Hello. My name is Mathew James Kerzman and I have a traumatic brain injury. I wasn’t going to lead with this but I do it as a kind of “heads up,” for I tend to get long winded, side tracked and whatnot. Forgive me if something seems out of place. I need to get it down while I remember it, and might not be able to get it where it belongs. I’ll get to the how of the traumatic brain injury later. I’m hoping that reading this can inspire you to never give up. And always wear a helmet if you’re skateboarding or anything similar.
THE BEGINNING
I was born in the small rural town of Hettinger, North Dakota, which is about fifty miles away from Mott, the town that I grew up in. There was no hospital in a town of eight hundred people. There were six kids in my family. We lived on a farm and raised some livestock. My birth mother died from leukemia when I was four years old. My father remarried to a woman he met at a widower's support group, and after that, there were ten kids on the farm. And I can’t forget to mention my uncle who stayed close in our basement. He was very good with the animals especially the sheep and always a riot. He was always really generous, giving away stuff he had in his room. I might have taken advantage of this! Technically, a person isn’t being “generous” when they are getting cigarettes taken from their vehicle!There was a garage behind our house growing up and my father kept farming machinery in there. I remember he always said, “Go get it from Father’s garage.” Behind our farm there used to be the church of St. Placidus but it burned down twice and is no longer there. All that remained from this church was the graveyard.
I went to a catholic grade school which closed soon after I went to high school. There were only eight kids in our class. My lifelong friend and I would hustle our art to the teachers; twenty five cents for a colored drawing and ten for black and white. I still talk, text and video chat with him pretty regularly. Somewhere there’s a picture of us together as toddlers. Our families were always very close. So close that they actually had a farm three miles away from ours. To this day we group video chat some prayers with multiple members of both our families and sometimes my cousin. I remember having to wear an eyepatch when I was young. I had a lazy eye, and the doctor thought a patch over my good eye might strengthen the weaker one. I constantly was pulling it off. To this day I still have a lazy eye. That optometrists idea might have worked if ornery wasn’t ingrained into me at such a young age. Maybe my name should have been Mathew James Ornery Kerzman!
In high school things got pretty crazy. I’ll start with the not so crazy. Speech class was something I always attended. Every once in a while we would get together for a speech meet. A close friend I would always do the same routine. A “Who’s on first?” scene by Abbott and Costello. I don’t think we ever got a ribbon or whatever, funny I don’t remember the name of these ribbons or whatever because I never got them! I enjoyed riding a skateboard with this same friend teasing him about pushing mongo. Here’s another friend I keep in contact with through video chat or texting. He was always really smart. I think his mind moved faster than his body. Always had a soda in one hand. He was so smart I was able to ask him for legal advice for court, which you’ll read about later. We all should take the time to acknowledge our friends.
I was a drummer in high school. Played in the pep band during basketball games. I had a sweet CMC drum kit. Cheap-o but I liked it. Never really got to use it for anything other than beating around every once in a while. Always regretted not using it for an actual band. I was in choir too but that was just a filler. I had a great music teacher. He was always winning all sorts of awards and every year he held something called “The Cafe Concert.” This was always a good time, mixing of skits with music. My siblings looked like stars singing their solos. This music instructor seemed to have a flair about him and wore ridiculously short shorts. Many things were said about him but the awards speak for themselves. He knew what he was doing and he was good at teaching music.
Around this time I started occasionally smoking marijuana. Probably stemming in a sort of ways from accidentally discovering huffing gasoline at a much younger age. I would take four-wheeler trips to the middle of nowhere and open the tank, lean down and then “space cadet.” I have no idea if doing this had any affect or led to marijuana or the other stuff I eventually did, but it definitely didn’t help me stay off them either. No one had any idea or even a hint of anything unusual, they just saw their brother, son or nephew riding a four-wheeler.
My biological brothers are all giants. All the boys well over six feet. My stepmother enjoyed her canner, filling up our “fruit room” with all sorts of delectable items. Even the canned sausage (as bad as that sounds) was delicious. She was a social worker and seemed to enjoy helping people. I wasn’t that big of a help on the farm but I wasn’t a complete slacker. Some of my brothers drove some of the farm machinery, but most of that was done by my uncle. With ten kids in my family we ended up having someone in almost every field; school, medical, computers, food, retail and more. Weddings in a family with ten kids happen quite often. One of my brothers has always been a complete and absolutely hilarious riot. One wedding in particular he sang “Sweet Caroline” by Neil Diamond and if you could have heard the way that he emphasized the “bah bump bump bah.” If I remember correctly he enjoyed singing this song at numerous events, even the Cafe Concerts.
I spent a lot of time in high school building or “playing” with car stereos and subwoofers. One of these friends gave me my first tattoo with a needle and some India ink. He butchered it. Was supposed to be just an “M” connected to a “J” connected to a “K.” Which would have ended up looking like the logo I put on all of my art to this day. It ended up looking like a “H.” Well I don’t know how to explain what it looked like, but this was my first interaction with something that would always be in my life. ALWAYS for they don’t wash off! I even got one while living in my current home. This caused a little inconvenience for the staff. The aftercare of a tattoo on a place you can’t reach by yourself is too much. I needed the c-n-a’s to put lotion on it every couple hours.
Soon after high school was when I really started getting into trouble with drugs, leading to four years in prison, two different trips. I was a “wake and bake” stoner. This lackadaisical lifestyle of waking up to a joint and going to bed after a bong led to a disgusting apartment. That was my excuse to justify doing some speed to get the energy to clean everything up. This sounded like a good plan at the time, but was more of an excuse. I did unfortunately fall victim to strong pain killers and the needle for a while, but I never “banged” my speed. I would only do that stuff in spurts to clean. To this day when I go to the doctor for blood work, I get embarrassed and sometimes say “You can’t use that arm, the vein is no good.” But a lot of these times in my life are really fuzzy. I guess that kind of goes with the territory of drug use. Anyways, I would leave the pipe for the speed in my apartment for the once every couple months I would need it. I happened to live by a school and that turned a misdemeanor into a felony. I don’t remember all the specifics. A wire was worn one time leading to a delivery charge. The other prison sentence came after my apartment got raided. Both times I lived by a school.
I did two different stays in prison. A total of four years. In prison I made the best of it. As we should all do, no matter what we are facing. It’s really not as bad as the movies make it. Especially my first go round. I went to a place they called the “farm” minimum security. We actually had dorms of fifteen. I worked in the kitchen, which I later found to be the control center for tobacco smuggling. Never had anything to do with it getting in there, and I didn’t care as long as they shared. In that kitchen I was the baker. As if I could, but inmates were always trying to hit me up for an extra piece of cake. The second prison sentence was a little more serious. Medium security, still we stayed in dorms. This time there were six inmates. I forgot to mention that both prison sentences I had to go to maximum security for orientation and then to the overflow dorms, same building, until a spot opened up in the place that you were supposed to spend your sentence. I never fell into any gangs and never got violated or anything like that. I’m lucky I didn’t live in a bigger state.
In life you should always try to find the positive. Prison had one, it was the place where I learned to hone the art of the tattoo. Making a machine out of a paper clip, sewing needle, toothbrush head, and a Discman motor. Using pencil shavings and shampoo to make the ink. I let my buddy do one on my stomach. I did my own on my arm and then I sold the machine. I honestly felt bad for selling a dirty machine. I have never used a dirty needle on anyone. Especially when I got back to the streets. There’s no way to hide a giant spider web that wasn’t on your forearm the day before so I ended up doing fifteen days in solitary confinement. They called this place the “hole,” and there wasn’t a single thing to do. No pencil, no paper, no entertainment of any kind and not even really that much sound. I found myself doing push-ups and pacing back and forth ten feet. I continued to do quite a bit of tattooing on the street. I never worked in any shop, I did them out of living rooms and kitchens for friends and family. Well maybe just one member of my family. A big dragon on the forearm of my younger brother the night before he was to be the groomsman in our brothers wedding. Needless to say I caught a bit of heck from my family for that one! “Oh the tux will cover it,” we thought.
BAD THINGS HAPPEN TO EVERYONE
My life is humorously a big case of bad timing. I was completely clean for four months prior to my accident. The night of my accident I was longboarding to my friends house. He was the friend who I got sober with. I cracked my head and was not wearing a helmet. Funny sidetrack, I used to call him my two-time life saver, because he got me sober and called the ambulance. But he got a little irritated with me and corrected me, saying “We got sober together.” I don’t remember any of this. One month prior and one year past my accident are both completely blank to me. I always have been kinda disappointed by that fact because I don’t remember one of four months of sobriety. I guess another positive I could find out of this is I’ve been sober since my accident.
There was some transition time from the time of my accident and when I first got to where I’m living now but I don’t remember most of it. I vaguely remember parts of the awesome place I was staying in Nebraska. But I don’t remember anything specific. After that the next place I went was a nursing home in my hometown because I was waiting for a bed to open up where I’m at now. I was there for about a year. The food, oohhh there was food galore. It’s a good thing I didn’t work out with therapies as much as I do now! I gained fifty some odd pounds. Although I did get one walking session there a week at a little more than an hour. I’ll get to what I’m doing now. They did stretching for me too, quite a bit. I’ll get to what I do now.
My father was the kindest man ever with a humongous heart. Lover of animals, cars, motorcycles, pinochle, the land and most of all the Lord. I couldn’t begin to sum up his life. He was involved in so many things from the Knights of Columbus to politics. He was in the House of Representatives for twenty years. Ironic to have an avidly Pro Life Democratic-National Pro Life. He tragically died while working on machinery two years after my accident and soon after I got to the wonderful place I’m living now. He really pushed for me to get here. I’ve always been more than proud to have his name as my middle name. He was really great with the grandkids. For some reason he always liked to sprawl out on the floor and this happened to be conveniently close to the kids.
MUSIC
Music has always been a big part of my life. My sister gave me my first guitar and this led to one of my many lifelong obsessions or loves. I was all self taught and never in a band. I have a video of my friend and I free styling on the internet. I think it’s a great way for anyone to express themselves. I played a little bit of guitar with the guy who saved my life. He was also self taught. Funny sidetrack, one of my current therapists recently told me that she didn’t care for music. We were doing my menu and I asked her what her favorite genre of music was and she replied that she doesn’t really listen to anything and if she has any downtime she does a book on tape. This simply had me flabbergasted. Music is so important to me and I don’t understand how anyone could go without it. About twenty times a day, someone says something or does something and a completely random song pops into my head. It’s disappointing because they are usually crap. I call them “triggers” and every time I get one I say “trigger.” And the people who know me have been warned by me, “After I say trigger plug your ears because I’m going to start singing.” No one enjoys my tone def singing.
As for my selection of music I like to listen to, it’s a big list. I have got to say it right off the bat, I really can’t stand country music. Some of the older stuff is okay but the twang and the voices, well I don’t know what it is, I just don’t care for it. I shouldn’t dis twang, that’s the wrong word. The word twang makes me think of Duane Eddy whom my father loved and this guy’s stuff is not country. Plus as a self taught guitarist I’ve got to give props to a man who made music where the only singing was his guitar. I listen to metal before therapies and anything strenuous to get pumped up. I like rap but am pretty particular. I don’t like the way some rappers use the “N” word, it just seems lazy. I’ve got lots of respect for the lyricists of this genre. I saved the best for last, well not the best, best to me and total garbage to others. Punk rock. N-O-F-X is my all time favorite band. I’ve only seen them live once. Many people get turned off by this band for they do have a song that’s titled “Drugs are good.” But at the same time they have a song about their drummer called “Bob,” which is about someone who was a hard alcoholic and sobered up. I don’t really care for ska which is closely related to punk. I’m going to say some genres of music that I like followed by a few examples. This probably a bad idea for the list is never ending. Punk-N-O-F-X, Guttermouth, Lagwagon, The Vandals, and M-x-P-X Metal-Slayer, Austrian Death Machine (hilarious band that poses as Arnold Schwarzenegger and does his movie quotes as songs,) System of a Down and the scum dogs of the universe GWAR. They actually call themselves that and wear costumes that portray them being from another planet. I think Psychostick would fall into this category. They are absolutely hilarious, with songs named “Beer” and “Obey the beard,” which name drops Chuck Norris for example. Rap-Insane Clown Posse (this band definitely gets a bad rep and they might deserve it, but I still think most of it’s hilarious,) Atmosphere, Eminem, BeastieBoys, Busta Rhymes, and of course the big Snoop Dogg. Techno-Daft Punk, Aphex Twin and The Prodigy. To this day I’m bugging app developers to make a non-looping music making app, for I desperately desire to make music again. In my opinion when you’re creating music it should be linear. I don’t understand how some of the stuff that they play on a loop at clubs or whatever can excite anyone. Even the techno I do like isn’t that repetitive, either way I can only handle it in small doses.
OBSESSIONS CAN BE GOOD AND BAD
I’m kind of addicted to using acronyms. Even my predictive text on my keyboard function of Tabby. (Tabby is the nickname I gave my tablet.) I type a P and POGS comes up. Which stands for Peace Out Girl Scout. If say this to someone who is around me often they reply with POBS, meaning Peace Out Boy Scout. Another one that pops up in my predictive text is TAS after I type a T, meaning Talk and Stretch. TAS is something that I do because I can’t text or type while using my strong hand for stretching. C-Dump isn’t an acronym but my personally coined phrase for covid, my predictive text even picks it up! Speaking of a nickname for my tablet, I have all sorts of them for my staff and fellow residents. For instance my next door neighbor I call “State Farm” and like to sing the commercial jingle. No need to say trigger there because I do it every other day.
Stretching is something that feels very good to me. It helps me with my therapies too. I’ve tried skipping my evening stretches before a therapy day and my walking went pretty bad. However, I’m way better than I used to be. Back in the day cnas would do nightly stretching on my legs, hands and even my neck. On the weekends they would even stretch me in the morning in addition to evenings. One day the DON (director of nursing) decided it was too much for them and discontinued it. I got really frightened, but right away one of my therapists came to the rescue. This is another reason I call him my maintenance man. He’s made all sorts of things I can use to self stretch. I used to stretch each leg for an hour! I would look at my clock, (I’m an avid clock watcher to this day, always making sure I can see it before the cna leaves my room) timing each alteration between bends and straight ups, for five minutes or fifteen depending upon the type of stretch. I would repeat this until one hour has passed and then it’s on to the other leg. But now I’m down to twenty minutes total or less for both legs. Do the math, from one hour per leg to ten minutes. Depending upon the length of my Netflix program or if the person who I’m in the act of TAS with has gotten sick of talking to me yet. I used to get so fixated over the time and watching the clock. But I was overdoing it, more obsessed with the timing than actually still feeling good. I decided there’s more important things I could be doing while the Sinemet is on board.
That brings me to my next topic. Medication, specifically Sinemet, that’s the one I can’t function without. You see I have Parkinson type symptoms but no Parkinson’s thus Parkinsonisms. When this medication isn’t in my system, which is nine pm to six am I can barely do anything. Seriously I can’t press one button to start my music on Tabby, and then when it’s on board I can write a book. I started a Neupro patch to help with the downtime of nine pm to six am. The patch helps me a little in the overnight hours. But when that Sinemet is on board I can type and text like a boss as compared to having difficulty with one button. I need to selfishly toot my own horn, for I’m the one who did all the research into this. Some of my staff would say I was med shopping or whatever but I was the one who was living it. At first the Sinemet was scheduled twice a day and things were awesome at certain times. I did lots of research and got the doses increased to three and eventually five times a day. I then learned it took time to kick in, so I got it changed to one hour before needing the extra kick in the pants.
Maybe that was one good thing I fixated on. Reminds me of my favorite therapist. He says fixation is one of my biggest issues. I try to turn it right around on him and say he fixates on his “old material” for we joke more than a lot. He likes to say the same jokes over and over. Examples: I’m taking Monday and Tuesday off, which would be false. Every time I open my mouth he twists my words. I’ll say his name and he’ll say “Who’s so and so?,” using his made up name. Twisting my words again, I would say I want to do a sustain in my therapy. His reply would be, “You want to finger paint?” He likes to make bets with me, or as he more accurately describes them “stipulations.” He even googled the definition of stipulation. We flip a coin most of the time. We also play single hands of rummy for these stipulations. He even quizzes me about songs on the radio, “If you don’t name this band right I’m taking Monday off.” But it’s all in good fun. Not a single time when I’ve lost one of these stipulations has he ever abided by it. Which I have to admit, I lose roughly seventy five percent. Which reminds me of his partner therapist who says it’s a trick coin. Over and over again I’ve coined him as my O.T.(occupational therapist,) P.C.T.( physical conditioning therapist,) P.T.A(physical therapist assistant ,) and I make up a few titles, speech therapist for he’s always twisting my words, maintenance man for he is constantly fixing things on my chair or making stuff and comedian in training for his jokes are stale. But overall I truly enjoy his company and appreciate everything he does.
I started writing poetry a while ago. Became obsessed or fixated with it like everything. I would ask everyone and anyone for random topics and then put their name before them. I would copy paste and forward them to all sorts of family and friends on Facebook messenger before entering them into a site for safekeeping. It all started because I would write short poems to an overnight nurse. Now I’ve done over two hundred and have five different books on Kindle. I also did the covers for these books. I proudly have all five poetry books, two hundred total, drawn art, digital art and other people’s art on this site. And now I’m blogging. Only positive blogs. Here’s an example of one;
Yup, it failed. Technology is awesome and I simply adore it. I couldn't live without my tabby (tablet). Technology is the backbone of this century, but every once in a while it fails. Maybe your cell isn't getting reception, your computer crashed, or even something stupid like a computer chip in your car keys. Keep calm. We should embrace it, even if it sometimes doesn't work right. Imagine being a pioneer back in the day, playing with the ball they would make from a bladder balloon, or their dolls made from corn cobs and rags. I couldn't begin to fathom life without technology. How many times a day do each of us look at some sort of screen. I'm just saying don't get flustered over it when it fails. We've got it five thousand times better than the pioneers or settlers.
A while back I got sick of going through the middle man on everything. So I started to pursue my own guardianship. I mention the middle man because they were at every care plan, doctor visit and would sometimes just pop in to say hi. They didn’t necessarily just “pop in,” they had multiple people living here under their guardianship, and they would have to meet a quota. Having an extra opinion didn’t really hinder anything, it was just kind of annoying. To me it felt like people thought I was incapable to make basic decisions. The things that they signed for I would usually be down with anyways. My biggest thing was that I wanted to ride transit by myself. I went to court numerous times. At first I obtained Limited Guardianship. But that wasn’t enough for I simply wanted to handle everything I could. I eventually got my own guardianship and my family was nervous about it at first thinking I would lose my housing and whatnot. My father was my guardian until he died. My social worker was a big help through all of it. It’s not like she was gung ho for it, nor did she say she was against it she was just doing her job. After the fact we had quite a bit of paperwork to do. We used to have to stamp things with a stamper, but since I self advocated into my Sinemet dosing increases and Neupro patch, I signed all that paperwork with my ex-dominant hand. I told her she can throw that stamper away any day. Self advocacy is a good example for someone who can take care of themselves.
A while ago I got the notion that stem cells might solve everything. I did some research and found a place that would do a procedure for seventeen thousand dollars. I really had faith in this. I started a gofundme account and raised around seven thousand. My dear stepmother, bless her soul, paid for the rest, including airfare etc. The stem cells I heard so many great things about, like people that went from wheelchair bound to walking around with just a walker. These were people who received direct brain injection stem cells. These types of stem cells are only offered in placebos, and with my great track record; try a placebo? No thank you! Florida offered intranasal. Because I have a traumatic brain injury, the blood brain barrier would prevent any medication or stem cells from being effective through nasal passages. My two gigantic brothers and my sister, our family’s token nurse, flew with me all the way to Florida. Sister was a nurse so I could get my medical necessities and the big boys to get my big butt into the plane. I didn’t receive the success I was thinking but still have seen some great gains. Not to forget to mention a great time with three of my siblings.
Communication is very important to me. Even though I joke about talking like a donkey. Which my predictive text picks up. I mention this because I’ve made all sorts of messenger groups. I kind of got the idea from my brother who made a family page. One of the groups is for pinochle. A game that I adore. Funny sidetrack. Pinochle is big in my family. Sometimes two separate games going on at once. It’s also huge in prison. Perplexing how a bunch of convicts can enjoy the same thing as some farm raised Catholics. I don’t know if you know anything about pinochle but there’s two versions; single deck and double deck. My family played single deck which contained the 9’s. But in prison you couldn’t even find the 9’s. They were thrown away as soon as the package was opened. After I got out of prison I remember saying, “9’s are overrated!” I eventually caved after my accident. I have a pinochle app that for the longest time was set up to play double deck. Now it’s finally single deck and so is the website I play it on. Back to messenger groups. I made one for my graduating classmates called The last cardinals for the year after we graduated they combined with another small town and changed mascots. Cardinals to Wildfire. One of the groups is called prayers which contains people I talk and stretch with. I even made two separate prayer groups for the people in it would complain about there phone ringing while they were working. Now I have prayers group and weekday prayers group.
MY NEW HOME
The place I’m living in now is the best place in the state for rehabilitation of a traumatic brain injury. I get physical therapy (P.T.) five days a week, Monday through Friday. During covid, people had to eat six feet apart from each other. This caused residents to have to eat throughout the whole building. This is a twenty bed facility. Some people had to be supervised. The ones who need no supervision get to eat in their rooms. Since some need supervision, therapy rooms and the activities room were being utilized as dining rooms. Since extra staff are needed for supervision therapists and even the maintenance man were coming in on the weekends. But there’s always a way to find a small positive in every situation. Beings that the therapists happened to be here on a weekend I got to occasionally sneak in some weekend P.T.
Physical therapy (P.T.) is a vital key to rehabilitation. Even if you know you will probably never make a full recovery, the gains you have made will show. The PT program where I’m at right now is the bomb diggity. I walk on average twice a week, sometimes three. There’s even been a week when I walked all five days. The other days I thoroughly enjoy riding the Nu-Step, getting on the mat or standing at the parallel bars. The Nu-Step could be described as a sit down bike. I get to use both arms and legs. When I first started doing this they would attach my weaker hand onto the handle using a glove type thing that my PT calls “the mitt,” but now I quite often choose to go without. I obsess over the display that tells me the steps I’ve taken, steps per minute and the time I have been on it. Another thing I like about the Nu-Step is I get to do it for both P.C.T. and P.T., staying on it for a full hour versus the thirty minutes for each if I would split them up. It also gives me ample opportunity to bug my therapists with the flapping of my jaw. When I go on the mat, my PT and I usually joke around saying “Mat on the mat.” We do scooting side to side. I sometimes get a horrible Trigger to a popular country song (Boot scootin boogie) when I give my P.T. the heads up to what I’m doing next. We work on my trunk strength doing sit ups, some I do fast and some slow and controlled. When I first started getting on the mat I would try to do my sit ups as fast as possible, obsessing with numbers of reps like I do with clocks and the display on the Nu-Step, but now I try to find the happy medium of both. I joke about the parallel bars. When I get to the P.T. room I say, “I want to go drinking!” Because it’s standing at a bar. I do knee bends as far as I can go down. Work on picking up each leg individually. When I first started doing this I would have to sit down three times in the allotted thirty minutes and now I can stand the full thirty minutes.
The feeling of walking around by someone who is living in a wheelchair is incredible. I walk on average twice a week. When I first got to this place I would walk about fifty feet with assistance from two therapists. One to hold the walker and one to advance my weaker leg with a gait belt. When I walk they put a boot on my stronger leg to aid with advancing my weaker one. Now I walk with the L. Leg Launcher, which is a piece of theraband tied from my foot up to the walker. This device was the brainchild of my PT and it helps to advance my weaker leg. Also very key to walking is my A.F.O., which stands for ankle foot orthosis. Essentially a plastic brace that prevents my ankle from buckling. The first thing the C.N.A.’s say to me in the morning on therapy days is, “Are you walking?” When I’m self propelling to breakfast if I see my physical therapist on a walking day I simply smile and tap on my brace and he knows.
REFUSE TO SINK
My physical limitations since my accident are pretty serious, but I try to look past it. It took a while but I’ve finally come to terms with the fact that I’m always going to be disabled. I can wiggle my right thumb a little. Extending my fingers is harder than contracting them. Both are virtually impossible but I’m going to refer to any little details. Left arm works okay but still not one hundred percent. I used to stretch out on the table in the O.T.(occupational therapy) room by setting weights on it to flatten my fingers. I even do this at other times of the day. During Covid, my time in OT was limited, so I stuck to the active versus passive (stretching). My neck is constantly stiff. Stretching it myself is something that’s hard to do. I incorporate a little bit of neck stretching into my primarily active PT sessions. I’m in a wheelchair and probably will be the rest of my life.
One of my biggest physical limitations or ailments from my injury would be my speech. Here’s an opportunity to mention my predictive text. “Like a donkey” seems to pop up after I type the word “like.” This happens when I text friends before a “Tas” session and give them a warning. Typing “I talk” and like a donkey pops up. It’s very frustrating when you can’t get a simple point or message across. You could be relatively intelligent but since people can’t understand you, they get the notion you’re unintelligent. Some words are more difficult to say than others. It’s been very diminishing to my vocabulary. Granted, I’m not the sharpest knife, but I’m not a blunt rock either. I get tired of repeating myself, but I really have no choice. Some people I video chat with don’t understand my choice of “Tas” and say “Just text me.” I sometimes talk to myself to try and listen and see what sounds best. I specifically remember doing this before court. “Slow down and enunciate” is one of the main things my speech therapist says, also one sy-lla-ble at a time. Funny sidetrack, when I’m walking with my therapist I sometimes try to say things and we joke around, “less talking more walking!”
I enjoy creating positivity in other people’s lives, through my art and books and simply being verbally positive to other people. Sometimes I can get upset over something and I can kind of lash out. But hey, I’m a human being and I have a traumatic brain injury, so please cut me some slack! The right side of my body is worse than the left. Which has always been really aggravating for I was a right handed artist and now I’m forced to use my left. I used to be so adamantly against doing anything with my left hand. I eventually caved and it’s a darn good thing. I’ve done countless pieces of art for people. It’s usually for their kids but not always. I’ve done artwork for other residents. And I can’t forget about the digital artwork that I’ve done. After all, I was in college for graphic design at the time of my accident. Just like the poetry most of these were done because someone gave me a topic. All of them ended up on my website. Each piece of regular art has my MJK logo on it. Except now they don’t look like an “H,” like my gangster buddy did.
My preferred mode of transportation, well pretty much only, is self propelling. Yet another brainchild of one of my favorite therapists. When I came to this place my wheelchair was unable to provide me with this capability. But he adapted it and even put some cushy padding over the metal after the left pedal (stronger side) was removed. My chair is pretty fancy, even reclines for comfort. When I’m tipped up all the way I can get around pretty good. When I first started doing it I got addicted to seeing how many times I could do laps around the building. You see I would start like twenty minutes before meals and see how many laps I could do. I don’t remember all the specifics but from what my PT tells me about the distances we walk, which would be the same area. It was about half of a mile.
Care plan is the rules and regulations to each individual resident. Such as their transfers, supervised or unsupervised eating, puréed diet or whole foods and so on. Every few months we even have what we call “Care Plans.” Where your family, guardians and the head of each department gather around to talk about your progress or regress. My diet was a puréed diet when I first got here. Then it went to a mechanical soft diet and now I’m totally unrestricted. But to this “unrestriction” there is one stipulation. I have to cut everything to bite size and if I disobey once, it’s back to mechanical soft. This man writing this happens to love his food, so needless to say I haven’t disobeyed once!
Like I said my chair reclines or tips. I’m pretty sure this wasn’t my first chair but I’ve had it for quite some time. There used to be a restriction on how far back I could go. There’s a little meter. I think this first came about for issues with my catheter. Again I give an example of self advocacy, for I pursued a few different doctors for this. But this tipping restriction was a daily comfort thing. And their reasoning behind it was with little backup. So I pursued doctors and got it nullified. The score is daily comfort- 1. Uninformed care plan restriction-0. I’ve had some other disagreements with my care plan too. These care plans, even if I’ve disagreed with some of the decisions, are in our (the residents) best interest. They are to facilitate standardized and evidence based holistic care. Which makes me think of one of my poems that I did….
Nurses have our respect
Caring for the wrecked
Taking care of more than medication
Usually from a health station
Working from hospitals, clinics a nursing home
There’s even travelers who do it as they roam
Everyone should appreciate
The ones that do their job great
Some are extremely rude
Not helping your mood
Still that’s very rare
Most genuinely care
I spend a lot of time in therapy, well at least I did before all this covid crap. I still spend as much time there as I’m allowed. Now I can only be in the therapy room for the thirty minute session that I’m allotted. However my PCT let’s me do both back to back so I can just get them both done at once. It probably benefits him this way too. He works in the OT room and does his PCT out of both the PT room and Occupational therapy room. Before covid I always had PCT in the afternoon. But since covid they use the OT room for eating. Like I said some people need to be supervised. Before C-Dump I would spend every extra minute I had free in OT, either drawing or playing cards. Playing cards with a stipulation that’s never enforced! Actually, speaking of afternoon PCT. I should mention that I used to go back to bed for a couple hours in the afternoon every day. Now they set up a card table in my room so I can do art and stuff. Ironically I bought this card table from amazon two weeks before covid. God bless amazon and god bless my stepmother for the amazon allowance she gives me. So even if I actually wanted to go to bed I couldn’t because there is kinda a card table in the way. I replay jokes just as much as some of my therapists. At lunch I sometimes say to the cnas with different excuses every time….”My back is really killing me I want to go to bed.” They never buy it because I start smiling before I finish saying it.
CONCLUSION
And that pretty much sums up my life. Of course, there are all sorts of things that I forgot to mention, probably on purpose! But the safety warnings are all throughout. Such as don’t use dirty needles, try not to do drugs, but if you do, don't use needles. Always stay positive. Make the best of every situation. It’s a very real fact that we are all inevitably dying, but we should let our daily interactions with others help them with any struggles that they are facing. Trust and love your family. Listen to your therapists, and I never said this directly but I’m saying it now, I beg you to ALWAYS WEAR A HELMET.
THE BEGINNING
I was born in the small rural town of Hettinger, North Dakota, which is about fifty miles away from Mott, the town that I grew up in. There was no hospital in a town of eight hundred people. There were six kids in my family. We lived on a farm and raised some livestock. My birth mother died from leukemia when I was four years old. My father remarried to a woman he met at a widower's support group, and after that, there were ten kids on the farm. And I can’t forget to mention my uncle who stayed close in our basement. He was very good with the animals especially the sheep and always a riot. He was always really generous, giving away stuff he had in his room. I might have taken advantage of this! Technically, a person isn’t being “generous” when they are getting cigarettes taken from their vehicle!There was a garage behind our house growing up and my father kept farming machinery in there. I remember he always said, “Go get it from Father’s garage.” Behind our farm there used to be the church of St. Placidus but it burned down twice and is no longer there. All that remained from this church was the graveyard.
I went to a catholic grade school which closed soon after I went to high school. There were only eight kids in our class. My lifelong friend and I would hustle our art to the teachers; twenty five cents for a colored drawing and ten for black and white. I still talk, text and video chat with him pretty regularly. Somewhere there’s a picture of us together as toddlers. Our families were always very close. So close that they actually had a farm three miles away from ours. To this day we group video chat some prayers with multiple members of both our families and sometimes my cousin. I remember having to wear an eyepatch when I was young. I had a lazy eye, and the doctor thought a patch over my good eye might strengthen the weaker one. I constantly was pulling it off. To this day I still have a lazy eye. That optometrists idea might have worked if ornery wasn’t ingrained into me at such a young age. Maybe my name should have been Mathew James Ornery Kerzman!
In high school things got pretty crazy. I’ll start with the not so crazy. Speech class was something I always attended. Every once in a while we would get together for a speech meet. A close friend I would always do the same routine. A “Who’s on first?” scene by Abbott and Costello. I don’t think we ever got a ribbon or whatever, funny I don’t remember the name of these ribbons or whatever because I never got them! I enjoyed riding a skateboard with this same friend teasing him about pushing mongo. Here’s another friend I keep in contact with through video chat or texting. He was always really smart. I think his mind moved faster than his body. Always had a soda in one hand. He was so smart I was able to ask him for legal advice for court, which you’ll read about later. We all should take the time to acknowledge our friends.
I was a drummer in high school. Played in the pep band during basketball games. I had a sweet CMC drum kit. Cheap-o but I liked it. Never really got to use it for anything other than beating around every once in a while. Always regretted not using it for an actual band. I was in choir too but that was just a filler. I had a great music teacher. He was always winning all sorts of awards and every year he held something called “The Cafe Concert.” This was always a good time, mixing of skits with music. My siblings looked like stars singing their solos. This music instructor seemed to have a flair about him and wore ridiculously short shorts. Many things were said about him but the awards speak for themselves. He knew what he was doing and he was good at teaching music.
Around this time I started occasionally smoking marijuana. Probably stemming in a sort of ways from accidentally discovering huffing gasoline at a much younger age. I would take four-wheeler trips to the middle of nowhere and open the tank, lean down and then “space cadet.” I have no idea if doing this had any affect or led to marijuana or the other stuff I eventually did, but it definitely didn’t help me stay off them either. No one had any idea or even a hint of anything unusual, they just saw their brother, son or nephew riding a four-wheeler.
My biological brothers are all giants. All the boys well over six feet. My stepmother enjoyed her canner, filling up our “fruit room” with all sorts of delectable items. Even the canned sausage (as bad as that sounds) was delicious. She was a social worker and seemed to enjoy helping people. I wasn’t that big of a help on the farm but I wasn’t a complete slacker. Some of my brothers drove some of the farm machinery, but most of that was done by my uncle. With ten kids in my family we ended up having someone in almost every field; school, medical, computers, food, retail and more. Weddings in a family with ten kids happen quite often. One of my brothers has always been a complete and absolutely hilarious riot. One wedding in particular he sang “Sweet Caroline” by Neil Diamond and if you could have heard the way that he emphasized the “bah bump bump bah.” If I remember correctly he enjoyed singing this song at numerous events, even the Cafe Concerts.
I spent a lot of time in high school building or “playing” with car stereos and subwoofers. One of these friends gave me my first tattoo with a needle and some India ink. He butchered it. Was supposed to be just an “M” connected to a “J” connected to a “K.” Which would have ended up looking like the logo I put on all of my art to this day. It ended up looking like a “H.” Well I don’t know how to explain what it looked like, but this was my first interaction with something that would always be in my life. ALWAYS for they don’t wash off! I even got one while living in my current home. This caused a little inconvenience for the staff. The aftercare of a tattoo on a place you can’t reach by yourself is too much. I needed the c-n-a’s to put lotion on it every couple hours.
Soon after high school was when I really started getting into trouble with drugs, leading to four years in prison, two different trips. I was a “wake and bake” stoner. This lackadaisical lifestyle of waking up to a joint and going to bed after a bong led to a disgusting apartment. That was my excuse to justify doing some speed to get the energy to clean everything up. This sounded like a good plan at the time, but was more of an excuse. I did unfortunately fall victim to strong pain killers and the needle for a while, but I never “banged” my speed. I would only do that stuff in spurts to clean. To this day when I go to the doctor for blood work, I get embarrassed and sometimes say “You can’t use that arm, the vein is no good.” But a lot of these times in my life are really fuzzy. I guess that kind of goes with the territory of drug use. Anyways, I would leave the pipe for the speed in my apartment for the once every couple months I would need it. I happened to live by a school and that turned a misdemeanor into a felony. I don’t remember all the specifics. A wire was worn one time leading to a delivery charge. The other prison sentence came after my apartment got raided. Both times I lived by a school.
I did two different stays in prison. A total of four years. In prison I made the best of it. As we should all do, no matter what we are facing. It’s really not as bad as the movies make it. Especially my first go round. I went to a place they called the “farm” minimum security. We actually had dorms of fifteen. I worked in the kitchen, which I later found to be the control center for tobacco smuggling. Never had anything to do with it getting in there, and I didn’t care as long as they shared. In that kitchen I was the baker. As if I could, but inmates were always trying to hit me up for an extra piece of cake. The second prison sentence was a little more serious. Medium security, still we stayed in dorms. This time there were six inmates. I forgot to mention that both prison sentences I had to go to maximum security for orientation and then to the overflow dorms, same building, until a spot opened up in the place that you were supposed to spend your sentence. I never fell into any gangs and never got violated or anything like that. I’m lucky I didn’t live in a bigger state.
In life you should always try to find the positive. Prison had one, it was the place where I learned to hone the art of the tattoo. Making a machine out of a paper clip, sewing needle, toothbrush head, and a Discman motor. Using pencil shavings and shampoo to make the ink. I let my buddy do one on my stomach. I did my own on my arm and then I sold the machine. I honestly felt bad for selling a dirty machine. I have never used a dirty needle on anyone. Especially when I got back to the streets. There’s no way to hide a giant spider web that wasn’t on your forearm the day before so I ended up doing fifteen days in solitary confinement. They called this place the “hole,” and there wasn’t a single thing to do. No pencil, no paper, no entertainment of any kind and not even really that much sound. I found myself doing push-ups and pacing back and forth ten feet. I continued to do quite a bit of tattooing on the street. I never worked in any shop, I did them out of living rooms and kitchens for friends and family. Well maybe just one member of my family. A big dragon on the forearm of my younger brother the night before he was to be the groomsman in our brothers wedding. Needless to say I caught a bit of heck from my family for that one! “Oh the tux will cover it,” we thought.
BAD THINGS HAPPEN TO EVERYONE
My life is humorously a big case of bad timing. I was completely clean for four months prior to my accident. The night of my accident I was longboarding to my friends house. He was the friend who I got sober with. I cracked my head and was not wearing a helmet. Funny sidetrack, I used to call him my two-time life saver, because he got me sober and called the ambulance. But he got a little irritated with me and corrected me, saying “We got sober together.” I don’t remember any of this. One month prior and one year past my accident are both completely blank to me. I always have been kinda disappointed by that fact because I don’t remember one of four months of sobriety. I guess another positive I could find out of this is I’ve been sober since my accident.
There was some transition time from the time of my accident and when I first got to where I’m living now but I don’t remember most of it. I vaguely remember parts of the awesome place I was staying in Nebraska. But I don’t remember anything specific. After that the next place I went was a nursing home in my hometown because I was waiting for a bed to open up where I’m at now. I was there for about a year. The food, oohhh there was food galore. It’s a good thing I didn’t work out with therapies as much as I do now! I gained fifty some odd pounds. Although I did get one walking session there a week at a little more than an hour. I’ll get to what I’m doing now. They did stretching for me too, quite a bit. I’ll get to what I do now.
My father was the kindest man ever with a humongous heart. Lover of animals, cars, motorcycles, pinochle, the land and most of all the Lord. I couldn’t begin to sum up his life. He was involved in so many things from the Knights of Columbus to politics. He was in the House of Representatives for twenty years. Ironic to have an avidly Pro Life Democratic-National Pro Life. He tragically died while working on machinery two years after my accident and soon after I got to the wonderful place I’m living now. He really pushed for me to get here. I’ve always been more than proud to have his name as my middle name. He was really great with the grandkids. For some reason he always liked to sprawl out on the floor and this happened to be conveniently close to the kids.
MUSIC
Music has always been a big part of my life. My sister gave me my first guitar and this led to one of my many lifelong obsessions or loves. I was all self taught and never in a band. I have a video of my friend and I free styling on the internet. I think it’s a great way for anyone to express themselves. I played a little bit of guitar with the guy who saved my life. He was also self taught. Funny sidetrack, one of my current therapists recently told me that she didn’t care for music. We were doing my menu and I asked her what her favorite genre of music was and she replied that she doesn’t really listen to anything and if she has any downtime she does a book on tape. This simply had me flabbergasted. Music is so important to me and I don’t understand how anyone could go without it. About twenty times a day, someone says something or does something and a completely random song pops into my head. It’s disappointing because they are usually crap. I call them “triggers” and every time I get one I say “trigger.” And the people who know me have been warned by me, “After I say trigger plug your ears because I’m going to start singing.” No one enjoys my tone def singing.
As for my selection of music I like to listen to, it’s a big list. I have got to say it right off the bat, I really can’t stand country music. Some of the older stuff is okay but the twang and the voices, well I don’t know what it is, I just don’t care for it. I shouldn’t dis twang, that’s the wrong word. The word twang makes me think of Duane Eddy whom my father loved and this guy’s stuff is not country. Plus as a self taught guitarist I’ve got to give props to a man who made music where the only singing was his guitar. I listen to metal before therapies and anything strenuous to get pumped up. I like rap but am pretty particular. I don’t like the way some rappers use the “N” word, it just seems lazy. I’ve got lots of respect for the lyricists of this genre. I saved the best for last, well not the best, best to me and total garbage to others. Punk rock. N-O-F-X is my all time favorite band. I’ve only seen them live once. Many people get turned off by this band for they do have a song that’s titled “Drugs are good.” But at the same time they have a song about their drummer called “Bob,” which is about someone who was a hard alcoholic and sobered up. I don’t really care for ska which is closely related to punk. I’m going to say some genres of music that I like followed by a few examples. This probably a bad idea for the list is never ending. Punk-N-O-F-X, Guttermouth, Lagwagon, The Vandals, and M-x-P-X Metal-Slayer, Austrian Death Machine (hilarious band that poses as Arnold Schwarzenegger and does his movie quotes as songs,) System of a Down and the scum dogs of the universe GWAR. They actually call themselves that and wear costumes that portray them being from another planet. I think Psychostick would fall into this category. They are absolutely hilarious, with songs named “Beer” and “Obey the beard,” which name drops Chuck Norris for example. Rap-Insane Clown Posse (this band definitely gets a bad rep and they might deserve it, but I still think most of it’s hilarious,) Atmosphere, Eminem, BeastieBoys, Busta Rhymes, and of course the big Snoop Dogg. Techno-Daft Punk, Aphex Twin and The Prodigy. To this day I’m bugging app developers to make a non-looping music making app, for I desperately desire to make music again. In my opinion when you’re creating music it should be linear. I don’t understand how some of the stuff that they play on a loop at clubs or whatever can excite anyone. Even the techno I do like isn’t that repetitive, either way I can only handle it in small doses.
OBSESSIONS CAN BE GOOD AND BAD
I’m kind of addicted to using acronyms. Even my predictive text on my keyboard function of Tabby. (Tabby is the nickname I gave my tablet.) I type a P and POGS comes up. Which stands for Peace Out Girl Scout. If say this to someone who is around me often they reply with POBS, meaning Peace Out Boy Scout. Another one that pops up in my predictive text is TAS after I type a T, meaning Talk and Stretch. TAS is something that I do because I can’t text or type while using my strong hand for stretching. C-Dump isn’t an acronym but my personally coined phrase for covid, my predictive text even picks it up! Speaking of a nickname for my tablet, I have all sorts of them for my staff and fellow residents. For instance my next door neighbor I call “State Farm” and like to sing the commercial jingle. No need to say trigger there because I do it every other day.
Stretching is something that feels very good to me. It helps me with my therapies too. I’ve tried skipping my evening stretches before a therapy day and my walking went pretty bad. However, I’m way better than I used to be. Back in the day cnas would do nightly stretching on my legs, hands and even my neck. On the weekends they would even stretch me in the morning in addition to evenings. One day the DON (director of nursing) decided it was too much for them and discontinued it. I got really frightened, but right away one of my therapists came to the rescue. This is another reason I call him my maintenance man. He’s made all sorts of things I can use to self stretch. I used to stretch each leg for an hour! I would look at my clock, (I’m an avid clock watcher to this day, always making sure I can see it before the cna leaves my room) timing each alteration between bends and straight ups, for five minutes or fifteen depending upon the type of stretch. I would repeat this until one hour has passed and then it’s on to the other leg. But now I’m down to twenty minutes total or less for both legs. Do the math, from one hour per leg to ten minutes. Depending upon the length of my Netflix program or if the person who I’m in the act of TAS with has gotten sick of talking to me yet. I used to get so fixated over the time and watching the clock. But I was overdoing it, more obsessed with the timing than actually still feeling good. I decided there’s more important things I could be doing while the Sinemet is on board.
That brings me to my next topic. Medication, specifically Sinemet, that’s the one I can’t function without. You see I have Parkinson type symptoms but no Parkinson’s thus Parkinsonisms. When this medication isn’t in my system, which is nine pm to six am I can barely do anything. Seriously I can’t press one button to start my music on Tabby, and then when it’s on board I can write a book. I started a Neupro patch to help with the downtime of nine pm to six am. The patch helps me a little in the overnight hours. But when that Sinemet is on board I can type and text like a boss as compared to having difficulty with one button. I need to selfishly toot my own horn, for I’m the one who did all the research into this. Some of my staff would say I was med shopping or whatever but I was the one who was living it. At first the Sinemet was scheduled twice a day and things were awesome at certain times. I did lots of research and got the doses increased to three and eventually five times a day. I then learned it took time to kick in, so I got it changed to one hour before needing the extra kick in the pants.
Maybe that was one good thing I fixated on. Reminds me of my favorite therapist. He says fixation is one of my biggest issues. I try to turn it right around on him and say he fixates on his “old material” for we joke more than a lot. He likes to say the same jokes over and over. Examples: I’m taking Monday and Tuesday off, which would be false. Every time I open my mouth he twists my words. I’ll say his name and he’ll say “Who’s so and so?,” using his made up name. Twisting my words again, I would say I want to do a sustain in my therapy. His reply would be, “You want to finger paint?” He likes to make bets with me, or as he more accurately describes them “stipulations.” He even googled the definition of stipulation. We flip a coin most of the time. We also play single hands of rummy for these stipulations. He even quizzes me about songs on the radio, “If you don’t name this band right I’m taking Monday off.” But it’s all in good fun. Not a single time when I’ve lost one of these stipulations has he ever abided by it. Which I have to admit, I lose roughly seventy five percent. Which reminds me of his partner therapist who says it’s a trick coin. Over and over again I’ve coined him as my O.T.(occupational therapist,) P.C.T.( physical conditioning therapist,) P.T.A(physical therapist assistant ,) and I make up a few titles, speech therapist for he’s always twisting my words, maintenance man for he is constantly fixing things on my chair or making stuff and comedian in training for his jokes are stale. But overall I truly enjoy his company and appreciate everything he does.
I started writing poetry a while ago. Became obsessed or fixated with it like everything. I would ask everyone and anyone for random topics and then put their name before them. I would copy paste and forward them to all sorts of family and friends on Facebook messenger before entering them into a site for safekeeping. It all started because I would write short poems to an overnight nurse. Now I’ve done over two hundred and have five different books on Kindle. I also did the covers for these books. I proudly have all five poetry books, two hundred total, drawn art, digital art and other people’s art on this site. And now I’m blogging. Only positive blogs. Here’s an example of one;
Yup, it failed. Technology is awesome and I simply adore it. I couldn't live without my tabby (tablet). Technology is the backbone of this century, but every once in a while it fails. Maybe your cell isn't getting reception, your computer crashed, or even something stupid like a computer chip in your car keys. Keep calm. We should embrace it, even if it sometimes doesn't work right. Imagine being a pioneer back in the day, playing with the ball they would make from a bladder balloon, or their dolls made from corn cobs and rags. I couldn't begin to fathom life without technology. How many times a day do each of us look at some sort of screen. I'm just saying don't get flustered over it when it fails. We've got it five thousand times better than the pioneers or settlers.
A while back I got sick of going through the middle man on everything. So I started to pursue my own guardianship. I mention the middle man because they were at every care plan, doctor visit and would sometimes just pop in to say hi. They didn’t necessarily just “pop in,” they had multiple people living here under their guardianship, and they would have to meet a quota. Having an extra opinion didn’t really hinder anything, it was just kind of annoying. To me it felt like people thought I was incapable to make basic decisions. The things that they signed for I would usually be down with anyways. My biggest thing was that I wanted to ride transit by myself. I went to court numerous times. At first I obtained Limited Guardianship. But that wasn’t enough for I simply wanted to handle everything I could. I eventually got my own guardianship and my family was nervous about it at first thinking I would lose my housing and whatnot. My father was my guardian until he died. My social worker was a big help through all of it. It’s not like she was gung ho for it, nor did she say she was against it she was just doing her job. After the fact we had quite a bit of paperwork to do. We used to have to stamp things with a stamper, but since I self advocated into my Sinemet dosing increases and Neupro patch, I signed all that paperwork with my ex-dominant hand. I told her she can throw that stamper away any day. Self advocacy is a good example for someone who can take care of themselves.
A while ago I got the notion that stem cells might solve everything. I did some research and found a place that would do a procedure for seventeen thousand dollars. I really had faith in this. I started a gofundme account and raised around seven thousand. My dear stepmother, bless her soul, paid for the rest, including airfare etc. The stem cells I heard so many great things about, like people that went from wheelchair bound to walking around with just a walker. These were people who received direct brain injection stem cells. These types of stem cells are only offered in placebos, and with my great track record; try a placebo? No thank you! Florida offered intranasal. Because I have a traumatic brain injury, the blood brain barrier would prevent any medication or stem cells from being effective through nasal passages. My two gigantic brothers and my sister, our family’s token nurse, flew with me all the way to Florida. Sister was a nurse so I could get my medical necessities and the big boys to get my big butt into the plane. I didn’t receive the success I was thinking but still have seen some great gains. Not to forget to mention a great time with three of my siblings.
Communication is very important to me. Even though I joke about talking like a donkey. Which my predictive text picks up. I mention this because I’ve made all sorts of messenger groups. I kind of got the idea from my brother who made a family page. One of the groups is for pinochle. A game that I adore. Funny sidetrack. Pinochle is big in my family. Sometimes two separate games going on at once. It’s also huge in prison. Perplexing how a bunch of convicts can enjoy the same thing as some farm raised Catholics. I don’t know if you know anything about pinochle but there’s two versions; single deck and double deck. My family played single deck which contained the 9’s. But in prison you couldn’t even find the 9’s. They were thrown away as soon as the package was opened. After I got out of prison I remember saying, “9’s are overrated!” I eventually caved after my accident. I have a pinochle app that for the longest time was set up to play double deck. Now it’s finally single deck and so is the website I play it on. Back to messenger groups. I made one for my graduating classmates called The last cardinals for the year after we graduated they combined with another small town and changed mascots. Cardinals to Wildfire. One of the groups is called prayers which contains people I talk and stretch with. I even made two separate prayer groups for the people in it would complain about there phone ringing while they were working. Now I have prayers group and weekday prayers group.
MY NEW HOME
The place I’m living in now is the best place in the state for rehabilitation of a traumatic brain injury. I get physical therapy (P.T.) five days a week, Monday through Friday. During covid, people had to eat six feet apart from each other. This caused residents to have to eat throughout the whole building. This is a twenty bed facility. Some people had to be supervised. The ones who need no supervision get to eat in their rooms. Since some need supervision, therapy rooms and the activities room were being utilized as dining rooms. Since extra staff are needed for supervision therapists and even the maintenance man were coming in on the weekends. But there’s always a way to find a small positive in every situation. Beings that the therapists happened to be here on a weekend I got to occasionally sneak in some weekend P.T.
Physical therapy (P.T.) is a vital key to rehabilitation. Even if you know you will probably never make a full recovery, the gains you have made will show. The PT program where I’m at right now is the bomb diggity. I walk on average twice a week, sometimes three. There’s even been a week when I walked all five days. The other days I thoroughly enjoy riding the Nu-Step, getting on the mat or standing at the parallel bars. The Nu-Step could be described as a sit down bike. I get to use both arms and legs. When I first started doing this they would attach my weaker hand onto the handle using a glove type thing that my PT calls “the mitt,” but now I quite often choose to go without. I obsess over the display that tells me the steps I’ve taken, steps per minute and the time I have been on it. Another thing I like about the Nu-Step is I get to do it for both P.C.T. and P.T., staying on it for a full hour versus the thirty minutes for each if I would split them up. It also gives me ample opportunity to bug my therapists with the flapping of my jaw. When I go on the mat, my PT and I usually joke around saying “Mat on the mat.” We do scooting side to side. I sometimes get a horrible Trigger to a popular country song (Boot scootin boogie) when I give my P.T. the heads up to what I’m doing next. We work on my trunk strength doing sit ups, some I do fast and some slow and controlled. When I first started getting on the mat I would try to do my sit ups as fast as possible, obsessing with numbers of reps like I do with clocks and the display on the Nu-Step, but now I try to find the happy medium of both. I joke about the parallel bars. When I get to the P.T. room I say, “I want to go drinking!” Because it’s standing at a bar. I do knee bends as far as I can go down. Work on picking up each leg individually. When I first started doing this I would have to sit down three times in the allotted thirty minutes and now I can stand the full thirty minutes.
The feeling of walking around by someone who is living in a wheelchair is incredible. I walk on average twice a week. When I first got to this place I would walk about fifty feet with assistance from two therapists. One to hold the walker and one to advance my weaker leg with a gait belt. When I walk they put a boot on my stronger leg to aid with advancing my weaker one. Now I walk with the L. Leg Launcher, which is a piece of theraband tied from my foot up to the walker. This device was the brainchild of my PT and it helps to advance my weaker leg. Also very key to walking is my A.F.O., which stands for ankle foot orthosis. Essentially a plastic brace that prevents my ankle from buckling. The first thing the C.N.A.’s say to me in the morning on therapy days is, “Are you walking?” When I’m self propelling to breakfast if I see my physical therapist on a walking day I simply smile and tap on my brace and he knows.
REFUSE TO SINK
My physical limitations since my accident are pretty serious, but I try to look past it. It took a while but I’ve finally come to terms with the fact that I’m always going to be disabled. I can wiggle my right thumb a little. Extending my fingers is harder than contracting them. Both are virtually impossible but I’m going to refer to any little details. Left arm works okay but still not one hundred percent. I used to stretch out on the table in the O.T.(occupational therapy) room by setting weights on it to flatten my fingers. I even do this at other times of the day. During Covid, my time in OT was limited, so I stuck to the active versus passive (stretching). My neck is constantly stiff. Stretching it myself is something that’s hard to do. I incorporate a little bit of neck stretching into my primarily active PT sessions. I’m in a wheelchair and probably will be the rest of my life.
One of my biggest physical limitations or ailments from my injury would be my speech. Here’s an opportunity to mention my predictive text. “Like a donkey” seems to pop up after I type the word “like.” This happens when I text friends before a “Tas” session and give them a warning. Typing “I talk” and like a donkey pops up. It’s very frustrating when you can’t get a simple point or message across. You could be relatively intelligent but since people can’t understand you, they get the notion you’re unintelligent. Some words are more difficult to say than others. It’s been very diminishing to my vocabulary. Granted, I’m not the sharpest knife, but I’m not a blunt rock either. I get tired of repeating myself, but I really have no choice. Some people I video chat with don’t understand my choice of “Tas” and say “Just text me.” I sometimes talk to myself to try and listen and see what sounds best. I specifically remember doing this before court. “Slow down and enunciate” is one of the main things my speech therapist says, also one sy-lla-ble at a time. Funny sidetrack, when I’m walking with my therapist I sometimes try to say things and we joke around, “less talking more walking!”
I enjoy creating positivity in other people’s lives, through my art and books and simply being verbally positive to other people. Sometimes I can get upset over something and I can kind of lash out. But hey, I’m a human being and I have a traumatic brain injury, so please cut me some slack! The right side of my body is worse than the left. Which has always been really aggravating for I was a right handed artist and now I’m forced to use my left. I used to be so adamantly against doing anything with my left hand. I eventually caved and it’s a darn good thing. I’ve done countless pieces of art for people. It’s usually for their kids but not always. I’ve done artwork for other residents. And I can’t forget about the digital artwork that I’ve done. After all, I was in college for graphic design at the time of my accident. Just like the poetry most of these were done because someone gave me a topic. All of them ended up on my website. Each piece of regular art has my MJK logo on it. Except now they don’t look like an “H,” like my gangster buddy did.
My preferred mode of transportation, well pretty much only, is self propelling. Yet another brainchild of one of my favorite therapists. When I came to this place my wheelchair was unable to provide me with this capability. But he adapted it and even put some cushy padding over the metal after the left pedal (stronger side) was removed. My chair is pretty fancy, even reclines for comfort. When I’m tipped up all the way I can get around pretty good. When I first started doing it I got addicted to seeing how many times I could do laps around the building. You see I would start like twenty minutes before meals and see how many laps I could do. I don’t remember all the specifics but from what my PT tells me about the distances we walk, which would be the same area. It was about half of a mile.
Care plan is the rules and regulations to each individual resident. Such as their transfers, supervised or unsupervised eating, puréed diet or whole foods and so on. Every few months we even have what we call “Care Plans.” Where your family, guardians and the head of each department gather around to talk about your progress or regress. My diet was a puréed diet when I first got here. Then it went to a mechanical soft diet and now I’m totally unrestricted. But to this “unrestriction” there is one stipulation. I have to cut everything to bite size and if I disobey once, it’s back to mechanical soft. This man writing this happens to love his food, so needless to say I haven’t disobeyed once!
Like I said my chair reclines or tips. I’m pretty sure this wasn’t my first chair but I’ve had it for quite some time. There used to be a restriction on how far back I could go. There’s a little meter. I think this first came about for issues with my catheter. Again I give an example of self advocacy, for I pursued a few different doctors for this. But this tipping restriction was a daily comfort thing. And their reasoning behind it was with little backup. So I pursued doctors and got it nullified. The score is daily comfort- 1. Uninformed care plan restriction-0. I’ve had some other disagreements with my care plan too. These care plans, even if I’ve disagreed with some of the decisions, are in our (the residents) best interest. They are to facilitate standardized and evidence based holistic care. Which makes me think of one of my poems that I did….
Nurses have our respect
Caring for the wrecked
Taking care of more than medication
Usually from a health station
Working from hospitals, clinics a nursing home
There’s even travelers who do it as they roam
Everyone should appreciate
The ones that do their job great
Some are extremely rude
Not helping your mood
Still that’s very rare
Most genuinely care
I spend a lot of time in therapy, well at least I did before all this covid crap. I still spend as much time there as I’m allowed. Now I can only be in the therapy room for the thirty minute session that I’m allotted. However my PCT let’s me do both back to back so I can just get them both done at once. It probably benefits him this way too. He works in the OT room and does his PCT out of both the PT room and Occupational therapy room. Before covid I always had PCT in the afternoon. But since covid they use the OT room for eating. Like I said some people need to be supervised. Before C-Dump I would spend every extra minute I had free in OT, either drawing or playing cards. Playing cards with a stipulation that’s never enforced! Actually, speaking of afternoon PCT. I should mention that I used to go back to bed for a couple hours in the afternoon every day. Now they set up a card table in my room so I can do art and stuff. Ironically I bought this card table from amazon two weeks before covid. God bless amazon and god bless my stepmother for the amazon allowance she gives me. So even if I actually wanted to go to bed I couldn’t because there is kinda a card table in the way. I replay jokes just as much as some of my therapists. At lunch I sometimes say to the cnas with different excuses every time….”My back is really killing me I want to go to bed.” They never buy it because I start smiling before I finish saying it.
CONCLUSION
And that pretty much sums up my life. Of course, there are all sorts of things that I forgot to mention, probably on purpose! But the safety warnings are all throughout. Such as don’t use dirty needles, try not to do drugs, but if you do, don't use needles. Always stay positive. Make the best of every situation. It’s a very real fact that we are all inevitably dying, but we should let our daily interactions with others help them with any struggles that they are facing. Trust and love your family. Listen to your therapists, and I never said this directly but I’m saying it now, I beg you to ALWAYS WEAR A HELMET.