Category Archives: Hope

Optimistic for a Game Change

I find myself stuck between hope and optimism. My need for either comes from a sense things can not continue indefinitely along my current path. Pain grows and periods of blindness increase in frequency. I know much of this is a by product of stress. Thankfully, I have some reasons for optimism and hope. When one can not win a game, and the playing of it gives only negative results, perhaps it is time to change the game. In my case, the potential changes give hope for short term betterment and optimism for long term changes.

For me, the difference in the two terms, hope and optimism, lays in one’s expectations. Optimism implies an expectation of a positive outcome or set of outcomes. Hope is the ability to conceive of and imagine a good outcome after we have set aside all of our expectations for good or ill.

Hope remains independent of our logic. At times, it may be buttressed by our optimism and logical expectations. Yet at other times, it may be the last defense standing alone in the path of the hurricane of our existence which seems to blow away all that upon which we have built our lives.

Some days, we must all hide behind our hope, taking shelter until the sun shines once more so that we may begin to build anew.

Hope for the short term:

MS certainly creates stress as my body shuts down at work and home. At work, I manage a team whose membership has changed suddenly. I have all new staff, and I have to hope they are as good and competent as they seem because our schedule remains unchanged. I have to hope I can move on from this job after I set it up to continue. I need to change this game because my ability to enjoy the process has left with the staff I picked and trained.

At home, I hope my oldest daughter learns to accept her limited diet and finds a way to thrive emotionally. Last week, she accused us of trying to kill her by not letting her eat (by mouth). I can only hope because right now, in the midst of it, I can not see a way out. Yet we will continue on as best we can, hoping for peace.

Optimism for the long term:

There was an article in Nature last week showing for the first time how the brain is connected to our immune system. It mapped out the blood brain barrier. While this is not in itself a cure for MS or Alzheimers, it does put the brain back in play as a normal vascular system where blockages can be seen and predicted. CCSVI was a procedure started by a vascular surgeon in Italy who believed his wife’s MS was a vascular problem. He put a stent in her brain to improve blood flow. Since then, thousands of MS patients have had the same procedure, despite not knowing if it solved a real problem in our brains. For some it helped, and other it did not. Studies seemed to show MS patients were no more likely to have a blockage than a healthy person. Now, with this study, we may better be able to look at the brain’s blood flow and understand the system. Suddenly, we may have changed the brain from a complex system to merely a complicated one. A procedure like CCSVI may be better targeted.
http://medicalxpress.com/news/2015-06-link-brain-immune.html

This discovery has the potential to be a game changer for our understanding of how the brain works.

On the home front, our game change is in name only. This week, we adopted K who has been with us for years. It may be in name only, but the feel good news comes at a most welcome time.

Our family officially grows to match what we have known and and lived for years.  We are now officially a nuclear family of 5.
Our family officially grows to match what we have known and and lived for years. We are now officially a nuclear family of 5.

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Imagination and Hope Forever Intertwined

First food at new house straight from A's hand in an effort to win Peppa's heart.
First food at new house straight from A’s hand in an effort to win Peppa’s heart.

Hope begins with a belief in an ever-changing world. It requires us to imagine a state of being other than we currently experience. Now some days, hope is a wish for things to stay the same, like the first time seeing a look of affection in a lover’s face. Some times hope is for a change in our existence, even if the chances of such a change happening is slight. I think of the lottery, aka, “the stupid person’s tax” as a prime example of such hopes. Some times our situations lead to hopes of both types simultaneously. Every time I refuse to wish away the pain of my MS, it is because of hope. I hope the feeling of pain means I might one day feel as much pleasure as my current pains. Of course, this hope is also a fear of change as my real fear is losing all sensation. Therefore, my refusal to wish away the pain is in part a hope for beneficial change and a fear of a change that would preclude the better alternative.

Still, all hope is rooted in a belief in the world’s change. I will always remember my two lunches five years ago with Michael, the homeless man who had no concept of what would make his life better. (Michael).  He remembered having a family, but both times did not even think of having them around again as something that would make his life better. He was not particularly unhappy as I would expect somebody without hope to be, but this is instructive too. Those who have truly lost hope can no longer imagine “better.” So long as one knows the opposite, despair, one knows what is missing. The truly hopeless lose the concept of change. For Michael, “the world is good because the word is good, and the word is good because God is good.” That mantra was his guiding philosophy as he lived on the street, and a concept of change was nowhere in it.

I think of this some days as I ponder the question of “acceptance.” Should I just accept the limitations my MS places on my life? So often, I read and hear of MS patients having to grieve for, but ultimately accept, their new limitations. I know the psych 101 answer always has acceptance as the last stage of a healthy grieving process, but I keep coming back to it as the warning sign above the gates of Hell in Virgil’s Divine Comedy, “Abandon all hope, ye who enter here.” For me, acceptance of “what is” means giving up hope for a better alternative than what I currently face.

Acceptance is forgetting the possible alternative experiences and no longer acting on their possibilities. Yes, often the efforts are a complete waste. They probably seem foolish risks to many as the outcomes are easily predicted. The costs of abandoning hope may be more subtle, but are they any less?

As parents, I often think hope is one of those things for which we are most responsible when it comes to teaching our children. My oldest daughter still hopes to do many of the things her friends find easy, like monkey bars or math or… These are things with which the smart bet would be she would probably struggle. Still, I look with pride every time I see her falling from the monkey bars or using a number line. When she came to us, we did not know if she could grow to be more than a blob, but now she is a nine-year-old girl nervously making her way through life as best she can.  If she tries and fails but continues to try, who is to say she will not  succeed in some of things she wants to do that seemed impossible.

For months, we knew our neighbor’s dog with which A had slept for the past 10 months would be leaving us. The anxiety attacks she has had lately have been escalating, and in truth, she had reason. Two colonoscopies/endoscopy procedures and a ton of laxative meds in the last couple of months to try to determine the source of and treat her slow motility is a lot to endure. Even before our neighbors dog went back to her owners, A began asking for a dog of her own, who would love her and could rely on her. Her hope was to have the best bond with a new dog. Of course, we let her pick the dog, so there was no shoebox of poo. In a moment of humor to me, she did bring up the story in conversation. Part one of her hope, to get a new dog, has been realized. Part 2, to be well bonded with the dog, is a work in progress.

It seems crazy to bring the canine census in our home back to three, but there is much we are willing to do to preserve the hope and mental well-being of family. I have no desire to see any of us retrace Virgil’s trip through the gate.

One birthday wish came true.  A got a new dog to sleep with her by night and train by day.
One birthday wish came true. A got a new dog to sleep with her by night and train by day.

 

As a side note for all those dealing with either their own disability or a family member’s disability, there is a new web site dedicated to promoting places with good access and services for the disabled.  http://www.disabledonthego.com/ 

It will only be as good and useful as we make it, but how many of us dealing with disability wish we knew ahead of time about possible destinations?

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