party therapist to discuss their options and help them understand the treatment and the true expectations of recovery or benefit. When I am desperate for a solution, I don’t hear things right — I hear everything as if it leads to the solution, no matter the actual words or expressions of limitation.

A therapist who is not vested in getting paid for a surgical procedure, who doesn’t work in the surgeon’s office and who understands sometimes doctor’s put profit before necessity, might be a good source for such a discussion.

My family is not a good choice for me – they either think everything will get me better, or are exhausted by my thinking everything can make me better, or that my situation will always become worse.

Same with friends.

And I have found PWD’s are not always the best resources either. We all have scars from treatments that didn’t work, and many of us readily share our horror stories with each other.

It probably helps us work through our horrid events when we share them, but it’s not real helpful to the person seeking feedback. I try to remember what works for one person may not work for another. If I have a horror story, I try to remember it might not be everyone’s situation, and to share it objectively — providing tips which will help the person decide if their situation is similar enough to mine to consider my input.

Apologies, we went on a detour with all of this, but it’s a bit related. Overly optimistic thinking something will ‘fix’ us or our fixation on treatments that have gone awry, even horribly awry, are not real beneficial to living with any contentment. Therapists can be helpful in shedding these unrealistic perspectives, providing they, themselves, see us as whole and competent human beings capable of fulfilling lives (aka, they don’t pity us, they see our potential — not all do). But therapy can hardly assist if the most important keys, the desire to really put our scars behind us and the willingness to do the work required to leave them a bit further behind everyday, isn’t there.

I hope it’s clear what I mean by acceptance. Because what it means to me has quite a bit to do with my choice of discipline versus regimen. Before I became a PWD, I had both discipline and regimen in my life. I worked off a clock which told me what to do, when and how much I should get done over a period of time. I tried for quite a while to do this even after I had severe chronic pain, even when I no longer could. It didn’t work. I kept torturing my body on a regular basis.

Unfortunately, our world operates with quite a bit of regimen. I am granted leniency by certain institutions. They understand what I am able to do does not always line up with the hands of a clock. But other venues expect me to abide by their regimen, even going as far as to fine me if I fail to do so. They’re not mean, they are just not able to provide me any flexibility in this regard.

So I keep a calendar, but I limit the amount of ‘regimented’ items on it. This is frustrating for some folks. It can frustrate me too. When an opportunity to do something super cool arises, and my body can’t conform to the schedule, it’s a bummer. It’s like driving to your favorite vista point and finding a ton of construction vehicles and buildings being put up destroying the view. It’s heart-wrenching.

My life is not emotion free, it’s just not stuck in those emotions. I feel the ache inside when my body’s limitations inhibit my activities. I look to see if there is anyway I can make adjustments to participate, and if not, my best action is to politely decline the opportunity. If there are protests, I simply say I have a conflict. It’s not a lie, my body is often in conflict with things I would like to do on a regular basis.

Able-bodied people feel these sames aches inside. The working parent who cannot attend their child’s sporting event because they must work; the hard-working single parent who simply can’t afford to take a vacation; the Chicago Cubs fan who can’t get through the phone lines to purchase World Series tickets. We all know this feeling.

It took me time to see what regimen I could follow and which I could not. I began to look at when my mind and body were most up for things, what time of day, what day of the week? If I need to see a doctor (regimented activity), I try to put it at one of those times. The same was true for when my mind and body was not feeling well. I try to avoid scheduling anything significant during those times. There are plenty of rote, daily tasks I can do at those times, so don’t think I’m not doing anything (giggles), but I’m not doing time-sensitive things — that’s my discipline.

Making such decisions takes discipline. It is easy for me to waiver on my body’s ability to engage in regimen. Same is true with eating habits and exercise. I can do the exercise routine my physical therapist has provided, there is no regimen other than the number of sets to do a day. The discipline is getting all the sets in at some point during the day. But, nonetheless, even that daily regimen is not always achievable for me — some days my body is simply in revolt.

There’s no question putting things on a calendar at a set times is helpful in many areas, but my body just doesn’t work on that kind of a schedule. What works better for me now is to set up tasks. Daily tasks, one-off tasks, tasks I can do at anytime, tasks I need help from my aide with, tasks I need a handyman to do. I keep all kinds of lists of things to be done.

When I first started coming out of the fog about my situation and living some semblance of a life again, it became immediately apparent lots of things had fallen into disarray and needed to be addressed.  A friend suggested I list them out and categorize them as ‘what must be done now’, ‘what needs to be done soon’ and ‘what would be nice to get done’. It was super helpful to do that! Then I had to determine what I could do on the ‘what must be done now’ list and what I would need help with. Breaking it down in that way allowed me to get those things done. I find, sometimes, I need the three categories when life flies at me fast, the ‘musts’, the ‘soons’ and the ‘niceties’. They are helpful for digging out.

Ultimately, though, I can’t assign time-lines for when I will get anything done. The lists help prioritize me, focus me, so that I spend more time on the ‘musts’ and no time on the things I need someone else to do for me, outside of determining who can help and coordinating time they can come to do the work (like changing the battery on my weather station on the roof). The discipline is in chipping away at them.

I can’t complete my taxes in a day anymore. I can’t dig through receipts in a mad crunch on April 15th and get them done by midnight. I used to be able to, but not anymore. So I start them earlier and just chip away at them. I can get them done in time that way without harming my body or mentally exhausting myself.

Discipline says I keep working at things until they are complete; until I can check them off the list, but it does not set a schedule for when or how long I must work on them at one sitting. It also means I work on higher priority items more, but they are not all I do. My mind still needs breaks, relaxation and fun.

It means there are certain things I must do everyday (discipline), but not necessarily at a specific time each day (regimen).

It feels good for me to be doing things, even if I just do a little bit. Completing a task feels great!

On the downside, leaving regimen behind does mean I say “no” more. I had to come to terms with my love to be of service and the importance of saying “no” when saying “yes” might be more a reaction to denial than an ability to serve; a desire to make myself feel good at the potential expense of others, who could suffer if I cannot follow through on a commitment, especially if it is regimented.

It has been a real struggle to let most of the regimen in my life go, but it has had a huge payoff. I actually have more acceptance of my situation. It seems to be something I can live with, rather that something that is constantly intruding on my life and invading my sense of self.

I have found I can accomplish quite a bit. It might take longer than it used too, it might seem to take too long for some, but it is better than feeling as if I simply can’t do certain things because my personal (or others’) concept of timing doesn’t fit my condition.

Ultimately, it came down to this: Do I choose to be trapped by my and society’s determinations of what I can and cannot do based on my ability to conform to regimen (which I had come to expect of others as well), or would I rather find some acceptance about my inability to engage in regimen, and in doing so, become open to new ways of continuing my contribution to life?

Obviously, for me, the answer was I wanted to feel I was contributing to life — but as is often the case for me, answering the question was easier than the footwork required to make it happen. Discipline was the hero here as well. It takes discipline to be reject my first thoughts of why things won’t work a new way, or why I won’t like them or how frustrating they will be.

It takes discipline to get up every morning and be grateful for life no matter how bad my body feels.

It takes discipline to decide no matter what life throws at me, there is a way to get through it, even when it causes me emotional pain as well as physical.

It takes discipline to ask for help when I need it.

It takes discipline to trust.

It takes discipline to walk away from my old ways of doing things.

It takes discipline to leave those who would constantly bring me down, negate my accomplishments or otherwise weaken my resolve and ability to love myself as I am.

It takes discipline to love myself.

It takes discipline to forgive myself and others while maintaining boundaries that keep me mentally and emotionally sound.

It takes discipline to stay in the here-and-now instead of what was or the horror of what may come.

The list goes on. Many of the things on the list above did not come to me easily, some still require discipline to keep at bay. Over time, all have become easier, and some have even become a natural part of my life.  That is what discipline does. It can change us in deep and meaningful ways. But for it to do so, we must be open to using it to help us see our world in new ways; to help us change our thinking; to redirect our thoughts to a perspective that will benefit us more than those bringing us down, making us lethargic or even leading us to give up altogether.

The biggest changes from discipline came when I removed regimen from the equation. I give thanks for life first thing when I wake up every morning (discipline), but when I wake up varies (lack of regimen).

The second key was patience, which improved with acceptance and as I found myself more able to love myself as I am, with all my body’s intricacies. I knew many areas where I would benefit from changing my perspective. Had I tried to change all these areas at once, I’d have probably given up. Had I demanded I never fail in my feeling of gratitude or my willingness to look for a solution, I’d have given up too.

My first thoughts are not always positive or solution oriented. So one of the first areas I worked on was being okay with not being perfect in my thinking, in meeting deadlines, in being perfect all the time. I would say simple mantras, “I forgive myself, I know I am doing better than I was.” That was huge for me! I was making progress in my thinking and attitudes, but I wasn’t perfect (still ain’t! — grins).

I had other little sayings like, “This feeling will pass, I am okay and it is okay to have this feeling.” Simple things like that. Over time they seem to have helped me be more disciplined, open to new ideas, positive, accepting and productive in my life — and they are far less painful than what I used to do.

Mantras work for me, so does visual meditation — but they don’t work for everyone. So the key is to find what works for you. Likely, somewhere inside you is the answer. Look back on your life’s successes. Then, instead of looking at the physical actions you took, try to remember the mindset you had.  How did you overcome obstacles? What motivated you to keep going? Was there a point you thought it was impossible? What did you do that kept you going? Most of us have had such experiences and can draw on them.

A few folks, if they are perfectionists like I can be, may have a more difficult time with this. As perfectionists we often would rather quit than have a less than perfect outcome. Worse, we might even finish but negate the accomplishment because it doesn’t meet our outrageous standards. A friend told me once perfectionism is a way to avoid work and feel horrible about ourselves at the same time. If we’re honest this is pretty true, but knowing it didn’t change the tendency. But I was still able to find a few (a very few) examples of things in my life I had completed to my satisfaction. That was enough to help me start changing my expectations.

If all of this seems impossible, that’s okay. Sit with it a bit. Give yourself time to think about it, how it might work for you, how the process might look. I have faith in you because I stalled out several times and still have managed to sort out more things than I ever thought I could. Sometimes it was demoralizing. I hope my posts help you avoid such thoughts, but again, I got through those demoralizing times too. Slowly, over time, my life and my thoughts have become more hopeful, even though my condition continues to deteriorate.

Oh, did you see that? It’s that darn regimen again! Our expectations that we can change within a certain time frame, or that we have to change within a certain time frame. For me, progress began as I started to let the regimen go. It relieved a ton of pressure and freed me to focus on and do things at a pace that works for me and my body and still gets quite a bit more done than I ever imagined possible.

Since I believe this process works different for everyone, please share what has worked for you. Hearing more success stories about how folks have changed their perspectives and found greater harmony living with cpci keeps me going…

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