Kara Swanson's Brain Injury Blog

March 19, 2023

Prioritizing Successful Recovery Efforts

Filed under: Uncategorized — karaswanson @ 2:12 pm

Most of us, especially early on, think of our brain injuries as one thing. We look at it like it has some kind of answer that will make perfect sense. There’s dirt all over the floor so you buy a vacuum. One of your tires has blown out so you put on the spare. There’s nothing in the fridge so you go to the grocery store or you order carry-out or zip through the drive-through window.

Logical, simple, sane solutions.

Unfortunately, the longer it takes to recover, the more we realize that brain injuries are more like maddening Christmas lights. One light fails and everything goes. You try to find the one failure but it’s all tangled and, when you replace one light, something else is causing the whole string to stay dark.

Most of us do a lot of waiting before we get busy with our successful recovery. There is denial and there is prescribed rest. There are waits to get in to see a doctor and more waits for tests and test results and whatever is prescribed after that.

It is exhausting, frustrating, wearying and heartbreaking.

For those of you who are early in your successful recovery efforts, and for those of you who love someone new to our community, there is a way to slash through the waiting and start making progress on your successful recovery.

Because each of our injuries are distinct and because each of our lives are, as well, only you and your trusted people can decide what needs the most work. Are you single with no kids and you cannot work yet? Afraid of losing the house? Are you partnered but were the primary bread-winner or married and, since your injury, your relationship is really struggling? Do you own a business you can’t manage or have kids who need more than you can give them right now?

What is your biggest problem?

Start there!

It’s too overwhelming to try and fix everything all at once. It’s too time-leaking to just wait for all of this to return to how it was. No one is going to understand how you endure the symptoms of your injury every minute of every day or how many times it affects your daily life.

Only you.

When you begin to prioritize successful recovery efforts, you teach and you share and you receive. You teach those closest to you what you are struggling with and you share the burden of change. You receive information on what is going on in the minds of those you care most about.

Most people, when prioritizing successful recovery efforts, can put the fire out on a lot of high stressors by choosing to work on their primary relationships. We have our own inner turmoil and grief about what we miss in our selves but, too often, we fail to ask our people what they see and what they miss.

If you haven’t asked in a while or if the subject has not been addressed, ask your people what they miss about your old you. Too many people won’t take this simple step because of how painful and scary it might be to hear what our people might say.

You may be surprised.

Often times, partners will admit that they are “over it” and they are tired of you being so self-absorbed and all-consumed with your injury. They miss you showing interest in their day, their struggles, their work, their “stuff.”

Kids might report that you used to bake or you used to cook dinner or you used to whatever.

There’s your starting point.

In an injury that has a blinding blizzard of components, you get started on the relationships that are most important. It’s a conversation. An invitation to team up with those we love in order to find a way through this.

There are ways to eliminate some of the dozens of prickly fall-outs from these injuries.

Do you kids wish you would cook like you used to but you are just too tired by dinner time? Can you install a nap while they are at school? Can you have their favorite meal delivered and invest in dinner chatter with them about their day?

Can you set aside a time each day to allow your partner to share his/her fears, daily stuff, concerns? Can you do it at a time when you are not yet cognitively fatigued so you can actively engage and partner?

What can you do and where can you turn if they report you are angry all time? How can they help you and what strategies can you install if they complain you don’t remember what they told you the day before?

I’ve heard uncountable complaints from brain injury survivors who are so frustrated that their people cannot appreciate all they are going through and continue to bombard them with their “selfish” needs. Can’t tell you how many times I’ve heard that.

The truth is…they aren’t going to understand what you are going through. Not entirely, ever. They are going to want to move on and that will often be way before you feel ready to. They may become resentful of your injury and blame you for not recovering fully because they prefer who you used to be.

Once you realize these things, you have a number of paths you can choose from there. If you choose to try and make your intimate relationships survive, then ask them, invite them, team with them, hear them. And then you get busy solving those problems, one by one. You get help from them on this so that you can participate in that. You change the routine, change the dynamics, change the schedule. You get the help you need to be able to thrive again in the roles that matter most to you.

These injuries hurt everything. Not just our brains. Our relationships, our financial situations, our emotional well-being, how we see ourselves and how others see us.

Figure out what is a priority and get busy there. Just as there are uncountable stories of those unwilling to change and prioritize and get busy, there are even more stories of those who did and are living wonderful lives after successful recovery efforts.

Join us. :))))

7 Comments »

  1. Thank you. Your emails always come when I need it the most. I had not seen my sister that lives out of state since before Covid. She did not understand my brain injury and my limitations during our phone calls. She recently came to visit and could see my limitations. I remember the first time she asked me to do something and I told her that I do not understand what she is saying. She said it again and I told her that I still did not understand what she was saying. She had a shocked look on her face. She gave up and decided that I needed to rest and she would do the task herself.

    She talked to my mom after that and she realized that she did not understand my struggles because I could do basic phone calls with her when I had energy.

    I now feel better because my sister works in the medical field and I would get frustrated with her. How could a person in the medical field not understand I still had daily struggles? She now understands my struggles better and understands my systems that I have set up are very important. Rest and naps are important in my daily life and activities need to be planned and recovery days are necessary.

    Thank you for the help that you give all of us with brain injuries.

    Comment by Karen — March 19, 2023 @ 3:55 pm | Reply

    • I love your post, Karen!! We assume that our people or our medical professionals (or, in your case, you person IS a medical professional) will somehow understand us. It takes a lot of willingness to teach on our part and a willingness to accept on their part. They love us and they are often in denial, too. They don’t want us to be hurt, either. I’m so happy that all of you have made progress in a good direction. Big smiles here. You sure made my day, thank you! Kara

      Comment by karaswanson — March 20, 2023 @ 9:12 am | Reply

  2. I want more than anything to feel connected again. To not always struggle to find where I belong. I know my family loves me, but they have no clue. Although, not all the blame can go to them since I tend to be pretty private. My mom has made the comments referring to “past injuries/symptoms, the famous “everyone loses their keys.” Like you said, they just can’t understand. My tbi happened 20 years ago and here we are, still spinning my wheels. I wish I had the confidence to speak out. Please continue to advocate! We’re fighting every day!!

    Comment by Brittany — April 4, 2023 @ 10:50 pm | Reply

    • Hi Brittany! First off, thanks for sharing and congratulations on battling this dragon for more than 20 years now! You rock! I’m at 27 years now so I can appreciate how long you have been pushing this rock up the mountain. Families are usually a combination of two things: one, they cannot understand something they don’t have and, two, it has hurt them deeply to see you struggle. You have described yourself as “pretty private.” Perhaps you could send them all the same letter, marking the 20 years and thanking them for their support. In it you could teach them what you feel is disconnecting you from them by sharing what you continue to struggle with. By using the 20 year mark, you would be connecting without blame. They would likely be surprised to hear you struggle with certain things that they have long written off as something else. What do you want them to know? What could you ask for their help with in order to connect better with them? You could phrase it as: After twenty years, I’ve learned x, y and z. For example: After twenty years, I know that I do better with activities and conversations that happen early in the day or I don’t do well with surprises or changes in plans. Simple, non-blaming statements might inform and teach them. They likely have no idea how to help you feel more connected like you mentioned in your post. I wish you the confidence to speak out like you mentioned. It is for you and for them. They love you and I’m guessing they would jump at the chance to know how to help. If you can even gift them one simple thing that would really help you, you have started a conversation that is never out of place. You know I am cheering for you. I hope you will keep checking in. Kara

      Comment by karaswanson — April 5, 2023 @ 7:50 am | Reply

      • I am somehow just seeing this. I didn’t know how much I needed to hear your words tonight until they were on my breath. I cried. I’m not sure why but I don’t feel sad. I think I’ll start processing the idea of a letter. Thank you again!

        Comment by Brittany — August 9, 2023 @ 10:53 pm

      • Sometimes the tears just need to come, I think. Some grief there, probably. It’s good to allow the tears. Empty that buck some so it’s lighter to carry. :)))) Kara

        Comment by karaswanson — August 10, 2023 @ 6:49 am


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