ENDURANCE

What Recovery looks like.

Recapturing the ability to do a job and/or activity the first time after a stroke can’t be put into adequate words. The word exhilaration though would hint well at describing my sense of accomplishment.

Despite the desire to return to my pre stroke life I spent the Winter and Spring questioning if it was realistically possible.

I had no idea. Last week I did return to my radio show for the first time in nine months.

It felt good.

I feel triumphant!

I’ll not drag out and bore readers with the fundamental details needed both in motor skills and cognitive abilities to broadcast a live radio show, but suffice it to say that it’s a multitask balancing act, not to mention our accompanying interactive online chatroom to monitor.

I had ran a test show to suss out any software or DJ issues yet the night of my live show I was feeling a new self conscious about how my speech would broadcast. I’d need the feedback from the listeners who knew me before the stroke to know.

The stroke affected my right side, including the right side of my face. My muscle tone was damaged, including a slight droop of my mouth.

Rehabilitation therapy after a stroke begins with assessments by three different disciplines; physical therapy, occupational therapy, and speech therapy. (Speech therapy really should be renamed because it encompasses far more than speech.) This discipline assesses and treats cognitive function as well.

I keep saying it, I’m a fortunate stroke survivor, compared to the severity of brain damage I could have endured, I’m in great shape.

My goals were to walk unaided, to have normal use of my right hand and to talk without sounding intoxicated. I was given exercises for all three goals.

Most of the facial exercises were a hoot to witness I’m sure, but the benefits of simply smiling was the best and most natural exercise. The speech exercises were fun, the cognitive tests I loved. My speech therapist told me on our last visit she could no longer ethically treat me, I tested above average which meant no need for this discipline. I had an exercise routine and following it was up to me.

Happily because of the exercises my face muscles regained strength, the droop lifted, my speech although I can hear differences, I think is Understandable.

The real test though would be listeners.

THE SUPPORT…amazing support… and encouragement from those listeners in their feedback touched my heart with tears of gratitude a few times. Tears in a voice can mud up the clarity of a narrative but damn that grateful sense of success was worth the awkwardness of those moments.

Stroke recovery comes in Baby Steps of Firsts.

My first radio show post stroke ✔

@ttaylor2019

Truth be told to you who say I’m strong… Truth be told, there are unending days I am no Warrior. For instance, to not admit I struggle with Friday’s makes me a fraud.

Friday nights.

I could be all dressed up with somewhere to go, yet instead I’m at home in my jammies at 7pm.

Even though I have somewhere to go. I won’t.

Nine months ago I’d of been outta here, nine months ago I was. I was out at a live music show doing what I love, memorializing ‘the bands’ show.

But instead I am isolating and being reclusive.

I’ve not been able to really talk about this, but right now I seem able. That could all change tomorrow. Stroke recovery is like that, I find myself repeating “every day in stroke recovery is different.’

I’ve been an extroverted loner all my life. I’ve always been quite comfortable being alone, most often choosing solitude, yet I had a social side and liked being with people…well most people.

But now the extroverted side of me has apparently disappeared with the brain damage I suffered from the stroke that hit me last October. Being with people I love or even engaging with them on the phone I often find is simply too much. At least for today, and “For Today” is all I can manage.

Social media is the only place and time I feel somewhat comfortable being social, as it were. Knowing I can duck out at any give moment without being seen as rude or someone taking it personal gives me latitude to work with. I don’t feel like I have that option in person or even on the phone. Brain injury survivors tend to be hyper sensitive to stimuli. I am.

I find that I have been using isolation as a way to cope rather than to be overcome by the paralyzing social anxiety that has evolved post stroke, anxiety that will completely derail me, anxiety that is still so new to me.

I think the isolation has been a good coping tool but it’s a slippery slope.

I tried 4 different pharmaceuticals for anxiety only to experience side effects that were too much, Weeks into it I began to realize that I needed time to heal, not more drugs.

Surviving a stroke brings a host of new lessons for life, the learning curves can make a person feel like a first grader all over again. Initially the first six weeks post stroke I was doing wonderful. Part of the recovery assessment in the inpatient rehabilitation unit included a psychological assessment, both the psychologist and Speech Therapist told me I appeared to have a good handle on the traumatic (stroke) event. I was obnoxiously happy despite having had my life turned upside down.

Yet, coming home was another thing,

Despite being happy to be home, finally, there was still ambiguity. One of the things I find most intimidating is trying to resume some sense of a structured life again at the mercy of stroke survival.
Physical recovery is trying enough to structure at home and though the Rehab Unit had prepared me well by creating a exercise program to continue at home the mental and emotional recovery are a whole different thing. I found right away that I had become weepy, wordless, and my frustration and tolerance levels were scraping the barrel bottom. Add the Neuro Fatigue and everyday normal activities become enormous daily struggle.

The social butterfly side of me is now MIA.

It’s all been just too much.

I stopped taking phone calls. I stopped having visitors. I purposely allowed my world to shrink. Isolation is not always a good thing but it can have its benefits when used appropriately.

Causing people I care about to worry is NOT A GOOD THING. Nor is not nurturing relationships. This collateral damage crushes me with regret and guilt, yet it’s the way I’m coping with the anxiety that physically makes me ill and emotionally with paralyzing fear. I can’t seem to find a way to interact with people of significance in my life without becoming emotionally paralyzed and unable to breathe. Then my body starts to go numb.

This is anxiety. It’s debilitating.

Yet, i’s been allowing me to heal. Today I feel hopeful that I will get past this too. I feel progress. I have been to a couple of live music shows recently, and though I was wiped days after I am empowered to try again.

It’s be

(On a personal not; I’m beyond grateful for everyone who understands and knows that it’s not personal. Thank you )

©ttaylor2019

Bragging rights, unabashedly.

I did it! Took hours, fingers crawled back into a fist, but I didn’t quit!

My first post stroke sketch I’m pleased with.
I’ve never been an artist, never claimed to be good, but I enjoy it.
Despite that a lot is left to be desired in skill I’m determined to use the neurons needed to help heal my brain in as many ways I can.
Using my right hand to improve its function and the zen like application of sweeping lines and playing with color is a reassuring way to relax outside of my head.

Regardless of the phrasing….

Turn to

Run to

look to

enlist

reach out to

recruit

call in a favor

approach

invoke

or,  ‘scratch my back and I’ll scratch yours….’

I have always taken pride in dealing with things alone, it was my way of retaining control. I might fear losing a grip now on the situation if I ask for help. My thoughts and worries race, I fear losing control. I might even be reluctant to ask for fear of the potential awkwardness down the line if someone takes me under their wing, gives me solutions and advice, and then only for me to choose to do something different. How do you tell them without rejecting the time, effort and more they gave to you? It can feel embarrassing and imprisoning, so I am reluctant to ask. Maybe you have experienced things that mean you find it very hard to trust other people. Or you’ve felt let down by people you thought would help you.

©taylor-hyelser2019

Every day in stroke recovery is different. As is every night.

I had been a chronic insomniac for 30 plus years when I had my stroke 14 weeks ago. Maybe the sleep deprivation caught up with me despite that I truly believed I had learned to roll with it. It was a most cathartic and productive time at dark o’clock in the middle of the night, I did some of my best writing while the world around me slept. Interestingly after the stroke I began sleeping at night, but to be truly transparent I must add that I also am sleeping during the day and evening too. The Neuro Fatigue is a constant struggle that no amount of rest resolves. Now at 2am in the morning I have been stood up by the Sand Man. Again “Mr No Show Johnson” is some other place than I am.

So I write.

Staying Determined to put one foot in front of another even when you don’t feel you can lift your head is both challenging and empowering. That also can be different day by day, lately it’s more often than not. Despite being Determined to “Keep Keeping On” there are days that the effort, energy and motivation are epic fails.

There are days when getting out of bed and dressed are more than I can manage. Yet there are days I cannot begin my day fast enough. There seems to be no pattern to rely on, except when I have been especially busy and productive the day before I can count on not having an ounce of energy, sometimes not for a couple days after. Accomplishments of activities I once just did on autopilot now become enormous victories, these typically happen on days I feel energized and motivated. I celebrated the day I managed to use a manual can opener. On better days for my coordination and mobility I am able to draw and paint. Not good but I am Determined to do it anyway. Either kind of day may find me writing for an emotional outlet, being able to write again finally provides me with the most sense of things being normal. We need to connect with our “normal” sometimes.

As of yet I’ve not been released to return to work, my radio show, or even driving, early on my plan has been to use the time to continue the physical therapy every day, for joy to draw/paint even though I am right-handed and I have limited function still of my hand. Remember, every day is different (this is true for impairments from the stroke.) I also planned on using this time to sort and purge my cluttered home. I have an office/art room that is chock full of my business, art supplies, art tools, unfinished projects, music gear, music media….and junk! I have only used one corner of the room recently, and it was for a guest bed. Soooo…my agenda has been to make the room usable again for what I intended it for. I even asked a friend to move an old pedal sewing machine out of the room for me which I’d only been wanting to do for an entire year. Procrastination is certainly my middle name. Take one measure of Procrastination, mix in No-Motivation, then whip up weeks of Energy Deficiency and the perfect storm for Nothing Productive is created. I wasn’t making much headway in rebuilding a structure to my days post stroke. I’ve only managed to clean out and organize a few drawers. Yes, there is an analogy intended there.

I did actually start to make one routine happen while restructuring my life. I’d begun to routinely beat myself up on days that held no productivity to my name. I’d throw my hands up and declare “I’m freakin’ done!” This isn’t like me, well… the old me. Brain injuries change people. The old me was Determined. I needed to find her. Finding me and finding that determination and resolve was going to take some creativity on my part I soon recognized. I’d have to dig deep to find my way back to determination.

The very first thing I observed in my dig was that I was going to need to reassess what determination and living Determined means for me now. What was is not necessarily so today. Maybe it was time to accept that.

Determined acceptance.

Perhaps living Determined is about having the courage to accept just getting out of bed is enough. Especially on days when the fatigue is like being hit by a Mack truck.

Perhaps it is enough to be Determined to face the next hour when this one you can hardly breath, your body has gone numb and you fear you are having another stroke? Maybe being Determined is to accept that this is anxiety, not a stroke, and knowing it could happen again you face the next hour, and the next.

Being Determined means knowing when to push yourself, and it means knowing when to stop while you’re still ahead.

Being Determined I’ve discovered for me is knowing that just because something didn’t work today doesn’t mean it won’t tomorrow.

Being Determined is trusting that the struggles encountered today do not need to be my forever. My perception of living Determined means I must embrace the new me AND all that it means today post stroke.

I’d like to think that’s Determined Courage.

©taylor-helser2019

Prompt Rehabilitation after a stroke resulting in impairments is essential to recovery. In this entry I will discuss the importance of rehab, the difference between a hospital inpatient Rehab program versus a Skilled Nursing facility, the environment of my inpatient rehab, the providers and all the challenging hard work it takes to move forward.

I learned that whether or not as a stroke survivor you’ll be given the opportunity for inpatient rehab therapy in this country is like all medical logistics, hit and miss, unless you have a strong advocate working for you. Between respective insurance policy’s, state and federal guidelines and laws, individual hospital policy’s and the patients individual prognosis it’s not guaranteed that a patient will receive the best program for their recovery. Or even at all.

Rehabilitation as soon as possible is indicated for progress in recovery, the brain is creating new pathways around the injured part of the brain, neuroplasticity, and the sooner we through therapy begin to use those new pathways the better chance for recovery.

In my case I had a great prognosis for recovery, was in a first-rate hospital, had an amazing rehab physician (and social worker and physical therapist) who for a week pulled no punches with my insurance company to get me approved for the hospital’s inpatient rehab program. Why my insurance company dragged their heels for 6 days is anyone’s guess, there was of course a bit of absurdity in the beauracy on the business side of medicine, I really had no need to be on a medical support floor those 6 days, and my team was ready to move me to the rehab unit the day after my stroke. I was blessed to have a rehab doctor who was adamant that the hospital program would best serve me and he didn’t want me transferred to a skilled nursing faculty. ( I later learned that the quality of care and actual rehab in these facilities is sub standard and can actually impede recovery) My doctor so believed in my prognosis as well as my own determined motivation that he’d confided in me on the 7th day that he was moving me to the rehab unit regardless of my insurance company’s approval, with no financial liability to myself if needed. That’s how firs-rate my experiences across the stroke board were.

The Universe works in mysterious ways, that same day we received approval and I was moved to the rehab unit.

Let the games begin!

My accommodations were as lovely as they were on the medical floor, a private large room with a beautiful view of the early November Fall foliage outside the full wall length windows beside my bed. It was comfortable, especially with My Pillow from home.

As I keep saying the program is first-rate. It’s very structured with three hours a day of intense therapy, three different disciplines; an hour each of Physical, Occupational and Speech therapies with amazing therapists.

The unit has a real community feel and I especially liked the community dining room for meals as an option to eating alone in my room. Gathering three times a day to share meals with other rehab residents was medicine in itself. Having others who are being similarly challenged sharing thoughts and feelings is another form of necessary therapy. From the moment of my first breakfast with the other residents I was warmly welcomed and shown the ropes. I came away from 12 days in the program empowered and with a few new friends.

While fighting “Neuro Fatigue” there were a few days that I had to pep talk myself into attending therapy, napping was my first instinct; but I had a mindset that I had limited time there and my recovery depended on my participation, AND I was not about to throw away what had been so fiercely fought for me.

Therapy involved re-learning and retraining how to first navigate life safely despite my impairments and how to keep moving forward in recovery. Physical therapy for movement and coordination, Occupational therapy for taking care of myself, and speech therapy for cognitive abilities. I was very fortunate in that compared to how bad it could have been I have some mobility issues but I could still walk and could move my affected limbs

Cognitively I had no real issues,thankfully, in fact after the assessment my Speech therapist told me since I was testing above average it would not be ethical for her to keep meeting with me. I did initially have some speech irregularities because the stroke also affected the muscles in my right cheek, I had a slight droop on the right side of my mouth. With exercises and the advice to slow down and over enunciate my words I rapidly improved. Droop gone. A technique given to me that really helped was to think about how Barack Obama speaks, slow and methodical, he doesn’t worry about taking a brief pause in his speech. This has helped me begin to lose the annoying life-long habit of the fill in sound of “umm” when I lose my train of thought or searching for the right word.

See? Old Dogs can be taught new tricks.

I won the lottery in Rehab, the last week I was there I was offered to move to a studio apartment in the unit. It’s intended to help transition all I had learned for going home. The studio included a gallery kitchen, gorgeous natural light from two wall lengths of windows and a REAL BED!!

Finally November 12th arrived, it was my discharge date.

As happy as I was to be going home I have to admit I was also sad to be leaving the new friends I’d made in the residents and the staff. There was a sense of safety there I’d not have at home. I was even going to miss the food. Really. For a hospital albeit a Hilton of hospitals, the food was better than some 5 star restaurants I know. I had favorites and I was going to miss 3 meals a day being prepared for me.

The program prepared me well for going home and to resuming living alone.

I couldn’t wait.

©taylor-helser2019