Lessons Learned Two Years Out

September 19, 2020

My posts of late have been morose, partly because I have felt like that at times. I decided maybe I should list how I have adapted to life with a disability so, here goes. By the way, my intention is to find some humor here.

In no particular order:

  1. I have mastered the ability to fall. Yes, I believe it is an art form. Little by little, I’ve learned to fall and not get hurt. It is always to the left (my mother thinks I lean to the left politically, but she is incorrect).  Do not try to step up a curb when no one is there to watch the spectacle. Probably best to call for help instead of texting through Siri during a staff meeting. Siri’s translation makes you say things you wouldn’t dare. Lesson learned.
  1. Do not talk and walk at the same time. Nothing ruins the conversation more quickly than dropping to the floor near their feet. It is kind of fun to see the reaction though.
  1. Shower benches are something indispensable. I think it should become standard in all homes.
  1. You can blame just about anything on the stroke. If you say something stupid and that doesn’t work, blaming the medication should suffice.
  1. It is not a good idea to go upstairs at the church and then tell your assistant about it. The consequence? Head shaking and tight lips. I won’t do that again.
  1. There is no such thing as moving to another location quickly when you have to pass gas. Just pretend it didn’t happen. I would blame the dog but I don’t bring him to work.
  1. A true male friend is one you could ask to button your pants (Not that there’s anything wrong with that). Yeah, it’s awkward the first time.
  1. Nothing can replace the thumb trick, not even your magnanimous personality. Time to learn a new trick. It served me well.
  1. I have come to the conclusion that you can use your mouth in place of your left hand (like holding your shoe or your seatbelt in your mouth) when you can’t use your hand. No one has said anything, but I’ve seen more than one person look away in disgust.
  1. Ambien works wonderfully. Going to bed within 10 minutes is fine. Waiting 20 is disastrous. See number #1.
  1. I can get out of the bathtub if I wear my water shoes. Trying to get out in bare feet is darn near impossible.
  1. Using a foot weight is very helpful when conducting baptisms.
  1. Able-bodied people who park in a handicapped space are of the devil. It is always best to make sure someone has a placard before saying something to shame them especially if they’re physically picking you up out of a parking lot.
  1. I’ve mentioned this before but, putting a container of liquid between your legs in order to open it can lead to disastrous results. Trying to wipe it up by using your leg and a rag does not usually help at all.
  1. At the end of the day the only thing that matters is Jesus loves me, this I know. Everything else is temporary.

Discouragement

IMG_2932August 4, 2020

I was confident that I would recover. I certainly did not picture myself in my current position. This month marks two years. I’m not sure if it’s the anniversary of the stroke or the frustration of living with the pandemic, or the fact that it’s just plain hot, but I find myself dealing with discouragement.

The photo above was taken five days after the stroke. I was able to walk, raise my hands, and engage in conversation without the muscles in my mouth becoming fatigued. I had no doubt that it would get better from there. I did not.

Literally, the day I came home from the hospital the first time, the initial complications came back in a fury. I could no longer use my left arm and hand, and I could not walk.

I recently went back and read my journal entries. Undeniably, that first year I was upbeat. I saw the humor in many of my daily experiences. I was aware of God working. I felt appreciated and cared for. There were daily gains, and my outlook was optimistic, as the months wore on, the shadow of being dishearted grew ever darker.

It is frustrating when I meet new people who will only know me as disabled. I told someone recently, if I just sat at a table and never got up, people would never guess. I have tried the FDR trick and would not take photos in the wheelchair or with the cane in view.

I worked hard to ditch the cane. The four-pronged one I came home with has not been in use for many months. It sits by my desk as a reminder of something I accomplished. I did the same thing with the traditional cane that I graduated to. I will walk out to my car without it. I would struggle each step when I was tired and not use it. I’m not sure what I was trying to prove. A few weeks back, I consented to the reality that I should always be using it to keep me safe.

Where is God in the midst of this? The Sunday School answer doesn’t feel adequate. I titled my blog Faith and Doubt. There is a constant back-and-forth between the two. Don’t worry, I’m not about to give up on my faith. Many of you have followed my story. I felt I needed to be honest with you about what’s going on inside my head.

It has been a very long two years, not only for me personally but for Judy as well. Her workload at home has doubled. We recently hired the guy who cuts our front lawn to begin getting the backyard too. I hated to see my wife having to do that job. I have been able to take back at least the main dish portion of cooking. Not a day goes by where I don’t drop something to the floor in the process. Judy came home recently to find four different items lying on our kitchen floor. I have gotten better and not stepping on the things I drop!

I am sorry the tone of this entry is not inspirational. I am not there right now. I have no doubt that something will occur that will make me smile and press on. I really don’t have an option! I will tell you that I feel much better than I did when I started this entry yesterday. I think I just needed to get it out. Now, if we could simply end the pandemic, the electoral cycle, and learn to live with one another, I would be a happy camper!

Seeing Differently Part Two

IMG_0203June 15, 2020

“Let people see your struggles and don’t ever fake it.” ~ Rich Mullins

After the stroke, one of the accommodations we made was to put a bar on the edge of the bed for me to be able to pull myself up. Last weekend we were in the mountains staying at a friend’s lake house. The stairs to the master bedroom were too much for me to handle, mainly because there was no rail for the descent. So Judy and the kids slept upstairs, and I stayed downstairs. After a physically challenging day I closed my eyes and slept well.

I tend to wake up earlier than the rest of the family. The thought of a quiet morning sipping coffee with the lake in view sounded beautiful. When I awoke, I immediately realized I had a problem. How am I supposed to get out of bed? My solution was to throw my good leg up in the air and rock myself into a sitting position. Like many of my other flawed ideas, this one sounded reasonable. It took me three tries, but in the end, I found myself on the edge of the bed. What I didn’t count on was that the springs created a downward slide. I fell to the ground.

I titled my blog “Seeing Differently” after my eyesight improved to the point that I do not need glasses for distance. I did not realize how relevant that title would be. I do see things quite differently than I did 22 months ago. I perceive things now I had never considered before, such as how high a curb is, the side of a rail on a staircase, the height of a video screen for someone who uses a wheelchair, and plenty more.

The idiom “Before you judge a man, walk a mile in his shoes.” is a reminder to practice empathy. In my case, maybe I should say “walk 1034 steps (that would be a very good day) in my shoes.” A non-disabled person cannot fully comprehend what it’s like to face such obstacles. It isn’t easy to find a frame of reference when you are not living it out. This past weekend, I challenged my son Josh and son-in-law Josh (yes, you read that correctly) to lie on the floor and try to get up using only one hand and one leg. The results were entertaining for me to watch and enlightening for them as they struggled. They both walked away with a greater understanding of the things I face every day. 

I decided to list tasks that are either very difficult or impossible to accomplish when one side of your body doesn’t respond. Please note this is not meant to make you feel bad for me, but rather to help you understand what being disabled feels like. I  challenge you to try one or two of these:

Cutting up food

Tying shoes

Buttoning pants

Opening cans

Buttoning shirts

Trimming my fingernails

Walking on the beach

Climb a ladder (that would be disastrous!)

It is frustrating.  I am beyond getting angry at God or lamenting what has happened. The damage to my brain is real. I’ve realized that I may never be healed, but that is okay. God is still good. I have felt his presence with me throughout.  I just have to look back and see the tracks in the sand.

I am learning to see differently. My prayer is for you to see differently too.

Honeybees and Power Scooters

May 21, 2020

The most common complaint I’ve seen from the quarantine is that every day feels the same. I just had an adventure that broke the monotony. 

I had about 40 minutes left in the first Harry Potter book, so I decided to go take a walk. You need to understand when I say walk I mean roll (and when I say read, I mean listen) I have a scooter that I use around the neighborhood. We had realized it had been unplugged for a while, but when I turned it on, it looked like the battery was fully charged. That turned out not to be the case.

I was about half a mile down the hill when I realized that there was a red light blinking. It was the warning that I was going to run out of juice. I begin to panic at the bottom of McKenzie knowing full well I probably wasn’t going to make it. Then things got really interesting.

I was looking down at the blinking light and did not notice that I was rolling straight into a swarm of bees. I am terrified of bees. When I looked up, I swerved out of fear. There were at least 20 bees flying around my head. In a panic, I ran off the sidewalk and into a brick wall. I tried to back out (at a speedy 1 MPH) only to go off the other side of the sidewalk. When I finally straightened out, I attempted to get away, but a good number of them followed me for at least 25 feet. When I finally cleared the swarm, I was free to go back to panicking about running out of battery. 

The scooter stopped four times, and I thought I was going to be stuck. I was surprised when I pointed the joystick forward, but I was able to continue in short bursts. As I crossed the street to go home, the thought occurred to me, “what would I do if it ran out of battery in the middle of the road?” I am happy to say that it ultimately died as I pulled into our garage, and it coincided with the end of the book. 

In the haze of these days that all seem alike, I can say, this day was not dull!

Lessons Learned

2020MHCGameNight_2020_02_01_094

February 2, 2020

Seventeen months ago, I penned these words: “Some people have asked me, “What do you think God is trying to teach you by this?” My response has been that I am learning a lot by the experience, but I in no way believe that God caused this to happen. We live in a fallen, broken world, and our bodies simply break down. There are lessons to be learned…

Some of those lessons have been practical. I’ve learned not to put any plastic container between my legs to try to open it. It took a gallon of orange juice and a simple water bottle for me to get that one down.  It only took one mayonnaise packet for me to learn not to open it with my teeth. Finally, I discovered not to put my body weight while opening a door outward when someone is on the other side and opening the door for you. Yes, all those scenarios are pretty funny. I wish all the things that I’ve discovered were that lighthearted.

I have been educated about my lack of patience. If I were keeping a grade book, my current score would be a C minus. I still struggle with being demanding, and I know others get frustrated when I want something right then. I continually get frustrated when I can’t do something for myself. I now know that I cannot do two things at once. If I am walking and want to know what time it is, I go to my destination, sit down, and then look at my watch. Early on, I learned not to rush to answer the phone. It took a few falls for me to learn not to do that.

I am learning how to play second fiddle, and I don’t always like it. I have been humbled to know that I cannot always be in the driver’s seat. Last night I was (mostly) content by doing things behind the scenes for an event that I was instrumental in orchestrating. Sitting in the second chair allows me to help make the first chair shine. My role as Pastor is to “equip his people for works of service, so that the body of Christ may be built up.” ~ Ephesians 4:12 NIV. I am seeing leaders flourish as they take up the more upfront positions that I used to hog.

I have gained a bit of empathy.  I hate to see people suffering. Most of my career, I have done my best to avoid such scenarios. When my mother-in-law, who suffered from Alzheimer’s, was moved to a board and care home, I could not bring myself to visit her. I felt awkward about seeing someone with a disability. I didn’t know what to say, so I didn’t say anything. I am seeing things in a much different light now. I am okay visiting with and praying for people who are physically suffering. I will never see a person in a wheelchair or using a cane the same again. I know.

I am thankful for lessons learned.

2020

 

January 5, 2020

We have now passed into a new year and a new decade. I am also moving into 17 months as a disabled individual.

The day after Christmas has been important in our extended family for many years now. The tradition is to walk on the beach together after a nice brunch in Pacific Beach. Last year, I stayed on the sidewalk while everyone else enjoyed our December 26 ritual. I remember thinking to myself, “next year, I will be able to walk on the beach with everybody,” that did not hold true.

As we finished eating, I suggested that I would wait in the restaurant until they were through with the walk. I wasn’t happy about it, but I did not want to spoil our 32+ years of history. My brother-in-law brought their dog, and the lifeguard told him to stay off the beach. I figured we could commiserate with each other (not about that walk but our mutual life-altering situations). Steve was diagnosed with early-onset Alzheimers last year.

As we began toward the pier, most everyone stayed with the two of us. Honestly, that meant a lot to me. That gesture helped me not feel as sorry for myself. God has been very good in the sense that my life was spared, yet I am still very frustrated at how this has all has played out.

There were victories in 2019.  I retired the wheelchair in June. I went back to work full-time in August, and I put the cane away in late November. Then after two falls in December, I decided that much I was trying to do was vane. I didn’t want to be seen as a disabled person. I hated meeting new people who would only know me this way, but once again, I was worried about optics.  The reality is I may never get much better. I am not giving up, but the fact is that I have plateaued.

It is very easy to get frustrated and throw myself a pity party, then God shows up and reminds me that he is good. The past week has been very refreshing. On New Year’s Eve, I had the honor of officiating a former student’s wedding in Utah.  Alex is 32 years old and a lawyer in Austin, Texas. I was both his seventh grade and eighth-grade teacher. One of his groomsmen, John, was also in my class. It was a bit surreal to see these 12-year-old boys grow to be such fine men.

This afternoon I attended Church of Hope in Aliso Viejo, where another of my former students (actually from my first youth group in Irvine) is the lead pastor. He invited me so the elders of this church could lay hands on me and pray. Another surreal moment, but oh so encouraging.

It is those gentle reminders, the friends who take care of our yard work, a note here and there from a former student, or a simple text message to let me know someone is praying for my complete recovery.

Just for fun, here are some things I have learned in the last 17 months:

 

  1. Never clean up orange juice with a rag and your foot.
  2. Waiting 15 minutes to walk to bed after you’ve taken Ambien is not a smart thing.
  3. A lot of people park in handicap spaces when they’re not supposed to.
  4. People are more likely to call you “Sir” when you are walking with a cane.
  5. You can’t open everything with your teeth.
  6. Strangers will go out of their way to help you’re when you’re disabled.
  7. Never wear pants you can’t shimmy out of when they are buttoned.
  8. Kids see beyond your disability.
  9. It is more entertaining if you do a little jig before taking a fall.
  10. Going upstairs by yourself at church is frowned upon.
  11. I should heed Jordan’s and Pam’s advice not to move chairs.
  12. Having an accident the week you begin driving again does not inspire confidence.
  13. My body is impatient. There is no more “waiting to go.” I learned this the hard way.
  14. Rails to keep you safe get very hot if they are metal.
  15. I don’t need most anything right this moment. I am learning to be patient.
  16. Locking my keys in my house makes life problematic.
  17. Asking people to tie my shoes is not that difficult.
  18. I need a lot of quiet time to calm overstimulation.
  19. I have supportive friends and an amazing wife.
  20. God is good regardless of what I feel.

The Expanse and the Atlantic Revisited

 

November 19, 2019

I will be first to admit my recovery posts have lacked a positive outlook as of late. There have been so few gains over the last three months, so when I spoke the word “plateaued,” in my previous blog entry, I was consenting to the idea that I was not going to get much better. I had been beaten.

When people ask me, “how are you doing?” I’ve tried to explain that some days are better than others. Well, today has been one of those better days. Today might be the most important day since I put away the wheelchair.

After arriving at work and saying hello to everyone, I sat down at my desk and made a decision. I was not going to use my cane until lunchtime. Practically speaking, this was not the right choice. The last time I crossed “the expanse” ( the space between my office and the main office), I got distracted and fell. I’ve grown weary of falling, so risking that is not something I relish. Nevertheless, I made that crossing at least four times before attempting to cross “the Atlantic” (the space between my office and the men’s restroom).

With cane in hand but not touching the floor, I set out to take those 50 steps or so (I am taking smaller steps than most). If someone would’ve been watching me, I probably would have been unable to take more than a few steps. I was overjoyed when I reached the bathroom door. I thought to myself, “You did it!” and that reality gave me the confidence to walk back to my office at a quicker pace.

Once back at my desk, I changed my mind about using the cane after lunch. I made the decision not to use it at all while I was in the office building. When leaving this evening, I walked to the doors and then planted the cane on the ground and congratulated myself on a job well done. I’m quite sure that I will sleep hard tonight. When I see my neurologist tomorrow, she will ask, “how are you doing?” and I will answer her with a more positive outlook.

I’ve learned to do numerous things that are handy with a cane. I guess I will have to learn to live without it.

Pressing On

 

IMG_0705

November 11, 2019

I press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us. ~Philippians 3:14 NLT

I know that cherry-picking verses and applying them to personal situations is a poor exegetical model, but I’m going to claim it anyway.

A number of you expressed concern over my post last week when I said I was tired and frustrated. It has been 15 months; I am. That does not mean I have given up hope, or I distrust what God is doing in my life. It does mean that I am human and subject to emotions that sometimes seem antithetical to faith. I keep a mirror blog on WordPress that is titled Faith and Doubt (www.faithanddoubt.life). In no way doubt the existence of God or his personal interaction with his creation, but it does seem at times that people get lost in the cracks. Intellectually, I do not believe that that is true, but it certainly feels so at times.

A few months ago, my doctor and physical therapist both use the word “plateaued.” They said I could continue to experience gains, but they would be the exception, not the rule. My body had already confirmed that but, it was frustrating to hear.

I am walking better but very slowly. I still rely upon a cane. My left hand is still mostly useless. There are glimpses every morning of regaining functionality. When I am completely at rest, I find that I can move my fingers in ways that I cannot do what I am fully awake. I have to remind myself that I’ve had a brain injury. If I want to show you that I can point with my left hand, the response is for my finger to turn inward. It is all so bizarre.

Here is what I do know; there is purpose in suffering. I have had countless people tell me that I have helped them in their situation. I will take that affirmation. If God uses my position to help others, then I can find comfort in that knowledge.

“Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.” ~CS Lewis

One Year

IMG_2936

 

September 26, 2019

Yesterday was our 35th wedding anniversary. It was also the first anniversary of my stroke. Yesterday, I chose to honor the day we were married and not commemorate what has turned out to be the worst day of my life.

A year in, I still have questions that go unanswered. We had done everything right. We were in the hospital in 30 minutes, which was well within the safety zone for a TPA injection (a life saving, clot-busting medicine that can only be administered within a two-hour onset of symptoms). After being wheeled to the ICU ward, I laid in the bed and sobbed. I did not blame God but was sure that I would walk out of the hospital. Within a day, I could walk to the bathroom, and a few days later, I was able to raise my arms. I was convinced I had escaped dire consequences.

Because my doctors were unable to regulate my blood pressure successfully, they transferred me to a regular room in order to get the medication correct. I was feeling good and I was looking forward to being discharged. My release date was postponed because my blood pressure was too high. I began traveling down a road of despair. I felt fine, but they would not let me go home. When I was ultimately released, I walked to our car and got in on my own power. I was finally free to recuperate at home.

The drive home was uneventful. After the hour on the freeway, I struggled a bit to walk up our driveway. Our dog, Sam, was very excited to see me. It had been nearly a week, and I was looking forward to sitting down in my office and getting caught up. I am answered a few emails and got up to speed with the news of the day. Things felt like normal but, when I tried to stand I collapsed on top of the ironing board that sat next to my desk that I use for extra space (I am a flat space abuser.) Judy ran back to find me on the floor and the ironing board irreparably damaged. She had to call the neighbors for help. After getting back on my feet, we’ve decided to go back to the hospital on the same day I had been discharged. Once again, I began to travel the road of despair.

I honestly do not remember how many days after the second discharge that I found myself with a relapse of my symptoms. I could not operate my left arm nor my left leg. The decision was made to transfer me to a rehab facility in the city of Tustin. I would spend the next three weeks in intense rehabilitation. It is a weird feeling to be in a facility like that with mostly senior citizens. I would spend at least three hours a day re-learning to walk and learning to make use of what little movement in my hand that was left.

I was released from the rehab hospital on September 22, nearly a month from the stroke. I was frustrated in the hospital because of things I couldn’t do. I thought going home would be different but, I realized that I was just as limited and that was maddening. The next number of months were a cycle of faith and doubt, hope and depression. I cried at the drop of a hat. I did not want to participate in social activities even to the point I refused to go to our life group.

My primary care physician-approved me to go back to work part-time beginning on January 24. It was good to get out, but I was ill-prepared for how exhausting it would be. I gradually regained my strength and went to 30 hours, July 1 and full-time, August 1. I found humor in many of the situations that I found myself in at the hospital and in rehab. The reality of my situation has tempered that now. I have good days and bad days. The majority of the pain has ceased. I put away the wheelchair a few months ago, and I make myself walk, albeit with a cane.

I wish I could report that I have found victory in Jesus and have conquered depression, but that would be a lie. There are good days and bad, but I do believe the positive days outnumber the negative. I have deemed this time as pre-retirement practice. Judy has been an anchor through this storm. I understand the term, helpmate, more than ever. I am so thankful that God orchestrated the end of her career at Vanguard to coincide with my need to have her home. I do not like to throw the word ”Blessing” around, but that is what our time together has been.

I have somewhat plateaued in my recovery, but I do not believe I am through. If you are a praying person, please pray specifically on my left hand and arm, my ability to walk unhindered, and for Judy to find a well paying full-time job that can use her management ability.

God is good. I need to be reminded of that at times.

Recovery

IMG_4944

August 1, 2019

It has been a while since I last updated everyone on my progress. Things are still moving much slower than I would like.  Tomorrow marks eight weeks since I officially put away the wheelchair. I still have to use it if we’re going somewhere that involves a lot of walking, but for everyday use, it is no longer a viable option for me.  I am regularly wiped out by the end of the day, but it is a good sort of tired.

As of today, I am officially back to work full-time. I came back 20 hours a week in late January. In July I upped it ten more hours to 30 hours a week. As of August 1, it is back to full-time work.  About a month ago, I stepped back into my role with Route 56 (the ministry I pioneered two years ago for fifth and sixth graders.)  It was significant spending some time with them at Forest Home.  I hope to be well enough to attend winter camp with them in January.

Our church has stood by us throughout this whole ordeal. The leadership made up the difference while I was on disability and continued my salary through these months of part-time work. I am very thankful to be a part of the Mission Hills community.

One of the more frustrating limitations I have is the inability to use my left hand. It is incredible what you can do with your mouth to address this concern (my assistant came to my aid earlier today when she saw me carrying a water bottle in my mouth.) Pam Giali is my protector at the office, but I would rather have two functioning hands. Over the past week, I’ve discovered that I can open my hand when I wake up in the morning. It doesn’t last long, but it does give me hope.

In a few weeks, it will be one year since this occurred.  I want to thank everyone for your continued prayers as I continue to recover.