I have not written an update for a while. Not because there has been no change, but mostly because I am still processing the changes that are happening. As of this past Sunday I have stepped back from my preaching duties at TCC. I expect to fill in occasionally, but the fulltime duties fall to another person God has anointed and designated. I know the congregation will be blessed.
A couple paragraphs from last week’s sermon:
You may notice that I will be setting boundaries you are not accustomed to seeing in my life and ministry. The diagnosis of ALS changed me in significant ways. One of those has made my priorities crystal clear. There are just three (3).
- God gets all the glory and praise – everyday. He alone is worthy.
- Prayer, care and attention to my family, and my own health.
- To live each day to the fullest possible – keeping in mind the first two priorities.
Understand that as I live out these priorities, with newly established boundaries, the challenges for me are as difficult, complicated, and tough for me as they will be for you. We do not want to change – but in the economy of God – change is growth …
A huge part of living everyday with ALS is the unknown, both the unknown of the physical changes and the timetable. The end is inevitable, but the process is different for everyone. The timeline of change is completely unpredictable. So far, I am beyond grateful that my diagnosis of “slow progressive” ALS is holding true. I have had very little change in the last 4 months since diagnosis – it is incredibly encouraging.
Too often, it is very easy to slip into a mindset of what I am losing. I don’t need to make a list; I am sure you can imagine! Working to keep a mindset of what I am gaining is much more productive, even if it takes effort and intentionality. I recently did a Bible study of Jennie Allen’s. I remind myself often from that study, I have a choice when I get in my head. I can choose for those thoughts to spiral up or I can allow them to spiral down. Spiraling up makes for far better days. Living mindful of the good that is all around me, the abundant blessings I see when my mind and eyes are open to them.
So then yesterday, this happened, this chair arrived. I had been excited, anticipating the delivery. It’s my favorite – raspberry – color, designed and made for me! The young man who delivered it was kind-hearted, gave me all the instructions I needed and went with me on my inaugural spin down the ramp, across the street, and to do donuts in the parking lot.
Then it hit me – at some point in the unknown future, this wheelchair will be my only ability to move. My life will be spent in this chair or in a bed. Those thoughts seemed to hit Howard at the same time. It felt like a punch in the guts; it was hard to breathe and impossible to stop the tears.
So this expensive, incredible, complicated, computer driven, gyroscope enabled, motor driven (6 mph) transport device is a blessing beyond measure, and a curse I would like to hide in the closet so I don’t have to think about the future. It is the world I live in today.
With ALS there is not a fighting chance; only an unknown timeline to a progressively more difficult life requiring 24/hour care. YUCK. Double YUCK. The best that can be done is to slow down the process.
Yet there is hope for tomorrow. The newest medicine I have been taking – Radacava – has required a med port and daily IV infusions 2 weeks out of every month. It has just been approved for oral dosing. My insurance has approved the switch, and by August everything should be in place. It will make living with ALS much easier!
Living with ALS … it is definitely the goal and a challenge. It requires putting aside the future, trusting God to take care of that, and living present in the moment of today.
In Philippians 4 Paul explains:
“10 How I praise the Lord that you are concerned about me again. I know you have always been concerned for me, but you didn’t have the chance to help me.
11 Not that I was ever in need, for I have learned how to be content with whatever I have.
12 I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little.
13 For I can do everything through Christ, who gives me strength.”
Please keeps us in your prayers. ALS affects every part of life, and everyone around me.
