Categories
Life with multiple sclerosis

New Kitchen Appliances

Not my kitchen.
Image courtesy of geappliances.com

We had a small leak under the house that managed to spray a thin stream of water upward in just the right spot to soak a section of subfloor and buckle the overlying hardwood floor in our kitchen. This led to our kitchen floor being replaced, which meant that all the cabinets and appliances had to come out of the kitchen. That would have been bad enough, but since the majority of the bottom floor in our house is hardwood, nearly everything had to be moved out, including us, when they sanded and restained/finished all the hardwood for a nice uniform repair. The silver lining is, we got to make some changes to the kitchen, including improving accessibility. Among other things, these changes involved replacing our aging appliances and for the first time in our lives, we found ourselves researching and considering handicapped friendly appliance options.

Didn’t know there were such things? Don’t be ashamed. Until a month ago, neither did I. Many countries have laws and/or guidelines in place for something to be labled accessible. In the US, it’s the Americans With Disabilities Act, or ADA and apparently there are criteria that make appliances ADA compliant. Most of the criteria are things that I hadn’t considered and found myself saying things like, “Wow, that makes sense.” and, “Hmm, I never would have thought about that.” over and over when I looked up ADA compliant appliances.

I won’t try to copy verbatim the handicapped criteria or endorse any particular brand, since I’m too new at this to really have a valid opinion, but I will provide a link to the website that I found most useful when looking for what exactly makes an appliance handicapped accessible/ADA compliant.

(Full disclosure, none of my new appliances are this particular brand, but their site does a really good job explaining the criteria .)

https://www.geappliances.com/ge/ada-compliant/

I use a wheelchair full time and have significant arm and hand weakness. I’ve learned two things so far that are specific to my situation that I’ll pass on to anyone in a similar one. First, use the seatbelt, etc if your chair has one. An accessible oven/range minimizes any reaching you have to do, but there is still some bending and extending involved and being secured to your chair is super helpful, especially if you have balance issues. No, I haven’t fallen into the oven or burned myself yet and I don’t intend to either.

Second, consider your angles. My wheelchair elevates, so I can rise to the height needed so I don’t have to reach overhead and risk dropping things on myself. That may not be an option for you, but consider which angle you approach the stove, refrigerator, etc. For example, my strong side is my left, so I tend to angle that side into the appliance, rather than approach it head on, or from the right. There’s a little trial and error to get this right for the individual appliance or task.

I have always liked being in the kitchen, cooking and especially baking and, in all modesty, I was pretty good at it before multiple sclerosis started taking my abilities. I know my limitations and I grudgingly accept them, I guess, but that doesn’t mean I like them, or that I’m not constantly looking for ways around them. It’s nice that there are appliance options that make it easier to get around some of these limitations.

Categories
Background Life with multiple sclerosis

The Best Laid Plans

Photo from: https://www.southcom.mil/MEDIA/IMAGERY/igphoto/2001633599/

You may remember last August when I wrote a post about a multiple sclerosis lesson learned from an exercise with the 160th SOAR. Well, it turns out that there were at least two other lessons learned on a different night during that same multi-day exercise. In the interest of time, rather than rehashing all the links to the military specific terms, I’ll simply link back to the original post.

On this particular evening, my team, along with the others in the company would fast rope into a site on Santa Rosa Island, Florida. For those that don’t know, fast roping is where you lower a thick, polyester, rope from a hovering helicopter and slide down it like a fireman’s pole. Well, maybe not exactly like a fireman’s pole. The rope isn’t smooth and you pinch it between your feet rather than between your thighs, since the friction and resulting heat is better managed with the soles of your boots than with your crotch. I would think it would be obvious, but you also grab it tightly with your hands and that same friction and heat makes sturdy gloves an absolute necessity.

Photo from: https://www.marlowropes.com/product/marlow-fast-roping-gloves

Like all things that might get you broken, or worse, it is army doctrine to rehearse it before you do it live. For fast roping, this means 2 daylight and 2 night reheasals, each consisting of 1 iteration without equipment and 1 with. The plan was to hover and fast rope from about 10 feet, so that’s what we rehearshed.

I always wear gloves anyway and the oversized pair of thick leather ones over them made anything close to fine motor skills impossible. Besides that, they were a pain to strip off and stow quickly once I was on the ground, so I decided to do without them. My rationale was this; my regular working gloves had a nice thick palm of synthetic leather and it was only going to be a 10 foot slide, so the heat couldn’t possibly build up that much. I tested my theory twice during the rehearsals and though some heat got through, the thinner gloves seemed to work well. I congratulated myself on such a well thought out and tested plan and when it was time for the actual mission, I left the thick, clumsy gloves behind.

I was the fast rope master that night and when we got to our spot, the crew chief on the helicopter signalled me not to kick the rope out the door because something wasn’t right with our planned insertion point and we were heading to the alternate. When we were there, he gave me the go ahead to lower the rope out and start sending guys out. We were using a 60 foot rope and it seemed like there was a lot less of it on the white, gulf coast, sand below than there had been during rehearsals. No matter, I sent the guys, then grabbed the rope and went out last. Very quickly…..probably right after the 10 foot point of the slide, I realized we were a bit higher, (4 times higher as it turned out), and that the heat from sliding on the rope increased exponentially with each foot past 10 feet.

What I found out later was that the alternate insertion point was over loose sand rather than the paved intersection of the primary and the increase in height was to keep us all from getting completely engulfed by blowing sand. I didn’t know that then, but what I did discover quickly was that synthetic leather doesn’t protect like real leather, burned hands have less dexterity than those encumbered by thick, awkward gloves, and my thinner, cool guy, gloves were completely destroyed by the flaws in my best laid plan.

Multiple sclerosis, because of it’s inconsistent nature, defies even the most careful, (subjective…I know), plans too. The plans I made for an annoying limp didn’t work out for walking with a cane and likewise, the plans for life with a cane, or walker didn’t work out for a wheelchair. Like the example in my tale of woe above, the problems increase exponentially as the effects of MS get worse. Something as routine as going to the grocery store becomes multiple times more difficult to do with each new link in the worsening mobility chain. This is just one example. Others include getting dressed, taking a shower, making a meal, and on and on and on.

The other big lesson for those with MS is that I didn’t seek out the advice of more senior people. At the time of the incident above, I was considered a senior person (mostly by myself) and it was assumed that I knew what I was doing, so I didn’t ask and no one volunteered that I was about to make a really stupid mistake.

I’ve known I had MS for almost 8 years now. It’s progressed very quickly, but that’s still just a drop in the bucket for others out there and I should have asked them early on about my best laid plans. I’d like to think I know a lot about it, but there’s still so much to learn and sometimes I need other, wiser, people to tell me that I’m about to make a dumb mistake.

I hope I listen.

Categories
Life with multiple sclerosis

Friends And Enemies

“Pogo”, by Walt Kelly, 1971.

One of the worst mistakes you can make if you have MS, (so, of course, I make it a lot), is to compare your MS to someone else’s. Everybody’s experience is so different that sometimes I wonder if it’s even the same disease. Yes, I used “experience” deliberately, because I don’t just mean symptoms, or ability. I’m including how you’re perceived, treated, talked to, and so on.

I have an aggressive form of progressive multiple sclerosis, so it’s kind of hard to ever refer to myself as “fortunate”. In many ways, though, I suppose I am……….(far too lazy to search a thesaurus for an alternative word apparently)….so…..not unfortunate?

I don’t have an invisible illness, well not anymore and if I did, it wasn’t for long, because my time between a barely noticeable limp and a wheelchair was pretty short. It is very obvious that something is wrong with me, so I don’t get questioned for using a handicapped parking space, etc. Besides the handicapped placard, I have disabled veteran license plates, so usually, the only thing I find myself explaining is that I am not wounded, I just have a disabling disease.

I don’t really deal with questioning looks, or second guesses either; not the way other people with MS do and not from people that matter. That sounded harsh, but you know what I mean, right? Strangers may occasionaly look at me and wonder if I gave up too easily, or am not trying hard enough, but because of my background in Special Forces and the Rangers, family, friends, or aquaintances assume that I’m giving it my all. For the record, they’d be wrong sometimes, but still, they normally give me the benefit of the doubt. Really, the only person who second guesses me, or acts like I’m an inconvenience…….is…..me. I am my own worst enemy.

This past holiday season really drove the point home. At two Thanksgiving gatherings, family stepped in and made it possible for me to enter their homes in my wheelchair and be included. Later, right before Christmas, with the help of several friends, I got to go to a party that I seriously considered not going to because I was afraid of being a burden.

Am I a burden? In the sense that extra things had to be done to accomodate my disability…..yes, I suppose I am, but I’m starting to realize that I’m the only one who is afraid of being a burden, or inconvenience. At this point, anyone who didn’t want to be around me is long gone and I need to stop reflexively apologizing and show genuine gratitude for the people who want my company enough to go the extra mile to have it.

I don’t like being disabled by multiple sclerosis, but I am. I don’t like being treated like I’m disabled either. Maybe it’s just semantics, but my friends and family don’t. They somehow, accomodate my disabilities while treating me like……me. Or, to put it another way, they treat me like a loved one with a disability, but not like a disabled person. Hmm, I suppose I am fortunate after all.

I’m the one who treats me like I’m disabled and for some reason, the hardest one to convince to stop doing so.

I have met the enemy and he is me.