Boy, it's been a while since I've written a blog post. I've been working through some issues with a therapist and just have not felt the urge to compose one. But it's Thanksgiving, and I want to share something with everyone before you gather around the dinner table with friends and family that you may have not communicated with much throughout the year.
There may come a time, when someone shares their struggles with you. Be it a death in the family, an illness or injury (temporary or permanent), job or relationship struggles, or more. Try to stop yourself before saying something we have all said before, "If you need anything, let me know."
I've heard countless variations of that phrase over the last 15 years of dealing with the aftermath of my Traumatic Brain Injury. At first, that is very heart warming to hear that so many people care about me and want to do something to help. But something I've learned, is that the phrase ends up being empty words.
Don't misunderstand me. I'm not saying that the people don't want to help. Or that they don't care. But remember, the person you're saying this to is in the middle of a battle and may not know what they need, even if it is obvious to you. They are struggling under the weight of battle and you have now put another task in front of them.
In my case, with something as complex as TBI that affects every single facet of my life, where do I even begin to start at where I need help? Financial, house upkeep, transportation, recreation, or one of the other areas impacted? This is also not a short term issue like recovering from a minor surgery or injury. This is forever. So how much are you willing to take on? What is too much to ask for?
I'm not pointing fingers at anyone. I have said this to many people who were struggling over the years. Always with good intentions because I care that they are struggling but don't know how to help. And I believe those that have said it to me are likewise doing so with good intentions. Rare is the person who says it simply because they think it's obligatory.
I have therefore decided that I will try to not use the phrase. Instead, I will try to identify ways I can alleviate the burden and offer the person specific ways that I can help by listening to them and putting myself in their shoes. I encourage others to do the same. In fact, whenever someone says it to me, I will simply point them to this blog post. So if I pointed you to this post, please don't take offense.
Now that my Public Service Announcement is complete I feel compelled to share the one thing for which I am most thankful. My wife, Amanda, who has been in the trenches fighting the TBI right beside me. Her strength, compassion, and love have been instrumental in getting me this far and keeps me pushing myself to be the best I can be.
I wish everyone a safe and Happy Thanksgiving!
A few months ago, March, was Traumatic Brain Injury Awareness month. I had planned on releasing a blog post documenting many of the struggles that I face in dealing with my TBI. It was supposed to be a way to show the drive I have to move beyond being disabled and never giving up.
No. You didn't miss it. I ended up deleting the entire document. While my intentions for the piece were good, the actual product failed to inspire the emotions I was hoping. In fact, it helped usher me into a deep funk that had me step back while I evaluated my situation.
The blog post itself wasn't enough to drop me into a depression. Don't get me wrong, being reminded of all the hardships I've faced since I began this TBI journey 14+ years ago is hard. But on it's own it wouldn't have brought me into the funk I found myself in. It just added to the stress of family fallout over the boat, financial stress of living on a pretty fixed income, and having an ever growing list of tasks that I found myself unable to accomplish. However, the real clincher was not seeing a path for me to complete my dream project, F/V Escape Hatch.
My plan relied on social networks to help me get the word out in order to help raise funds. I knew that I couldn't just write up a plan and send a request for likes, shares, and money and that's it, though I had high hopes that I would be further along than I currently am. So my vehicle was to document sailing and fishing adventures, woodworking and other house projects, and learning the craft of blacksmithing. I would post these adventures through YouTube videos, Instagram and my blog.
It sounded like a good enough plan. But real life showed the flaws.
1. Sailing Plan - Other than gas, some beverages and maybe a few snacks, sailing on someone else's boat is free.
Sailing Reality - It's a little more complicated for me due to my TBI. Namely, traveling to and from and the cost of the support items that would make it all manageable.
2. Fishing Plan - I had a few offers from people to take me fishing. Some for free, others for just my share of gas, ice, and bait. Sounded reasonable.
Fishing Reality - But again, my TBI made things much more complicated. Namely the difficulty I have in being able to go fishing with just one or two days notice. Usually what happens is I get 1 or 2 invites and than they ghost me. The last guy was "nice" enough to tell me that I'm just not reliable enough for him and he will no longer be calling. So needless to say, this is appearing to be a dead end.
3. Woodworking Plan - Fine woodworking seemed like a viable craft to learn.
Woodworking Reality - But the unpredictable nature of my TBI may mean that I have unplanned delays in a project. Of course during that time the wood moved enough that the joints no longer line up. Which can mean I have to redesign on the fly or scrap a costly piece and redo it. All the projects I had lined up were dependent on very fine joints and I had little ability to make them.
4. House Projects Reality. The basic maintenance isn't good content and the better content stuff is too expensive at the moment.
So I was at the point where no content may mean no fundraising and that means no project. That was just unacceptable. I refused to give up. After so long I found something I want and need to accomplish, taking other veterans out for a fun learning experience on the water.
I am now focused on beginning to blacksmith at home and will soon be creating more content. I will elaborate more on this in the next blog post.
For now, I'm in a better place and moving forward towards my goal. For ways you can help me, please check out this blog post.
Waking up, it's cold and dark. I really want to just stay under the covers and go back to sleep. But that is impossible. My body sends me into a quiet rush to gather some clothes and carefully make my way down the dark hallway with my hands on the wall for balance. I barely make it before the pain in my head caused my stomach to heave up what little was in there. During a brief respite I take my medicine that dissolves under my tongue and use the pain relieving cream and hope they work. I have a few more short moments of "fun" but eventually things settle down. That's good as I have been able to stay out of the ER for years now and I don't want to break my streak.
This is not the first time this happened, nor will it be the last. Often I am surprised by these days, but not this time. Yesterday was a day where my pain just seemed to increase from the moment I awoke. So I am not at all surprised that it has been a rough morning today. Hopefully as the day goes on I will begin to feel better.
Physical labor will be postponed for the day, but I still have lots of computer and planning work that I can complete as I feel up to it. I hope to get back to work on the mantle soon, but in the meantime I will be working on the footage I have so far. One thing I know after living with a TBI for so long, days like this are temporary and i'll be back to it soon as long as I let myself recover.
Til next time, take care all!
It's been almost a month since I've been out on the water. With no end in sight to the issues between my brother and I, my return to the water for this fishing season is questionable. It's quite heartbreaking as I had so many goals set.
But I can't let that stop me from pressing on with my goals. It may mean that it will take longer. The route to my return is unknown. But I am working on it. And it will happen.
I want to prove to other disabled veterans that no matter the obstacle, or how bleak things may look, to always fight. Never give up. You'll have bad days where you want to. You'll have people doubting whether you can succeed. You may even start doubting yourself. But remember, you're living with something few can understand and are still here! You're still in the fight! That proves the determination you have. Use that and find a way. I know I will.
Living with a traumatic brain injury is a difficult companion in life. There are no hard and fast rules for how to manage a TBI because each one is different and manifests in many possible combinations of ailments. There was not a lot of information on TBIs when I first was injured and for quite a few years after. Even now we do not have an idea on what the organic cause is.
My TBI affects me in many ways. I suffer from constant daily headaches that on bad days are quite debilitating and the more activity I do the more I hurt. The headaches also cause many bouts with nausea and vomiting which just makes the pain worse. I don't sleep very well, averaging 4-5 hours a night, sometimes more sometimes less. I have a central auditory processing disorder which makes verbal communication a little difficult, more so with lots of background noise. I have neck pain that has only gotten worse since my surgery in 2010. I also have memory problems, especially short term.
Many treatments were tried before I was retired, and I went through many more treatments after. I've been on most medications, both on and off label. I've done therapies of many stripes. Physical, occupational, emotional, biofeedback, hyperoxygenation,and other western medicine therapies. I've tried chiropractors, acupuncture, and other alternative therapies. I have even had brain surgery. Nothing has delivered relief.
I tried working at several different jobs after I was retired and even went back to school. I was unable to maintain good enough attendance at jobs or school and while bosses and teachers were understanding of my situation, I was unable tokeep employment or stay in school. I was unable to secure any employment after that. Finally in 2011 I gave into the reality that I was truly disabled and applied for Individual Unemployability. After 5 years of fighting the VA and being forced to retain legal counsel after they denied me after a two year wait, as the strain of the fight was too much for me to fight, I was awarded 90% permanent disability and individual unemployability which pays me at the 100% rate.
After 14 years I was finally in a position where I was not going to struggle for the basics in life. Food, water, shelter. I could even start to enjoy life a little and finally put my life together and figure out how you live a fulfilling live. I could contribute to my wife and our success and no longer feel as much like like a burden on the love of my life. We bought a house after living with her or my parents for the first 4 years of marriage and struggling to make rent on a tiny 450 sqft house for another coupe years. We finally have a place we can call our own.
Living with a TBI is still not easy. I still struggle, but instead of struggling to survive I'm now just struggling to thrive. That makes a lot of difference.