“A Living Sacrifice”   – journal entry by Mrs. Donna Hart – May 8, 2020

Two years ago today my new normal began, and I started down a path of hospital stays and tests that would eventually end three months later with a diagnosis of ALS.  It is almost becoming hard to remember the person I was before. I watch people scurrying about and wonder if I really used to be able to do that too…could I really walk out the door, jump in the car, and drive somewhere without giving it a second thought? Could I really just wander all around the house, cook a meal, do the dishes, run the vacuum?
🌊🌊🌊 “I have learned to kiss the wave that throws me against the Rock of Ages.”” 🌊🌊🌊
~ Charles Spurgeon
Have I reached the point where I’m ready to give ALS a kiss?? 😳 Well, no, I can’t really say that…I don’t love this wave, at least not yet, but I do love the Rock of Ages that it has crashed me against…and I think I can identify with the idea of “learning.” I was trying to figure out how to describe for you the peace and joy that I have…I couldn’t even think where to start, and that’s when it hit me…it’s a peace that “passeth understanding.”  It makes no sense from a human perspective that I should have such peace, or that, for the most part, I look forward to each new day with a sense of joy, but I do.
So, here I am again trying to condense a year into a few paragraphs! If I updated more often this would be easier, but that’s probably not going to happen! 😁
Let me start with an update on physical stuff…as I compare where I am this year to where I was last year, I can see changes. Some are bigger, some are smaller, but honestly, in spite of all of them, I am doing very well overall. We are very thankful that my progression seems to be fairly slow. Even so, all the changes do eventually add up. One change is in the area of walking…up until a few months ago I was able to walk short distances with a walker. After taking a pretty good tumble in the bathroom a couple months ago, we gradually decided that the risk of falls and injury was outweighing the benefits of continuing to walk.  So I pretty much am in my wheelchair now and have switched to doing “seated exercises” throughout the day.  Two or three times a day I also stand and march in place with my walker in front of me and my chair right behind me in case I need it in a hurry!
Another change, and one that is especially hard, is that my hands are beginning to not cooperate at times.  I have wanted to bargain with God, “OK, I’ll give you my legs if you’ll let me keep my hands!” But for some strange reason, God doesn’t seem too impressed with my bargaining skills! 🥴 For the past several months, I’ve been thinking alot on the idea of sacrifice…it started when I saw an acrostic for ALS that called it “A Living Sacrifice”…that really stuck with me and encouraged me, and I’ve kind of adopted it as my own…so as I’ve been thinking about the concept of sacrifice in relation to my hands, I am coming to realize that unless a sacrifice involves surrendering something that means a lot to me, it’s really not much of a sacrifice, is it?
Probably another area to update on is my breathing. It seems to be holding steady, and as far as I can tell is staying about the same. I’m on the vent most of the time, but can get along okay without it for showers, bathroom trips, etc.  My swallowing, which is another area sometimes affected, is still fine.
Something else I wanted to tell you about is some of the amazing technology I’m benefiting from…
…I mentioned my wheelchair…we got evaluated and measured for it last June and it didn’t arrive until just before Christmas, but it was well worth the wait! After the learning curve that seems to accompany all this stuff, it’s been wonderful…and I’m a pretty good driver if I do say so myself! (As long as you ignore a couple door frames that are looking a little worse for the wear!) We also were able to get a wheelchair accessible van…a Dodge  Caravan with a side entry ramp. The front passenger seat has been removed so I can drive right in and park my wheelchair in that spot.
…a project I did this year was voice banking. This involved recording over 3000 sentences that were then used to make a digital copy of my voice.  If at some time in the future I’m unable to talk, I’ll be able to use a computer to talk for me and it will sound reasonably similar to my voice!
…and, I’ll be able to run that computer with my eyes if my hands have given up by then! I’ve received my eye-gaze computer, but still am in the process of learning to use it. (That learning curve again!)
One thing I’ve learned this year that has been wonderful is how to talk even while on the vent.  In case you don’t know any more about vents than I did, here’s a quick 101:  when I’m on the vent, a flexible hose goes from the vent to the trach in my neck. The trach has an inflatable cuff (think balloon) surrounding it on the inside of my throat. When the cuff is inflated, every breath that the vent gives me can only go one direction – down, to fill up my lungs. None of it goes up past my vocals chords. This is great for breathing, but not so great for talking! That’s why, for the most part, when someone is on a vent they can’t talk. For someone who likes to talk as much as I do, that was kind of miserable. After a few months, I learned in a discussion forum on Facebook that it’s possible to deflate the cuff a little, allowing some air to go up past the vocal chords and making it possible to talk while still getting enough air to breathe!  Eureka!! This has been wonderful! I sound a little choppy when doing this…it works best to talk in short phrases and then pause until the next breath, but once I get started talking I generally just keep going! If you remember ever hearing Christopher Reeves talk after his accident, he had the speaking and pausing  perfected. However, choppy or not, it is still wonderful and I’m so thankful to be able to do it! (I did check with my pulmonologist to make sure she was OK with this idea.)
I mentioned the forums that are on Facebook. They have been a great source of useful information from fellow pALS who know what they’re talking about. This is helpful because we’ve discovered that finding a doctor with experience in trachs is hard. Finding one that has experience in both trachs and ALS is even harder. I would have told you that I had a pretty good knowledge of ALS going into this, but two things have blown me away…one is the sheer number of people who are affected by this disease, and the other is how many young people have ALS…people in their 20’s & 30’s, teens, and even children!
These forum groups on Facebook have also been both a great encouragement and a great heartache. It is a great encouragement to see the strong, faithful testimonies of several who are brothers & sisters in Christ.  I value their friendships even tho I have never met them. At the same time, it is a great heartache to see the other side…those who are so angry and bitter at ALS, at God, and at the world in general. It is heart-wrenching to see their absolute hopelessness and despair because they believe that this life is all there is…that nothing better is ever coming…that this is as good as it’s going to get. They want nothing to do with a God who would give them ALS…and I get that…in all honesty, it was a battle I had to settle in my own heart too. 💔
Spending time interacting with others in these groups really causes me to stop and count my blessings. It is far too easy for me to begin to lecture them in my mind about their thoughts and their attitudes, but then God patiently reminds me that I can’t begin to understand the hard circumstances some of them face.  Instead, I am blessed with a support system of family and friends that is second to none.  Friends check in often with texts and messages, my sister and brother-in-law come often to help, our kids maintain a steady stream of visits to encourage us and help with projects, and my husband is the most amazing caregiver ever. Even after all these years of observing  his patience, it still amazes me to see his patience in these circumstances that are so all-consuming. The less I’m able to do, the more he has to do…and he does it lovingly and patiently. I could say that I don’t know how he does it, except that I do know…he personifies Christ’s love to me every.single.day.  Well, pretty much, anyway…I did get kind of a dirty look the day I ran over his toes with my chair…who knew that a measly 450 pound chair would get that kind of reaction? 😜
(When I had him read this post to get his suggestions, he said he’d rather I didn’t mention him at all…I told him this part wasn’t up for critique!😘)
Anyway, all that to say that I’m convicted that I need to respond to others with the same compassion and love Christ showers on me.  If I don’t, I am missing a huge opportunity.
One “above and beyond” blessing from the FB groups has been an open door that came about through contact with a man who was looking for some help doing graphic design for the ministry he founded. He lost his wife to ALS a few months ago, and had come across some graphics I’d made with the living sacrifice acrostic and Romans 12:1. I am thoroughly enjoying this opportunity for ministry, and the time spent meditating on the verses while illustrating them has been a real blessing…all the more reason to get this eye-gaze computer figured out!
Speaking of kids…ours are all doing well. For the first time in many years, we’re all living in the same time zone, so we enjoy being closer! Our grandkids are, of course, adorable and our fridge is always very well decorated! 🥰 Every so often we take advantage of Zoom to stay in touch a little more, but mostly, we pretty much single-handedly keep Whatsapp in business! On a good day, it’s not all that uncommon for us to have upwards of 100 messages, pictures, and videos flying back and forth! 😳
While it’s true that we are striving to live each day as it comes and not look too far down the road, we also realize that a little bit of looking down the road is necessary as far as our church is concerned. We don’t know what is in store or how long God will enable us to continue here, but some preliminary plans have been put into motion for a change in the leadership of the church, as well as some housing options for ourselves.  This has been kind of harder and more emotional than I thought it would be (although I really don’t know why I should  have expected anything different). After many years of trying to be a support & help to my husband, it’s a hard thing to know that I am now the reason we are making these plans…I know in my head that it’s not my “fault”…but it’s still a work in progress to get that knowledge down into my heart.
🙏🙏🙏So, as we head into this third year…
…pray for us…without God’s help, we would truly be lost and hopeless. With His help, we have everything we need.
…rejoice alongside us…that the good moments and good days totally out-number the bad.
…be thankful with us…that God’s mercies are new every morning, and that each day, without fail, we get the grace we need for that day. This has been true every single day of these past two years, and we have no reason to doubt that it will continue! 💕