In my last post I wrote about how powerful our expectations are and that we all have expectations of everyone from ourselves, to others, to even God, Himself. In the next few posts I will personalize this truth by sharing some of my expectations that have caused me some frustration and have affected my relationships with others and with God.
First, my expectations of myself… I’ve always been quite an active person. So having a disease that increasingly limits my physical abilities has been a challenge. At first I expected to be able to maintain my previous levels of involvement in our busy social life, church meetings and school activities. This resulted in me exhausting not only myself but also many of those around me, especially my wife. This finally drove home to me the fact that my expectations of myself and Nicky had been unrealistic.
After many efforts to carry on keeping life as ‘normal’ as possible, Nicky and I decided to stay in on weeknights and to limit ourselves to only one social engagement per weekend, preferably during the day. Late nights are not very kind to my body, especially when we need to be up at 6:00 a.m. for school during the week.
We’ve also had to make some difficult choices regarding our involvement in church activities. After consulting with the leadership of the church, we stepped down from leading our homecell group on Tuesday evenings and now only attend homecell meetings if we or our neighbours are hosting the meeting. In addition, we’ve had to choose to skip most of the Sunday evening prayer meetings, not because they’re not vitally important, but because it makes for a very long day at the beginning of the week.
Finally, I’ve also had to shift my expectations of my body. The progressive nature of this disease means that things I used to be able to do easily are now much more difficult if not impossible to do. This translates into having to constantly having to shift my expectations of my body. To further complicate matters, my physical strength also varies with my degree of tiredness, the time of day and my ability to take in enough fluids.
Shifting my expectations of myself and my body has helped to reduce my level of frustration at the things I can no longer do, and has helped me in my efforts to remain focused on the things I can still do. In my next post I will explore my expectations of others and how they have affected my relationships with them.
13 September 2009
23 August 2009
THE EMOTIONAL ASPECT – No. 8
I wrote some time ago about preferences and how as I have become more dependent upon others for basic functions, I have, out of necessity, relinquished control over those areas. I also wrote that a vast majority of the people that I have encountered in similar circumstances to my own display a remarkable degree of peace. I believe one of the keys to this is the ability to release the preferences that are actually not very important.
In this post I want to write about something else that plays a huge role in determining our level of inner peace and contentment. It governs, to a large extent, the quality of our relationships. And it’s not something about which we often think or of which we are even consciously aware. It is an expectation. More accurately, it is the numerous sets of expectations we have of everyone from ourselves to other drivers on the road to even God, Himself. An expectation is what we anticipate that we should observe or experience in a specific situation at a specific time.
Let me prove to you how powerful our expectations are. All is well as long as our expectations are being met. Now, think of the last time you were really proud of or impressed with someone. Chances are that it was because they exceeded your expectations in some way. On the contrary, think of the last time you were really disappointed by or frustrated with someone. It may have been something they said or did that upset you, or maybe they were just in the wrong place at the wrong time and bore the brunt of the bad day you were having! In any case, I can virtually guarantee that behind the emotions were one or more unmet expectations.
So what actually happens when our expectations are not met? We become discontent, and relationships break down. Several years ago, a good friend and mentor warned me against the downward spiral of “Dis’s”… Unmet expectations lead to Disappointment. Many Disappointments lead to Discouragement. And continued Discouragement leads to Disillusionment.
How do we avoid this destructive cycle? The key is in how we manage our expectations. As soon as we begin to feel frustration, we must stop and identify which of our expectations has not been met. Then we need to ask ourselves some probing questions… Are my expectations realistic? Does the other party know that this is what I expect of them? (If I haven’t clearly and specifically communicated my expectations, how can I expect others to meet them?)
Unrealistic expectations may be too high or to low. If they are too high, they will never be met and will result in constant frustration. If they are too low, we end up always anticipating the worst, becoming pessimistic and cynical. I have to be especially careful to make sure my expectations of myself and of others are realistic. In my next post I’ll write more specifically about how I’ve had to manage my expectations.
In this post I want to write about something else that plays a huge role in determining our level of inner peace and contentment. It governs, to a large extent, the quality of our relationships. And it’s not something about which we often think or of which we are even consciously aware. It is an expectation. More accurately, it is the numerous sets of expectations we have of everyone from ourselves to other drivers on the road to even God, Himself. An expectation is what we anticipate that we should observe or experience in a specific situation at a specific time.
Let me prove to you how powerful our expectations are. All is well as long as our expectations are being met. Now, think of the last time you were really proud of or impressed with someone. Chances are that it was because they exceeded your expectations in some way. On the contrary, think of the last time you were really disappointed by or frustrated with someone. It may have been something they said or did that upset you, or maybe they were just in the wrong place at the wrong time and bore the brunt of the bad day you were having! In any case, I can virtually guarantee that behind the emotions were one or more unmet expectations.
So what actually happens when our expectations are not met? We become discontent, and relationships break down. Several years ago, a good friend and mentor warned me against the downward spiral of “Dis’s”… Unmet expectations lead to Disappointment. Many Disappointments lead to Discouragement. And continued Discouragement leads to Disillusionment.
How do we avoid this destructive cycle? The key is in how we manage our expectations. As soon as we begin to feel frustration, we must stop and identify which of our expectations has not been met. Then we need to ask ourselves some probing questions… Are my expectations realistic? Does the other party know that this is what I expect of them? (If I haven’t clearly and specifically communicated my expectations, how can I expect others to meet them?)
Unrealistic expectations may be too high or to low. If they are too high, they will never be met and will result in constant frustration. If they are too low, we end up always anticipating the worst, becoming pessimistic and cynical. I have to be especially careful to make sure my expectations of myself and of others are realistic. In my next post I’ll write more specifically about how I’ve had to manage my expectations.
14 July 2009
THE EMOTIONAL ASPECT – No. 7
Previously, I posted an excerpt from a recent study sent to me by someone I know who was a participant in this study. It explained the effect that this disease can have on a certain area of the brain resulting in uncontrollable, and often inappropriate, crying and/or laughter. As I’ve written before, this disease affects different people in different ways, and this particular symptom is no exception. You can see from the findings of the study that individuals’ experiences vary greatly. In this post I’d like to describe my experience of this symptom.
My experience began long before I was diagnosed with isolated incidents of uncontrollable and at times inappropriate laughter. Since my diagnosis these incidents have become more frequent and have included crying as well. I’m especially prone to these symptoms when I am tired or under stress.
It’s hard to predict what will set me off, but a few patterns have emerged. Strong emotions in others often elicit an emotional response in me, but sometimes an inappropriate one. For example, not being able to stop smiling at a friend’s father’s funeral, or laughing at my wife when she is angry. This is often very embarrassing for me and easily misunderstood by others.
Another highly frustrating trend is for me to cry or laugh when I am angry. Some folks who know me may be surprised by this, since I very seldom get angry. But it does happen, and when it does, it is usually accompanied by one or both of these responses. Crying when angry is frustrating enough, but laughing is maddening. Imagine… You’re angry; You start to laugh; The angrier you get, the more you laugh; The more you laugh, the angrier you get that you can’t stop laughing; which makes you laugh even more! Eventually, it’s easier to give up on being angry and enjoy a good laugh, at which point you start to cry!
Basically, when it comes to laughing and crying, I can do either at the drop of a hat. Just thinking of something funny, let alone telling a joke, is enough to get me giggling. And I can sob uncontrollably at a sad story (The Shack really got me going), during a church service, listening to music, and yes, at the movies (even during Terminator)!
The study also mentioned possible outbursts of anger and frustration as a symptom. I can’t say I’ve experienced much of this, but I can say that a level of frustration and even anger is a natural, if not unavoidable, result of living with this disease. If it weren’t for the peace that comes from an intimate relationship with God, that frustration would potentially be overwhelming for me to deal with.
My experience began long before I was diagnosed with isolated incidents of uncontrollable and at times inappropriate laughter. Since my diagnosis these incidents have become more frequent and have included crying as well. I’m especially prone to these symptoms when I am tired or under stress.
It’s hard to predict what will set me off, but a few patterns have emerged. Strong emotions in others often elicit an emotional response in me, but sometimes an inappropriate one. For example, not being able to stop smiling at a friend’s father’s funeral, or laughing at my wife when she is angry. This is often very embarrassing for me and easily misunderstood by others.
Another highly frustrating trend is for me to cry or laugh when I am angry. Some folks who know me may be surprised by this, since I very seldom get angry. But it does happen, and when it does, it is usually accompanied by one or both of these responses. Crying when angry is frustrating enough, but laughing is maddening. Imagine… You’re angry; You start to laugh; The angrier you get, the more you laugh; The more you laugh, the angrier you get that you can’t stop laughing; which makes you laugh even more! Eventually, it’s easier to give up on being angry and enjoy a good laugh, at which point you start to cry!
Basically, when it comes to laughing and crying, I can do either at the drop of a hat. Just thinking of something funny, let alone telling a joke, is enough to get me giggling. And I can sob uncontrollably at a sad story (The Shack really got me going), during a church service, listening to music, and yes, at the movies (even during Terminator)!
The study also mentioned possible outbursts of anger and frustration as a symptom. I can’t say I’ve experienced much of this, but I can say that a level of frustration and even anger is a natural, if not unavoidable, result of living with this disease. If it weren’t for the peace that comes from an intimate relationship with God, that frustration would potentially be overwhelming for me to deal with.
06 July 2009
THE EMOTIONAL ASPECT – No. 6
I wrote early on that one of the symptoms of this disease can be an effect on a certain area of the brain which results in uncontrollable, and often inappropriate, crying and/or laughter. I want to include here an excerpt from a recent study sent to me by someone I know who was a participant in this study. I believe it helps explain the cause of this behaviour and gives some insight into its effect on people living with this disease.
This study was carried out in partnership with Avanir Pharmaceuticals, who are developing a new product to help treat the symptoms of Pseudobulbar Affect (PBA), which cases uncontrollable outbursts of emotion in people with ALS, MS, and other neurological conditions.
Some of the key findings:
We also received a number of responses in the open text section of the survey. These were very useful and enlightening as they gave a richer sense of patients' experiences with their emotional outbursts:
Paul Wicks, PhD
30 June 2009
THE PHYSICAL ASPECT – No. 6
I’ve often been asked if I have any pain. The disease itself doesn’t cause any pain directly, but there are a few indirect ways that it does produce some discomfort. Only the motor neurons are affected, so although I can’t move like I used to, I can still feel everything as normal.
Muscle Cramps. I seem to be getting more of these since my diagnosis. They aren’t too intense and don’t last long, but happen quite frequently. I’ve discovered some supplements for muscle cramps that do help, so the cramps have become more of an inconvenience than a major ‘pain in the neck.’
Falling. As the saying goes, “Falling doesn’t hurt—it’s the landing that’s so painful!” Now that I’m no longer walking, I don’t fall anymore. But while I could still get around, falling was an ever-increasing risk. Along with muscle weakness came a corresponding lack of balance that led to quite a few falls. Add to that weakness in my arms that resulted in an inability to catch myself or break my fall, and you a recipe for lots of bruises and, on one occasion, five stitches in my forehead!
Pressure sores. Otherwise known as bedsores, they are the result of a lack of blood circulation caused by one’s weight on a certain area for a long time. Actively mobile people don’t get them because they are constantly moving or shifting their weight. Immobile people get them because they are unable to move around or shift their weight. I’ve only had one small one on my heel. That was a wake-up call for us that we needed to become proactive in preventing others from forming. I now have a daily massage to promote circulation and am careful to stand up every two hours or so.
So, you see, I have had some pain, but nothing serious by any means.
Muscle Cramps. I seem to be getting more of these since my diagnosis. They aren’t too intense and don’t last long, but happen quite frequently. I’ve discovered some supplements for muscle cramps that do help, so the cramps have become more of an inconvenience than a major ‘pain in the neck.’
Falling. As the saying goes, “Falling doesn’t hurt—it’s the landing that’s so painful!” Now that I’m no longer walking, I don’t fall anymore. But while I could still get around, falling was an ever-increasing risk. Along with muscle weakness came a corresponding lack of balance that led to quite a few falls. Add to that weakness in my arms that resulted in an inability to catch myself or break my fall, and you a recipe for lots of bruises and, on one occasion, five stitches in my forehead!
Pressure sores. Otherwise known as bedsores, they are the result of a lack of blood circulation caused by one’s weight on a certain area for a long time. Actively mobile people don’t get them because they are constantly moving or shifting their weight. Immobile people get them because they are unable to move around or shift their weight. I’ve only had one small one on my heel. That was a wake-up call for us that we needed to become proactive in preventing others from forming. I now have a daily massage to promote circulation and am careful to stand up every two hours or so.
So, you see, I have had some pain, but nothing serious by any means.
15 June 2009
THE SPIRITUAL ASPECT – No. 10
A while ago I started documenting some of the incidents of how God has guided us, provided for us and spoken to us since my diagnosis in July 2006. I want to culminate this process by detailing what God has said about healing and why I am convinced that He is indeed going to heal me of ALS/MND. This journey begins all the way back on the day I was diagnosed and continues right up to last week.
In July of 2006, I heard for the first time from the neurologist that, after extensive tests, his diagnosis was MND/ALS. His exact words to me were, “Don’t delay, get your house in order.” Later that week, after obtaining a second opinion that confirmed the diagnosis, we met with the leaders of our church to fill them in. Obviously they were all shocked by the news, but one long-time and special friend was particularly devastated. He went straight home to cry out to God on my behalf. After a long time of prayer and weeping, he felt God lead him to a passage from the Bible in 2 Kings chapter 20…
1In those days Hezekiah was sick and near death. And Isaiah the prophet, the son of Amoz, went to him and said to him, “Thus says the LORD: ‘Set your house in order, for you shall die, and not live.’” 2Then he turned his face toward the wall, and prayed to the LORD, saying, 3“Remember now, O LORD, I pray, how I have walked before You in truth and with a loyal heart, and have done what was good in Your sight.” And Hezekiah wept bitterly. 4And it happened, before Isaiah had gone out into the middle court, that the word of the LORD came to him, saying, 5“Return and tell Hezekiah the leader of My people, ‘Thus says the LORD, the God of David your father: “I have heard your prayer, I have seen your tears; surely I will heal you. On the third day you shall go up to the house of the LORD.
I hadn’t told them what the neurologist had said, so the fact that God had led him to a passage using the same words was significant. This was the first indication from God of His intention to heal.
Nicky also felt that God has told her that He is going to heal me. In typical fashion, it came about in a conversation she had with God shortly after I was diagnosed. We were on our way for a week’s break in the Midlands. I was still able to drive and Nicky was praying (No, not because of my driving!). She looked over at my hands on the steering wheel and noticed again how the muscles had atrophied. She then began a new monologue that went something like this… “God, how can you watch this happening to Bob and not intervene? But then again, you had to watch much worse things happen to your Son without intervening.” At this point God interrupted with the words, “But I’m going to heal Bob.” From that day, she has never doubted that healing is coming (although she has at times wondered why it’s taking so long!).
I’ve already written about the fact that God has led three independent people at different times to read Psalm 118 to me. The key verses say…
17 I shall not die, but live, And declare the works of the LORD.
18 The LORD has chastened me severely, But He has not given me over to death.
I’ve also written about the special events that have left me even more convinced that the healing will happen. Following is a summary of what I’ve come away with from those experiences …
Finally, and most recently, God has confirmed His intentions once again last week. After having two difficult weeks health-wise, including spending my first ever night in a hospital, I was feeling a bit low. Early last week I found that my faith for healing was beginning to waver. By Wednesday I was asking God to help me regain the strong level of faith for healing that I once had. Then on Friday two independent people made a point of coming to me individually and telling me how certain they each were that God would heal me of this disease. Message received!
I shall not die, but live, and declare the works of the Lord!
10 June 2009
THE RELATIONAL ASPECT – No. 06
I’m going to continue down the same detour I’ve been following and honour two more people… Kaskile and Kika, my caregivers. Both of these men are committed Christians, and both are so valuable to us.
Kaskile has been with us since July of 2008 and has become like one of the family. He is a very skilled person and is confident and professional in his approach. He also has a great sense of humour and a broad smile that lights up his face. Nicky often hears us laughing and just has to come to find out what is so funny.
Kaskile generally works day shift and comes to work with us every day. He is quite literally my right-hand man. (and my left-hand man!) And he’s become very popular with the staff and the pupils at the school.
Kika works night shift, taking over at 5:00 pm. Although not as qualified as Kaskile, he is eager to learn and takes his work very seriously.
There is virtually nothing either of these two men wouldn’t do for me. I rely on them both in almost everything I do. And the load it has taken off of Nicky is invaluable. Nicky and I have so much more quality time together now that I have 24/7 care.
Kaskile has been with us since July of 2008 and has become like one of the family. He is a very skilled person and is confident and professional in his approach. He also has a great sense of humour and a broad smile that lights up his face. Nicky often hears us laughing and just has to come to find out what is so funny.
Kaskile generally works day shift and comes to work with us every day. He is quite literally my right-hand man. (and my left-hand man!) And he’s become very popular with the staff and the pupils at the school.
Kika works night shift, taking over at 5:00 pm. Although not as qualified as Kaskile, he is eager to learn and takes his work very seriously.
There is virtually nothing either of these two men wouldn’t do for me. I rely on them both in almost everything I do. And the load it has taken off of Nicky is invaluable. Nicky and I have so much more quality time together now that I have 24/7 care.
Subscribe to:
Posts (Atom)