Part of coping emotionally with this (or any) disease is the ability to maintain and enjoy a sense of humour. Being able to see the funny side of things helps to offset and interrupt the heaviness that can rear its head now and again.
We have laughed often at ourselves and have built a large collection of happy memories and humorous moments upon which to draw when necessary. I will relate two of them here that have to do with the deterioration of my voice.
The first happened just over a year after my diagnosis. My speech had slowed down quite a bit, but people were able to understand me easily. Easily enough that I was asked by the leader of our church to preach one Sunday. I enjoyed the preparation immensely and felt that God had given a message for the church. But I had a problem. How could I put people at ease when they could see the effort it took for me to speak? In other words, how could I ensure that my voice wasn’t a distraction from the message I wanted to get across?
God gave me the answer as I was going over my sermon the day before. The next morning I introduced my sermon by saying, “You will notice that this disease has affected my voice causing me to speak quite slowly. As a result, I have some good news, and I have some bad news. The good is for those of you taking notes of the message this morning: You should have no problem keeping up! The bad news for all of us is that we may finish just in time for the evening prayer meeting!” The ice was broken, and the sermon went well.
The second incident involved Nicky’s uncle and a few other family members and friends. It took place about two years after my diagnosis when my speech had become increasingly difficult to understand. We were all sitting in our flat after lunch when the conversation somehow turned to Sylvester Stallone and his performances in the Rocky movies. Responding to a comment on Stallone’s dialogue in these movies, Nicky’s uncle suggested that I could do as well in that role. On cue, I let rip with the trademark line, “Adrian!” When we finished laughing, all agreed that it had been a near-perfect impersonation!
18 January 2009
21 December 2008
THE SPIRITUAL ASPECT – No. 4
A few months ago, I reached possibly the most significant spiritual milestone so far in this journey. It’s a milestone which incorporates each of the other aspects (physical, emotional and relational) as well. And it changed my entire outlook on the circumstances that I’m facing.
In order to set the stage, I need to revisit my initial reaction upon receiving the diagnosis with MND/ALS. Nicky and I knew from the beginning that God was in control, and have trusted Him to carry us through this. We have always believed that God has many purposes that He is accomplishing through our circumstances—purposes both in our lives and in the lives of others.
But underlying all of this was the question of whether I believed God would heal me of this disease. There was no doubt in my mind that He was able to heal me—but would He? From a personal perspective, I was content with the fact that God was in control and His will would be done. I had surrendered to whatever outcome would be most favourable for God’s Kingdom to be furthered.
Added to the mix was the fact that several years earlier we had asked for healing for Nicky’s mother from cancer, but she continued to worsen and passed away two years later. As I once heard author Adrian Plass say, “We know two things about God: We know that He heals, and we know that sometimes He doesn’t heal.” God knew my need for healing, and I didn’t feel the necessity to do anything beyond trusting Him for the grace to live each day for Him.
Then one Sunday in a meeting of our local church during the sermon, God changed my whole perspective on healing. Not that my perspective had been wrong—just incomplete.
The elder preaching that morning pointed to various passages from the Bible that indicated God does not primarily respond to need. He responds to faith. There are exceptions to this, but none that are similar to my specific situation. This challenged me to consider that maybe it wasn’t enough just to rest in the fact that God knew my circumstances and my need for healing.
From that day to the present, I have been stirring my faith for healing by going to God’s Word, the Bible. He has often led me to specific passages that have built my expectation that I will experience healing this side of eternity.
Yes, it’s possible that I won’t be healed while on this earth. I don’t think that having faith for healing means I cannot acknowledge this possibility. I do think that having faith for healing is more about how I live and the choices I make each day. So while we are waiting, I choose to focus on accomplishing the work He’s called me to do, and on preparing for the radical changes to our lives that will result from receiving a miracle.
In order to set the stage, I need to revisit my initial reaction upon receiving the diagnosis with MND/ALS. Nicky and I knew from the beginning that God was in control, and have trusted Him to carry us through this. We have always believed that God has many purposes that He is accomplishing through our circumstances—purposes both in our lives and in the lives of others.
But underlying all of this was the question of whether I believed God would heal me of this disease. There was no doubt in my mind that He was able to heal me—but would He? From a personal perspective, I was content with the fact that God was in control and His will would be done. I had surrendered to whatever outcome would be most favourable for God’s Kingdom to be furthered.
Added to the mix was the fact that several years earlier we had asked for healing for Nicky’s mother from cancer, but she continued to worsen and passed away two years later. As I once heard author Adrian Plass say, “We know two things about God: We know that He heals, and we know that sometimes He doesn’t heal.” God knew my need for healing, and I didn’t feel the necessity to do anything beyond trusting Him for the grace to live each day for Him.
Then one Sunday in a meeting of our local church during the sermon, God changed my whole perspective on healing. Not that my perspective had been wrong—just incomplete.
The elder preaching that morning pointed to various passages from the Bible that indicated God does not primarily respond to need. He responds to faith. There are exceptions to this, but none that are similar to my specific situation. This challenged me to consider that maybe it wasn’t enough just to rest in the fact that God knew my circumstances and my need for healing.
From that day to the present, I have been stirring my faith for healing by going to God’s Word, the Bible. He has often led me to specific passages that have built my expectation that I will experience healing this side of eternity.
Yes, it’s possible that I won’t be healed while on this earth. I don’t think that having faith for healing means I cannot acknowledge this possibility. I do think that having faith for healing is more about how I live and the choices I make each day. So while we are waiting, I choose to focus on accomplishing the work He’s called me to do, and on preparing for the radical changes to our lives that will result from receiving a miracle.
17 December 2008
THE SPIRITUAL ASPECT – No. 3 - response
As an addition to my last post I include the following excerpt from an email response I have subsequently received. I trust you will find it as helpful as I did.
“If you read the account of Gods provision of Manna in Exodus 16 there is a verse that says, ‘Those who gathered much did not have too much and those who gathered little did not have to little. I get the impression that when the manna fell it did not cover the ground evenly. Thousands and thousands of people trying to gather, it was probably easier for some than for others and so some were able to gather more than others depending on where they found themselves. There was however this amazing grace factor that everyone had enough providing they had gathered. I think it is a picture of our devotional lives and manna is the substance that feeds our spirits. There are times when life does not afford us the time to gather easily but when we are faithful the little is not too little.”
“If you read the account of Gods provision of Manna in Exodus 16 there is a verse that says, ‘Those who gathered much did not have too much and those who gathered little did not have to little. I get the impression that when the manna fell it did not cover the ground evenly. Thousands and thousands of people trying to gather, it was probably easier for some than for others and so some were able to gather more than others depending on where they found themselves. There was however this amazing grace factor that everyone had enough providing they had gathered. I think it is a picture of our devotional lives and manna is the substance that feeds our spirits. There are times when life does not afford us the time to gather easily but when we are faithful the little is not too little.”
12 December 2008
THE SPIRITUAL ASPECT – No. 3
Another spiritual milestone that I’ve reached related to my growing physical challenges involves time. Before my diagnosis, I was pretty regular in spending time in prayer and Bible study. Early on I was able to maintain that regularity. As the disease progressed, however, more and more of my time in the day was taken up with practical things which took much longer to complete than before. The result was that my devotional time was squeezed out.
As I began spending less time in personal devotions, I also began feeling quite guilty about it. I spoke about it to one of the elders in our local church, and his counsel was that in God’s grace He sometimes will do more with less. I could see this working out in my life, but I still had a nagging feeling in my heart that I should still be trying to spend an hour every day like I used to do.
The breakthrough came when I heard a quote from a well-known Christian saying something like, ”Rarely do I spend a full hour a day in prayer. But rarely does an hour go by in a day that I don’t spend at least 10 minutes in prayer.” I don’t claim to that constant, but I do agree with the principle that I need to be aware of God’s presence, and my dependence on Him, throughout the day.
I have many 10-15 minute time slots available to me every day. In the early morning when I’m waiting for help to get out of bed; at mealtimes while I’m being fed; each afternoon while I’m receiving a circulation-boosting massage; and at night before I go to sleep I can use the time productively by praying or thinking about a Bible passage that I’ve read.
Nicky once asked me if I’m ever fearful. I can’t say I never get apprehensive about what may lie ahead, but my honest answer now is that most of the time I feel God so near that I can’t be afraid.
As I began spending less time in personal devotions, I also began feeling quite guilty about it. I spoke about it to one of the elders in our local church, and his counsel was that in God’s grace He sometimes will do more with less. I could see this working out in my life, but I still had a nagging feeling in my heart that I should still be trying to spend an hour every day like I used to do.
The breakthrough came when I heard a quote from a well-known Christian saying something like, ”Rarely do I spend a full hour a day in prayer. But rarely does an hour go by in a day that I don’t spend at least 10 minutes in prayer.” I don’t claim to that constant, but I do agree with the principle that I need to be aware of God’s presence, and my dependence on Him, throughout the day.
I have many 10-15 minute time slots available to me every day. In the early morning when I’m waiting for help to get out of bed; at mealtimes while I’m being fed; each afternoon while I’m receiving a circulation-boosting massage; and at night before I go to sleep I can use the time productively by praying or thinking about a Bible passage that I’ve read.
Nicky once asked me if I’m ever fearful. I can’t say I never get apprehensive about what may lie ahead, but my honest answer now is that most of the time I feel God so near that I can’t be afraid.
30 November 2008
THE SPIRITUAL ASPECT – No. 2
I’ve written at length about the physical milestones that I have experienced so far. And I’ve stated that each physical milestone reached carries with it a corresponding loss of independence. This fact has led me to reach one of the most important spiritual milestones along this journey.
Before the diagnosis, I had become quite independent and self-sufficient. Eleven years of marriage to a wonderfully capable and loving wife should have helped me realise my need for others, but Nicky will attest to how hard it was for me to follow up the words, “I love you” with the words, “I need you.” Growing up as an only child; going off to college where I knew no one; taking a job in a town where I knew no one; and leaving for South Africa where I knew no one all contributed to my reluctance to rely on others.
Even after my diagnosis I stubbornly kept on trying to do things myself—much to my wife’s frustration and to my own peril! I would struggle on, sometimes succeeding—often failing, because it usually never even occurred to me to ask for help. Only after Nicky or someone else offered assistance did I face the fact that I was having difficulty. And even then my almost automatic response was, ”No, I’m alright.” Only if I could see that I really wasn’t going to make it would I accept the offer of help—far from graciously at times, I must admit!
But as I reached more and more physical milestones, it began to sink in that I was becoming more and more dependent on the help of others. The difficulty for me then became to determine how much to try myself and how much to ask for assistance. Eventually, I realised that the important thing for me was the willingness to (graciously) ask for and receive help. Then the specific circumstances would work themselves out.
At this point, you may be wondering why I chose to write these things under the ’Spiritual Aspect’ heading. The reason is that God is using these circumstances to teach me a very important spiritual lesson. As much as I had learned to trust God with the ‘big’ things in my life, I retained control of the everyday things. Only after I had exhausted every option I could think of would I turn to God and ask for help (often grudgingly, as well).
I’ve learned that the difference between living and working in His strength and doing so in my own strength comes down to timing and trust. Timing, in that the time to pray is before I begin, not once I’m stuck. And trust, in that I can trust God to be in control whether things turn out the way I want them to or not. Do I relapse? Yes, often. But I’m learning to depend on Him more consistently and completely.
Before the diagnosis, I had become quite independent and self-sufficient. Eleven years of marriage to a wonderfully capable and loving wife should have helped me realise my need for others, but Nicky will attest to how hard it was for me to follow up the words, “I love you” with the words, “I need you.” Growing up as an only child; going off to college where I knew no one; taking a job in a town where I knew no one; and leaving for South Africa where I knew no one all contributed to my reluctance to rely on others.
Even after my diagnosis I stubbornly kept on trying to do things myself—much to my wife’s frustration and to my own peril! I would struggle on, sometimes succeeding—often failing, because it usually never even occurred to me to ask for help. Only after Nicky or someone else offered assistance did I face the fact that I was having difficulty. And even then my almost automatic response was, ”No, I’m alright.” Only if I could see that I really wasn’t going to make it would I accept the offer of help—far from graciously at times, I must admit!
But as I reached more and more physical milestones, it began to sink in that I was becoming more and more dependent on the help of others. The difficulty for me then became to determine how much to try myself and how much to ask for assistance. Eventually, I realised that the important thing for me was the willingness to (graciously) ask for and receive help. Then the specific circumstances would work themselves out.
At this point, you may be wondering why I chose to write these things under the ’Spiritual Aspect’ heading. The reason is that God is using these circumstances to teach me a very important spiritual lesson. As much as I had learned to trust God with the ‘big’ things in my life, I retained control of the everyday things. Only after I had exhausted every option I could think of would I turn to God and ask for help (often grudgingly, as well).
I’ve learned that the difference between living and working in His strength and doing so in my own strength comes down to timing and trust. Timing, in that the time to pray is before I begin, not once I’m stuck. And trust, in that I can trust God to be in control whether things turn out the way I want them to or not. Do I relapse? Yes, often. But I’m learning to depend on Him more consistently and completely.
21 November 2008
THE PHYSICAL ASPECT – No. 5
I’ve written about milestones in the areas of ablutions, communication, transportation and consumption. Let me finish off the ‘Big 5’ by focusing on recreation.
I defined recreation as everything from sport to channel-surfing. I used to enjoy playing sports including volleyball, basketball, tennis and running. I also used to enjoy working out at the gym. But obviously, those days are long gone. I do often miss that feeling of being fit and in good shape.
I’ve also been asked often if exercising my muscles could help my condition. The answer is, yes, and no. The complication is that the disease doesn’t primarily affect the muscles, it attacks the nerves that relay the message from the brain telling the muscle to move. I could have the body of a Mr Universe (in my dreams!), and it wouldn’t make any difference. However, the muscles that are still receiving signals from the brain have to compensate for those that are not. So keeping them strong can be of some temporary benefit.
I guess one could include sleep under the banner of recreation—for some, it’s a favourite pastime! My sleeping patterns have changed a bit since my diagnosis. Reaching the point where I could no longer turn over in bed made it more difficult to be comfortable at night. I now wake up more often resulting in more interrupted sleep. So I’ve become quite careful to get up to 9 hour’s sleep every night. Otherwise, I’m much weaker the next day.
Finally, speaking of channel-surfing, another milestone for me was no longer being able to work the TV remote—ask any guy how big this is! But I’ve just found out about a switch-enabled universal remote control for video equipment. I’m investigating whether it will work here in SA. Hope so!
I defined recreation as everything from sport to channel-surfing. I used to enjoy playing sports including volleyball, basketball, tennis and running. I also used to enjoy working out at the gym. But obviously, those days are long gone. I do often miss that feeling of being fit and in good shape.
I’ve also been asked often if exercising my muscles could help my condition. The answer is, yes, and no. The complication is that the disease doesn’t primarily affect the muscles, it attacks the nerves that relay the message from the brain telling the muscle to move. I could have the body of a Mr Universe (in my dreams!), and it wouldn’t make any difference. However, the muscles that are still receiving signals from the brain have to compensate for those that are not. So keeping them strong can be of some temporary benefit.
I guess one could include sleep under the banner of recreation—for some, it’s a favourite pastime! My sleeping patterns have changed a bit since my diagnosis. Reaching the point where I could no longer turn over in bed made it more difficult to be comfortable at night. I now wake up more often resulting in more interrupted sleep. So I’ve become quite careful to get up to 9 hour’s sleep every night. Otherwise, I’m much weaker the next day.
Finally, speaking of channel-surfing, another milestone for me was no longer being able to work the TV remote—ask any guy how big this is! But I’ve just found out about a switch-enabled universal remote control for video equipment. I’m investigating whether it will work here in SA. Hope so!
09 November 2008
THE PHYSICAL ASPECT – No. 4
Another ‘Big 5’ area characterised by significant milestones is that of consumption (described in an earlier post as including all eating and drinking). I mentioned last week that each physical milestone reached carries with it a corresponding loss of independence. It may be obvious, but with decreasing independence comes an increase in my dependence on other people. That’s especially true in the area of consumption.
Being able to feed one’s self is right up there with walking and talking as things we learn to do at an early age. Losing that ability creates a huge level of dependence on others. When my arms were no longer strong enough to raise a fork to my mouth, I then had to rely on Nicky or my caregiver to feed me at mealtimes. Drinking also became increasingly difficult as I began to struggle not only to lift a glass to my mouth, but also to swallow.
For a person living with ALS/MND, eating and drinking can become very difficult since we all depend on the muscles of the mouth and throat to chew and swallow. I’ve been blessed in that, although it is a bit difficult, I can still eat and drink almost anything.
My biggest setback in this area came a couple of months ago when apparently I ‘sprained’ my jaw. If you’ve ever seen me yawn, you won’t be too surprised! (I even managed to dislocate my jaw while yawning just over a year ago!) Anyway, since spraining my jaw I’ve had to avoid eating anything too tough or chewy (no more steak or pizza L).
One more thing I’ve cut out of my diet, not because I’ve had to but because I’ve decided to, is sweets and desserts. Since my lifestyle has become completely sedentary, I’m not burning many calories anymore. So in order to not gain a lot of weight, I’ve cut down my calorie intake. I’m pleased to say that I’m still wearing the same size trousers as the day I was diagnosed!
Being able to feed one’s self is right up there with walking and talking as things we learn to do at an early age. Losing that ability creates a huge level of dependence on others. When my arms were no longer strong enough to raise a fork to my mouth, I then had to rely on Nicky or my caregiver to feed me at mealtimes. Drinking also became increasingly difficult as I began to struggle not only to lift a glass to my mouth, but also to swallow.
For a person living with ALS/MND, eating and drinking can become very difficult since we all depend on the muscles of the mouth and throat to chew and swallow. I’ve been blessed in that, although it is a bit difficult, I can still eat and drink almost anything.
My biggest setback in this area came a couple of months ago when apparently I ‘sprained’ my jaw. If you’ve ever seen me yawn, you won’t be too surprised! (I even managed to dislocate my jaw while yawning just over a year ago!) Anyway, since spraining my jaw I’ve had to avoid eating anything too tough or chewy (no more steak or pizza L).
One more thing I’ve cut out of my diet, not because I’ve had to but because I’ve decided to, is sweets and desserts. Since my lifestyle has become completely sedentary, I’m not burning many calories anymore. So in order to not gain a lot of weight, I’ve cut down my calorie intake. I’m pleased to say that I’m still wearing the same size trousers as the day I was diagnosed!
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