[CF Devotionals] 2019-01-22 - Giving Thanks in January

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Warning: This devotional is a little longer than my usual, with an unusual format - somewhat of a testimony. Some of you have asked about how things have been going, and I feel that the Lord has put this on my heart, to share. I do so in the hope that it will give some insights and ideas to those who might seek to be a blessing, if they encounter a patient with a paralyzing or otherwise debilitating illness, whether in the family, neighborhood, church, work or wherever. For us, it is a“closure” of sorts. I apologize for the length, but as a good friend of mine reminded me, I am condensing a year into one page!

It may seem like an odd time to write a devotional on giving thanks, but January 16th was a big anniversary for Richard and myself - the day he had his first symptoms of Guillain-Barre Syndrome (GBS), the day he was diagnosed, and the day that would turn our year and world upside down. At this time, three years later, he is about 95% better. He still has numbness in his feet, nerve damage in his hands, and is supposed to avoid public places with a lot of personal contact such as hand-shaking and hugs - most especially during the peak of flu season. But he has said that even if these conditions are permanent, he can happily live with them. For he can again do 99% of his normal activities!

I would like to share a verse that applies to our version of 2016.

1 Thessalonians 5:18 (Young’s Literal Translation) In every thing give thanks, for this [is] the will of God in Christ Jesus in regard to you.

I have studied this verse, reading it in many versions, and as a grammar nerd, I couldn’t help but notice the prepositions. I do not claim to be a Bible scholar such as Pastor Geoff, but I have noticed that this verse doesn’t say that we must be thankful FOR everything. It says be thankful IN everything. I can get onboard with being thankful “in” everything, much more easily than “for” everything!

While we were in the midst of dealing with Richard’s paralysis, and even now, we both wish that Guillain-Barre Syndrome hadn’t taken over his body for most of a year. Neither of us can honestly say that we are thankful that he had GBS, or that he still has effects. However, there are some events and things within the situation, for which we are exceedingly grateful. Our list isn’t exhaustive, but these are things that came to mind.

  • The location of the onset of symptoms of Guillain-Barre Syndrome, which were sudden:
    There was NO warning at all. The previous day, Richard felt normal, and walked two miles with our dog Shiloh. The very next day, he suddenly couldn’t stand up; he kept falling down, as his legs just gave way.. Both arms and both legs were weak and numb. Pretty soon, he couldn’t feel his legs at all. What if this had happened when we were on vacation, hundreds of miles from home, or even just on a long walk down our road? But instead, when GBS symptoms first appeared, he was right here, in our own home.

  • The timely diagnosis by our local ER doctor who was on duty: In the diagnosis of GBS, time is of the essence. We spent eight hours of a Saturday in the ER, and the wonderful doctor not only diagnosed his rare condition correctly, but he also managed to talk to two neurologists on a weekend night. He even arranged to get them to agree to come by the Medical Center the next day, which was a Sunday. Staff there told us that this was unheard of, but there the two doctors were in Neuro ICU, doing a spinal tap and other confirming tests, then initiating the vital, corrective Plasmapheresis - all on a Sunday. Even after just one day, Richard’s tongue had already been halfway numb, and his Physical Therapist confirmed that if he had to wait even just a couple days for the diagnosis and Plasmapheresis, he would have likely ended up on a respirator. That would have caused a much more prolonged recovery.

  • We had excellent info from Day One. Both the ER doctor and the paramedic in the ambulance said “you are going to have a really rough year, but you WILL get better.” Soon, the neurologists would reiterate this. Throughout his time at both the medical center and Rehab facility, his skilled Physical Therapists reminded him of it, as well. Knowing this from the get-go was immensely helpful, in dealing with things one day at a time. On the most difficult days, we knew that there “was a light at the end of the tunnel."

  • The Medical Center near us was able to do all the protocols and procedures. This isn’t so, for everyone. For example, we have a friend whose family member had the same illness several years ago, and he had to travel to another state, for treatment. We were thankful that Richard’s two months in hospitals were within commuting distance of our home.

  • Richard DID recover, almost completely. Some people, with similar conditions that also involve the myelin sheath, do not recover. They remain paralyzed for the rest of their lives.

    * Please pray for these people when they are brought into your lives, learn a bit about their illness - and help them, as you are able.

  • We have excellent work-related insurance, and we were also able to afford all out-of-pocket expenses, which were pretty high. We had a rep who actually CARED about patients, and not just about saving money for the company. But even with the exellent coverage, 2016 was the only year in which we have ever actually counted medical costs off our taxes. Our out-of-pocket expenditures were over $17,000. While we have always tried to help those who are underinsurred, this experience gave us even more empathy for them, and we are praying earnestly (along with my letters to Congressmen!) that when they overhaul the health system, everyone in need will be covered, but with more reasonable premiums for them, less “Big Brother” intrusion than is currently reportedly suffered (Several people have shared with us.) - as well as retaining choice..

  • There were groups and individual friends who sent cards early on, right after he was hospitalized, and I put all those in his hospital room, to remind him of people who cared and were praying for him. And then, there were a couple individual friends and a couple relatives who remembered him and were very faithful in providing support throughout the entire illness - via texts, cards, calls, emails and several wonderful “snail mail letters” All through this process, we knew that our pastor was praying faithfully, daily, and wouldn’t stop until Richard was back in place at church. He would ask about Richard, and that meant a lot to us.

    * If you have a family member, friend, or neighbor with a debilitating illness, try to keep letting them know you haven’t forgotten them; it is very meaningful to know that people are continuing to think about you and pray for you.On this end, I wrote our church regular updates, so they would understand and have good info about his prognosis and progress. Prayers were appreciated. I also wrote both my dad and Richard’s parents daily.

  • My mother-in-law and I corresponded every day, and we both looked forward to the mails. I started out writing daily, just to keep them in the daily loop. But I found that I was looking forward to writing and hearing from them, too! These emails were a great blessing. We would talk with them on the phone regularly, and she would notice and point out Richard's gradually-improving voice. Since GBS didn’t affect Richard’s mental faculties at ALL, all of this was encouraging to him, to get this support. The only parts of his body that he could use at all, were his hands and mind, and as I explained to people, every conversation, question and “project” were vital distractions that aided his recovery. God provided me ways to help keep his mind engaged - via baseball, some good old television shows like “Perry Mason,” and some sincere needs of his assistance. It wasn’t “make work,” when I needed instructions on fixing a machine or putting together bird feeders, financial procedures etc.! 😁 One couple, who are special friends, brought by a blueberry cake, a couple times. Richard couldn’t eat much at all, due to the numb tongue, but he DID enjoy several small helpings of that cake! The male half of that couple also was the one I called, to be ready to see me in their driveway - one dark night on the way home from the hospital. My car locks wouldn’t work, and a car stayed behind me, even in good passing lanes, when I slowed down to 20 mph below the speed limit, just so they could pass me. I knew that our friend owned and knew how to use a firearm, if it were needed! Another member of that family, who happens to be a paramedic, helped us immensely with the Hoyer lift and vest. The vest was nothing like the one at the hospital, and had special and important features.These "everyday" helps made a big difference for us.

    * Special note to anyone working in a related field: When a patient is about to be released to family care, if you are the one responsible for ordering the prescription equipment for the home, please make sure that the patient’s family will be able to receive raining - or at least an instruction booklet - for the equipment - if it differs from the kind in the hospital! Not everyone has a paramedic friend!

  • Neighbors would ask about Richard when they saw me outside, and we appreciated their thoughtfulness.

    * They also helped to keep an eye on the house, during the rare times when I needed to be away.

  • Then there is a couple who were “in the trenches” with us. They even helped us find someone to roll our huge garbage can to the road. This was a BIG deal for us, as it was the chore of Richard’s that was nigh impossible for me, because it was so heavy, and it would need to be done every week for many months. They also helped with a couple everyday issues, like trying to help my non-spatial self learn how to do wheelchair pedals, lending us a family travel wheelchair for when I needed to take Richard to an appointment (when he was finally able to travel outside an ambulance, about halfway through the year). The female half was also one of my “safe places” for venting. The medical center was wonderful, with a knowledgeable, skilled and caring staff. But the second stop on the way home, a rehab facility, had a couple staff members who knew NOTHING about GBS and didn’t bother to learn, though it wasn’t for lack of trying on my part! I even printed out NIH info for them and diplomatically gave it to them!

    The friendship was a praise, but another is that we think that Romans 8:28 came into effect in that situation, because in our “ exit interview,” we were asked very extensive questions about his treatment by staff there. We were eager to give A-pluses and NAME NAMES, for the outstanding ones. But withOUT naming any names, of course, for the ones who were “bad actors," we did mention incidents, so as to try to PREVENT future patients with rare illnesses from having to go through the same difficulties. One of several examples would two nurses who were talking where he could hear, about how he needed to stop worrying about turning over, even though the doctor had ORERED it every 2 hours, and he was totally unable to move his own legs and back!!. We did deal with that inexcusable situation, but it was repeated!! This place had some GREAT staff, but also a couple lazy, uneducated and uncaring folks. So we also implored the staff to make sure that the next time a patient with a “rare” illness came in, that the relevant staff would be trained about that illness, and how it differs from their usual patients they are used to, who come in with broken bones etc. Our goal was to prevent a repeat for other patients, for we are confident that Richard won’t be the last one with something “rare."

    * For the patient's family, it is a balancing act. You need to advocate for your loved one/patient, but you can’t afford to alienate the people caring for them every day, for I know that they can take it out on the patient, when you aren't around. So prayerfully consider words and actions in these situatons. At my first Atlanta workplace, one of my nicknames was “The diplomat,” and I would advise putting on that diplomat hat on, for these things!

    I had a couple friends that I had met through this devotional ministry, who would write regularly with support. One of them has become a special friend, with whom I also share interests including a television show that she and I watch (Tyler Perry’s Greenleaf is recommended!). Her continued prayers and notes were encouraging to both Richard and myself.

  • Someone capable diligently filled in for Richard for nine months, until Richard was able to use his hands, to again fulfill his responsibilities.

  • We had a cardiologist / friend who gave me his personal cell number, and gave us an open-ended offer of help, at any time, if we needed to get him into Emory. He lovingly grilled me on all the things our Medical Center was doing for and with Richard, and at the end of that conversation, Dr. E was convinced that Richard was in very good hands with them! But it was a good feeling, just knowing that if we ever DID need his help, he would be there for us. He was also frank, and we yearn for that in all doctors!

  • Shiloh and I stayed well. What if we were sick at the same time, or even if I had gotten GBS, as well? Richard and Shiloh needed me!! We were incredibly thankful that I was able to maintain good health all year long, since I was his only caregiver.The home care team were a PT and OT who only came for two hours a week, a PT and OT doing limb exercises. We wouldn’t have had it any other way. We wanted to “do it ourselves,” for several reasons! But on a practical level, we're also thankful I was ABLE to do all the care. I admit that I had my doubts with the Hoyer lift; I am not the world’s most mechanical person. But finally, we figured out my quirky “center of gravity.” The only thing that went awry was a dental issue - and avoiding hot liquids allowed me to put off that appointment!I only wanted to leave him, when absolutely necessary.

    * When someone doesn’t want visitors, try not to take it personally! Richard didn’t want ANY visitors for awhile. I feel VERY strongly that this should be the patient’s choice - not just because of the federal HIPPA law (though that is important). But it was HIS illness, HIS body, and HIS decision. His desire for no visitors was primarily because of the effects of GBS on the body, which he worried would be misunderstood, even though we did explain when needed. For Richard and others with GBS and other paralyzing illnesses, the patient loses conrol of body functions and usage, so there are privacy issues. And as one example, some body parts become misshapen. In Richard’s case, his hands were weak, drawn and clawed for awhile, and he knew that would freak some people out. We both knew that it was absolutely expected and normal  - AND temporary. But he felt (and I agreed) that some people would have really been upset by that.

  • We have been able to give encouragement to others with GBS, and we strongly hope and pray that will always continue. If anyone reading this ever knows anyone who could benefit from talking with someone who has “been there,” feel free to give them this email address!! At our first Atlanta church, a sign at the end of the parking garage said “NOW you are entering the mission field.” We LOVE that concept, and consider this a new little mission field for us.

  • One wonderful thing is that we never got mad at EACH OTHER! That would actually have been a normal part of such a process, and we were very blessed to not have THAT happening. But yes, we did both get angry with God a couple times. I admit that. I was very frank with God, and talked with him as if He were in the room! After all, he WAS there with us, and it is silly and dishonest, to just pretend, when God knew what I was thinking, anyway. It helped to vent about my thoughts about God. Richard encouraged me to do that, because he said it would raise my BP and hurt MY health, otherwise. He was right, as usual. I knew Richard was a good person who “didn’t deserve” GBS and in that sense, it was “unfair.” As Richard would say several times, he did everything he could to always do the right things, and why did God do this to him? He knew no one could answer, but it is a normal and expected stage, and to say otherwise would be dishonest and probably hinder emotions recovery, to deny his REAL feelings. My own anger at God was also was meaningful to Richard, since he said that he felt that was supportive of him and meaningful to him.

    * Remember, it is your loved one’s decision, about how to handle things, as long as they aren’t in danger of harming themselves! It’s okay, if they don’t deal with things like you do, or in a way you feel is best for them. It’s understandable to want to help them, but how to deal with it has to be their decision, as long as they are mentally competent. In our case, Richard had 100% of his faculties, 100% of the time! As Frank Sinatra sang, we each have to do it “our way.”

    We both knew, also, that neither did Jesus deserve the cross, nor did Job deserve his losses, nor did our 50-year old friend/pastor deserve his brain tumor death. My dear friend doesn’t deserve leukemia, and so close to when she lost her husband, too. My best friend from work didn’t deserve to lose her husband so young, and another good friend from work didn’t deserve to die at such a young age, from a terminal illness. I still cannot believe she is gone. I still miss being in touch with her, and I can’t imagine how her family feel. I could go on and on.

At the end of the process, the first-day info was absolutely on target. It WAS a very difficult year. We still do not know “why” God allowed this to happen, and in all honesty, we both wish that Richard hadn’t had to go through this. But we were able to talk with each other (Richard's choice was NOT to involve our pastor in that.) and work through the doubts/frustrations with God.

Bottom Line: In spite of all the negative issues of 2016, the bottom line is that Richard DID recover, and we DO have MUCH for which we are thankful, EVERY DAY!!! This is likely the last devotional that I will ever write about GBS, but I wanted to share “the rest of the story” with you guys. For those of you who prayed and cared and wrote, thank you ever so much. We are thankful for YOU. We enter 2019 in a thankful state!

[email jan] Janice P. Moser

http://www.cfdevotionals.org

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All verses are from the New American Standard Version (NASB) unless otherwise noted.


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