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

Speaking at Trinity Nazarene Church in Monterey Park

Last Sunday, it was my privilege to speak at Trinity Nazarene church in Monterey Park. This was the first time I was to deliver the main message of a worship service. A bit nervous I sat there during the worship songs, wishing I was better prepared. It’s not that I didn't try, there’s something about me and putting words on paper. I spent all of the last 3 weeks working on this talk and 1 to 2 weeks before that contemplating of what I wanted to say: outlining my ideas, taking all the experiences, emotions, revelations and experiences in trying to weave it into an understanding testimony of what I had experienced and learned on this journey.

I’m not good at this, and this preparation was revealing it in spades. Writing, rewriting and rewriting again, I took one approach then another, trying to best express my thoughts. If it wasn’t for Word for Windows, an old-fashioned typewriter attempt would have buried me under a mountain of balled– up, crumpled rejects.

It’s not that I didn’t know what to say. It was that there was so much in my mind. Snippets of experiences, observations, feelings, conclusions and questions; all the things that I’ve collected along my journey with ALS were bouncing around in my head like bingo balls in the spinning cage; each banging around vying to escape onto the paper.

The night before I was to speak, I looked at it once again. I know, I know this talk should have been finished and in the can a week ago. Believe me, I TRIED. It didn't happen. When I reviewed it this time, I hated it. Ideas I liked before, missed the point. I glossed over points that upon review should have been emphasized. I was angry: disappointed at letting down everyone who had put faith in me and missing a wonderful opportunity to witness for Christ. I asked God, “Why do you do this!? I work so hard to share what you have taught me and it comes out like crap!” I am a reject. I can’t do these things. I should never do this.

In my heart, though, I knew this was wrong. I knew sharing is what God wanted me to do.  I had to be faithful and just keep pressing on. There is a purpose, he’s teaching me. I just have to be faithful. I cut-and-pasted, made major revisions, crazy for a talk that I’m presenting in the morning. Much of it now resembles how I’ve shared in the past. Something I wanted to get away from. I wanted something more sophisticated, but maybe, just maybe, this is what He wanted.

On the morning of service, I reviewed parts but did not review the whole– no going back now. The message was to be 30 to 40 minutes long; I had NO IDEA how long my message will be. As we drive, I’m nervous. It’s not overwhelming, just a low simmer of nervousness gnawing at my gut. It’s not because I’m afraid of how I’ll look if I fail – I’m terminal, why would I care about that? It’s because of the missed opportunity and all the people I’ll let down. At the end, I said to God, “You know I worked as hard as I could on this and I did it all for You. Okay, now it’s on you.”

As we sat in service, singing worship songs, I knew it would be my turn soon. Simmering up was that nervousness again; I kept thinking I wish I had done more. But, my mind turned to Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go”, I repeated the last part that God would be with me. It turned off the flame to the simmer. I felt good. These words were a reminder of my continual experience of His faithfulness – I knew He was there with me.

Now, was the time for my message. It started a little haltingly at first, but once I got up to speed the words and thoughts just flowed out. I felt like a ventriloquist’s dummy, sitting there, my mouth moved and the words came out. When we checked later, I spoke for 42 minutes, almost on the nose.  I hate to review my own talks. It’s not really for me to decide. But, people did come up, later; some with tears, to say what I had shared had touched them. Kathy did say it was good, as did others. I don’t know but I give God the credit on this one.

Reflecting back, perhaps it turned out this way so that God could let me know that the word spoken that day were His words, not mine. I’d like to think that this is why it happened this way. It sounds good.  But, the real reason is probably that I’m just disorganized, a crappy writer that needs a lot of work. There is an interesting side note to this: this blog/note – normally 3 day process for me to write – was done in one straight shot – a first.

God is good.