Tuesday, September 27, 2011

Guest Blogger- Kim

2009 166I’ll start by introducing myself, since I have been invited to be a guest blogger at EnjoyingtheRide.com. I am Kim, wife of Mitch, mother of Amy & Zach, a middle school counselor, and caregiver for my husband of 25 years (in no particular order). These various roles definitely conflict with one another from time to time.

For example, when we moved to southern Maine 11 years ago, I started in my position as a counselor at Cape Elizabeth Middle School. My daughter was a student at the same middle school at that time. Imagine for a moment what it may have been like for me as I simultaneously fulfilled the role of the mother and school counselor of an emotional teenage daughter. Can you envision any situations over a three year span where it may have been difficult to be both people? I probably averaged one situation a day, but thankfully the memories fade over time.

Two other roles I have that compete with each other, even more than being my daughter’s middle school counselor, are being both the primary caregiver and spouse for Mitch. We have been a couple for more than 31 years, and the role of spouse has been one of the most enjoyable and fulfilling experiences of my life. Being the caregiver for my husband, on the other hand, has been one of the most challenging. To be the one who has the sole responsibility of taking care of the maintenance of our home inside and out along with working a full-time job is difficult enough. Beyond this, I sometimes feel like I am on call 24 hours a day, whether it be to help dress my husband, prepare his meals, or to come when he calls my name. I worry about him falling or needing me while I am away. And I also feel guilty whenever I get angry, frustrated, or afraid with what I have to endure in my life, in our lives.

With this being said, many people have asked how I stay so positive, and continue to live life to its fullest. My list of “secrets” is short and much of it mirrors Mitch’s view of the world:

  • Live in the moment as much as possible, trying not to dwell on the past or worry about the future
  • Don’t get drawn into negativity that sometimes finds its way into your day
  • Surround yourself with good people - those who are honest, caring, hard-working & true friends
  • Find the positive in all situations, even if seems tiny & irrelevant
  • Don’t just complain about things; look for solutions whenever possible
  • Treat others the way you want to be treated
To help me fulfill my care-giving responsibilities, more importantly than any of my “secrets” listed above, I recognize how much joy I get from my other jobs: a middle school counselor, the mother of Amy & Zach, and most rewarding - the wife of Mitch.

Tuesday, September 20, 2011

My 10 Keys to Resilience

English: Resilience of nature Despite falling,...
Resilience of nature Despite falling, this tree has retained some attachment to the ground and is still flowering of new, smaller branches. (Photo credit: Wikipedia)
It has been observed by some readers that I possess a certain amount of resilience. In fact, I've been asked to share my secrets on resilience, so that others may benefit from what I know- so that they might experience the contentment, in the face of dire circumstances, that I apparently do. I suppose…

My initial reaction is to simply state that I have no responsibility for and no secret knowledge of this apparent resiliency. It's just there. I didn't do anything to acquire it. I've just always had it. It's programmed in my genetic code. I suppose my parents, or more generally my ancestors, gave it to me. End of story.

But perhaps, if I dig deeper, I can do better than that. First, though, some disclaimers:
  • I'm no expert on the subject. I'm just sharing my personal experiences. If they work for you, great. If they don't work for you, move on.
  • I don't have the mindset of a motivational speaker. It's not in my nature to be unconditionally positive and inspiring as a matter of course. This blog is about sharing the reality of my circumstances with my readers, and the truth is that I'm not always resilient. If I accept this assignment I reserve the right to express despair when I feel it, without being deemed hypocritical.
  • I don't believe that any and all situations can be overcome by the power of positive thinking. I'm staying above water now, using some of the techniques I'll describe below, but I don't know if I can keep it up indefinitely no matter the circumstances.
  • I have several advantages that lend themselves to living a contented life despite my challenges. In this post, though, I will avoid presenting reasons for my resilience that others may not be lucky enough to enjoy, such as favorable genetics, the good fortune of having chosen an amazing life partner, or an advantageous financial situation. I'll try to stick to the behaviors that most people could, at least to some extent, try to adopt if they are so inclined.
My 10 Keys to Resilience:

1. Don't ride emotional roller coasters, wringing your hands over situations which, in the end, can be dealt with. Also, don’t predicate your future happiness on favorable outcomes, such as one particular drug treatment or another. Maintain a level disposition.

2. I never become so attached to any of my interests that losing the ability to enjoy a particular activity is heartbreaking, and believe me, I've had some passionate interests that have disappeared. In my healthy past, I would identify myself as a golfer, a snowmobiler, or a professional businessperson, for example. I am no longer any of those people, but in retrospect, I never really was. Those were endeavors that I occupied myself with. They were not ME. By maintaining this perspective, as I continue to lose the ability to enjoy certain pursuits, I don’t feel that I have lost a part of myself.

3. Accept that life does not owe you anything, thereby not feeling cheated when things go poorly. We are fortunate simply to have been born at all. The odds were greatly against it. Every one of our ancestors, for time immemorial, had to live beyond adolescence, and had to successfully reproduce, before being eaten by sabertooth tigers, flattened by asteroids, or burned at the stake for believing in the wrong God. After being born, the rest is gravy.

4. Stay connected with other human beings, either remotely or face-to-face. Becoming lonely and isolated will only accelerate your decline. Nurture your relationships. Don’t crawl into a hole of self-pity and turn away the people that have been close to you. Some folks will deal with your changing situation well, and others won't. Embrace the ones who can adjust to your new reality, and discard the ones who cannot, with no hard feelings. It's their loss, after all.

5. Remain inquisitive. Read, watch movies and quality television (Mad Men yes, the new Charlie's Angels no), and surf the internet. Here are a couple of sites that I visit to keep my mind from turning to mush:

Ted
Big Think
Yale open courses

6. Venture forth. Take advantage of mobility aids; don't refuse them out of stubbornness or embarrassment. Publicly embrace your disability; don't be ashamed of it and don't succumb to it prematurely. Get out in the world; don't withdraw from it.

7. I adhere to these concepts...Learn from the past, but don't live in it. Plan for the future, but don't sit around waiting for it to arrive. Enjoy each day as if it could be your last. Embrace each day for the gift that it is. (Forgive me for the barrage of clich├ęs, but they are apt).

8. Have hope, but don't rely upon it. Do everything in your power to improve your situation while simultaneously preparing yourself for the possibility that you may have to endure your misfortune. These may seem like contradictory approaches at first glance, but they are actually complementary. I do it every day.

9. Find the humor in life. Allow yourself – even require yourself – to laugh and smile. The cause-and-effect relationship between happiness and laughter may not be what you think it is. Sometimes, laughter is not only the result of happiness but the source of it. Similarly, moderate your negativism. As with happiness, negativism is not always the result of bad things happening to you. It can also be the root of your unhappiness.

10. Give yourself a break. Don't try to do it all. When you get tired, rest. When you don't feel like going out, stay home. When you need help, ask for it. When you become sad, cry. When you want chocolate, eat it. Take these liberties with humility but without apology.

I hope this helps.

How do you remain resilient?
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Friday, September 16, 2011

What to do? What to do?

2009 418 Fenway 03I launched this blog over two years ago to help pass the time while engaged in a productive activity – advocating for the disabled community. So, have I done that? To a large extent, I think I have.

By disclosing my day-to-day challenges, and revealing my innermost fears and concerns, I've shed light on the kind of issues that many healthy folks are oblivious to. Perhaps I’ve helped some people to better connect with their disabled friends, neighbors, and loved ones. By sharing my general outlook on life and some of my coping mechanisms, I hope I've helped disabled folks in some small way as well.

OK, but enough tooting of my own horn. That is not the purpose of today's post.

I'm not a dedicated researcher. I no longer have the energy or the inclination to be the authority on emerging topics in the medical field. I suggest you go elsewhere for that information. I don't write elegant prose. If that's what floats your boat, I can recommend several other blogs authored by more skilled writers, and of course there are always the popular books and journals.

What I think I do a passable job of writing about are the following:
1. My personal story, which is fairly unique, and when conveyed with honesty can even be compelling at times.

2. My personal beliefs and opinions on selected subjects, which, when expressed clearly, might cause you to stop and think a little bit. I know I always enjoy reading a piece that prompts me to find my philosophical bearings.
I walk a fine line in my writing, describing my circumstances frankly so as to lend authenticity to my message. I do this, however, at considerable risk.  The last thing I want is for my portrayal to be misperceived as self pity.  It’s a fine line.

I try to post at least once a week. Today, it is been a week and a day, and I don't have anything written. So this may be as good a time as any to ask for suggestions from you, the readers.

What would you like to read more about here? Where would you like me to go with the blog? What types of posts have you enjoyed, and what types of posts could you do without? Feel free to leave your responses in the comments section or send me an e-mail at email@enjoyingtheride.com.

Thanks for taking a few minutes to help me overcome my blogger’s block. I need ideas!

Thursday, September 8, 2011

Moving (part 2 of 2)

E StreetThe problem wasn't finding a suitable neighborhood. The problem was finding a wheelchair accessible house or condo therein. Since all of our target neighborhoods were of the urban variety, the houses tended to be old, undersized, and, well, vertically oriented.

We listed our house in May, brimming with enthusiasm and a sense of adventure. By mid-July we were thoroughly disillusioned. We had grown weary of keeping the place "show ready." We were annoyed with having to repeatedly vacate our house on sometimes short notice, only to learn that the prospective buyers were not interested for any of a number of legitimate or sometimes utterly baffling reasons. We were sick and tired of searching online for a house that seemingly did not exist (with one exception). We halfheartedly dragged ourselves through houses that we considered long-shots at best. We decided to endure this process only until the end of July, and then we would resign ourselves to staying in our existing house, which was not a bad situation at all; it just could have been better.

In June, not long after we listed, Kim stumbled upon the only house we ever found which met our search criteria. When we did our walk-through, it was an obvious match. We didn't get our hopes up, however, as we needed to find a buyer for our house before we could even make an offer, and we hadn't had much action on that end at all. Our realtor, usually the eternal optimist, served up a dose of reality as well by predicting that the house we loved would not stay on the market for more than a few days. Luckily, she was wrong.

In late July, just as we were losing interest in this whole undertaking, a gentleman with MS and his wife found our house, and fell in love with it. They were looking for a suburban home that was handicapped accessible. Remarkably, nobody had yet scooped up our target home- thank you Great Recession! So, over a period of a few days we simultaneously negotiated sales and purchase contracts on both homes. It all came together, and on August 26 we closed on our old house at noon and on our new house at 1:30. We were officially homeless for 90 minutes.

It was particularly satisfying to sell our house to someone with a disability. We had put considerable effort into modifying the home to make it accessible for me, and it was comforting to know that those modifications would continue to serve the next family who lived there.

Not onlywas it heartwarming to welcome people whose lives would be improved into our former home, but it was also satisfying to, for once, financially benefit from being disabled. I believe that we sold that house only because it was handicapped accessible. If this had been a non-accessible house, it might still be sitting on the market, like most other houses that are for sale today.

Our new house is not truly handicapped accessible, yet. However, it has the basic layout that will allow for adaptations. Most of the doorways are 36 inches wide. There are no elevation changes inside the house. The master bedroom and bathroom are spacious. The living room, dining room, and kitchen are one open area. The hallway is wide. Nevertheless, I was still concerned that we had overlooked something. I feared that once I got into the house and spent a couple of days I would say, "Oh crap!"

But that hasn’t been the case at all. In fact, I estimate that 90% of the features of the house were more or less what I had expected. Of the 10% of the features which were a surprise, probably 8% of them were of the pleasant variety, and only 2% were of the unpleasant variety. With a grab bar here, a lowered countertop there, and a new roll-in shower, this house will be well-suited for a wheelchair user.

Here we sit in house number six. I don't know why we would ever move into another one, but we always say that. I’m not in the habit of contemplating the future anymore, though. I'm finding that life is best digested in bite-sized portions, one day at a time. When I find myself pondering long-term scenarios, it becomes too much to swallow.

How am I feeling today? Today, I just love my new house.

If you’re in the neighborhood, please stop in for a visit. Flowers and vegetables are nice housewarming gifts. Beer and wine are better ones.

2011 09 100
The view of Portland on Saturday, from the bridge which is a 5 minute walk from our house.