The Final Chapter

Two years ago 8/31/14 at approximately 10:45am I unexpectedly began a new chapter in my life. Two years ago. Sometimes it feels like time has flown by and other times it feels like a lifetime. I remember thinking and writing about how I wanted to fast forward so badly to bypass all of the hard times. I wanted to get through the pain, discomfort and all of the change as quickly as possible. SO, here I am two years later thinking, “Am I where I thought I would be two years after the accident?” The short answer to that is no. I didn’t understand the complexities or recovery from a brain injury and losing an eye. I just wanted to get “back” to my life as I knew it. Two years later I recognize that there is no going back, there is only me moving forward with the new me. There also is no fast forwarding because we must live through and fully absorb all of life’s experiences whether they be positive or negative.  Dealing with the hard shit is not fun but, dealing with it all head on has gotten me to where I am today.

My doctor asked how I would be spending the day of the anniversary of the accident and I said I didn’t know. He said that I must claim the day as mine and own it. I must do whatever I want to do with it. If I want to ignore it, ignore it. If I want to celebrate it, celebrate it. Today I thought a lot about all that we have endured. I looked at pictures and videos beginning with the day of the accident to the present day. IT all made me realize what I want to do 8/31/16. It will be a day that I celebrate Resilience, Strength, Courage and Love. Resilience because I realize that nothing can keep me down. There most certainly are things that can slow me down and make me pause but nothing will keep me down. I have more fight in me than I ever dreamed imaginable. Strength and Courage often times came from unknown places. At my darkest hours I had to dig deep when I was about to reach my breaking point. The strength and courage came from a variety of sources. Sometimes from within, sometimes from a loved one and other times from a higher power. The days when I was so down that it was hard for me to get up from the bed I played a song called, I Smile. The lyrics spoke to me, often bringing tears to my eyes and giving me the strength I needed to get up.

Today’s a new day, but there is no sunshine
Nothing but clouds, and it’s dark in my heart
And it feels like a cold night
Today’s a new day, where are my blue skies
Where is the love and the joy that you promised me
Tell me it’s alright

I almost gave up, but a power that I can’t explain
Fell from heaven like a shower

I smile, even though I hurt see I smile
I know God is working so I smile
Even though I’ve been here for a while
I smile, smile
It’s so hard to look up when you been down
Sure would hate to see you give up now
You look so much better when you smile, so smile

Lastly, I’ll celebrate love because I’ve been surrounded by unconditional love throughout. When times got hard the love was stronger than ever. I will never forget how that made me feel.

The journey the last two years has been a difficult one. For a time there was no light at the end of the tunnel now I know there is a bright light because I can see it. I just don’t know how the light will shine on me. My focus is to continue to work hard and give my recovery 110% effort. If I do that I can not go wrong.

I’ve shared so much through my posts these past two years. I re-read some of my posts and damn I was HONEST and shared a lot! I had to laugh. Naturally the frequency of the posts has decreased over the past six months. As I’ve moved forward emotionally the progression has led to me processing more privately. Everything need not be shared at this point. So, this is it for me. I may come back to it at some point in the future but for now I’m saying Adios to, “My Accidental One-Eyed World.”

It’s been good to me. So, good to me. Putting my thoughts down on paper helped me so much. The feedback and support was incredible. CaringBridge and WordPress saved me on many occasions. Thank you so much.

Here is a quick last update:

  • I golfed!! Just nine holes but I did it. I was scared, anxious, nervous, nauseous and every other feeling you might imagine but I did it. I had to do it and I’m glad I did. And yes, as crazy as it might sound I would do it again in a heartbeat.
  • I fell and damaged the tendons and ligaments in my wrist. I have to wear a splint for three weeks. So, not being able to use my right arm combined with not being able to see on my left has been a real pain in the ass.
  • Getting another eye in a couple of weeks. On my fourth one now as the fit just hasn’t been right. Getting a mold of your eye socket is awful. Can’t wait to not do that again for several years.

I’ll close by saying that I’m so appreciative of you all. Thank you for taking this crazy ride with me. May our journeys be eventful, full of love and pain free!!

Adios!!

Flowers and Good Days

When I was discussing the new landscape and residents currently residing in my head (A Snapshot of My Brain) with one of my doctors two questions were posed: (1) What is a good day? and (2) What is a flower? I was stumped by both. I’ve been trying to work through both questions but still haven’t been able to answer either.

What is a good day? My natural response is to answer the question by stating all of the things it shouldn’t be. It shouldn’t include: headaches, migraines, blurry vision, lack of balance, tiredness or any troll activity. But, the reality is all of those things are my new reality so if I wait for a day in which they aren’t present I will never have a good day again. So, I have to think about a good day in an entirely different way. This is where I struggle. Changing the way you think or have thought for 45 years is challenging. Here’s my latest attempt…

A good day could be one in which I have the opportunity to appreciate and embrace my life and those I love? A good day could also be one in which I am able to perform a good deed for someone in need or someone I love? A great day would be one in which I felt I made a positive impact on someone’s day or life?  These aren’t unique thoughts by any stretch of the imagination. Many of us aim to lead lives in which we put into practice all of the above. I’ve thought this way in terms of my overall life but never put it into practice daily. It’s actually putting it into practice daily that is the biggest challenge. We so often are accustomed to measuring our time/days in more concrete ways. It’s so much easier to think in terms of numbers, reports, meetings, social outings and social engagements. This new way of thinking/living takes a tremendous amount of self awareness – daily. It takes a hell of a lot of work.

What is a flower? In my last post I discussed the new terrain and how it is void of flowers. So, what would make flowers grow? And, what exactly is a flower? A reduction in the number of migraines and overall headaches would mean there are less trolls. IF there are less trolls at work destroying the land then there is more of an opportunity for flowers to grow. The seeds are there they just need to be watered and nurtured. Once the trolls ease up a flower might be: a day without a migraine, a social outing that doesn’t result in a migraine, a week with a healthy eye socket, a walk or a workout with no concussive symptoms, a drive in a car that last longer than an hour without the two day recovery, an evening where I sleep eight hours or go to sleep before 3am. A rosebush would be: waking up in the morning without having the concussive symptoms define my day, driving myself to an appointment or preparing a meal for my wife without cutting myself. As I am writing this it seems more like a wish list. Or it might be my own personal treatment plan with short-term goals and long-term goals! Ha!

The key to all of this is embracing and appreciating my life for what it is now and being patient with the progress. Learning that I have no control over the outcome(s). The only thing I can control is my commitment to recovery.

After re-reading this post I can say with 100% certainty that there are a few flowers. They’re blooming slowly and sporadically but they are there. Rosebushes next…

 

 

A Snapshot of My Brain

One of my doctors asked me how I would describe how I feel everyday to a friend. I was stumped by the question. It’s hard to imagine someone who hasn’t experienced the same injury understanding how I feel. A few days after the doctor posed the question Adriana told me she was reading a book in which the main character had suffered a brain injury and she found that it was hitting a little too close to home. After another couple of days I saw an Excedrine for migraines commercial in which technology was used to mimmic a migraine so that a mother could better understand her daughter’s pain. The timing of both drew me back to my doctor’s original question. So here goes…

When I think of my brain pre-accident I envision a bright, vibrant, lush landscape. An untouched and uninhabited island with mountainous terrain, valleys, waterfalls and countless species of wildflowers. Paradise. Always sunny. Cloudy and/or stormy days are a rare occurrence. On August 31, 2014 an earthquake/tsunami struck Paradise. They had not been on the radar so with no forecasting there was no preparation. They hit simultaneously without warning. The intensity was such that the landscape changed in an instant and was forever altered. Gone were the wildflowers, the bright, vibrant and lush landscape. Replacing the beauty that made paradise, paradise was a rocky volcanic formation. Black, hard, soot covered, ashy rock formations that darkened the skies. It resembled cities I had only seen in pictures in which residents wore face masks and were unable to see clear skies due to the level of pollution. My new world.

What made this storm even more unique was its ability to not only alter the physical landscape but how it was viewed. Monocular views only. Uninhabitable you would think. But the once quiet and uninhabited island was colonized by a family of trolls. A family of monocular trolls who specialized in mining. They travelled the world in search of new rock formations. The trolls formed a home and community almost instantaneously and got to work. They worked day and night and continue to do so. They pick at the rocks, they drill, sometimes they set off explosions, they are always hard at work. Quite often they work so intensely that I beg them to take a break. Please take a break! But my pleas fall on deaf ears. Pick, Pick, Pick. Black clouds form making it difficult to see. Nausea, dizziness, blurry vision. And I still can’t get the little fuckers to stop. Talk about an incredible work ethic. Shit! There work makes it hard to focus, to listen, to have a conversation or to relax. They heighten my senses making them that much more sensitive. Sounds from the world outside of my head are so much louder and often unbearable. The trolls drain me. So much energy is spent trying to ignore them and live my life despite them that I find myself picking and choosing what I can and can not do. I’m limited.

Before I open my eye each morning I check in on the trolls to see what the damage is. Is the picking light? Are they drilling? Have they made it so cloudy that my vision is blurry? Did they wreak havoc in my eye socket? Once I get a status update I sit up. Am I dizzy? How tired am I? I get up from the bed. How’s my balance? Constant status updates. The trolls are working. How much sound can I tolerate? What is too much? Constant updates.

These fuckers are working overtime today. Well, even though I had tasks planned for today they are crossed off of the list and today is a REST day! They are picking today but not drilling. Alright!!! I can get tasks completed today. Not knowing what each day will bring is frustrating. Planning is almost impossible.

Yup. That is how it works. Updates all day, all of the time. Checking in on the trolls. I was prescribed a troll annihilator in March which didn’t do much annihilating. It has helped to keep them to a slow and steady pick with occasional drilling and explosions. So, they are kind of under control with occasional outbursts. The timeouts have absolutely helped to allow me to do more. Progress.

The black foggy mining clouds are ever present which help to ensure that the trolls are soot covered.  Looking forward to the day when I no longer need a mining lamp to see through or past the clouds.  My doctor asked me if flowers have begun to grow on the rock formations and I said no. I said I didn’t know if flowers would grow again. After some thought I began to think no…no flowers yet but seeds have been planted. Maybe one day the trolls can learn to live happily in a bright, vibrant world full of wildflowers. Maybe they can one day give up mining and learn to sing old school R&B and Hip Hop Songs? Maybe a little Jill Scott? Prince? Maybe.

Recovery…is Work, Work, Work, Work, Work. Putting in overtime everyday. Won’t stop. Can’t stop.

 

A Source of Social Discomfort

About a month ago I had a very interesting discussion with my medical team. The topic of the discussion was long-term recovery, societal expectations and adjusting to an ever changing support system. It was a tough conversation emotionally. I’m guessing that is why it took me so long to share it. I had to let it marinate for a while…

As friends and family when we first learn of someone being: diagnosed with a serious illness, a victim of an accident or tragedy our response tends to be immediate. We want to be present and offer support. When you have a large number of people who believe in you and are expressing their love and support you feel as if you can conquer the world. There is no way you can fail. You will beat the odds and heal faster than the doctors’ believe! You feed off of all of the positive energy around you.

As months pass the number of people in that circle of support begin to dwindle. The positive energy isn’t as powerful or pervasive. Impatience begins to takeover along with a level of discomfort. “You’re better right?” “You should be ready to go back to work now?” “You look really good – you’re not better yet?” What I’ve learned is that we like to fix things. Tell us how to fix whatever is broken or wrong and we are good. But, tell us we need to be patient and better understand HEALING and we’re lost. We’re uncomfortable. A broken body part with a specific timeline for healing is easy to understand. There is a prescribed timeline of healing and physical therapy then we’re better. Anything that is more complex with layers of healing that isn’t as blatantly visible is uncomfortable. We fear what we don’t understand. The term that was used to describe me in this conversation was, “A source of social discomfort”. I am a source of social discomfort to some family members and friends. They can’t fix me so it is too hard for them to handle. They avoid me. They avoid talking to me, seeing me or any interaction with me because it is too difficult for them. And, if they do interact with me there is no discussion of where I am in the healing process.

When I heard those words for the first time and let them sink in, “A source of social discomfort” I cried. I cried because someone had made sense of what I had been feeling and spoken honestly about it. There was no way to sugar coat it. It was what it was. What made me sad was that I knew that I had done to others what I was now experiencing. Boy do I like to fix things. I want them fixed and in a hurry.

The thing is this…when you’re dealing with long-term recovery you need a support system throughout. Life happens so the number of individuals present in that “system” will vary from time to time. But, being patient, supportive and present means everything. That energy is needed most 6, 9, 12, 18 months in when you’re tired. When you’re emotionally drained and tired of pushing that extra smile, hug or vote of confidence means the world.

We all know people who have been struggling with a health condition for quite sometime. I know several. There are small ways in which we can help brighten their day or make it just a little bit easier. Let them not feel like a source of social discomfort.

That Cranky Bitch

Since the beginning of the year my eye socket has been especially cranky. She is very temperamental. Too much light, lack of sleep, dryness… there are a whole host of things that result in a long list of unpleasantries. Itching, burning, redness, not so pretty discharge, it’s just all bad. So, I try my best to keep her as happy as possible because a happy her results in a happy me. But it appears as if she is not a fan of 2016.

It all started December 31, 2015…At first we thought it was another infection but it lingered. Then we thought it might be allergies but who the hell has allergies in the middle of a snow storm? Then we thought it might be the dryness of the winter months? Then about five days ago I noticed swelling on the left side of my face along with worsening eye socket symptoms. On Monday while washing my face the prosthetic took it upon itself to jump ship! Yup! Half an hour before my Monday appointment! What I saw was an extremely irritated an unhappy eye socket. Words out of my mouth, “You have got to be fucking kidding me. This shit did not just really happen!” I immediately consulted with my adviser (Adriana). She inspected the eye socket when she arrived from work and scheduled an appointment with my surgeon (Ophthalmologist). I decided to leave the prosthetic out and oddly enough my eye socket felt a little better.

On Wednesday morning we met with the doctor and it turned out to be the two hour appointment from hell. He poked and prodded. Hurt me to the point that I said, “You are hurting me. You should know that I’m resisting the urge to kick you.” Yes, it was that uncomfortable. After the first hour or so of torture he decided to dilate my good eye. I’m already half blind this just did me in completely.

My good eye is healthy the other eye socket…

We found out the following:

  • I have protein build up in my socket and upper lid. This is what happens when you put a prosthetic in an eye socket.
  • I don’t have an infection but appear to be having an allergic reaction. An allergic reaction to the prosthetic. YUP! Crazy shit!
  • I was prescribed antibiotic ointment and drops for two weeks.
  • Not sure where the swelling is coming from so I’m having a CAT Scan to rule out a couple of things: (1) The screws in my cheek immediately under my reconstructed eye socket aren’t damaging my sinus cavity. (2) The swelling isn’t a result of an allergic reaction to the implant.
  • Lastly, my lower lid has a lot of scar tissue which has become painful. Apparently the injury and surgery have resulted in a lack of tissue. So, the doctor doesn’t believe that I have enough tissue to hold the prosthetic long term. He thinks it would be best to have surgery to reinforce it. I of course think that is the last resort. He doesn’t. The surgery sounds like an absolute nightmare! They would remove a portion of the roof of my mouth to reinforce the inside of the lower lid. Adriana and I both gagged and squirmed when he told us. I said, “NO!” Just tell me what the other options are, I’ll do anything. ANYTHING! He believes I’m going to beg him for it because the discomfort will be too great. HA! I pray that he is not right.

Ladies and Gentlemen – this was by far the worst appointment I have had in a while. The difference was my mindset. I left thinking damn that was FUCKED up. Adriana and I both looked at each other and shook our heads multiple times. I am stressed. I am concerned – naturally. But, there was no crying. There was no moping. There was no pity party. We had a matter of fact discussion about next steps along with a couple of good laughs regarding this whole process because it has been quite a process!

Thing is whatever has to happen next has to happen. I can’t stop this train it is rolling with or without me. I do hope that the path does not include another surgery. I hope that we can stop the treks through rough terrain. I’m ready to coast for a bit to that final stop. That would be sweet.

And please no more appointments from hell.

Regrets

I received quite a bit of feedback regarding my last post. Everyone was a bit too nervous to comment publicly. However, the texts and the phone calls I received led to in depth and funny conversations about the uncomfortableness in dealing with long term recovery. Thank you.

My battle with insomnia has been well documented on WordPress and Caring Bridge. I struggle nightly. Last Thursday night/Early Friday morning I thought I was ready to pass out so I crawled into bed and closed my eyes. But, my brain was not cooperating! My brain wanted me to sit down, open up the computer and write “The Glazed Over Look”. The post had been marinating for days but I had refused to finish it. I thought about beaches, the ocean, the country. I counted! I did everything you could possibly imagine to try to fall asleep but my brain was writing the post line by line. It just wrote itself over and over in my head. So, I got up opened up the laptop and finished it. I typed what felt like a broken record playing in my head. Once I was done I passed out. I slept.

When I woke up I thought about what I wrote, how it came to be and how I felt once it was out of my system. The first thing that came to mind was letting go. It feels good to let go. I don’t want to hold onto anything that might feel like baggage anymore. I work through whatever it is and let it go. I share how I’m feeling. I’m more aware of myself and everything and everyone around me. I ask questions. I get feedback. I don’t want to live with regrets. They weigh you down and keep you from moving forward.

When I look back in time I’ve had many regrets. Some were rational and others not so much. I regret not having pushed myself harder in certain situations. I regret not having followed through in other situations. I regret having taken my health and daily life for granted. I could go on and on but that was the binocular version of me, the monocular version doesn’t want to do that anymore.

I don’t want to think about what I should have said or done. I don’t want to look back and think, “I should have…” I want to do it. So, if I feel the need to share what is in my heart, I will share it. I’m certain I won’t be 100% successful but I will try my hardest to live with no regrets.

I should sleep like a baby now…

 

The Glazed Over Look

When we encounter family/friends/acquaintances after the initial greeting we usually begin the conversation with, “How are you?”. The response we get is dependent upon a variety of factors: emotional state, health, family, work, social life etc. The response can be balanced across several factors or completely unbalanced towards one. For example, you can greet a parent and ask, “How are you?” and they will answer in the plural tense (We) and begin stating all of the activities their children are enrolled in. You can greet a workaholic and ask them the same question and they will answer in the plural tense (We) and begin discussing their company/organization’s new projects. Someone who is all about their social life might also answer in the plural tense (We) and tell you all about the latest restaurants and bars in the city he/she has visited with friends. There is the family member/friend/acquaintance who leads a balanced life who will answer in the singular tense and plural tense when necessary and share a little bit of everything. Regardless of the form in which the answer may come, if I ask the question I want to know. It isn’t just a question for me, I really want to know and I am going to try my best to be present.

When I am catching up with people I’m always surprised by the response I get when I’m asked the dreaded question (It’s become that)…”How are you?” What I have to share is what I’ve done that day, week, month(s). I’m not working. My socializing is minimal. I go to appointments. I see new specialists. I take new meds. I rest. I exercise. I’m recovering. That is what I do. I try to make it sound a bit more entertaining by inserting a little humor but really that’s all I’ve got. So, when I’m asked the question and the response is the glazed over look, it’s disappointing. I immediately shut down and make a mental note of not sharing how I am with that person in the future. I would much rather discuss vacation plans, an exciting social life and pending work projects but that is not my life right now. My full-time job is my recovery. If you’re not interested in the answer please don’t ask the question because the glazed over look makes me feel shitty.

This quote really struck a chord with me when I first read it years ago but became so much more meaningful the last 16 months.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”Maya Angelou