What I Have Learned Two Years Post Stroke


Let me just say, a stroke is a great big momentous learning experience. One I would have gladly rather passed on, but God had different plans for me. Sometimes I wonder if I was too complacent in my sweet little life. But I am positive, beyond a shadow of a doubt, I needed to learn some thing(s).

Patience is not a virtue, but it’s a necessary trait.

Throughout all of my numerous daily tests of patience, I have learned that 1) it’s hard; and 2) it is necessary to show kindness to those who serve you. Patience is not only sitting by, waiting, but how you wait. Is your reaction in a complaining, ornery fashion, or with understanding, accepting, and, well, patience. (It the only word I could think of!) 

Patience is also about picking your battles. I am cursed with perfectionism. I consider it a curse since I haven’t been able to act on my straightening urges personally. (And I find I get this urge quite often!) Someone in my precarious situation requires much assistance with my everyday needs. What do I choose? My helpers, hired or relations, only have so much goodwill in them. So how can I ask them to straighten a curtain or fix a picture frame? So I patiently overlook petty imperfections.


Then there is the huge obstacle in having patience with ourselves. We are the hardest on ourselves. It’s just human nature. Having the only the use of one hand and arm and the inability to walk has tested my patience in countless instances. (Aaaaaih!) Think about how many thing we do that requires two hands? The use of a zipper, reading a book and turning pages, reaching far items, clasping a necklace, doing your hair and makeup, practically everything! Trying to be independent and endeavor to do simple things is a massive test of my already paper-thin patience. I try. I try, sometimes inexhaustibly. It can be maddening, but, man, it is fulfilling to ultimately achieve a task I put my mind to. Then there are times when I finally cut my loses, bite my lip, and ask for help. Attitude is the name of this game. If I lose it, I’ve lost the game. I can’t be hard on myself. It is what it is.

Our world is a beautiful place.

The view from my home is extraordinary. I live near the mountains. Whenever I visit the near unaltered version of what the world was at first, I marvel at the love my Heavenly Father has for me. He knows me. Our awesome landscape is just one of the many evidences of His love. My husband, son, and his girlfriend took an ATV ride up the mountains the other day. (We had to plan it on the first snow day of the year. It was seriously cold!) Ohhh! The fall foliage was awe inspiring. To some of us, looking with the right eyes, it was humbling.
Life has it’s ups and downs.
I seem so normal on this blog. I appear to have it all together, but I am sure a therapist would have a field day with me. (Some day’s, Satan has a firm grasp on my emotions.) One day, I am feeling positive and happy. Glad to be alive. Another day, negativity and frustration cloud my thoughts, and I wonder why I must experience all this. I understand it’s not just me who experiences this emotion. That’s exactly why we desperately need faith, something to hold onto. (Like a lifesaver. No, literally a lifesaver!) We need to utilize our faith (no matter in whom we place our faith) to weather even our toughest storms. (I sure wish my “rain” would stop.)

Family is everything.

I can’t even begin to think about where I would be without my family. I have to laugh when I recall part of that saying: “Someday you’ll be changing your parents.” My family has done things that are simply unimaginable. They would win that game “Have You Ever?” They serve me food first, help me dress and put on my shoes, get in my wheelchair, and on and on. My husband has sacrificed, well, everything for me. I can’t even imagine his stress level. He is by my side, always. I am so blessed for his unwavering loyalty. I might not express it enough, but my love and gratitude for them is unwavering and endless.

We must never cease showing gratitude.

Many countless people (or rather earth angels) who have prayed for me, rendered service, visited me, contributed (large and small,) and shared a kind word. I would fight anyone, to the death, who states there is no kindness left in the world. I possess indisputable proof. There is absolutely no way I can repay, directly or pay forward, all of the selfless charity in my behalf. I can only live with gratitude in my heart. I can’t take anything for granted when I almost had it taken away from me. It is so incredibly true that the attitude of gratitude is in the way one lives. It shows to others through the way we act daily. (You’ve either got it, or you don’t.)


God wants to see me and all of us happy. Our trials are given to us to teach us. If we don’t learn from our setbacks, we dropped the ball. It is difficult to behold those hidden blessing until we are far away from trial. They are there. Some call them tender mercies. I can not deny them. I will forever be changed. What I do with those changes is up to me.

Cover photo by Holly Glover, my neighbor, my friend.

Normal

What is normal to you? Day in, day out, running errands, shopping, commuting to work, kid’s activities, paying bills. I used to abhore normal. But now after almost 23 months in my altered state, (Yeah that’s right!) I crave the old normal. This summer has been a busy one, but not your normal summer busy. My day consists of Netflix, my iPad, grandson entertaining, a little sun, watching others have fun. Then I drink a little Dr. Pepper and eat a little somethin. My recliner is the most comfortable, until it’s not. Then get help and transfer to my motorized wheelchair for awhile, til my tailbone hurts. Get help to the bathroom. Then back to the recliner. (Rinse, and repeat.) Three days a week the normal rigmarole is interrupted with a trip for an hour of physical therapy. (Ooo, exercise. So exciting.) I would do more Amazon shopping if I had the money. Taking a life hiatus (via stroke) is not as fun as it sounds. I had to get away from this, even for a little while.

Me and my husband took a trip this last month up the pacific coast on i-1 from San Fran to the top of Oregon for our big 3-0. I planned and booked it all from my iPad. (As much as you can plan!) We imagined getting away would be fun. A road trip seems quite normal until my disabilities became all too apparent. We did behold many awesome sights. Numerous stops along the road required a quick hike down a hill to the beach. Nope. If you can access a beach, try riding on the sand in a wheelchair! Not possible, or quite hard. And most so-called handi-capable bathrooms, well we’ve seen bigger, lets just say that. Every time I wanted to disembark the vehicle to take in a vista, my husband had to retrieve the wheelchair, bring it around, then help me into it. Then take in the sights and do it all again. (Not just your normal hop out and run.) And try taking a picture one handed! Assessible rooms are difficult to find. (I think people get them just for the increased floor space!) Since I require extra supplies, the nightly hotel move-in (when we finally did secure one) was a ginormous task for my hubby. (Sure wish I could’ve helped.) Vacations are hard. Add an air-bed and all my extra stuff to the mix! Every morning he had to get me up, shower me, dress me, feed me, and replace all the stuff (and me) back into the van! (Thanks hun.) I did figure out how to do my own hair and make-up. (Men are useless that way.) More travelogue to come.

As we spent countless miles on the road (usually windy and slow,) I would look at other people with their first-world problems (like the need for gas or food,) seeing them so careless and free, and think, “Do they know how good they’ve got it?” I tried to use this get-a-way to “get away,” but the real facts of my life would always return to haunt me. 

Things can change very quickly. 

Enjoy your normal. Don’t take it for granted. Even though it seems so… normal. Appreciate it. Bask in it. (Summer joke.)

Why…


When we have something traumatic rock our the world as we knew it, we always ask “why?” God must have had a good reason to allow this happen to His beloved child. (Take it from an expert,) our Heavenly Father does inexplicably know us down to every molecule. He is not punishing us with our hardships. There is consistently a lesson to be learned, a blessing to find, a soul to be changed. It is exactly like the refinery’s fire. I feel I was given this trial to help me and others grow in compassion and appreciation. I reckon back to that song. “Each Life That Touches Ours For Good.” (Google it.) The thought that this happened to me to benefit other people (aside from what I’ve learned) helps me accept it more easily. I have witnessed the changes in my family already!

The other day I watched the movie “Stronger,” the story of the man who lost both of his legs in the Boston Marathon bombings. (Coincidently it was on the anniversary of the actual bombing, not planned, just happened!) I wanted to see it, because it was a movie about a guy in a wheelchair. I was personally interested. But I got much more from it than I expected!


The movie portrayed his daily struggles, and his yearning to accept it. (I can totally relate!) Many people attempted to make him the personified symbol for the “Boston Strong” mentality. He fought it. He did not want to be the bombing mascot. Until he met the man who helped him to the hospital right after the life-altering incident. This man expressed his desire to help since was unable help his soldier brother when he died on the battlefield. He also expressed the need to witness this man succeed, and his continued inspiration through his positive die-hard attitude. This encounter changed his mission in life, and he embraced the thought of being a motivation to others. (Kapow! Uh, was this movie trying to talk to me?) I need to “forget myself and get to work.”

When I was laying in the hospital right after the stroke, I remember waking many times briefly and thinking, “My family is growing closer. This is a growing experience for them.” What I wasn’t aware of was that I would affect many more. All those who so generously helped our family, people who knew me before and heard the news, new friends I have made along the way, and blog readers who share a chunk of my brain now and then. All those in the realm of my existence (within my six degrees of separation, by definition, everyone) have been effected by my experiences. Therefore, I must be a example of positivity and one who notices and gives appreciation for the blessings that might be difficult to see. 

I recently had my first speaking engagement for a church group. I was very anxious about it. I sat on the fence regarding the results. In my high school years, I was a debater and was pretty comfortable speaking publicly. But post-stroke, I don’t enjoy speaking in front of groups due to the thought of being stared upon and the speech impediment I deal with. My husband and a friend plotted at convincing me to speak. I insisted my husband sit next to me, and we planned that he would grab the baton (or microphone) if (when) I break down with emotion. After about thirty seconds, I did lose emotional control, and he took over. This actually worked out fine since he shared the part when I wasn’t really cognizant. Then I started feeling more comfortable, but I had to figuratively wrestle him to get the baton back. (He enjoyed speaking whether or not he would admit it!) I started talking so much, I found myself running out of breath and began feeling exhausted. (It. Can. Be. Difficult. To. Speak. Without. A. Break.) It ended up being exhilarating. I greeted a line of people after, they shared many compliments (which always makes me uncomfortable), they shared their similar experiences, and they had many questions. (I learned quickly what I should’ve talked about in front of the group!) Many attendees departed uplifted and motivated. (I just told my story. Who knew?)

I have learned that my new calling is to remind people of what is truly important. It is imperative I be a positive example. (No pressure and no highway option! Meaning, I can’t escape.) My hope is that I can do what the Lord has in mind for me!

Breathe

I would start with line from a song. (But I couldn’t choose from the 76 songs just entitled “Breathe!”) Holy Cow, breathing easily and without labor is not something I take for granted anymore! Those who are on oxygen can sympathize.

I experienced oxygen, a ventilator, and I possessed a ‘wonderful’ trachea after the stroke. (Wonderful is a sarcastic term, but it did successfully keep me alive so I can’t totally dis that God-forsaken contraption.) I know what it’s like to struggle for every breath. The ventilator assisted me at first. While I was on oxygen and the trach, I was tethered to that cumbersome tank. Lines, tubes, tanks, machines. Seriously, it was a three-ring circus. Luckily, I had a few Respiratory Therapists who were gung ho and tapered me off quickly. 

I had the trach (a hole in my neck with pipey-tube stuck in it) for four and a half months, and I prayed the incessant coughing would just stop. With a trach, I followed an approximately twenty minute cycle of clear and smooth breathing to increasingly mucused clogged, making the intake of oxygen difficult to impossible until I would either cough it out or, at the worst, I called them to manually clear it out. I would wait for help while fighting to draw in air. (Ughhh! Not a pleasant process! Not to mention the strap choking you to keep it on!)

When the clueless doctor told me near the first of December, (in 2016,) I would have it many more months. He triggered my stubborn obstinance. (I couldn’t speak with it, but the actual words on my lips were, “Baloney!”) From that day on, I self-started the ‘Trial,’ which meant I was required to wear it totally capped shut for three days with no clearing or any assistance. (Not an easy task!) If I could successfully do that, they would yank it out. You forget how to breathe by yourself when you have a piece of plastic helping for months. About a day into wearing a cap, completely closing the airway, frequently coughing it off, and shooting it across the room, the Therapist said, “Oh, you are serious about this!” She told me there was a trach cap that screwed on. (Thanks for that!) She officially started the ‘Trial.’ So really, I endured five days with the weekend. It was not a walk in park, but I was going to prove that doc wrong. Sometimes I came close to quitting and giving up, but I was h—-bent on getting it removed and returning to a facility near home before Christmas. When they did remove it they covered it with a bandage, and I would have to hold it or the bandage would raise up and down. I felt like a frog! 


I guess if breathing means that much – you’ll do anything.

Now, about a year and a half later, my breathing is quite normal, but a bit on the shallow side. Every so often I take a huge catch-up breath. It sounds like I’m sighing. (I am not exasperated or bored. I’m just taking a big breath. Sometimes it might be mid-sentence. That can be awkward.) I must be careful when I eat, and occasionally I cough for no reason. (I suspect it’s due to a trach scar inside my throat.)

Therefore, every breath I take is appreciated. It’s a blessing from my Heavenly Father. My friend calls the trach scar an ‘Angel Kiss.’ I think she’s right.


Don’t take your breaths for granted.

Beginning Again

At this time of year, my thoughts turn to the fresh new beginnings that come with Spring and Easter. Those age old bulbs in the ground are poking their heads out of a blanket of dirt, and revealing their inner colors as new baby sprouts. How they emerge and mature is up to them. The water and sunlight are available, they just have to stretch out and “Be all they can be.” (No pressure.)

I feel like that bulb. So much is at my disposal. God has given me so many abundant blessings, the air in my lungs and the nourishment to my body and the spirit in my soul. Even though on the outside my body might seem outwardly limited, I feel like I have a reset. (Like a good shake of the Etch-a-Sketch.) 

If there’s a will, there’s a way! 

My life seemed perfect before the stroke. I had a great job, new car, comfortable home, awesome kids, the definition of success. Right? But was I truly growing? God had different plans for me. I have grown in very different ways. I have learned very different lessons. I can start over, figuratively. I know I can do anything with enough faith and positivity.

We can all start over.

Whatever it is that is holding us back can be forgotten. Something that was done to us or something we’ve done – can all go away. Through Christ’s atonement, we have the opportunity to repent (or forgive) and start over like that buried little bulb. Whether it is a massive thing or seemingly small thing, this year can be the best. (The most bestest.)

This Spring, join me in a new beginning. It’s going to be wonderful!

Walk It Out

I haven’t given up yet. I know I look drunk, but, no I wasn’t plastered. (Although I’ve been tempted!) 

Here’s a video of me walking with assistance after about 18 months! I did the entire 150 foot track, without sitting, in about five and a half minutes! I am a little more brave to lean to the left against the walker. With the use of my right hip I can get the right (mostly paralyzed) leg to advance. Standing up feels great! (Since I sit a lot!)

We might laugh too much, but it’s serious business! (Shooting for five minutes!)


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Compassion

What do you think of when you hear the word “compassion?” (I used to think, oh, poor homeless people, or oh, that sad unfortunate person, I feel ya.) There’s fake compassion exhibited in word or verbosity to only make yourself look highfaluting and pretentious, or there’s true compassion portrayed in deed, when you genuinely serve in reaction to how you feel for the other or heartfelt empathy. The stroke (I had) has really taught me and my family true compassion. 

Our daughter has recently taken compassion to a new level. (If you know my daughters, I’ll bet you can guess which one!) She told me very matter-of-factly what happened in her class the other day.  She described how a handicapped kid in a wheelchair entered as a new student. The teacher proceeded with the awkward introductions to the class and asked who he could sit by. There were no offers. (Cricket sounds.) My daughter, one of the more popular girls, was sitting on the isle with an empty seat to her other side. Since she’s quite a caring thinker, she quickly moved over while offering the space and her friendship. She speedily became his friend while showing understanding and kindness. She told me, “I knew what he was going through, because of you and what we’ve been through. Before, I wouldn’t of thought to help him. I would’ve just continued on, not thinking about it.” (Proud momma moment.) She also told me he was a really good artist. (Which showed she was looking for the good.)

Our knowledge of where each location and amount of handicap parking places has become quite extensive. I have to laugh when my children (and husband) complain about use of the spots that are taken unnecessarily. But, I must remind them, some handicaps aren’t as outright noticeable as mine. (Whoa, get out of the way when they see a car parked in a handicap stall with no sticker! Oh, the anger!) 

When people go far out of their way to help me through a door or successfully navigate a small space, I appreciate them and their parents. (They were taught well.)

Now, I didn’t write this to brag, (well maybe, a little) but to show that even though I have endured a great hardship – positive things have resulted

Maybe, it was required in the big scheme of things that this happen to teach me and all who know my story – compassion, patience and faith. 

The ultimate way I have learned compassion is through the many earth angels who have shown their genuine feelings through their self-less acts of love. I have learned patience not only by my endless tests of (literal) long-suffering, but by the patience I have witnessed in others as they have helped me with daily tasks. And lastly, my faith has been strengthened by witnessing the faith and prayers by others on my behalf. (A huge thank-you to all that fit in those categories!)