Knowing When You Can Fight, and When You Cannot

There comes a time--well, actually several times--in the life of a person with MS when he or she has to come out of a state of denial and realize that he or she is starting to get worse. I've had this disease for almost ten years, and I knew going into the whole ordeal that MS is a progressive disease. My physical abilities would degenerate over time, but the time would be a real variable depending on the effectiveness of my treatments and the fingerprint-unique course of my own disease. 

Every time this has happened it has been emotionally excruciating, although in some cases more so than others. The first step about seven years ago was to buy a cane. I didn't need it every day or all the time, so that adjustment was fairly easy. The hardest by far was when I realized I needed to start using a walker. It's hard to forget when that happened because it was about two months after my husband left for a deployment to Afghanistan in 2011. My walking ability deteriorated pretty rapidly during that time, which is probably due to subconscious stress from the deployment, although it's really hard to say for sure. Making matters worse was that my need for the walker was compounded by my "move" from the more common and easier-to-deal-with relapsing remitting form of MS (where you have occasional flares or relapses from which you recover) to the secondary progressive form (which is a very slow and constant downhill slide).

I did the best I could with the walker situation. I decided to take it to an auto and motorcycle detailing shop to get flames painted on it, and the St Louis Post-Dispatch did a neat story on the whole thing. I got better at getting it into and out of my car and really loved that I had a place to sit down and rest absolutely everywhere I went. At this point, we were living in Illinois and I was still able to maneuver around our house without any help based on the way the house and our furniture were laid out.

Then a few months before we left Illinois, I started experiencing something called drop foot, which is common in people with MS, stroke victims, and people with spinal cord injuries. I went to the VA for help after my physical therapist recommended I get fitted for an electrostimulator called a WalkAide. At the same time I got the WalkAide, I also started the process of requesting a motorized scooter through the VA. For whatever reason, getting the WalkAide and later the scooter weren't as emotionally difficult for me. Maybe because the benefits were so great and so immediate that I didn't have time to think anything was bad about either one. I could now walk without my foot dragging along the ground, and I could easily go with my family to the zoo or museums and attend conventions in large halls with ease.

What's interesting, as I go into this next transition in a moment, is that all of these devices had the same thing in common. Every single time I stepped "up" to the next assistive device, I cursed myself for not having gotten one sooner. I don't know if I was being stubborn, proud, in denial, or a bit of everything (the most likely). My life was invariably made MUCH easier by every single device, and I more or less got over the self-consciousness associated with being a young and healthy/fit-looking person using a cane/walker/scooter.

But this transition that's coming up shortly is going to be the hardest of them all. When we moved into our current house in Tucson, we knew there would be a possibility that we would have to make it at least partially accessible. I started using a walker inside the house instead of just a cane about three months after we moved in. Barring any major medical miracles, chances were good that I would continue to deteriorate at the same pace and need more than a walker inside the house to get around. That day came for me earlier this week, and it wasn't pretty.

It's hard to describe the feeling of sitting down and thinking, "You know, I just really don't want to walk anymore." Sounds insane, doesn't it? All things considered, I'm happy about the fact I can still move around on my feet in some capacity. For a long time I felt like I NEEDED to walk at least for a portion of the day because it would be good for me. Until it got harder. And harder. The cramps in my legs and glutes at night started getting worse, as did the pain in my back from trying so hard to move my legs. Imagine having 50-pound ankle weights strapped on to each of your legs and having to go through your entire day that way; that's as best as I can describe it. It was taking me minutes to get from one end of a three-bedroom house to the other instead of seconds; I can never make it to a ringing phone in time. I found myself having to rest more often after doing just one thing in the house instead of after three or four things. And it just hit me: I'm officially tired of walking.

To say this acknowledgement brings mixed emotions is an understatement. On one hand, I feel like a quitter. I'm supposed to be a fighter and I'm not supposed to give up, right? Who on Earth would willingly stop walking when they still have that ability, however limited it might be? I'll tell you: when the prospect of not having to walk [so much] anymore brings your soul a huge sense of relief. Every military officer reads Sun Tzu's Art of War at some point, and while I admit I had to look this quote up to get it right, I remember the general sense of it: "He who knows when he can fight and when he cannot, will be victorious." I've decided that by being tired of walking, I'm not stopping my fight. My fight has simply transformed from the physical AND the mental/emotional/spiritual to just the latter, and I'm learning to be okay with that.

So I'm working with the VA again to obtain a small/travel power wheelchair to use inside our house. This is by far the most complex transition to an assistive device I've had to deal with so far, and my husband and I have several things we have to figure out with our landlord to make this as seamless as possible. One good thing about my MS progression is that it's been slow, so we've had time to think about and research the things I'll need, like several threshold rubber ramps in different spots around the house. It's also a very tight fit in one doorway because part of the refrigerator blocks it. If the smallest power wheelchair they can give me won't clear it, we'll need to pay to get the doorway moved a few inches or widened. On a related note, I have to start taking showers in our guest bathroom because I can't get out of our old-school sunken shower anymore. That will involve buying what they call a sliding transition bench--along with moving my bath stuff and sharing (part-time) a bathroom that always smells like the pee of two little boys who use it. That being said, maybe now I won't dread taking showers because of the physical effort involved, and maybe I'll be able to cut down the time involved in simply bathing from one hour to something more reasonable.

This isn't something that will happen overnight due to the VA evaluation and approval process, so we have time to make the necessary changes and for both me and my husband to emotionally get used to this next stage in my MS progression. For now, I choose to focus on how AWESOME it will be to move around our house quickly and easily! There is so much that I have put off doing--much to the burden of my incredible husband--because it's just too hard or I'm too tired. Simple things like picking stuff up, or putting laundry away, or getting things for the boys will be SO much easier, and I can't tell you how much I'm looking forward to that. There will be some bumps and scratches, no doubt--and maybe even some bruised toes. But I have no reason to doubt that after I get this power wheelchair, I will once again wonder why I didn't get it sooner.