Brain Pain

Screen Shot 2019-03-26 at 11.53.00 PM

March 26, 2019

Since this began a bit over seven months ago, I have tried to portray an honest look into my life and dealing with the aftermath of a traumatic brain injury. Many of you asked how best pray so; I want to give you a clear picture of what I am dealing with daily.

I expected my recovery to be uneventful. The doctors and therapists told me that if I worked hard, I should expect to lead a normal life. With the exception of a neuropsychologist, no one talked about what I may experience in the days, months, and years ahead. With that statement, he was only talking about my emotions and how they might affect my judgment. When I checked out of rehab at the end of September, I was optimistic.

In the months that have followed a number of severe side effects began to emerge. Although much better now, my left shoulder became dislocated. The muscles that kept that joints intact no longer supported the weight of my arm. Sleeping was difficult, and any movement was extremely uncomfortable. After some prodding (and a bit of complaining,) the physical and occupational therapists began to focus some attention on strengthening that area of my upper body.

Back in early November, something began to change in terms of pain. The stroke itself (at least in my case) was not painful, but in very rare instances it can lead to Central Pain Syndrome:

Central Pain Syndrome (CPS) is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by a stroke… The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central Pain Syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of “pins and needles;” pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve. Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central Pain Syndrome often begins shortly after the causative injury or damage but may be delayed by months or even years, especially if it is related to post-stroke pain.

Yes, it is as unpleasant as it sounds. Depending on the time of day the simplest of touch feels like being cut. At times, it feels like an electrical current running through my person. My body is unable to regulate between being hot or cold. The intensity is worse when I am tired or overstimulated. When I get home, I can be grumpy and want to hibernate. Quiet is my friend.

I have been battling depression now for seven months. At times; it can be crippling. I saw a neurologist in February who advised me that CPS could be permanent. That was hard to hear. The medication prescribed to help with it had a side effect of swelling on my affected side. Within a short period of time I gained 10 pounds and no longer could quickly put on my shoes. That particular medication has been replaced with another that does not have the undesired side effect, but it also has not stemmed this phantom pain.

Another major shift has been learning to deal with overstimulation. Those of you who know me well understand that I am an extrovert. Years ago when I took the Myers-Briggs personality assessment, the result showed I am an extreme extrovert and an extreme feeler. Being around people has always been something that energizes me, but at the moment it is doing the complete opposite. The past few days have been filled with conversation and social gatherings. I love being with people, but find myself dealing with exhaustion which amplifies CPS. It is a bit of a vicious circle. Next week I will be at a gathering of 5000 pastors that I have attended for the last nine years. It’s loud, fun, and inspiring. I’m not so sure how long I will last.

I am sorry this post is a bit of a downer, but I wanted everyone to know what precisely I am dealing with and ask you to please pray that this will go away. I am thankful that I have friends who care about us and pray for us. I do believe God gives us the st

The Expanse and the Atlantic

 

 

 

March 17, 2019

From my office at the church to the main office is only about 12 feet. A couple of weeks ago I decided to cross what I dubbed as “the expanse” from the one to the other. It is much easier to roll in the wheelchair or to walk with a cane, but I decided to make that crossing on my own. The office staff cheered me on, and I felt accomplished. The more substantial challenge would still face me, the Atlantic.

The gulf between my office and the men’s restroom is vast. On Wednesday of last week, I decided to set my sails and cross that ocean. I pretty much began second-guessing myself about 20 steps into my journey. What if I fell? The “what ifs” began to swell in my head. Our volunteer receptionist pressed into the book she reading and did not look up. I’m quite convinced that she was praying and chose not to watch my awkward advance. It took nearly 10 minutes to make it to the restroom and opening the door was a challenge in and of itself. After taking care of business, I leaned against the wall and took a couple of deep breaths. Should I call my assistant and ask for help? My pride simply said no. And I once again set out to conquer the open sea. About halfway across I hate debated stopping for brake and with a high table in the lobby but decided I merely needed to walk. My friend, Pam, noticed as I approached my office and began cheering me on. When I finally sat down, I was exhausted but hopeful.

Many of you who are reading will want to applaud the accomplishment, but what I discovered and continue to learn is that fear can be paralyzing. The crazy thing is when I take steps it is not the weakness in my left leg, but rather the fear of falling that causes my strong leg to come up short. My right step is stunted because my brain is telling me I need to compensate for the limitations of my left.

I want to take back the many times I used the verse that states “Perfect love casts out fear.” I trust God implicitly. I know Jesus loves me. Am I still fearful with you each step? Certainly. When you stand 6 feet tall, it is a long way to ground. It would be safer and more comfortable to rely on assistance. None of us remember learning to walk, and that is a good thing. Babies fall, pick themselves up, and continue. They do not even consider the fact that each step is a dangerous journey. Somehow I need to remember that lesson. I need to take my eyes off my feet and look straight ahead toward the ultimate goal, that I’ll be able to pop back on the bike or chase students on the field at camp.

I chose the metaphor of the Atlantic which is a smaller ocean than the one closest to us, the Pacific. I have not yet decided what that looks like, but I will continue to train so when I face it I will successfully be able to cross.

Memento Mori

March 6, 2019

I’ve never spent much time contemplating death until August 25. As days went on and the symptoms that had dissipated came back with the roar, I found myself thinking of what would’ve happened if this had occurred while we were on vacation in Egypt or if I was asleep. Luke Perry’s death brought all those feelings to light once again. We are human. We are mortal. It is important to consider that in light of the life we lead. Remembering our mortality helps reorder our priorities; a race toward a finish line has a different sense of urgency than a jog around the block.

Many early Christian communities encouraged believers to engage in the spiritual discipline of considering their own deaths—not to create morbid fear but to put this life in the proper perspective. “Memento mori,” medieval monks would say to each other in the hallways. “Remember your mortality,” or, more literally, “Remember that you will die.”

Today is Ash Wednesday. Because the church I work in and chose to attend prior has its roots in the conservative Baptist tradition, we celebrate the fact that we celebrate Ash Wednesday is a bit unusual. For those of you who are unaccustomed to the Christian liturgical calendar, Ash Wednesday is the beginning of the season of Lent. Lent is a 40-day time of reflection and often, fasting. Today people around the world gathered together to commemorate this season of repentance and reflection in preparation for the celebration of Easter. The ashes represent the fact that our lives are like dust and to dust, we will return. It is a time to consider our mortality.

For the past few years, I have started my day with this online Lenten devotional that includes art, scripture, poetry, and reflection. I encourage you to take a look and consider taking time to prepare your heart and mind for the commemoration of Christ’s resurrection.

I am thankful that I have friends from many different persuasions and I know many of you do not fully understand the importance or need to follow Jesus. I have made in my life’s work to proclaim that good news. I encourage you, friend, take this time to consider Jesus and his teaching. I would love to listen to anyone that has questions or wants to talk. I love my wife, my colleagues, And my cure team but I’d like to get out, grab a coffee, and speak with any of you.

Almighty God, you have created us out of the dust of the earth: Grant that the ashes we receive in Lent may be to us a sign of our mortality and penitence, that we may remember that it is only by your gracious gift that we are given everlasting life; through Jesus Christ our Savior.
Amen.
(From the Anglican Book of Common Prayer)

 

http://ccca.biola.edu/lent/2019/#day-mar-6

Idiosyncrasies

IMG_0889
March 2, 2019
 
Confession time. Being temporarily disabled has brought to light many of my idiosyncrasies. I’ve never thought of myself as OCD but when I look at that concept in light of someone else doing things for me (like my wife cutting up my food as I perceive, improperly, or my chair being placed offset at the table. Honestly, I realize I am a piece of work. Many of these I have been able to mask in the past by doing things on my own. I do not have that luxury right now.
 
I am a listing a few of my peculiarities and would love for you to share some of yours.
 
This first one comes to mind since we had spaghetti for dinner. I like to have my spaghetti cut up before putting the sauce on top. I never learned how to roll my spaghetti on a spoon. My mom always cut it up, and therefore I have always done the same. Many of my food distinctions come from my upbringing I am sure.
 
2. A dinner plate should consist of three items. Some type of meat, a vegetable, and generally a starch. Salad does not count as one of the three required elements. A salad is a bonus. BTW, as a child, I thought of salad as always unneeded. I have grown up a bit since then.
 
3. I am not good at letting go of issues with my appearance. Is it too much to say that I had my wife pluck out small white hairs out of ears yesterday because otherwise, I would be obsessing about them all day long?
 
4. My home or work office is allowed to be messy, but I cannot deal with the living room or family room being a disaster or stuff just out of place.
 
5. My right sock and left sock need to be put on in that particular order. Shoes must follow the same rule.
 
I called my wife back to my office to review this list. She added one more that we agreed was inappropriate for me to list here. You just get to wonder what it is!
 
Alright, fire away! This should be fun.

Taco Tuesday

February 26, 2019

I have been walking independently much more this week. Yesterday I Took 218 steps without the cane. I actually walked into Flamingos for Taco Tuesday and was able to walk out. I teased the hostess who always is very helpful and helps with the wheelchair (she had not seen us coming in.) I asked her to get the wheelchair, and she turned to do so. She looked at me perplexed, and I told her that I had walked in. She was excited and smiled broadly.

On the other hand, my pain level has been worse this week than I believe from the beginning. I credit that to the muscles all being rejuvenated and working hard. I have been powering through, but when I get home, it seems to strike me. I certainly could use prayer for some relief.

 

Six Months

IMG_2936

February 25, 2019

Six Months Ago Today

What has changed? Just about everything. Six months ago today I was in a hospital room in Downey, California. We so seldom travel to Los Angeles, so to find myself in a hospital, being told I had a stroke, and being so far away from home was in a word, devastating.

1. I have not driven or ridden in my convertible in six months. It’s weird to be chauffeured everywhere.

2. I cannot cut up my own food. It’s peculiar to be in restaurants and have my wife cut up my steak for me especially now that I’m not sitting in the wheelchair in restaurants, so as far as people can see, I look normal.

3. When I lift my one hand in worship, my balance gets thrown off. I know everyone around me gets worried. I really don’t care enough to stop.

4. I have only slept in our bed one night after the stroke. Our bed is too high and after sloshing around and hitting the nightstand and knocking everything other over that was on it, it seemed best to move to the lower bed in the guestroom. I really liked the mattress in the guest bedroom better. I refuse to call that room my bedroom. I’m trying to convince Judy that when I am entirely well, we need to buy a new one for our bedroom that is as comfortable as the one given to us.

5. After not being on any prescription meds in years I am now popping 30 pills a day. I do each interval by swallowing all of them at once. Bedtime time requires 11 pills to go down.

6. I have always had an aversion to visiting hospitals, calling people in who are sick, and praying with people who or in pain. After spending a month in the hospital, all of that is changed. I just spent an hour calling people on our prayer list in asking them how we best can continue to pray. It has actually energized me. I have had some great conversations.

7. You can buy just about anything on Amazon. I Googled a one-handed cutting board and now own one that I bought off Amazon.

8. Our nightly dinnertime conversations and time together in the car are spent in more meaningful discussion. We used to spend most of our time the singing along with the radio, but as of the last six months, we are discussing books, feelings, and going places in conversation that I would have rather ignored than discussed.

9. Never once before the stroke did I ever consider the possibility of falling into the back yard grill when barbecuing steaks. Now I look and those flames differently and make sure my balance is in check.

10. People are more friendly to others in wheelchairs. I have never been helped so much and smiled at then I have the past six months.

Do I hate this? You betcha!. There’s not a day that goes by then I am not frustrated, but know that God is using this time. I would just like Him to speed it up a bit. BTW, I know you really want a pair of those cool yellow nonslip, too big, hospital socks! I’m thinking about wearing them with my dress shoes and my suit for the next wedding or funeral. What do you think?

On these things that have changed: Space my wife has articulately observed that I am using the phrase “This is driving me crazy” on way too many things. It has now become a joke.