I’ve written generally about the relational aspect of this disease and have shared specifically a bit about how it has affected my relationship with my wife. Now I want to address another vital part of the relational aspect of ALS/MND—the support system. Aside from the spiritual aspect, this may be the most important in terms of being able to cope with the day-to-day challenges.
Nicky and I could not ask for a better support system Since the day I was diagnosed, our family, friends, church, and the school community where we work have done an outstanding job of coming along side and helping in all kinds of ways. Prayer support was immediate and has been consistent throughout. Emotional support and physical assistance are both always just a phone call away. And the financial support we have received has been overwhelming.
Beside the help with the speech recognition software and the head mouse that I’ve mentioned previously, here are just some of the ways that we have been so blessed by the people in our support system…
-We have received countless words of encouragement and Scripture verses from people who are praying for us.
-Almost daily we receive a note, text message or email from someone wishing us well.
-Family and friends organised a benefit concert to raise funds toward a motorised wheelchair and a van in which to transport it. Over 950 tickets were sold!
-One family from our local church has offered to cover the cost of my caregiver.
-The youth group from our local church dedicated an entire evening to praying for and ministering to Nicky and I.
-The school where we work put in ramps and many other accessibility features at their own expense.
-A friend is supplying the supplements that I take every day free of charge. And I take a lot of them!
-The pupils at the school have wholeheartedly embraced me and continue to treat me with dignity and concern.
-And many more!
Now I realise that not everyone has a support system like this, but I do believe that my wife and I are seeing two fundamental principles in operation within our circumstances that apply equally to everyone. The first is the principle of sowing and reaping. I’ve heard it said that not only do you reap what you sow, but you also always reap later than you sow and more than you sow. I write this not to blow our own trumpet, but merely to make my point. Nicky and I have strived to live out the values of generosity and self-sacrifice. And now I believe we are living in the fruit of this principle. It’s not to be viewed as a transaction (if I do this, then God has to do that), but rather as an expression of the grace of God.
The second principle we see in operation is that of the body of Christ—the Church. Like any other body, when one part suffers, all the others are affected. We have seen how the Church has responded to our situation with love in so many practical ways. As a good friend put it, “It’s awesome to see the body of Christ being the body of Christ.”
Finally, I’d like to respond to Carina’s comment on my 13 September 2008 post. Thank-you, Carina, for your honesty and vulnerability in the midst of what must currently be some very raw and painful emotions. I hope that in some way I can serve as part of your support system as you continue to deal with your grief.
22 September 2008
13 September 2008
THE RELATIONAL ASPECT (continued)
Obviously, the relationship that has been most affected since my diagnosis has been the one with my wife, Nicky. I knew from the beginning that this journey would be harder for her than for me—I believe it’s more difficult to watch someone go through something like this than it is to go through it yourself.
As my muscles grew weaker and my need for help increased, we found that we were having less and less quality time together. Much of our time was being taken up with practical tasks. At one point I had said to Nicky that I needed her more as a wife than as a caregiver. So we made the decision to bring in a caregiver—first three days, and presently five days per week. What a difference! We immediately realised we had waited too long. Nicky was exhausted, and we hadn’t had time to ourselves for weeks. Now we have virtually every evening to ourselves and time on the weekends.
My difficulty with speaking has limited our communication a bit. No more long chats over cappuccinos. Even praying together is quite challenging. We have to work hard to make sure we keep up with how the other is doing. But in spite of what this disease has stolen from us, we are more in love than ever. We do discuss things and still make decisions together.
My limited mobility, plus the fact that everything takes so much longer to do, means that we also don’t go out as much as before. So we need to make the most of the opportunities we get. We’ve also always maintained that ordering in pizza with a video (or the latest recorded episode of ‘Survivor’) can be just as much fun!
In spite of all the difficulties, Nicky has been consistent in her love for me and in her commitment to stand by me no matter what. God knew I needed someone like her, and He has blessed me with the best!
As my muscles grew weaker and my need for help increased, we found that we were having less and less quality time together. Much of our time was being taken up with practical tasks. At one point I had said to Nicky that I needed her more as a wife than as a caregiver. So we made the decision to bring in a caregiver—first three days, and presently five days per week. What a difference! We immediately realised we had waited too long. Nicky was exhausted, and we hadn’t had time to ourselves for weeks. Now we have virtually every evening to ourselves and time on the weekends.
My difficulty with speaking has limited our communication a bit. No more long chats over cappuccinos. Even praying together is quite challenging. We have to work hard to make sure we keep up with how the other is doing. But in spite of what this disease has stolen from us, we are more in love than ever. We do discuss things and still make decisions together.
My limited mobility, plus the fact that everything takes so much longer to do, means that we also don’t go out as much as before. So we need to make the most of the opportunities we get. We’ve also always maintained that ordering in pizza with a video (or the latest recorded episode of ‘Survivor’) can be just as much fun!
In spite of all the difficulties, Nicky has been consistent in her love for me and in her commitment to stand by me no matter what. God knew I needed someone like her, and He has blessed me with the best!
07 September 2008
THE RELATIONAL ASPECT
Back to the four aspects of this disease (physical, spiritual, emotional, relational). Finally we come to the impact this disease can have on one’s relationships. I’ll write generally and then talk about some specific relationships.
The thing that I have found that has the greatest impact on my relationships is the difficulty I have with communication. Initially, the weakness in my hands and arms made it difficult to type on the computer keyboard. As I use my laptop a lot both at the office and at home, this presented a big problem! But God had a solution! A good friend and colleague offered to purchase for me the best speech recognition software on the market—What a blessing! It worked so well that I was able to use my voice to do most of the things that I could do when I could type!
Then my speech began to deteriorate last year. I persevered with the speech recognition software until I was correcting more words than I was getting right—the definition of frustration! Then I had to resort to using an on-screen keyboard with a mouse (I could still move and click a normal mouse). This took a while to get used to since it was much slower having to point to and click on one letter at a time. But it was still quite effective. At this stage my speech was slow, but was still understood by most people.
Finally, I reached the point where I could no longer move the mouse quickly or accurately enough to use the on-screen keyboard. Again, a big problem! And again, God had a solution! A family member offered to pay for a device that I had seen on the internet called a head mouse. It consists of an ‘eye’ that mounts on the top of my screen and a reflective dot that attaches to a hat or pair of glasses which enables me to move the cursor by moving my head. I’m using the head mouse and on-screen keyboard right now to type this post. It works great as long as you don’t have a stiff neck!
At the moment I can still communicate with my voice, but it requires a lot of effort and at times it is hard for people to understand me. My voice is quite soft and gets tired quickly. And if there is much background noise, it is very difficult for me to be heard.
Most family, close friends and colleagues are patient enough to bear with my attempts to make myself understood, and I really appreciate their perseverance. I’ve also become very familiar with the blank stare and slight shake of the head that means they have no idea what I’ve just said and I need to repeat it. This is not to be confused with the response of some other people when they don’t understand me. The blank stare is the same, but it is accompanied by a nodding of the head meaning, “I didn’t understand, but feel bad making him repeat what he just said so I’ll pretend I did.” I know it’s often hard to understand me, and I really don’t mind repeating myself. Most of the time I’m able to get my message across eventually!
The thing that I have found that has the greatest impact on my relationships is the difficulty I have with communication. Initially, the weakness in my hands and arms made it difficult to type on the computer keyboard. As I use my laptop a lot both at the office and at home, this presented a big problem! But God had a solution! A good friend and colleague offered to purchase for me the best speech recognition software on the market—What a blessing! It worked so well that I was able to use my voice to do most of the things that I could do when I could type!
Then my speech began to deteriorate last year. I persevered with the speech recognition software until I was correcting more words than I was getting right—the definition of frustration! Then I had to resort to using an on-screen keyboard with a mouse (I could still move and click a normal mouse). This took a while to get used to since it was much slower having to point to and click on one letter at a time. But it was still quite effective. At this stage my speech was slow, but was still understood by most people.
Finally, I reached the point where I could no longer move the mouse quickly or accurately enough to use the on-screen keyboard. Again, a big problem! And again, God had a solution! A family member offered to pay for a device that I had seen on the internet called a head mouse. It consists of an ‘eye’ that mounts on the top of my screen and a reflective dot that attaches to a hat or pair of glasses which enables me to move the cursor by moving my head. I’m using the head mouse and on-screen keyboard right now to type this post. It works great as long as you don’t have a stiff neck!
At the moment I can still communicate with my voice, but it requires a lot of effort and at times it is hard for people to understand me. My voice is quite soft and gets tired quickly. And if there is much background noise, it is very difficult for me to be heard.
Most family, close friends and colleagues are patient enough to bear with my attempts to make myself understood, and I really appreciate their perseverance. I’ve also become very familiar with the blank stare and slight shake of the head that means they have no idea what I’ve just said and I need to repeat it. This is not to be confused with the response of some other people when they don’t understand me. The blank stare is the same, but it is accompanied by a nodding of the head meaning, “I didn’t understand, but feel bad making him repeat what he just said so I’ll pretend I did.” I know it’s often hard to understand me, and I really don’t mind repeating myself. Most of the time I’m able to get my message across eventually!
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