(Editor’s note: Writer, BEST guest blog contributor, and advocate, Isaac Peterson, pays tribute to a special doctor that encouraged his self-care strategies and wellness. Together, they made a great team. KT)
I was impressed enough with Dr. Enkema that I used him as an example of what to look for in a doctor in an essay I wrote for this blog a while back. He is a medical professional who took a personal interest in me and actively encouraged me to ask questions. He went to the trouble to learn about me, not just my condition and my medical charts, and he allowed me to actively participate in decisions about my health and treatment.
And while he encouraged me to ask questions, and he also always made sure I understood the answers.
When I first moved to Tacoma after the stroke I had experienced, I had the extremely good fortune to be assigned to his care. I’d never actually had a regular doctor and for him to be my first doctor was a sign that things would work out just fine for me.
However, I soon discovered that he wasn’t just my doctor; he was my friend.
And he was also a welcome change from the previous doctors I’d had in my post-stroke recovery.
While Dr. Enkema actively encouraged and supported my empowerment, I sadly can’t say the same for the doctors ahead of him.
From the moment I first woke up in the hospital and learned I’d experienced a major stroke, I knew without a doubt I would get better. My brain was scrambled, and reality came in and out; but underneath it all I knew I was still me.
I still had all the qualities that had made me who I was, and knew it (though I didn’t know much else at the time). I just knew the real me was in there somehow, and I felt I knew how to wake him up and coax him out.
I wasn’t what you would call a good patient though.
I resisted almost everything they told me I had to do because I felt I knew what was best for me.
I had to be dragged kicking and screaming to physical therapy, speech therapy and occupational therapy.
I remember asking several times why I needed to go through all the therapy, since I knew that with some hard work and dedication, I would get it all back. The reply was invariably, because everybody that’s had a stroke needs to go through it.
About speech therapy, for one example, my rebellious self would say, I already speak better than anyone on this floor and probably in this whole hospital.
I’ve always been contrary like that, and always extremely confident in my ability.
It all felt like a huge waste of time, since I knew I would get it back, left to my own devices. I had a very strong feeling my recovery was up to me, and I felt I knew best what I’d need to do.
A friend had brought me books—I’ve always been an enthusiastic and voracious reader. None of it was light reading, and I was anxious to dig in, especially since there was only the television otherwise.
But hospital staff had other ideas.
When I tried to read, someone on the staff usually came in, horrified, and tell me not to do it. I asked why not, and was advised that I might overstimulate my brain.
Well, I felt my brain needed stimulation, and said so.
Similarly, I refused to lie in bed all day and night. I would get up and wander—around the whole hospital. Hospital staff would chase me down and swoop in like a SWAT team. Apparently I was considered a high fall risk, but I never let that get in my way. They would say, you can’t DO that!
And I would say, sure I can do it—watch.
But I’d still end up being carted off to my room.
After a bit they put a wrist band on me that I couldn’t remove, and that would trigger an alarm when I went past a certain point. Fall risk or not, I never fell and still have not fallen to this day. I just won’t allow it.
I hope none of you never had or never have these kinds of things happen to you, too.
Finally, after a solid month of confinement, I was discharged. The prognosis they gave my family was that I would need round the clock care, that I would be feeble-minded, would need help with even the simplest tasks, and all of that. They made me take a walker with me, but I have never used it and didn’t need it in the first place. I never bore the slightest resemblance to their prognosis.
I never accepted it.
Within about three months I was a contributing writer to this blog, and all indications are that it’s gone pretty well.
I understand the hospital staff were covering all their bases and trying hard to avoid liability issues, but apart from that, I never understood how they could give me that prognosis that was so far off the mark from the real me they had observed every day. I knew there were people who fit that prognosis, but I knew it didn’t describe me, or what I could and couldn’t do.
I felt at every turn they were trying to condition me to feel and accept that I was helpless rather than encouraging me to recover and be independent. They knew everything about my vital signs, but they didn’t know one thing about the man I am. They could measure my blood pressure, but they could never measure one of what I feel is one of my biggest strengths—my willpower.
But they probably figured I had no willpower because, after all, I was coming off a massive stroke. Besides, they had done every possible thing they could do to limit my will and convince me I was helpless. And it apparently meant nothing that I was able to function so rapidly, and at such a high level, so soon after a stroke.
Even though I wasn’t at my pre-stroke best, I still had defied some pretty overwhelming odds, just surviving the experience. Their textbooks could tell them all the medical stuff they needed to know about strokes, but those texts did not account for the reality of me.
I had begun my own self-care while still hospitalized, right under their noses, but everything they did seemed to be intended to convince myself that I was helpless and powerless. And that is something I will never accept.
All those times I was told I couldn’t do something, while I was in the middle of doing that very thing, I rebelled against. Don’t, can’t, and no are all just words when you’re recovering from a traumatic brain injury. Even during the first dark hours and days, I was thinking I wasn’t going to let a little thing like a stroke keep me down or hold me back. Against all that, what chance did the hospital staff stand?
I told Dr. Enkema about all that, and he assured me I had done the right thing and that my attitude should be one held by more patients and professionals alike. He told me once he thought I have an uncommonly strong will—I just think I’m uncommonly stubborn. Not like I’m something special, but I’ve always believed we have more say about our circumstances than we allow ourselves to believe or accept, and Dr. Enkema fully agreed. If only he had been one of my doctors in the hospital.
I’m sure going to miss him.
Isaac Peterson grew up on an Air Force base near Cheyenne, Wyoming. After graduating from the University of Wyoming, he embarked on a career as an award-winning investigative journalist and as a semi-professional musician in the Twin Cities, the place he called home on and off for 35 years. He also doesn’t mind it at all if someone offers to pick up his restaurant tab. Peterson also welcomes reader comments. Email him at email@example.com.
(Editor’s Note: For Brain Injury Awareness Month, I reached out to our BEST Team and BEST guest bloggers to gather their thoughts, ideas, tips and strategies on self-care. Marc Macialek, writer, mentor and creator of recoveringfromtbi.com , shares some important ideas and thoughts in his latest guest article below. Thank you, Marc! KT)
Kim wrote me at the beginning of March asking for my thoughts on self-care to contribute to the BEST campaign of Super Self-Care during Brain Injury Awareness month.
Honestly, I was flattered that she would ask.
I always meant to write something up. But here we are at the end of the month.
I saw fellow survivor and BEST contributor Kirsten Short’s contribution to the BEST campaign on Twitter about an hour ago. I immediately felt guilty.
Not because of anything that Kim, or anyone over at BEST said, but because of my own expectations for myself. I’m a people-pleaser by nature, and I want to make everyone happy.
As I’ve sat here thinking and feeling bad about myself, it dawned on me that this is exactly the kind of thing that my fellow survivors (and sometimes caregivers) need to hear.
All of us have people in our lives. And sometimes those people will ask for something. It’s almost never malicious. They generally don’t know what’s going on with us behind the scenes.
Most times from their perspective, it is a small thing. Perhaps its help with a project. Sometimes it’s an invitation to an event or party or get together.
Many times, they see something valuable in us and want us to be a part of their lives.
The reality for many of us survivors, and for many caregivers, is that there simply isn’t as much of us to go around.
A survivor’s mental, cognitive, and energy resources are spent holding basic life functions together. If you have cognitive bandwidth to be able to work, that often saps the remaining energy you have left.
Caregivers can be exhausted after the selfless work of caring for their loved one.
In these circumstances it can be a difficult, but necessary, decision to care for ourselves instead of meeting the expectations or desires of those on the outside.
Thinning out our to-do list can be very difficult. Often it means setting new boundaries with family, friends, colleagues, and organizations that we participated in.
How do you handle these conversations? Especially when you are a survivor and have an invisible injury.
Here are some things to keep in mind:
Prioritize: Look at all of the demands you have (social, personal, and professional) and decide what you want to do. Know that this is a guess and you may need to reign things in tighter or relax them as you understand how much energy you truly have.
Be kind but firm: You did the work in step one to breakdown what you felt comfortable doing. As you explain your situation, some people will be respectful and supportive. Others will not. And the people who fall into each category aren’t necessarily who you’d expect. Regardless, stand your ground. Have the necessary conversations when you have sufficient bandwidth to do so.
Relax: One thing that many of us yearn for is a feeling of normalcy. Just this week, I had a few interactions in some Facebook support groups that bear mentioning here.
- A woman who had been dealing with her injury for a few years had noticed some recent improvements. She wanted to spend a night with her husband like they used to do before her injury. For them that meant going out to eat and then going dancing. Her husband suggested that it might not be wise to push the envelope so far so quickly. They opted to have dinner at home and put on some music and dance.
- Another lady was lamenting how she felt after going out to do something she enjoyed. She had a terrible headache and was feeling exhausted. After expressing her frustration, she said how nice it was to briefly feel normal again.
Part of caring for ourselves is being able to relax and enjoy ourselves from time to time. That can be difficult for TBI survivors and caregivers who are ever vigilant about managing energy.
Perhaps it is OK to let ourselves go from time to time. Nothing crazy. And we don’t want to put anyone in danger. But in a reasonable way, be ourselves. Even if it means paying for it for a few days.
A Long-Term Plan
While letting loose can certainly help us in a one-time event, we need some day-to-day tools that are sustainable.
This can happen through a routine that lets us decompress, regroup, and recharge our batteries.
There are several ways to do that:
Exercise: Moving our bodies is powerful. It’s great for our bodies. It’s great for our brains, It’s great for our souls. Simple yoga may be all you can do if you have mobility or balance issues. Walking, cycling, or running may be options if you are facing mostly cognitive deficits from your injury. In any case, double check with your doctor before you get started.
Meditation: With some practice, I have been surprised by how refreshed I feel after 10-15 minutes of meditation. It helps greatly with my temperament issues, some headaches, and over-stimulation. It has definitely been one of the more unexpectedly effective tools to manage the effects of my injury. There are many ways to meditate, and people like different things. If you’d like to try what I do as a starting point, you can check this out here.
Beware of over-stimulation: It’s common for many survivors to lose their filter to external stimuli. Simple things like background noise and too much screen time can wear us out. What exhausts a brain means different things for different survivors. For many people it is sound. For others it is visual. Personally, visual over-stimulation drains me. When I’m tired, though, sounds can also wear on me. If this is a factor for you, learn what it is and how to minimize it. You will find that you have more bandwidth to deal with other things.
How do I take care of myself?
This was one of the writing prompts that Kim sent in her email. I snickered audibly when I read it. Because, to be honest, I have not been doing a very good job lately.
Life recently has been extremely demanding.
We’re a family of four now. Our oldest is a rambunctious toddler and we have an almost 3 month old infant.
I seriously doubted that would happen after I had my injury.
Family and professional responsibilities are requiring me to work a lot of hours and not get a lot of sleep.
We have made some decisions that make life difficult in the short term in order to achieve some long term goals that are very important to us.
Overall, I am extremely grateful that these activities and this level of exertion are even options. I don’t know how I keep up.
Then there are the days where my brain rebels and reminds me who’s boss. Bad temper, poor memory, poor impulse control, and bad prioritization all rear their ugly heads.
My goals, my progress, and most of all, my family suffer for a few days while I regroup and get back to my more sustainable routine.
Those are the days that I remember that no matter how long ago my injury was, it is still there. It’s ready to show itself whenever I try to ignore it. Sleep, boundaries with others and rejuvenating activities are what allow my brain to calm down and bring my life back into balance.
Adequate self-care is very personal to every survivor and caregiver. Be honest about what it means for your, and your bran will thank you for it.
Marc Macialek survived a traumatic brain injury in spring 2012. After struggling to find good resources to help with his recovery, he was able to connect with a doctor who gave him tools to make the most of his recovery. Now he works to help survivors and caregivers find the resources to make the most to survive and thrive through the recovery journey. You can find more of his writings at his site recoveringfromtbi.com.
While the March 2019 Brain Injury Awareness Month has come to a close, our theme for the month, Super Self-Care has not. Self-care is an important part of our recoveries, journey forward and day-to-day lives.
Let’s keep it up, shall we?
Here’s to your health, self-care process, and empowerment!
Test your Super Self-Care knowledge!
Answer the following five questions. There is only ONE correct answer for each question.
You can check your answers below.
BEST of luck!
1. What is self-care?
A. Taking care of your body.
B. Taking care of your mind.
C. Taking care of your spirit.
D. All of the above.
2. What is a good way to practice self-care?
A. Getting enough sleep.
B. Eating healthy foods.
C. Participating in an activity you enjoy.
D. All of the above.
3. What is self-care NOT?
A. An occasional reward or surprise.
C. Just about taking a bath.
D. All of the above.
4. True or False: Self-care is something you must do alone.
5. Where can you find resources about self-care (😉💚)?
A. The BEST website brainenergysupportteam.org.
B. The BEST website blog and BEST e-newsletter.
C. BEST Social Media (Twitter, Facebook, Pinterest, Instagram and YouTube).
D. Our BEST Space.
E. BEST Support Groups.
F. BEST in Second Life.
G. All of the above.
- Answer: D All of the above. Self-care is any activity that we do deliberately to take care of our mental, emotional, and physical health. To live our BEST lives possible, self-care is essential.
- Answer: D All of the above. Any one of the practices noted above are a great way to take care of yourself.
- Answer: D All of the above. Self-care is something we can do every day. Even though the phrase self-care suggests the word selfish, that’s not true. Self-care is an important way to refresh and replenish our bodies and minds to help ourselves (and to help others, too). It’s also definitely more than taking a bath. It’s about the food we put into our bodies, discovering what we need for support, and finding the activities that help us feel good about ourselves.
- Answer: False Practicing self-care can be done in a group, with a friend(s) or a partner, a spouse, a family member(s), neighbors, co-workers, and more. Maybe it’s taking a relaxing yoga class, enjoying a healthy meal together, learning and talking about good health practices or just supporting one another’s wellness. The possibilities are endless!
- Answer: G That’s right; all of the above! The Brain Energy Support Team (BEST) is here to provide you with the information, tools, tips and resources for you to live your BEST life possible. We warmly invite you to take a tour of our website to learn more!