Still Truckin’

Wow it’s been so long since I posted I had to reset my password. The last year and half have been challenging for us as I’m sure it’s been for many. Wayne has become proficient at putting on a mask with one hand (remember his left elbow doesn’t bend) even if it is below his nose most of the time. All of the community activities that we worked so hard at scheduling for Wayne came to an abrupt halt and as a result he has spent most of the COVID year(s) in his home, often in his room, with periodic walks in his neighborhood. At least we can go in his home now, for so long we had to meet him outside. Of course one of our worries was will Wayne decline if he has less stimulation and continues to do word searches for hours each day? This situation has been a good reminder that our wishes are not necessarily Wayne’s wishes. I need to remember that Wayne is content and often happy with his life and daily routine even though it seems boring and is sad and frustrating for us. It’s not for him. Thank goodness. And, despite limited stimulation he has continued to improve cognitively. He has increased awareness of his surroundings, his feelings, and his preferences. The challenge with this is that it can be difficult for him to respond appropriately. For example Wayne will often yell, usually after someone offers to help; ‘do you need help with that?’ ‘NO I DON’T, LEAVE ME ALONE’. He sometimes doesn’t even realize that he’s yelling; ‘Wayne you don’t have to yell’, ‘I didn’t yell’. If others are bothering him he may flip them off or yell at them instead of expressing his wishes or removing himself from the setting. We find ourselves saying ‘what kind of mood is he in today?’. Another challenge has been his increased ability to express his preferences with hygiene and diet. What’s wrong with 10 cups of caffeinated coffee, wearing pajamas all day or using an excessive amount of salt? We pick our battles.

Some good news is that Wayne continues to have regular communication with Kaiden several times a week. They use an app called Marco Polo where they share videos with each other. Wayne knows what’s going on in Kaiden’s life and what he’s up too and vice versa.

Wayne will be having two surgeries soon. Oral surgery to remove his wisdom teeth and foot surgery for a toe infection. These are the inevitable result of severe trauma and his decreased ability to perform self care. Hopefully they will be successful and Wayne will keep on truckin’.

Confusion & Clarity

It seems that every quarter or so Wayne has some ‘rewiring’ going on in his brain that creates both confusion and clarity.  Often this is foreshadowed with increased agitation or something out of the ordinary happening.  During this time things can be challenging but, fortunately, it usually ends with some sort of break through or forward progress.  The latest rewiring episode happened last week when my mother received a call from Wayne one evening.  First, let me clarify, that Wayne has never initiated a phone call since his accident.  He is happy to receive phone calls, but has never made a phone call even when prompted too.  I’ve said to him in the past things like, ‘ask the staff to call me later so I know how you’re feeling’ or ‘ask to call me at 6:00 tonight’ just to see if he would, but alas, he never has.  So last week my mom got a call out of the blue from Wayne.  Her cell phone number is the landline number that we had growing up.  Wayne apparently asked one of the staff members to use the phone (didn’t tell them why or ask for a number) and then called my mom’s number.  He asked to be picked up and gave my mom his correct address.  Needless to say, my mom was surprised and concerned, but after some appropriate conversation got Wayne to admit that he was confused, and fortunately not agitated, and they both hung up without any further incident.  Betsy and I both thought, ‘WOW, what’s coming next?’

Shortly thereafter I had a conversation with Wayne about a sound I was hearing in our neighborhood.  I told him that Holden, my son who fancies himself as a birder, thought there was a great horned owl nearby because we kept hearing ‘who, whooooo, who, whooooo’.  Wayne quickly replied, ‘that’s not a great horned owl, that’s a pigeon’ matter of factually.  I thought it was odd that he was so adamant, so I googled pigeon sound and sure enough….’who, whooooo, who, whooooo’.  I was dumb founded.  Then I googled great horned owl sound, and it was something totally different. Well, that’s Wayne’s brain.

BrainSpace is still not allowing visitors inside due to the pandemic, which is difficult for us and I think frustrating for Wayne, but he is adapting to this pretty well.  There have been some challenges with other residents, but all in all we see progress with how Wayne is dealing with his frustrations and the ability to express himself appropriately. We meet him outside and he goes on lots of walks and when willing, does creative exercises too.

Lastly, I want to thank everyone that participated in organizing, donating or purchasing the rest of Wayne’s used gear and effects.  This was organized by Liz & Corey and the proceeds will go toward Kaiden visiting Wayne, hopefully later this summer.  It blows my mind the love and generosity of his community and we are all so grateful for the support.

Evolution

Wow, it’s been almost 6 months since the last post and it wasn’t even mine, lol. I thought that would be the last since I’ve been struggling with how to ‘report’ on Wayne’s life and still maintain his privacy. But so many of you have expressed interest and concern so I will try and continue to post periodic brief updates on Wayne’s continued evolution.

The bottom line is that Wayne is good.  He is still living at BrainSpace in north Seattle.  There have been many new challenges but Wayne continues to slowly improve. Often it’s a dance between forward and back but the general trend is forward. Wayne is asking more questions and starting to initiate conversations. His processing is delayed so it takes time for him to form and execute his thoughts but given time he will often respond with more than an automatic answer. He’s also learning to monitor the volume of his voice. Occasionally he says things in a very loud voice that sound angry but he doesn’t realize this until it’s brought to his attention (and sometimes he really is angry). Additional challenges have been painful arthritis flare-ups, communal living with individuals with brain injuries and high caregiver turn-over. Increased awareness of his feelings and ability to express himself are progress and exciting to see but can also be complicated.

The other big change has been with Wayne and his son, Kaiden’s relationship. Kaiden flew out by himself in September to spend a few days with Wayne. It was wonderful to see them together and watch Wayne’s fatherly instincts appear. Wayne kept a constant eye on Kaiden and always wanted to know what he was doing. Since then they have talked more and share videos frequently with each other thanks to the Marco Polo app. They are currently both reading the book ‘The BFG’ together. Wayne is looking forward to regular visits with Kaiden.

We were all surprised and saddened to hear of Tessie’s passing. Kaiden is now living with Tessie’s brother’s family in Virginia. He is close to his cousins and grandparents.

Happiness

Enjoying The Lion King

Snack break at the climbing gym

Wayne watching a Marco Polo video of Kaiden

Passing the Torch

My name is Wes and I recently graduated from St. Olaf College, with Wayne’s niece Kaya. After deciding to take a gap year before attending graduate school, I moved to Steamboat Springs, Colorado with the intent of pursuing several of my passions to the greatest extent possible. For one such obsession, I spend the majority of my time trying to find the most difficult way to the top of a chunk of rock. As such, many people in my life fail to see the utility that this activity holds in my overall mental and physical well-being. As I settle into a lifestyle that supports my ability to play in the mountains, I find myself reflecting on conversations with those who have found ways to balance personal relationships with an intense passion for high consequence activities.

I recently had the opportunity to chat with Wayne about his time pursuing activities that others viewed as risky. While I believe that his answers to my questions were censored by the presence of Kaya, I still learned a great deal. I asked Wayne what advice he had for me given that I intend to live similarly, and he responded by telling me to “listen to everything, and then do what you want.” For myself, his response has several variations. First, listen to your body. How does your body feel? Tired, hungry, painful, euphoric? Does it have any bearing on your ability to perform? Next, listen to your friends. Listen to the concerns of those whose opinions you value. How do their concerns compare to your own? Finally, listen to your mouth. Pursue experiences that make you smile, avoid those that you are indifferent or have an aversion to.

Another portion of our conversation that stood out to me was our discussion of the reasons that he moved away from his pursuit of riskier mountain activities. Wayne said that he stopped free soloing because it no longer seemed worth it to him. He never fully explained the change that occurred. I wonder if starting a family had an impact on his ability to control the mental portion of this climbing style. As I was climbing in the Flatirons last weekend, I found myself thinking of what Wayne said, and how he could give up experiences as pure and powerful as those presenting themselves to me with each foot of rock. When trying to determine if an experience is worth its potential costs, I find myself asking, “Is there anywhere that I’d rather be or anything that I’d rather be doing with this moment?” I have found the price that I am willing to pay for these experiences allow me to answer no to this question.

Returning to Steamboat from my weekend trip climbing in Boulder and Rocky Mountain National Park, I am more relaxed than I have been for awhile. As I settle into the couch with a beer in my hand and content in my heart, I know that I am on the right path.

*the posted pictures are, unfortunately, pictures of pictures…since I couldn’t upload the original pictures

Wayne’s World

 

What’s going on with Wayne lately?  It’s been a minute so I’ll update y’all…

• Wayne’s walking everywhere without a cane or any assistive device.  He has not fallen yet (since his accident – crying smiling emoji*).
• Wayne started running this past week, OK jogging, on grass (phew).  It literally brought tears to my eyes for so many reasons.  I wish I could share the video here but it’s on Facebook and I’m happy to share it if people contact me.
• Wayne has increased his time volunteering at the Food Bank to 4 hours at a time and his responsibilities are expanding.
•  Wayne still loves word searches but is a little less obsessed about them.  He’s spending more time doing a game called word stacks that is challenging.
• Wayne is continually amazed that weed is legal in Washington*.  The dispensaries are prevalent and he often comments that it’s like ‘another country’.
• Wayne doesn’t check his email.
• Wayne screamed violent hurtful statements at his neighboring house mate the other day because he played his music too loud.  I’m sharing this because it’s not all roses and exemplifies where he is at.  He did remember it the next day (huge) and felt horrible and apologized. This spurred a productive interchange between the two on the nature of their injuries and their challenges.
• Wayne often laughs reflexively and inappropriately.
• Wayne spends a lot of time reading (big smile, thankful he can read).
• Wayne got his haircut because longer hair was too hard to keep clean and now he gets his hair washed and scalp massaged* at a nearby salon weekly since he isn’t very thorough (difficult to wash your hair with one hand).  He often remarks how long Kaiden’s hair is.
• Wayne does not generally initiate conversation with others in his home when he is alone, but is starting too when he has visitors or is in a group setting.
• Wayne needs occasional cues for personal hygiene like showering, shaving and changing clothes but this is less frequent than in the past.
• Wayne loves coffee and drinks a lot of it*.
• Wayne enjoys participating in different classes at BrainWorks including cooking and yoga.
•  Wayne likes to watch the Seattle Mariner’s baseball games, who knew?!  
• Wayne is still swimming weekly but his favorite part is the hot tub.
  

  

  

  

  

  

Talents

Sometime shortly after the new year I was talking with Wayne and we were discussing the word ‘disability’.  I commented that I didn’t like the word since it sounds like people without abilities and Wayne said, ‘talents’.  I said, ‘what?’ wondering if we were having the same conversation and he continued to say something like ‘it could be talents since everyone has different talents’.  OK, sounds good to me. Wayne continues to explore his many talents as well as express his humorous personality.  He’s expanding his responsibilities working at the food bank and has no problem calling people out that are ‘standing around’.  I think the exact words were ‘I’m glad to see that you are doing something too rather than just watching us’.

It was wonderful for Wayne to spend time with his former work mates from the CDC in Fort Collins who were in town recently.  We are thankful that people take the time to visit and are able to celebrate Wayne’s life today as well as reminisce about the past.

Wayne normally swims in the pool once a week but one day he said he preferred to play pool instead….and got a good laugh at seeing this lunch special.

As time goes on I find it challenging to write insightful blog posts, but I’ve heard from a few that the updates are still appreciated so I’ll try to continue to post periodically…  I hope people that care about and love Wayne know that he is doing well, that he is content, that he laughs and smiles a lot, and that he still has unique talents.

 

Naughty or Nice?

I thought I’d share an interchange that happened last week between Wayne and his friend, Eroni, that made me smile.  Eroni took Wayne to Costco to run some errands.  Before leaving Eroni said, ‘Wayne I need to get some stuff from Costco and when we go I need you to drive the shopping cart’,  Wayne said ‘yes I can, that’s easy’.  Eroni, ‘You know that it will be crowded and you need to be careful’.  Wayne, ‘Do you want me to sit for an exam to get the permit to drive that thing?’.  Then when Wayne was driving the cart around Costco (not because he couldn’t walk, just for a different experience and challenge) Eroni said that when Wayne was behind someone he would sound the horn, then look away with a smile.  When I heard that I responded with ‘classic Wayne’, cheeky and smug.  Later on when I saw Wayne I commented on the things Eroni said and Wayne looked at me and said, ‘I was serious, I didn’t know if I needed to take an exam to drive that thing, but if I did I would have passed, it was easy’.  Classic Wayne on so many levels.

I think I mentioned in a previous post that egocentricity is common with brain injuries. Since his accident Wayne has never inquired about money, where his is or how things are paid for.  It’s similar to a child who trusts that his needs will be met, but is not concerned with the details.  At Betsy’s suggestion, Wayne went with her to buy gift cards for his housemates and enjoyed handing them out.  As with all behavior, repetition and practice are essential for change.  I was celebrating when Betsy told me that when she picked up Wayne for Christmas eve dinner he had a sudden look of realization on his face and exclaimed, ‘I don’t have a present for Mom’.  I’m sure she’ll take this progress as your present Wayne.

To get the full value of joy, you must have someone to divide it with – Mark Twain

Climb On

Eroni told me a few weeks ago that one day when he arrived to work with Wayne he found him looking for something under his bed.  Eroni asked Wayne what he was doing and he replied with some urgency, ‘I’m looking for my climbing shoes’ (smile #1).  This got me thinking, maybe Wayne could go climbing now.  There would be some logistics to consider: the number of climbers at the gym, the tight-fitting shoes, his left arm that doesn’t bend at the elbow, just to name a few – but still, doable.  So, we planned for this past Sunday morning when the gym would be the least crowded.  Eroni helped to get Wayne ready in the morning and said that when he arrived Wayne was lying on his bed with the window open and that his room was pretty cold.  He asked Wayne what he was doing and Wayne said that he was acclimatizing to the outside temperature in preparation for climbing (smile #2).  On the way to the gym numerous worries and questions bounced around in my head.  Would Wayne be disappointed that we were only going to the gym?  If Wayne can’t tolerate climbing shoes will he get angry?  Will he get irritated starting at a low grade? When we arrived Wayne patiently watched the introductory video and filled out the waiver.  Then we had Wayne try on a pair of larger approach shoes that could be unlaced and were easier to get on.  For those who don’t know, Wayne has extremely sensitive feet that have only gotten worse since his 1999 BASE accident.  When Wayne stood up wearing the approach shoes, for whatever reason, he said ‘this isn’t going to work’ and sat back down. We decided to forgo trying the actual climbing shoes since they would be hard to get on even though they are more flexible.  Fortunately, Wayne was agreeable and happy to wear his Teva sandals.  The next challenge was donning the harness.  Even though there were moments when Wayne looked tense, he was able to get the harness on and cinched up with a little help.  Not surprisingly, he had no problem tying his figure 8 (smile #3).  Once Wayne was on the wall he was methodical, focused and fluid.  There were times when he would grimace and I was worried he may yell, but he was able to work through those challenges without any verbal outbursts.  He made it to the top on some routes and on others he requested to be lowered after giving it a good effort.  I loved seeing his cane propped up against the wall at the beginning of the route once he started climbing.  After about an hour Wayne was happy to sit and relax and watch others climb. He commented that climbing was hard but good.  I was impressed that Wayne appeared to know his limits and didn’t continue to try a route or move until he became frustrated.  Amazingly, he didn’t remark about the grades or the level of difficulty.  He made no comparisons to others or his past skills and seemed to truly embrace the moment. On the way home, I think we all were smiling.

 

 

For Better or for Worse

This morning I was thinking about the challenges families have with disability.  No one loves you like family, yet, often immediate family is not able to directly provide optimal care.  This is not for lack of wanting, rather, I think it’s got a lot to do with the complicated nature of family relationships.  When my dad was succumbing to ALS and needed a wheelchair he didn’t believe that I had his best interest in mind.  How could his daughter know what’s best for him?  Even though my husband has the same therapy training as I, my dad preferred to listen too and follow his advice instead of mine.  Similarly, I often feel that Wayne can be easily annoyed or suspicious of what Betsy, my mom or I suggest, but he can be excited, diligent and focused when a non-family member he trusts is asking.  I’m not surprised by this, just reflective that so many people with disabilities only have family.  The support provided by insurance and community is limited and people are considered ‘lucky’ if they are left with a supportive family.

Wayne would not be where he is today if he only had us.  Because of a combination of unusual and incredible circumstances, Wayne has Eroni, Erin, Eleanor & Kui.  These steadfast angels have been in Wayne’s life for several years and are able to help him navigate his TBI world with patience, persistence, love, friendship and expertise.  I think, initially, the thought was that we would guide their services and provide help with appropriate therapeutic activities and outings for Wayne.  As time has passed I realize that these relationships and friendships have allowed Wayne’s world to expand far beyond what only we would be able to do.  It truly is a team effort.

Below are pictures of Wayne working, yes – you heard me right, WORKING at a local food bank.  I don’t want to misrepresent Wayne’s abilities, Eroni is supervising from afar, yet it’s been very rewarding to see Wayne rise to the occasion in this setting and not have any significant behavioral issues.  Below that is Wayne enjoying a special movie set-up in his room after a hard days work.  Wayne will soon be getting some extensive neurophysch testing done that will detail the specifics of his deficits.  This is necessary for future work in different settings.  It is our hope that one day Wayne will be able to work in an environment that is a closer fit to his previous career.

The Struggle is Real

Let’s be clear, having a brain injury SUCKS!  A piece of brain tissue the size of a grain of sand contains 100,000 neurons and 1 billion synapses, all communicating with each other in an highly organized and precise fashion.  Shake it up, smash it up, soak it in blood and now try to formulate a specific thought, communicate it effectively and react to the environment.  It’s only when I remember how far Wayne has come and the amount of damage to his brain that I can calm the fear, sadness and overwhelming feelings that are part of helping a loved one with TBI.

I haven’t posted in awhile because, as my 16 year old daughter says, ‘the struggle is real’.  How do I describe the continual progress Wayne is making with the daily challenges that arise?  How do I talk about the hard and not so pretty reality without misrepresenting Wayne or documenting things that will last forever in the World Wide Web?

So, maybe I start with the positive.  Wayne is continuing to be more independent.  He is now able to shower by himself.  He still needs reminders to take a shower, but the process of getting ready, bathing and dressing afterward he does without help.  He may not be as thorough as we would like, but it’s progress in the right direction.

Another positive change we are noticing is that Wayne is able to initiate and carry on more interactive conversations.  Betsy observed Wayne talking with his housemate the other day….S: ‘the Mariners are playing tonight at 7’, W: ‘who are they playing?’, S: ‘the Chicago White Socks’ W: ‘who is pitching?’, S:’_________’, W: ‘Oh, he’s pretty good’, S: ‘yes, but our best pitcher is injured’ W: ‘what’s wrong with him?’…

Still, it seems like there are always new challenges and issues that arise.  Wayne sometimes does not want to do what is asked of him and has had more disruptive outbursts.  Everyone is learning how to read Wayne and how best to handle situations, but it is an ongoing and frequently changing process.  For example, the caregiver may say ‘Wayne it’s time to take a shower’.  Wayne often will say ‘NO!’.  If the caregiver says something like ‘you may not want to take one right now but today is Saturday and you should shower sometime today’ everything may be fine and the caregiver will notice that Wayne, in fact, does take a shower later in the day.  But if the caregiver says ‘Wayne, you need to take a shower now…’ then Wayne may start yelling at the caregiver and it can escalate from ‘F___ You’ to ‘I hate you, I wish you were dead…’.

Even though it’s great that Wayne is showering by himself this process elicits new issues that require additional interventions. Wayne may put on his dirty clothes instead of clean ones, he still yells during the shower if the water temperature or spray isn’t optimal, he may lock the door (who wouldn’t in a shared home?) compromising his safety.

Other challenging areas have to do with not being able to suppress normal negative thoughts and misinterpretations of events.  Wayne might say to someone after they ask him to play a game, ‘that’s a stupid game, it is illogical and a waste of time’.   Or he might start yelling at someone in the parking lot because he motioned for their car to back up but the car stays where it is because the driver doesn’t want to back their car up into Wayne.

Despite not knowing how Wayne is going to behave and having to be prepared for a variety of situations, it is worth the struggle to see Wayne regain his independence and how the remarkable human brain can rewire and repair itself.