Plateaus-Then and Now

There has been so much written about the Mountaintop and Valley experiences of life. There are many devotionals and books written that talk about “the need for the mountain top exhilaration so that we are able to navigate the many valleys that come our way in our day to day lives” I found this to be especially true both at the outset of my Guillain Barre and now in my recovery from this crazy auto-immune system disorder. It was 16 days before I saw any significant movement anywhere on my otherwise motionless body. The doctors and nurses all said I was improving but there was not any clear signs of that progress. I certainly was glad the progression had stopped short of my diaphram as I had no interest in being incubated. Once the diagnosis was made, I started Plasmapheresis (plasma exchange) on March 3rd. I was told some parts of me would start moving a bit between the 3rd and 4th of 5 treatments which were every other day. The last one occured on March 11th with no such signs. I was discharged to a rehab facility from the hospital on March 13th. “How could this be happening”, we asked. The answer was you are getting better and there is nothing else we can do to help you at this point. Just like walking on a plateau, you travel a distance and feel like you have not really made much progress. This was certainly true for me. It is easy to get discouraged when you hit a stabilized point in recovery. In one sense, you are relieved that you are not getting worse but you find yourself fighting the advice to be patient, “you are and will get better”. Trusting and putting my hope in the Lord along with leaning on and appreciating those who were cheering me on got me through those days and kept me from the fear of thinking, “what if I don’t get better?” On March 17th (St Patrick’s Day), my arms moved over my head. I am not sure what made me think they would, all of a sudden, there they were. I even scratched my head as I lowered them.

Things took off from there. My body started waking up and the recovery process was nothing short of miraculous. When I was admitted to the rehab facility, they noted in their records that they expected me to be there until the end of June and leave using a walker. Praise God. I went home on April 25 with the assistance of a cane. Within a couple of weeks I was walking in the neighborhood.

I have continued to recover over these last 8 months. The doctors and physical therapists say I am at about 80%. Given that the data shows it takes 6 months to 2 years, this is pretty good progress 🙂 and yet, I feel like I have now reached a new plateau. My weight loss has slowed and I still need to rest in the middle of the day and call it a day early in the evening. I can get discouraged but thankfully my positive can do attitude, the support and encouragement of family and friends, the prayers of so many being answered and substantiating my faith in a healing God keeps me going. Like on any journey, I just need to look back to where I started to see how far I have come to be reminded that I am indeed blessed. It allows me to know that I will once again move upward toward the next plateau.

one must look back to get a sense of how far they have come.

What’s next?

Phillippians 3:13,14 “Forgetting what is behind and straining toward what is ahead, press on toward the goal to win the prize of God’s heavenly calling in Christ Jesus.” As I lay in my bed day after day not being able to move, this verse took on new meaning for me. I can not explain why but as I have shared before, I did not focus on “why Guillain Barre had happened to me” but instead “what do I need to do to get better?” I also felt very strongly that I wanted to be obedient to God’s heavenly calling by showing my trust in Him to those that cared for me, came along side and supported us, or just came to visit. Dan Allender talks about making a chose when calamity occurs. “Will you allow it to break you or lift you up?” I chose to look at the positive by seeing how God could use it for good in my life as well as being an example for those who were watching how we would handle this ordeal. I read somewhere about the opportunity to turn “a mess into a message” I wanted that to be what people saw in me. In a Jon Gordon podcast, I heard that after the UVA basketball team lost to UMBC in the 1st round of the NCAA basketball tourney, head coach Tony Bennett’s wife encouraged him in the strangest way. She said, “God has given you the privilege to suffer and experience adversity so that you can show that your faith is real and what defines you whether things are good or bad”. I wanted to be a reflection of the passage in James, “My brethren, count it all joy when ye fall into divers temptations; Knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.” My goal became turning the mess called Guillain Barre Syndrome into a message. Therefore…..

Dottie and I made the conscious decision to stay in the moment choosing the attitude of let’s not get ahead of ourselves but instead focus on What’s Next? We did not google GBS because we didn’t want to have worst case scenarios in our mind. The Doctor asked us how much we wanted to know and we said, “just what we need to know now.” That way we could deal the current circumstance and then ask what needs to be done now to move us forward in recovery. Noone really told us but we just felt it best not to dwell on how long it would be before I could move or when I might be able to go home. This decision served us well whether we found ourselves discouraged or when we could see signs of improvement. It kept us in the moment. Grateful for the slightest movement, passing the regular respiratory tests, better sleep, uplifting visits from friends, etc. It also kept us focused on the tough days knowing that if we kept doing what the medical staff said was next, things were going to get better. This attitude is the reason for this blog’s title. We became Thankful in all Things because we believed God was with us, loved us, and that He was in control of what was next for us. We committed my health and recovery to God and clinged to the promises of Hebrews 13:5 and Romans 8:28, ” He will never leave us and will make good out of every situation.”

Things happen for a reason and Good Things can come from it. “All because of a cookie”

Romans 8:28 New International Version (NIV). 28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 

Karen Scott writes, ” Sometimes, just a few minutes of time and attention is all the gift another person needs. Sometimes, you get the opportunity to communicate with another person that you value them, that they matter are important, that you hope that their lives matter in light of eternity. Never doubt that a gift of your time and attention is valuable. You can hold it in your hand or choose to give it away”

I am a staunch believer in “the ripple effect” of life. As the title of this post suggests, I also believe things happen for a reason and “there is a silver lining in every cloud”. My journey through adversity via my battle with Guillain Barre Syndrome did nothing to dampen that belief. Why? My family and I experienced 1st hand people choosing to give away their time and attention so that they could encourage and support us. My life has also been made different by GBS. As I have written before, I hope I will always remember the positive things that have occured because of this now almost 8 month recovery process. Out of the dark clouds of what was a significant health challenge came new friends, deeper existing relationships, a renewed commitment for taking care of myself, and stories about other people’s lives being made better because of how we inspired or cared for them in some way.

Here is one little tiny story of how the Lord used my illness and the offer of a cookie- Taken from an email from a friend. “One day, there was this Christian man at a local Health and Rehab facility, being cared for by a friend who was a CNA.  This man with GBS offered her a delicious cookie, she asked who made it, you mentioned the name of a friend . . . and shooting stars went off.   :-)))  This patient didn’t know about a long relationship between the CNA and the cookie maker. However, one VBS evening at Abundant Life in July, when I was looking for more children to round-up, there was the CNA and we had a big hug and quick reunion-style chat about meeting the Christian man, the cookie, and reconnecting with the person who chose to take the time to make cookies for the patient.  She also happened to mention proudly that her daughter loves to read the Bible and loves to read it aloud to her!  Wow, so encouraging . . .  so the twins did do a few nights of VBS and loved it.”  The email went on to say it didn’t stop there. My friend asked the CNA, “have you ever thought about sending the twins to a Christian school?” . . . She was interested, but cautious about what it would cost……

Fast forward a few more weeks and only a couple of brief texts . . . and suddenly, God brought it all together and there were enough scholarships left at a local private school for both of the CNA’s daughter to enroll! 

The moral to this true story is, if you get the chance, don’t hold back the cookie, your time, or whatever else you can offer. Instead give it away and be time and time again amazed at how your gesture will be turned into good many times over.

Our brain is really like a computer

My 12 days at UVA hospital were miserable. It was so frustrating to not be able to move and even more aggravating to not be able to sleep. Ask those who know me and they will tell you sleeping has never been a problem for me. My son-in-law Ben has a folder on his computer with photos of me sleeping pretty much anywhere. That was not the case for many days. Here is a post from my Caring Bridge site on the 10th day. “Dottie and I are so grateful for everybody’s love and support. Life has definitely thrown us a curveball, which unfortunately I never could hit very well….But with your wonderful words of encouragement and knowing God is with us, we will get through this. Please pray for continued movement….and a good night’s sleep.” Becca wrote, “He had a rough night last night and is having more difficulty finding that “comfy spot”.  The plan is to try some medications to help with nerve pain as well as some Tylenol, so we are praying for some more rest and comfort throughout the night tonight.” My son, JM wrote on “Dad is more and more uncomfortable with the small signs of improvement and an increased feeling and awareness. Dottie is doing her best to keep him relaxed and their love is tangible even in this time of struggle. ” 

Why do I share these things. Because a little more than 7 months later, these very tough days and nights are still etched in my mind but not as the minute by minute struggle they were at the time. I titled this post “our brain is like a computer” for a reason. Every so often, we need to defrag our computer so it can run faster. When you do that, the information you have saved does not go away, it gets compressed in some way to create more space for other programs to run. Psalm 30:5 says, ” For his anger lasts only a moment, but his favor lasts a lifetime; weeping may stay for the night, but rejoicing comes in the morning. ” 2 Corinthians 4:17 says it a different way-
“For our light and momentary affliction is producing for us an eternal glory that is far beyond comparison.” I am grateful that I am getting better but in a weird way I want my brain not to compress my memory of how I felt in the darkest of my time in the hospital and in rehab because I learned that God was there and His favor does last a lifetime. I also learned what a blessing it is to have people who truly care come along side to help in whatever way they were asked. As mentioned in an earlier blog post, by dealing with the adversity of Guillain Barre well, “I have been given a ticket to a place I would never have been able to go” I have become a different person. A quote from a friend on a different Caring Bridge says it best.  “I’ve spent deeply meaningful time with my family and closest friends. I’ve been a better father and husband. I’ve shared my story openly, and learned to let people help our family in ways big and small while looking to find ways to encourage and support others”. Dottie and I remain so thankful for your friendship and care. Your support gives us hope, comfort, peace of mind and encouragement during what has been a tough season.  We will not forget. We will always remember.

An update on my road to recovery #180project :)

For those of you who have found this blog, you know it started with the encouragement of many who said I needed to write about what I have learned from having and now recovering from Guillain Barre Syndrome. I thought I would post this AM what I wrote the other day for those who have followed my journey via My hope is that I won’t post there any time in the near future but will share my “lessons learned” here instead. Here is what I wrote.

I am happy to write that this will hopefully be the last update here for quite a while.  No, I am not fully recovered but over the last six weeks, I have made significant progress.  The most recent pictures in the gallery tell the story.  1) my handicap parking permit expired yesterday and we see no need to renew it.  2) I recently accomplished a significant goal of running more than walking a 5K with my good friend Kaitlyn who participated with me after having a heart transplant in November of 2018.  (You can read more about this on my most recent blog post ) 3) I played 50 holes of golf this past Tuesday to help raise money for FCA/AIA and 4)  after 2 and 3, I was able to travel to Harrisonburg Wednesday to teach Realtors how to reach the full potential and the importance of surrounding yourself with the right people.  Many of you know my recovery has been renamed the 180 project.  I am happy to report that my weight is in the 180’s and I continue toward doing a complete 180 from not being able to move at all to being in the better physical shape than when I was struck with Guillain Barre Syndrome.  Dottie and I ask that you continue to pray for a complete (I am now at about 80%) recovery and hope you will follow my “lessons learned” by reading the blog I mentioned above.  We and our entire family are grateful, blessed, and so very thankful for your love and support.

Perseverance in Recovery because of the support of others.

Hebrews 10:24 exhorts us to “consider how we may spur one another on toward love and good works”. Yesterday reminded me again what others support has meant to me and Dottie through this #guillainbarrerecovery. I checked an “I am getting better” box as I finished a 5K run in under 36 minutes which was my secret goal. http://joined_video_7ecde852c0494045b16d41de32bf8540 A wonderful team of people came to run with me including our sweet friend Kaitlyn who had a heart transplant less than a year ago. Her father texted my on June 13th that his prayer was that both of us would one day be well enough to do a 5K together. 4 months later we both turned that prayer into a reality. It meant so much to have folks show up to support us along with the many encouraging messages from those who couldn’t be there. From day one, this was a recurring theme for us as we battled through the early days of being unable to move and the uncertainly of would I get better. It continued as we persevered along the very difficult path of regaining movement, muscle strength, and stamina. People made all the difference. From close friends to folks we hardly knew. Everyone found their way to help. Lisa and Lisa started google lists so that we had lunch brought in every day and I would have someone with me every night over the weeks where I couldn’t move. They served Dottie by showing her they knew that lunch was her favorite meal and that she wouldn’t eat much dinner. They also knew she wouldn’t go home unless someone else was there with me. What a gift. Having someone with me every night was such a blessing as was knowing Dottie was sleeping in our own bed. People stepped up in so many ways;Too many to list here. Our pastor talked about the amazing Dunkirk troop rescue by the English people. Owners of all size boats crossed the English channel to bring home several hundred thousand men. It was another reminder of the way aid and support came our way. As I shared in an earlier blog post, folks found ways to carry me to Jesus through prayers, visits, cheering at PT sessions, UVA swag :), and posts on Dottie would sit and read them to me which brought the peace that Paul writes about in Philippians 4. I can honestly say I would not be as far along in my coming back from GBS had it not been for the encouragement we have and (as evidenced by the run Saturday) continue to receive along the way.

Grateful to have these folks show up to encourage us along the way

Love conquers all

The power of others love and support

It is interesting now to try and bring back the memories of being in the step down ICU unable to move anything but my head and a couple fingers and toes. Those days and nights were so miserable. Totally dependent on others and not being able to sleep. I never want to experience it again but I want to hold on to the more desperate I felt, the closer I felt to God and allowed myself to be uplifted by others. I have already written about my Doctor friend promising I would get better. My daughter Becca (with her medical background) was next to put things in the proper perspective. She shared with Dottie and our two other children, “this is not good but it could be so much worse. We are in for a long rough stretch but it isn’t a stroke, heart attack or him being diagnosed with some type of long term or terminal illness” It made me think back to when my Dad was at Walter Reed hospital in His last days. Becca (23 then) is the one that made such a great point then as well. “Dad, Papa has had a long well lived life while these young men and women are coming back from war fighting now for their lives. “ From the very beginning, God made His presence known through the amazing and constant care of family, friends, and people I didn’t even know. A few months ago, I sat on my porch and made a list of those who went the extra mile for me and Dottie. I was stunned by how long the list was knowing many folks have to suffer through these types of things alone or with very little support. This was written on the original post and to this day remains so true. “We are grateful for Michael’s prayer warriors and fans around the world and know that you will lift him up and channel your love and positive energy toward Michael, Dottie and all the Guthries.” This is just as true today as it was back at the beginning of this unexpected season of my life. I look forward to sharing specific examples in a future post of how folks leaned in to help move us forward. It has been truly remarkable.

Be careful what you pray/wish for……..

As I advance in age, I have begun to read the obituaries on a daily basis. It is not just about seeing who has passed away, it is also because I want to have the opportunity to comfort friends who has lost a loved one. A few months back, I came across the obituary of UVA professor Walter Hauser He had been diagnosed with Guillain Barre Syndrome when he was visiting India. I was struck that, after his recovery, he made it his mission to visit anyone at UVA hospital that was admitted with GBS.

I have felt compelled to do the same now that I am slowly but surely recovering and therefore am out an about on a regular basis. I reached out to several people and shared my interest to be of help. I had gotten no response until this past Friday. A friend reached out to me last Friday who had been such a blessing to Dottie and me while I was at UVA. He has followed my recovery via Facebook and now this blog. He asked if I would be willing to come see a patient with GBS at the health care facility where he works. I, of course said yes, but then nervousness and a bit of fear entered into my mind. We set up a time for Monday at 3. I knew this was something I needed and more importantly, wanted to do, but was struck by questions like; “what would it be like to see this person in a bed just like I was a few short months ago? Ridiculous thoughts life, “Am I sure GBS isn’t contagious in some way?” And finally, “would I be the right kind of visitor who could provide some sort of hope for this person in need”

I decided to reach out to my wife and a couple of friends to ask them to pray for me remembering that Matthew 18:20 says, “where two or three are gathered together in my name, there am I in the middle of them” Another friend sent me an awesome verse-Deuteronomy 31:6 which says, ” Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.” And finally Psalm 56:3 that reminded me, When I am afraid, I put my trust in you Lord. “

Knowing folks were praying and armed with these biblical promises, I met my friend and we headed up to the patient’s room grateful to have the privilege of helping someone dealing with adversity. She was a young woman that was having a much more difficult time than I ever did. She had been ready to leave rehab and relapsed. My plan was to stay 20 or 30 minutes and was there for an hour and a half. My hope was she could see me after 7 months so that she could see recovery is possible. I now was on the end of the bed saying, “this is tough, you could get worse, but you will get better” A colleague of the person who asked me to come sat in the room while I was there. When I apologized for staying so long her answer was “No. It was super helpful. Thanks for taking the time – she clearly needed to have that conversation.” 

I was sensitive to not over stay because Dottie and I have learned what it means to be visited in the hospital and in rehab. There are good ways of doing it and there are not so good ways. I will give you my own personal thoughts about how to visit and why it is good to do so in a future post.

The doctor was right, it did get worse

After my doctor friend’s visit, I really don’t remember much about that first Saturday. I am guessing it is because we were pretty much in shock. I have always been a pretty healthy person. In fact, this was my 1st overnight stay in the hospital since I had my tonsils out when I was 5 or 6. I woke up Sunday morning (Day 2) not being able to move anything but my head and a couple fingers and toes on my right side. Things had indeed gotten worse. Although my body not working, I don’t remember being scared but that changed when we met with the neurologist for the 1st time. After he did his assessment, his words, “we are gravely concerned” got my attention. He then said “there is a 78% chance you will be on a ventilator w a breathing tube within the next 24 to 48 hours. Tears streamed down my face and like I could do anything about it i said, “that is not going to happen.” I believe the prayers of many people intervened as thankfully, the tide of the effect of Guillain Barre stopped my shoulders and did not impact my respiratory system. Every time the respiratory therapists came in I made sure to pass the suck/blow tests with flying colors. One humorous side note. I had never gotten a flu shot thinking “why allow a virus into my body when I never get sick?” UVA is a teaching hospital so many folks came in to examine me. Everyone asked, “did you have a flu shot?” I thought they were trying to make me feel guilty. Like if I had gotten one, this wouldn’t have happened. It turns out it was the exact opposite. Next time you get your flu shot, read the fine print. It turns out, getting a flu shot can cause the Guillain Barre Syndrome. This crazy, rare, and scary health ordeal had taken its toll. Doctors and nurses were clear. I needed to be strong and patient as this was not going to be a short or easy stay on North wing at UVA. It was time for Dottie and me to start leaning on our faith and the amazing support of friends and family.

My first ambulance ride

Friday, March 1st I fell and couldn’t get up. My legs would not work. In another episode of “Welcome to the stupid family” for some reason Dottie and i did not call 911. In our defense, we had just come back from the ER where we had been told I was dehydrated. It was 10:30 at night so I army crawled using my arms and with my wife’s help we got me on the family room couch. How silly to think that like a plant, we could fill me with water and I would be better in the morning. That did not happen. It was a fitful night. By morning, I couldn’t hold on to a cup and my arms felt weak. I was not getting better. We called a couple neighbors, David Williams and John Greene to come help me get in the car. They got me off the couch but I was 215 ( more on this later) pounds of dead weight. We looked at each other and all came to the same conclusion; time to call an ambulance.

Within minutes, Albemarle EMT’s were at our house, had me strapped on the stretcher, and placed in my VIP spot in their vehicle. The ride to UVA hospital was surreal. Travelling on a familiar route viewed out the back window of the ambulance. Lesson learned. When you arrive in an ambulance, there is no having to wait to be seen. Unlike the 2 1/2 hours we waited the night before, I was wheeled right in and the staff in the ER immediately went to work trying to figure out what was going on with me. Nothing against Martha Jefferson but in a weird way, I was glad I was misdiagnosed the night before. I could tell this was something serious and I felt that being at a teaching hospital was the best place to be. Later that day, that thought was confirmed by a good friend. After some tests, they were pretty sure I had been hit with Guillain Barre Syndrome. Two things were done while in the ER where i questioned my desire to be in a teaching hospital. First, they decided to do a lumbar poke. I was asked if it would be OK if the medical resident did the procedure. Being a team player along with pretty much not being able to move, I acquiesced. The second procedure made me thing twice. The decision was made to do a catheterization procedure, the lead nurse wanted to have the nurse she was training do her first one. I went along with it but my thought was, “people need to learn but couldn’t the experienced nurse please do this one”. All joking aside, I was struck by how calm I was given what was going on with my body. I was so glad Dottie, my rock, was by my side. That has been a recurring thought throughout my recovery.

I was moved to the step down ICU. Two things happened that made me aware that God was present. 1) the first nurse we met as I was wheeled in my room was someone who went to my church. She saw my name and said, “you go to Trinity, don’t you? I remember you from leading worship” 2) my friend who I mentioned earlier, is a doctor and came to visit me with his son. We chatted for a couple of minutes and then everyone left the room including Dottie who went out to say goodbye. My doctor friend came by in by himself and shared 4 things that i will never forget. “1) God loves you. No mater what, cling to that promise. 2) Things are going to get worse. ( he was right) 3) You are in the best place to be treated. 4) You will get better. “

If you have read the 1st three entries, you know he was right.