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.

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!

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!

THE PHYSICAL ASPECT – No. 3

Carrying on with the physical milestones I’ve experienced…

Each physical milestone reached carries with it a corresponding loss of independence. Nowhere is this more evident than in the ‘Big 5’ area of transportation. You’ll remember that I included walking, driving, etc. under this heading. I’ll start with my driving…

I always considered myself to be a pretty good driver, but I must confess that I’m a terrible passenger. Nicky used to dread having to take over the wheel on long trips. It’s not that I’m a nervous passenger or a backseat driver. I just get bored—REALLY bored, and REALLY quickly! Then I can’t help making a nuisance of myself and irritating the driver, especially when the driver happens to be my wife! So, needless to say, when I realized my reaction time was no longer quick enough to safely remain behind the wheel, it was a big adjustment for both Nicky and me. She had to take over all the driving (fortunately, she loves driving), and I had to learn to be a passenger (I’m getting better)!

Giving up driving was easier than I thought it would be, but gradually losing the ability to walk has been quite a difficult and frustrating process to go through. Balance has been the biggest issue, resulting in a few nasty falls before I started looking for something to aid my walking. The first prop was a walking staff given to me by my brother-in-law. It added just enough balance but wasn’t too cumbersome. It also came in handy when I dressed up as Moses for ‘Hero Day’ at school.

When my balance became worse, I exchanged my staff for a 3-wheeled walker, “Bob’s bike” as our friends’ little boy called it. This provided me with much-needed stability while maintaining maneuverability. As the muscles in my legs grew weaker, however, I could no longer walk longer distances or negotiate uneven surfaces. At this point I had to give in to finally using a wheelchair. Only weeks earlier some good friends had given me a motorized cart called a Shoprider. This proved to be ideal for getting around the school campus. And with the modifications done by the school to our office, I could drive it right in. All was going well until there was a break-in at the school, and would you believe it—the thieves also stole my Shoprider!

But thanks to the generosity of many family members and friends, this wasn’t the loss of independence that it could have been. With numerous donations resulting from a benefit concert put on by ‘The Bats’ (South Africans will know them well), we were able to purchase not only a motorized wheelchair, but also a van with which to transport it! Now I’m actually more mobile than before in spite of the fact that my legs are even weaker. God’s provision continues to astound us!