How Are You Doing?

How are you doing?

It’s been a while, so I thought I would give everyone a status update. “How are you doing?”, that is usually the first question everyone asks when they haven’t seen me for a while, understandable since with Al, my physical status is always changing. Well, to answer that question for all who have seen me in a while, I’m weaker; much, much weaker.

I have named my current condition stage 3. Stage 1 was where I could compensate for my loss of function by simply changing how I did things. Stage 2 was where I could no longer adapt on my own and needed Kathy’s assistance to maintain functionality. Now at stage 3, Kathy’s is no longer strong enough to compensate for my weakening condition. We now require an ever growing number of adaptive devices to perform my daily tasks. Our house is looking more and more like garage as we acquire an ever-growing collection of adaptive devices: Hoyer lift, BiPAP machine, oxygen concentrator, portable commode, power wheelchair, transport wheelchair, portable lift to name a few.

My decline has also given rise to a curious anomaly which has complicated my life. My legs swell now whenever I sit. Even with support stockings I can only sit for half a day before my legs become painfully swollen. To complicate matters, when my legs swell they weaken. What little strength I have left in my legs to stand and shuffle is gone further complicating the task of moving me one place to another. As a result, in order to preserve my legs, I spend most of my day in bed with my legs in the elevated position.

Thankfully, I can still use the computer while in bed. Although, I've lost most of the use of my arms and hands, I still have enough function in my right hand to control the mouse. And, although I haven’t been able to use a keyboard in a while I can still speak clearly I use Dragon Naturally Speaking, a wonderful program that allows me to continue to type by speaking. I am using it now to write this blog.

As you can see, I’m very weak now. I envy the strength of a 90 year old. Kathy helps me with virtually everything. Without her, I would just lay in bed all day. I need her help to sit up, transfer to my wheelchair, eat, dress, bathe to name just a few. She is a warrior; continually, throughout the day, she helps me with whatever I need to do. Devoted, without ever a complaint, she is always there to help me. When I tell her how sorry I am that fate has made her my caretaker, she cheerfully quips, “I made a promise to be with you in sickness and health.” Never once, has she made me feel like a burden. She is my rock.

Despite all this, we still laugh, joke and smile. Life is different but it is still good. ALS changed my perspective, life is fleeting, precious. We have less, but savor what we have and it is enough – life is still good. The funny part about this is that when I am among people and I sit and listen; I often hear complaints, what’s wrong with life. How odd it is to hear that. Life is too brief, too precious to miss all that is good about it.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.                          

2 Corinthians 4:16-18