By Bill Herrin
One of the most unsettling things I see in the TBI community is when survivors feel isolated and lonely. There have been heart-wrenching posts and comments on our blog site about families that shun (or brush off) their own family members that have experienced a traumatic brain injury. Worse yet, I’ve heard people say that they are totally on their own because they just don’t have emotional support from family (or friends). There is no way that I can offer a solution that will work for everybody – for that matter, even for one survivor…but I’m gonna try to give some pointers that can alleviate some of the frustration and hurt that’s caused by loneliness and the things that can make it feel even worse.
It’s hard work
The very first thing I’ve recognized as the rallying cry of survivors is “you don’t know it unless you’ve experienced it” – and that surely is true. Letting people know how your brain injury feels is like describing the color and texture of an abstract painting to a blind person. They have no point of reference to even work with. To many, the conditions, effects, and feelings experienced by a TBI survivor are inexplicable in words…although some are able to do it. I will be referencing a book offered by Lash & Associates Publishing to help find ways to combat the depression and anxiety that survivors experience, to find ways to cope, and to encourage caregivers as well.
In the book titled “Lost & Found” – a brain injury survivor herself, offers these succinct nuggets of wisdom: “Healing and rehabilitating from a brain injury takes a long time. It continues long after formal rehabilitation has ended. It is the hardest work I have ever done. It requires endless courage, determination, motivation, and
support. It usually involves rebuilding multiple areas of not just your life but also your being – all at once. How could there be an easy solution for all of that!
Brain injury doesn’t have to be a destination. It is a journey. Let it be only part of who you are to become. “Don’t accept timetables for recovery.”
— Jill Bolte Taylor, Ph.D., Neuroanatomist
The Key is Incremental Strategy
Strategies are key in making “baby steps” toward better cognition, a better mood, a better outlook, and a better life. Much progress can be made with encouragement from friends or family…but what about those that don’t have that kind of social “safety net”? Be encouraged. Your will to improve is the key to doing the right things and working to get the right results. As always, there will be naysayers that will immediately point out that “you’ve been this way for a long time” or “you’re wasting your time.” Well, with that kind of encouragement, you’ll be better off doing your best – one step forward at a time. Don’t even consider the steps backward…life hands those to everyone anyway!
Incremental strategies are the ticket to incremental change. Biting off more than you can chew is not a good plan! Start off small, find strategies that work for YOU, and repetition is a good thing. If you’re repeating a step, and you know that you are…that’s a great thing! If you recall how your brain used to process information, but you realize that it has changed…good for you! That is a baseline for working on your cognition. Remember, working in tandem with your doctors, therapists, caregivers, etc. is also very important. You’re not going to make measurable progress without someone that can see your “mile markers” and take note of them. Caregivers can also help with that.
Here’s an excerpt from Lost & Found that is a prime example of working toward healing: “Know that in time, as you heal, it won’t always be this hard. You won’t have to plan and strategize each and every little step you take. So remember you are healing, imagine yourself with a cast on your head and be kind to yourself. Treat yourself like you would any loved one with a serious health issue.
Remember to reward yourself for every successful task and effort, no matter how small. Pat yourself on the back and take a break doing something that will make you smile. We have to be our own cheerleaders now, like the supportive people in our lives were when we were growing up.”
Wow…that’s powerful, but also takes grit and determination. Believing in yourself is always easier when you have cheerleaders – but for those who don’t, that excerpt makes a lot of sense.
Emotional healing can come through a combination of things – here are a few (a more detailed version is available in the book, Lost & Found), but here’s a brief overview… Keep a grateful journal or victory log; Discover your “inner poet” by writing phrases that are meaningful to you; Journaling about your day can help you build confidence and see progress; Keep your perspective by noting improvements on a calendar; Challenge and learn from negative thoughts; Take time to smile; Forgive yourself – can’t do what you used to do? You’re only human! Remember that you’re still the same unique and valuable person that you always were; Try to have positive people around you…that supports your life moving in a positive direction; Work with art. Creative outlets are rewarding and fun. These are things that encourage and grow you as a person – with or without others’ approval.
Many times, people in your life are grieving the loss of the “old you” and trying to establish how to interact with the “new you” – just like you are. That can also make an awkward transition for family and friends. Seeking spiritual counsel can be a huge boost as well – if you attend a church, synagogue, etc., or want to…that could be a great way to grow your positivity in life and make some new acquaintances too.
Here’s another excerpt from Lost & Found: “Keep in mind that your family members and friends may be grieving too. They have lost the person you used to be and the roles you used to play in their lives. They don’t know how much of your former self will return, or when.”
And a quote from the same book: “Honoring your feelings is what helps you move beyond the pain.”
— Janelle Breese-Biagioni
This last excerpt from the book really sums up what so many TBI survivors need to hear…
“Remember you are healing, even if you can’t see a wound! Think of your brain in a cast, as it would be if you broke any other part of your body. If you broke your leg, you wouldn’t expect yourself to run a marathon right away, even if you were previously a marathon runner. First, you would be in a cast and you would rest a lot. Then you would start walking with crutches on even surfaces. The next step might be walking with a cane. You get the idea; it would take a lot of healing before you could run again, never mind run a marathon! Most of us try to run marathons with our brains all the time!
You won’t be able to do everything you used to, at least not right away. Everything will be harder and take a lot longer to do than it used to. You can compensate by cutting back, simplifying and being kind and patient with yourself. Avoid the tendency to push yourself too hard. Rehabilitation is a delicate balance between challenging yourself enough to promote healing and not so much that you have discouraging setbacks.
So picture yourself with a cast on your head and remember to rest, celebrate the smallest gains and balance out all the hard work with something that makes you smile, every day. You are engaged in one of the toughest challenges of your life, if not the hardest but it will get easier in time.”
Root for the Home Team…YOU!
In closing, the hardest takeaway from all this is that “going it alone” is hard but doing it without positive people surrounding you may be even harder. Cheerleaders are great, but they have to be rooting for the home team…and you’re the captain of the home team! Make the best choices that you possibly can and be encouraged – knowing that if all else doesn’t go as planned, you can rely on yourself to try and make things better. And you can also claim all of the credit. As always, be sure to let your doctor(s) know your intentions, and hopefully, they’ll be excited for your long-term efforts to improve. TBI is tiring, overloading, depressing at times, and can cause irrational behavior. With all that said, there’s always room to plan for incremental change.
Here’s a great and inspirational quote from Beverly Bryant:
“Being a brain injury survivor = Being a stranger in a familiar place.”
Amen to that!
If you’d like to know more about the Lash & Associates book titled “Lost & Found”…just click this link!