Attitudes / Faith

Expectation vs. What If…?

Limb-onset ALS follows a more or less predictable pattern of progression, moving from the peripheral limbs inward. Every case is unique, of course, but those of us with this particular type of ALS pretty much know what to expect in terms of limitations.

I went from an active and very busy middle-aged woman to one who fell now and then, necessitating a more careful and slow lifestyle. Then came the walker. Then the AFO making driving impossible. The fatigue slowly shut down my housekeeping and cooking activities. Life, for me, came to a grinding halt, it seemed.

P1070303 (1024x768)Once the diagnosis was confirmed, we no longer thought about “one day, when Patty is feeling better.” Expectations changed. I would never resume doing the laundry, shopping, errands, or cooking. Scary thoughts, at first anyway.

After we had come to accept reality, we began thinking about ways to manage. Before we moved into our house here, we had doorways widened, a ramp installed, the bathroom made more accessible, and rented a hospital bed. Based on what we learned about ALS, we expected that eventually I would become totally immobile. That is the road we are on.

But, what if…?

Sunday, Christians around the world celebrated Easter, remembering that day Jesus rose from the dead. Jesus, the One who healed so many.

What if I were healed? Think about it for a minute. What if He decided, “Okay, that’s enough. This ALS is now gone from her body.” (Or words to that effect.)

What would I do first? I mean, besides thanking and praising Him profusely!?!

First of all, I would hug the nearest person! I miss hugging. I am the grateful recipient of lots of hugs, but I wish I could hug my husband and my kids and my mom and all of my family. I wish I could hug my friends. I would become a hugging fool!

Actually, perhaps the first thing I should do is take a nice long shower! Alan keeps me very clean, but it would feel wonderful to take care of this myself. It’s pretty funny, but I did not think of this right away. I came back and added this paragraph. This, from someone who used to shower every day, could not go to bed without a shower first, and was known to, on occasion, shower twice in one day. Funny, huh?

Next, I think I would need some time alone with my piano. P1060578 (1024x768)All of the music inside me needs to come out. All the stuff I learned by ear needs to be played again. Then I would dig out my music books and re-learn how to read music. It’s been a long time.

After that I would attempt to familiarize myself with my kitchen. I have no idea where anything is in there. Maybe I would fix myself something to eat. Then I would take an inventory of the foods on hand and decide what to make for dinner! Next, I would put on some “music to cook by” and get to dancing in my kitchen! Rattle those pots and pans!!

Before I could venture out on my own, I’m pretty sure I would need a refresher course in driving. It has been a very long time since I was behind the wheel. More than two years. I’m not sure how much I would remember. Maybe it’s like riding a bicycle and you never really forget?

Once I was doing pretty well driving, I would call up my handbell director, Joe, and ask, “Please, may I come back and play again?” :-)

There would certainly be a period of adjustment. It would be a whole new ballgame. Expectations would be completely changed. A new reality. A good reality, for sure, but still new.

I believe in miracles. They happen from time to time. Little ones happen every day. The big ones are more rare, but I know they happen.

Though I would welcome it, I am not expecting to be healed. At least not here. The day will come when I am no longer subject to the tyranny of ALS. And I look forward to that day!

God always gives His best to those who leave the choice with him.

Jim Elliot

Love, Patty

12 thoughts on “Expectation vs. What If…?

  1. patty….i wrote to you a few months ago and you were the first person to actually acknowledge…that my symptoms really sounded like ALS….i have seen several of your notices lately and have not opened them, i have been so confused…..a month ago they said i had MS and the next day they said i needed to repeat the test as several that day gave a false positive on a new machine…..i waited 3 weeks for a repeat..demanded an answer a week later and NO…MS.  many new symptoms lately….like neck twinges, pinky tremor and toe twitch, now having back twinges and my hand and foot cramps are worse….my psychiatrist asked me last month if i wanted to know the diagnosis and i said yes…he said good that he was glad….my neurologist app. is may 12th, i have not seen him since November…as i have all kinds of tests in between….your limb progression today follows my pattern, i use a walker all the time now. i just want an answer so i can plan ahead and deal with this for real…..thanks for being there.

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    • I think the worst part of this is not knowing one way or the other. Having a definitive diagnosis helps you to make decisions based on reality. But of course ALS is very difficult to diagnose. Pretty much it is a process of elimination. Especially if your progression is slow. I hope you have an answer soon. Hang in there. Patty

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  2. Patty: You are an inspiration to Peter and me. This particular blog is especially moving. We have moved to a retirement community where we are surrounded by people with various forms of limited motion. And yet, the place has an aura of happiness and acceptance. I certainly see the road ahead. . . . but, what if. . . . . Thank you, dear lady. Hope to see you and Alan on Saturday. Mary

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    • Mary, it was great to see you and Peter yesterday. (Ellie, too!) So glad you are enjoying your new place. Even though I think you are both too young! Thank you for the kind words. Patty

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  3. I love your blog today. I also have limb onset ALS & what you wrote is exactly how I feel. It is so hard to give up every activity. I was a physical therapist & how ironic I now have ALS. Keep writing as long as you can. Thank you … I am not alone in this journey.

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  4. I am sure you were happy to be a part of the Easter service and remember Christ’s
    resurrection. And yes, it would be wonderful if He would see fit to heal. I’ve had these
    wonderful healings along the way, and am so grateful for the measure of healing that is
    mine, but even greater will be the complete healing when I see Jesus. In the meantime
    I will try to be content with what I have. Much love, hugs, and prayers.

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  5. Hi Patty- I happened upon your blog this evening as I sit here with my mom tonight. She also suffers from limb-onset ALS. Your public journey is a gift to those who struggle to understand how to reconcile the love of God and earthly suffering. Her faith community has been a blessing through her progression and I pray often for those lacking this type of network.
    Peace to you-
    Kelli

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  6. Hi Patty- Kelli again. I spent most of my evening reading your older posts. Two weeks ago, my mother underwent the PEG tube insertion and I would be happy to share the first hand experience with you. She, too, was on “the fence” since her last clinic visit in February. Please let me know if you would like to know more about our experience.
    Kelli

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    • Hi Kelli, thank you for writing. I will answer both of your comments here. First of all, give my best wishes to your mother. I am so glad she has you and her faith community. I’m glad to hear I’m not the only one who waffles on the feeding tube issue. I would be interested to know how she is doing with the formula. Some have told me they experience nausea and this has me concerned. Is she still able to take some food by mouth? Patty

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  7. Hi Patty- the experience has been much better than expected. We were also told this wasn’t an urgent issue, but I am glad we did it when we did. When she and I discussed I encouraged her not as a life sustaining measure but as a comfort measure. (As a caregiver, the potential for choking is frightening to me to consider for her). From your notes I believe you are both in similar disease stage although her disease onset in arms rather than legs. She has much difficulty feeding herself but is able to swallow quite well. So, we embarked on this for nutrition supplementation and energy conservation. She still eats mostly by mouth with generally one formula supplement per day. We were told to take it slowly on the amount but have found she can tolerate nearly a whole carton at once and has had no nausea or reflux so far. She even said she thought she was sleeping a little better with a fuller stomach. The incision was tiny and has healed nicely. We purchased a tummy band to keep it tucked out of the way. The only complaint she has had is the proximity to the band of her bra since her posture is weakening. I hope this helps- everyone responds differently to each new aid, but for us this has been a benefit.
    Happy Monday-
    Kelli

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