Attention

At Asghar’s urging, I’ve been thinking a lot about attention. Specifically, where I am putting my mental energy? Asghar uses grander language than I do, but at the core I think these are the questions he’s been urging me to consider are:

• What roadblocks have I allowed to persist in my thinking?
• What fears are still holding me back?
•  What changes and mindsets will help me succeed and move forward?

I still pay attention, subconsciously and otherwise, on what is wrong with me. Over the years, I’ve focused on the parts of me that aren’t working, that are in pain, that are not performing as they used to. I celebrate when I stand easily or walk tall, but my mind keeps cataloging what is going wrong.

Disease can be relentless. Pain and physical challenges have a way of inserting themselves into everyday thoughts. Healthy, functioning bodies don’t keep tabs on the minutia of physical living. The cost of allowing the thoughts and mindset of “disease” has a real cost - before you know it, your subconscious is full of complaints, fears and limitations. That list of worries keeps growing and is reinforced by every bad day or temporary setback.

I think about fears that I once had. I couldn’t roll on my stomach; I panicked when my legs felt weak. I didn’t trust myself to work. I have a lot more confidence in what I can do now, but I realize I am still fighting fears.

What if I can’t keep improving?

What if I have an exacerbation?

I need to let go of these questions. Change them to the positive. I need to pay attention to what is right and stop obsessing over what is wrong. That pattern of thinking only holds me back. I have to let go of the “list” to move forward. I guess I need to start thinking like a healthy person. That is the only way to get to actually be a healthy person.

The fact is, some of these symptoms will be here regardless of how much attention and energy I give them. Thinking, obsessing and feeling afraid won’t ever improve them. Exercise, meditation and focused drive to challenge my disease have a much higher chance of working. I’ve got to give myself the best chances for actual improvement.

I have to shift my attention and allow my brain the room it needs to give healing a chance. That’s easier said than done. That “list” in my brain is long and persistent, maybe there is even a certain safety in the list – it gives you reasons and excuses to avoid the real challenge of battling a disease.  It understands. 

That’s the danger, you see.

So I need to shift my focus and move forward. Change my attention and the dialogue in my head.  I know I can do it, but it is a tricky business. Step by step I go….forward.

Fighting a Giant

The funny thing, as Asghar pointed out to me today, is fighting a disease is not exactly a “fair fight” The disease is like a giant - it’s big, ugly and relentless. And I, in battling the giant, am armed with what amounts to a tiny needle rather than a sword.

This isn’t a hopeless situation, however.

If I keep at it and needle this giant I can wear him down. Although it may take awhile to see the giant fall, it isn’t impossible.

I like the visual, imagining just what an exceptional pain in the ass I am to this stubborn giant known as MS. I am beating it down. I am wearing it out. I imagine it annoyed, beleaguered, and despondent.

Because, hey, that is often how it makes me feel – seems fair, doesn’t it?

This summer, the giant has thrown some challenges my way. But I have my needle, it’s sharp, and I am poised to needle my way through. 

Growing Bolder

This man has a wonderful attitude about fitness, aging and staying young!

http://growingbolder.com/media/health/aging/never-leave-the-playground-793777.html

Off the Grid

.5 miles up the trail with Asghar and my husband John.

I went hiking today! 

Sure I rolled a bit to get there, but I officially walked on an unpaved trail in what can only be called nature!

Asghar and my husband John got me half a mile up the Claremont Hills Wilderness Park trail. I saw the view of the valley and enjoyed the sense of actually being off the pavement. It was psychologically freeing to be in a new place, outside, enjoying the natural world.

Enjoying the sunshine! (With sunblock of course!)

It has been a long time since I have been anywhere near a mountain path, and I realize how disconnected you can get from the natural world when you only stay to the "accessible" areas in life.

Today's hike proved I can try physical challenges and expect to go places and try things I haven't tried before. Today was challenging: the heat, my stamina and balance and years of being sedentary continue to make my progress slow and uneven - but I'd rather be slowly and unevenly walking in the mountains than slowly and unevenly getting around the house!

What an improvement!

I also started swimming and working out in the pool (which is a lot cooler!) - it is making a difference after just a few sessions!

I used to dread the summer. The heat always made me feel worse and I spent too much time indoors. I felt stuck. It is exciting to see how this summer will shape up, how I will shape up - outside and "off the grid," finding ways to go new places and experience new things! 

Next time I'm up there, I plan on going a little farther and doing more on my own!

Off Limits

I realize that over the years I have defined certain places as "off limits." One of the fastest ways to get on my "off limits" list was a staircase. Stairs were an obstacle I didn't tackle and they made lots of places I wanted to go seem impossibly difficult. Before I began training, that list was getting longer. My mental outlook was to define what I couldn't do and avoid it.

Well, today I tackled the stairs! I made it up a flight of stairs at the Fitness Loft! I did it!

To say it felt good is an understatement. It also makes me realize that I don't have to see places as "off limits." They can be a challenge, but they do not have to be a barrier. Viewing that staircase as "off limits" rather than a challenge was part of what kept me from climbing it in the first place.

Asghar is good for me (and people with a similar mindset) because he doesn't do "off limits" thinking. He looks at what you want to do and figures out how to achieve it. He prepared me physically and mentally to tackle the staircase (and then he waits until you think it is your idea to tackle the challenge he has been preparing you for all along - which is a nice little boost to your self-esteem.)

"Off limits" becomes limitless as obstacles become challenges to figure out and prepare for.  Although stairs may be a simple task for most people, I think many of us have decided there are things that are "off limits" physically.  Challenging that assumption feels so good.

At the top!

I am sharing the photo today of me at the top of the stairs. That second floor is definitely not off limits!

The Lonely Wheelchair

The lonely wheelchair.

It has become a tradition to walk a bit after dinner. I used to be nervous being "away" from my wheelchair - I worried that I'd get tired or need to sit down. My husband, John, followed me with the chair, ready to scoop me up when I ran out of steam. Lately, I haven't worried about that as much. I can walk with John, instead of needing him to follow me with the chair. I know I can confidently walk a certain distance without needing to sit down. I was on such a walk when I looked back and saw that chair - empty - and it just made me smile. I didn't need it and it wasn't "waiting" for me - I'd stood up and walked off and there it sat, without me.

I snapped a picture. Anyone that spends time in a wheelchair will appreciate just how fun it is to see said wheelchair from a distance.

Asghar has been working with me on the treadmill. Something I would have deemed impossible a few months ago. The work is already paying off. Asghar's intuition about what I am ready to tackle physically (and psychologically) always pushes me in the right direction. I am often struck by my progress these last few weeks. I plan on walking farther and farther away from the chair...and that feels good!

Americans burn about 50,000 fewer calories per year than they did 50 years ago, and the portion of jobs that require physical activity has declined by about 30% since 1960.

http://mashable.com/2012/05/17/desk-job-death/

Straight Lines

Success doesn't seem to work in a perfectly straight line. This is pretty unfortunate when you think about it; it would make goals so much more happily achievable if you could just count on steady progress at a predictable clip. Reality is much less glamorous than those fitness shows on television.

There was recently a great article in the Claremont Courier about Asghar and I. I was happy to boast of my success and highlight all the cool stuff I could do. I was proud of the article and my progress and only slightly horrified by having my picture in the paper in gym clothes. I wanted to amble through the Village with my head up high, which I did until my progress hit a few snags.

I'll say it, some days are a lot easier than others.

I woke up feeling like a big, stiff, unflexible hunk of cement. That plucky girl smiling in the newspaper and pumping iron had a few moments this week that were decidedly "unquotable" for a community newspaper. (Let me also add I only have a vague notion of what pumping iron actually means, but it sounds cool.)  I'd had a tough day Monday and felt like some of my previous progress had slipped away somehow. I was frustrated I wasn't improving every day. I was teary, stiff, and basically mad at myself for feeling like the fitness underachiever this week.

Of course, once I started moving, stuff got easier. I also remembered that a bad day today was what I'd call a good day three months ago.  I had to look at the big picture rather than focusing on every little ache, pain or stumble.

But then that is sort of true for anything in life...isn't it?

So I am going to focus on that smiling lady in the newspaper and remind myself of the progress I am making. Some days, it seems, are easier than others - but success is getting through both!

Roll Over!

Proof! 4/18/12 - in a previously impossible position!

I haven’t been able to lay on my stomach for years. It’s funny to say that. Weird. You see babies, sunbathers, people sleeping peacefully on their stomachs all the time. It is physiologically not a big deal. I mean, there isn’t an Olympic category for rolling over.

It is a big deal to me. I haven’t been in that position for so long that it has grown into a real fear. It is a very hard position for me to get in to.  Asghar has an acronym about FEAR - False Evidence Appears Real - and this was one of those situations. I know intellectually that my fear of being in that position is a little hysterical/irrational - but man, it sure feels real! 

What if I can’t do it? What if I can’t get back up? What if I bump/hurt my knee (I’m jumpy about my knees)? What if it hurts? Lots of what ifs! The MS symptoms had created a perfect roadblock and my mind had filled in the blanks about all the reasons such a position was a really, really bad idea.

So - years go by and I haven’t even tried to roll over or lay flat on the floor on my stomach. Of course there are stretches and tricky exercises you can do if you get there - but I wasn’t signing up for any of it. My body had a quirky refusal to get in that position and I wasn’t arguing with it.

So today, when Asghar told me I was rolling over - I was nervous. I knew he’d have some way to do it, and he wouldn’t let anything go wrong, but I was skeptical that I was physically ready and it was the very last thing I wanted to do! I’d hoped against hope that Asghar would forget to ever ask me to lay on my stomach. He’s creative, surely we can find some other exercise! The thing with Asghar is he has an uncanny intuition into seeing the parts of your body you aren’t using or movements you aren't doing - I shouldn’t have been surprised when he good naturally zeroed in and set me up for a challenge. I'd have gladly signed up for 1000 reps with free weights instead of this. I'd actually rather have a root canal or sit through a Republican primary debate than do this...but I gave it a go.

I was a tough case, my mind wanted to give it a try but my limbs shrieked “hell no - you don’t do this!” I had to really mentally push as much as I did physically.

I managed it though! Briefly, inelegantly and clumsily I put myself in a position I hadn’t achieved in years. As weird as it felt, there was a sense to it. I achieved a long overdue stretch and I also achieved the knowledge that physical tasks I has viewed as “off-limits” were achievable.

I’m including a cheesy photo where I am looking altogether pleased with myself before I unceremoniously rolled back over on my side! Like I said, it wasn’t pretty! But it was cool to move in a direction I hadn’t been in for years and see I was still capable of something I had thought was lost.

One small roll for a girl, one giant leap for fitnesskind!

MS is BS!

I’ve been working out for nearly 2 months with Asghar and I’m beginning to gain a new mantra “MS is BS!” I’m ready to turn in my MS card, with all its trappings. I guess you can say that MS and I are, well, ready to “break-up.”

The cool thing is I’m getting faster than that stupid disease. I’m planning on walking away. It might limp along behind me, but I am pretty sure that sooner or later I will be faster than it is. I’m already stronger and it is just a matter of time before MS as I know it is safely in my rear view mirror. 

When you are diagnosed with a disease, it becomes a filter that you look through and react from. We do this often in American culture: multiple sclerosis, breast cancer, diabetes, the list is endless and each disease has a colorful ribbon and website and lots of information that envelopes you in the safety net of your diagnosis. “it’s ok,” these organizations ooze reassurance and wisdom, “we’re here for you.” Of course, when you read the fine print it often reads brought to you by Drug Company X.

Initially this seems ok. When I was diagnosed with MS at 29 I was scared, confused and hungry for answers. I also wanted to fix it! Of course, you learn fast that the problem isn’t fixable. Management seems to be the key word. Manage the disease, manage the pain and manage your medication.

“As you know, MS isn’t life threatening,” said my neurologist, “but it is progressive and it will impact your life.”

Great. Swell. I guess I’ll manage.

The cool thing with Asghar is he “manages” differently and he has made me look at what “managing” this disease really means. He manages expectations. He encourages you to have positive expectations and to visualize a better outcome. He helps you build the muscles and stamina so that the visualization isn’t just a pipe dream...it is something you can expect to happen.

I’ve walked farther, stretched and moved more than I would have believed possible a few months ago. But then, a few months ago I didn’t expect a different outcome. Management was chemical, not physical.

Drugs are a seductive answer to problems. Over the years I’ve taken enough muscle relaxers and other miscellaneous pills to stock a small pharmacy. As symptoms change, the answer is always “take more.” I’ve been taking more and honestly, the pills don’t improve the symptoms that much. Most of what I take simply masks the symptoms temporarily. What they do reliably is make me tired, groggy and depressed. Hey, no worries, they have drugs for that too!

It is ironic that my medical provider has spent in excess of half a million dollars in medication since I was diagnosed and yet asking for physical therapy nets you odd, exasperated looks from your doctor. They’ll sit someone in a wheelchair for 10 years but look askance when they ask about rehabilitative equipment.

The wheelchair I’ve been sitting in for years cost a lot more than a set of free weights and meditation is cheaper than Prozac - but somehow those cheaper, simpler solutions get lost in our system. And I lost sight of those simple things too.

Don’t wait for the doctor to get you moving. Just get moving! Tell her what you want. I told my doctor what I was doing, and she gave me her blessing to exercise - but she didn’t suggest it. She didn’t offer it as a solution and she always warned me to “save my energy.” What am I saving it for? I’m not earning interest here! I keep getting more and more tired.

Before I began working out, I felt stuck both physically and emotionally. Daily tasks were  feeling overwhelming. Getting a cup of coffee in the morning felt like a major event. I dreaded moving and fretted about being too weak or too stiff to get small things done. Let me tell you, this does nothing for your mood. It does nothing for your confidence. My world gets smaller and smaller and it is punctuated with fears, disappointments and frustrations. The MS was shaping me, my life and my expectations.

I may have MS, but I can shape it. I’m in charge. It is important to look at things as a challenge rather than an obstacle. It is important to see what you can do to handle the problem rather than ask for a medication to handle it for you.

Don’t get me wrong, I’m not against medical science. It is empowering to know what you have and how to deal with it. The thing is, though, that the drug companies sponsor a lot of these informational resources and websites, they give your doctor their stuff to help them talk to you and before you know it the conversation is about drugs...drugs...and more drugs. These drugs can, and do, help tremendously in certain situations. My point is that I had stopped being proactive, I was just taking the meds and waiting for relief. Relief that didn’t come.

I have had actual relief over the last few months and it didn’t come from a pill. As I move more, the pain I feel in my joints and muscles has improved. My confidence and mood have improved and that wasn’t because I upped my Prozac. There is a difference in my ability and strength and attitude that is amazing. There are no side effects to exercise and the benefit doesn’t wear off after a few hours either.

I’m moving more and have cut my medications dramatically and I haven’t felt this good in a long time. I’m done catering to this bull#@*! disease! MS is BS.

Rachel McDonnell

PS: Good website: http://msisbs.org/

Falling Down | Rachel McDonnell

There used to be a television commercial for a company called Life Alert in which an older woman was on the floor crying out, “I’ve fallen and I can’t get up!”  While this scenario isn’t actually funny it became fodder for comedy skits and, back then, I remember being with my teenage friends and mocking this ancient lady’s predicament. The commercial was campy and poorly done and the actual mechanics of getting up off the floor seemed pretty simple for someone not yet old enough to drink alcohol.

It isn’t so funny anymore. After living with multiple sclerosis for over 10 years - getting up off the floor can be very, very, very hard.

I’ve fallen many times over the last few years. I’ve called my husband at work and had him have to drive twenty miles to come help me up. If I hadn’t been able to reach the phone, I would have simply waited… and waited… and waited. My funny MS symptoms and being off balance and out of shape make it easy to fall and impossible to get up.

“I’ve fallen and I can’t get up,” isn’t funny. Being in your early 40s makes it seem even worse. At least the lady in the commercial had a good, long run before this indignity struck her. My family worried, I worried, and I figured it was probably time to see what these Life Alert systems cost.

Since beginning personal training with Asghar, he’s worked on two fronts with me. Targeting the muscles that are weak and exacerbate what is physically wrong is one front. He also has insight into the mental games that contribute to and distract from physical wellness. He has given me the tools to stop panicking and the strength to get myself up.

A few days ago, I slipped in the kitchen and landed on my butt. I was unhurt but feeling the familiar dread of being “stuck.” But, I knew I was physically stronger than I was a month ago. I also heard Oscar’s admonition that the “body follows the mind.” It was time for my head to start barking orders. I had the power to get up. I had nurtured the physical over the last month and it was time to have a little faith I could now manage something that used to be impossible. Asghar speaks in grander language than I do. He’d say I have the “inner power and to see the action in my mind and the true potential I have in myself.”

At that moment on the floor I did think of Asghar’s insight, but my self-talk was more along the lines of “get your fool ass up - you aren’t that wimpy!”

I am proud to say I did, in fact, get my fool ass up. I didn’t need an ambulance, a worried neighbor, or a Life Alert crew to do it. I visualized a plan I had confidence in and executed it. I felt the returning strength in my muscles and they ponied up the service I asked them to give me.

I felt so tricky, so flushed with my victory that I sent texts to Asghar, my husband John and everyone else I could think of. (I may have heard a distant “woohoo!” from Asghar as he read the text… Asghar isn’t exactly what you would call soft-spoken.) Being able to say, “I’ve fallen and I got right up” was such a milestone, such an accomplishment that it is difficult to describe the feeling. You need to have spent time waiting helplessly for assistance to arrive to really savor the sense of independence and freedom such a thing can provide.

Not everyone can relate to my situation, but many of us have something we feel physically “stuck” about – something we once did effortlessly that we can no longer do. Maybe it is lifting a child, playing eighteen holes of golf, playing basketball, walking distances, etc.

If you think differently about it, and believe differently about it, well, you never know what you are capable of.

“I’ve fallen and I got myself up!”

Head Up | Rachel McDonnell

I first met Asghar and Susanna when I was referred to them to do the website and signage for Asghar’s new fitness studio. As someone who has dealt with multiple sclerosis and primarily rolls around in a wheelchair, I’m not a frequent visitor to gyms of any kind. (Active avoidance may best describe my gym/exercise strategy) But, in I rolled to the Fitness Loft, ready to give this charming fitness studio my best “online” workout. If I wasn’t a fitness queen myself, I could certainly conjure and create an image of one for this business.

Asghar wasted no time turning the focus from the cyber-world to the physical He’s a gracious host who makes a mean cup of tea and makes you feel right at home. Before I know it, I’m eating a banana and talking about my MS. Warning: watch out when you snack at the Fitness Loft. Invariably, Asghar takes those happy, healthy calories back out of you in the form of exercise.

The physical world, what a body can do and feel and achieve, was something I largely ignored. From my point of view, my MS had chipped away at my ability. I went from a cane, to two canes, to a walker, to a lot of time in a wheelchair as MS claimed my balance, stamina and muscle control.

I made the comment I sort of lived from the “head up.” I had a certain flippant pride in saying it. My body may be out of control, but I was making the most of it - staying busy and intellectually engaged while ignoring the constant noise of my body.

What I didn’t quite expect was the sincere look of absolute sadness and horror my sarcasm yielded from Asghar. It took me back and made me start to think about the real meaning my attitude signaled to others (as well as myself).

I had accepted and acclimated to disintegration. I had fought my MS, sure. I had pushed and plodded and struggled for over 10 years. But I think I always expected that MS would win. I wanted a strategy for keeping what ground I could, but didn’t really think about an offensive strategy. I was too....tired...too...disabled...too...deep in disease to expect much. My neurologist had once said “MS won’t kill you, but it is a progressive disease.”

And progressive it was; sapping my energy, my ability and progressively making my world smaller and smaller. My physical body had become a series of setbacks. Falls, a broken nose, being stuck, being in pain, being inexorably more limited by the disease.

Asghar didn’t buy my “head’s up” philosophy. As a fitness trainer, this made sense. His business was the mind and body working together and creating a whole. But I wasn’t someone who needed to simply get in shape or lose weight, I was someone who had a hard time getting out of a chair.  I was someone stuck in a body that came with disappointment, pain, and a large cache of drugs just to make it through the day.

When Asghar said “he didn’t see disability, he sees ability,” I was naturally skeptical, but I also realized I hadn’t taken inventory of my actual ability in a long time. It felt good to look at what I had rather than focus on what I’d lost.

I’ll write more about what I’m learning. I’m adding to my list of “abilities” all the time. For someone who hates (and doesn’t really get) sports analogies - I’m on offense. I am punching and kicking (well, sort of kicking) the “dis” ability out of my way. I can improve. I am improving. I didn’t know I could until I tried.

I thought about including a photo, but the best way to get this started is to take a picture of my feet. Long ignored, frequently cursed and the starting point of my MS symptoms. I plan on becoming reacquainted with these old friends - and definitely will be asking more of them!