Happy Valentine's Day

Valentine’s Day originated as a Christian feast day honoring a martyr named Valentine. Through later folk traditions, it’s become a significant cultural and commercial celebration of romance and love in many regions of the world. On Valentine’s Day, people on average usually spend close to $200 per person. It’s expected that Americans plan to spend nearly $26 billion today. If money could buy love, couples might have the most successful romantic relationships.

Around 145 billion Valentines cards are exchanged every year. Even kids in classrooms exchange Valentine’s Day cards. I remember when I was in grade school, handing out cards to every kid in my classroom and eating candied hearts with words on them. I’m sure that still exists to this day. That’s along with heart-shaped boxes with all sorts of different flavors of chocolate pieces inside. If there isn’t a paper that tells you what’s inside, you need to guess which flavor each one is by tasting them.

Although it’s only celebrated by about 50% of Americans, that’s still enough for places to keep producing cards and gifts for it. Even fresh-cut flowers are given as love for someone. Every year, my mom even gets me Valentine’s Day cards, along with putting sweet treats for my nurses and PCAs. I don’t eat sweets anymore; I prefer salty foods instead. Along with me not craving sweets, I’m allergic to pollen so flowers are out of the picture. 

Thoughtfulness trumps splashing the cash. What does your sweetheart love? Kind intentions. Most people prefer a gift that shows thoughtfulness and an understanding of the recipient’s favorites, hobbies, and preferences. You don’t need to spend thousands of dollars on jewelry to show your loved one they are priceless to you. Be mindful this year and think about the best way to show your affection.

I do want to shout out a happy Valentine’s Day to my love, Jay. Also, to the many others who celebrate today.

Jenni

Computer Brain Chip

 Synchron says it's the first to implant a human brain-computer interface in the US

According to an article from Yahoo news, “Brain-computer interfaces have become a practical (if limited) reality in the US. Synchron says it has become the first in the country to implant a BCI in a human patient. Doctors in New York's Mount Sinai West implanted the company's Stentrode in the motor cortex of a participant in Synchron's COMMAND trial, which aims to gauge the usefulness and safety of BCIs for providing hands-free device control to people with severe paralysis. Ideally, technology like Stentrode will offer independence to people who want to email, text, and otherwise handle digital tasks that others take for granted.

Surgeons installed the implant using an endovascular procedure that avoids the intrusiveness of open-brain surgery by going through the jugular vein. The operation went "extremely well" and let the patient return home 48 hours later, according to Synchron. An ongoing Australian trial has also proven successful so far, with four patients still safe a year after receiving their implants.

It may take a long time before doctors can offer Synchron's BCIs to patients. The company received FDA approval for human trials in July 2021, and it's still expanding the COMMAND trial as of this writing. Still, the US procedure represents a significant step toward greater autonomy for people with paralysis. It also represents a competitive victory — Elon Musk's Neuralink has yet to receive FDA permission for its own implant.”

This is exciting news for someone like me, who requires the use of technology for everyday processes (including using my computer.) I depend on speech recognition software to write, browse the web, control household activities, etc. This would also give people in my situation more independence, as they wouldn’t have to rely on others to help them. There might come a day when this implant may become available to the public. 

It’s an interesting concept. Technology is always evolving and advancing. Nothing is ever going to stay the same. Companies are always working on different and easier ways to do things. According to an article on the Tech Evaluate website, “technology is evolving so fast because of a phenomenon known as Accelerating Change. Each technological improvement can create the next, stronger generations of technology at a faster rate. As each generation of technology is better than the last, it builds new technology faster.”

Ultimately, I believe massive, future technological changes are still yet to come. With every new advancement comes an easier way to do things. For someone who’s life is dependent on so many other people to do things for them, the more independence that’s out there, the easier it will be to do things themselves.

Jenni

My Little Buddy

A week from this past Thursday, we had to put Brody down. Around 6 AM that morning, my night nurse and aunt Sandy, both heard him making a couple of loud yelping noises. When they went to look at him in his bed, he was still sleeping, so they thought he just had a dream. When it came time for breakfast, he didn’t go over to eat it. Later when I went over to look at him, he didn’t look at me or wag his tail, which was very odd.

Sandy took him out of his bed, and he was walking very slowly and side to side. She looked up some symptoms, and one that stood out was possibly a stroke. We decided to have him go to the vet since he wasn’t acting like himself. They took some blood work and did an ultrasound on him. About 45 minutes later, she brought him back and said, “it is in good.”

When I saw him, I could see the pain and sadness on his face. Sandy put Brody on my lap then let me know what the vet said. Apparently, he had many tumors throughout his body and in the morning one of them ruptured; from that point there was internal bleeding, and by the blood work they could tell that he had cancer everywhere. 

Sandy told me the options the vet told her: I could have him home with me, but he probably would only last through the night or there is a medicine he could take where he may live 3 or 4 days. I chose the 3rd option, to put him down right away because I did not want him to suffer any longer. 

The role Brody played in my life as a companion dog, causes me to grieve, not only for the loss of him, but his emotional support. Adjusting to the fact that I’ll never spend time with him again is painful, and I know it will take a lot of time to adjust. He was a special dog; we shared a bond and affection like no other. He is also missed by my family, caregivers, and everyone’s life in which he touched.

It’s taken me some time to write this blog post because I’m still grieving. His presence in our house is greatly missed. I was in such a routine with him that I’ve caught myself during certain times. I still look at the time at 5 PM, his suppertime. I still want to call him when I’m going from room to room. I also know it will hit me even harder when springtime comes and it’s warm enough to go for a “walk and roll.” 

I know there will never be another “Brody”, but at some point, I know I’ll come across another dog to be a companion to me. I miss my little buddy so much! 

Jenni

A poem I wrote about Brody:

My Companion Dog

My mom takes me for walks

pulling on the leash to makes her wheels go faster

I’m dependent on her to give me affection and protection

I look into her blue eyes, hopelessly devoted

she is my family

I’m a dog, I’m fun, all I want to do is have fun 

when she is sad or crying, she really messes with my mojo 

That’s when I like to jump all over her, lay on her lap 

comforting her until she gets over it and takes me outside

for the most part, I love the simple pleasures of life 

One thing about me is I don’t judge 

if she makes a mistake, I forgive her

if she forgets something, it’s no big deal

when she has doubts, I will politely disagree

I see her for what she really is, pure awesome!

I know how to make her feel guilty

I just sit in front of her or at the window 

she knows what I want, mostly some attention

I know how to speak English, just not verbally

sometimes I choose to ignore her 

My favorite thing to do right now is sleep

I’m most comfortable tucked in tight places

I also like to sleep in my bed, on the couch or 

floor with something covering my face 

The more hidden I am the better

His favorite spot on the couch

Brody loved fresh laundry!

And his beds!

Happy Holidays

This past week, I’ve been snowed in. I also had to cancel going to ABLE because of the weather. There was a huge blizzard Wednesday and Thursday along with cold temperatures. So, I’ve been hiding inside. The last time I went out when it was this cold, my tubes expanded and started popping off everywhere possible. Plus, since I have a humidifier connected to my ventilator that heats the air I breathe, it leaves moisture in my tubes. If the water drops get too cold, they form icicles!

Merry Christmas to all! Christmas Eve we were supposed to have my sister and her family over for dinner with a meal of prime rib. Although she hadn’t been feeling well for a few days and ended up testing positive for COVID. I felt so bad. Especially because Christmas is a time for gathering. My mom, Sandy, and I ate grilled cheese and tomato soup. A first for Christmas Eve dinner!

Midafternoon on Christmas day Kristen’s boyfriend, Anthony, brought my 2 nieces over to unwrap some presents. Kristen hopped on video using my mom’s echo show and was able to watch. Good thing for technology these days. Later, for dinner we ate lasagna with my other aunt Julie, her husband Pat from Duluth, and my grandma and grandpa. It was a nice weekend visiting family and celebrating Christmas.

Today, I played a couple rounds of yahtzee with my niece (I got her the game for Christmas.) She caught on quickly; I haven’t played in a long time. We did have the meal that we were going to have Christmas Eve, only my sister still wasn’t feeling well. I am hoping she feels better soon, and we can all be together. For now, I plan on going to ABLE this week, since the temperatures are going to be in the 30’s.

I hope all of you had a lovely holiday.

Jenni

Accomplishments

I’m heavily involved in the spinal cord injury world, as my focus is to share information about research going on, resources for information, and creating content for others to learn more about what it’s like as a SCI survivor. Hence the reason why I write blog posts and volunteer so often. As in my last post about becoming an ambassador, I am an advocate for people with SCI and others within the community.

As an ambassador, MSKCT has provided me with a wide range of free, #researchbased resources to help #SCI survivors, family members, and others looking for information, including a toolkit for my position. To learn about the ways #SCI impacts depression, bowel function, sexuality, and more, visit https://msktc.org/sci. You can also learn how to become an ambassador if you visit their website, without adding SCI at the end.

My mom and I recently did a video interview with the Morton Cure Paralysis Fund (MCPF). “In 1995, Peter Morton broke his neck in a bicycle accident that left him paralyzed from the neck down and unable to breathe without a ventilator… Now, twenty six years later, with the help of dedicated donors and volunteers, MCPF has raised over $5 million for cutting-edge research in the United States and around the world.”

Devastated by the tragic accident, friends turned their hurt into hope. With little more than a dream, That All May Walk Again, they launched a small golf tournament in Morton’s hometown to raise funds for spinal cord injury research—and the Morton Cure Paralysis Fund (MCPF) was born.

Lately, they’ve been doing podcasts on all different platforms, interviewing others with SCI and people revolving around. During our video, my mom and I answered questions related to and about our experience after my spinal cord injury. It recently launched on YouTube and their website. You can view it by clicking on this link.

My biggest focus right now is on finishing my memoir for others to read. I’m hoping that it helps people along with sharing my story with others. Since I’ve been writing poetry, it’s been an easy way for me to develop my writing skills. It helps with creating in-depth content, metaphors, images and more. I suppose that’s why I haven’t finished it yet. I have been so into writing poems that I’ve kind of put my memoir aside. It’s difficult to not write poems, since I subscribe to the website.

Jenni

A Way to Fill My Cup

 If you know me, you’d know that I love helping others. This includes, but is not limited to motivational speaking, sharing my story with others, volunteering, etc. The Pandemic put a real damper on my situation as a quadriplegic paralyzed from the neck down. Aside from my spinal cord injury, the “stay-at-home” order was one of the most difficult times in my life and had a profound effect on me.

I know for a fact I’m not the only one. According to the World Health Organization (WHO), “Plenty of us became more anxious; but for some COVID-19 has sparked or amplified much more serious mental health problems. A great number of people have reported psychological distress and symptoms of depression, anxiety, or post-traumatic stress.” 

I tried everything to make myself useful in a time when all I was able to do to connect with others was on my computer, video or over the phone. That’s when I decided to find ways to help people through the web. I searched many different places but didn’t really find anything that suited my capabilities. Other than being able to blog, write poetry, and work on my memoir, it’s been difficult these past couple of years. Even now that the order has lifted, I haven’t reconnected with friends or gone out many places.

Recently, I was on the web searching again for different things to do relating to spinal cord injuries. I came across this website called Model Systems Knowledge Translation Center (otherwise known as MSKTC). Within their website, were various amounts of information for people with SCI’s, TBI’s, and Burns. After reading some of the information, I was floored at how much knowledge and help they had for people in my situation and alike. 

I also saw that I could become a “SCI Ambassador” to help people with spinal cord injuries. I had to fill out some information about myself and complete an application. This was exactly the type of thing I was interested in doing. As stated on their website, below is a more in-depth description of what they’re looking for:

“Are you passionate about helping people living with spinal cord injury (SCI) and their families? This could be the perfect role for you! The goal of the Model Systems Knowledge Translation Center (MSKTC) Ambassadors Program is to inform, empower, and help individuals with SCI live well. We are looking for people living with SCI, their families, and those who support them to serve as ambassadors. MSKTC ambassadors will actively promote and share free, evidence-based resources from the MSTKC to help people with SCI live well when interacting with MSKTC's audience and the wider SCI community.”

After reading this, I applied for the position immediately. Then I set up a Zoom visit with them. My main mission is informing others about how they can help others by using their resources. It’s great that I have platforms (including my blog and help of others) to spread the word about MSKTC and all the help they can provide for people in need. If you browse through their website, there are many “user-friendly resources… available in a variety of formats such as printable PDF documents, videos, and slideshows.”

I hope you can check out their website for information to not only use as a resource for yourself, but pass on to your friends, family, or others in need. An easy way is by sharing this blog post or their website by clicking on their website address: https://msktc.org/

Jenni

If you have any questions, please feel free to reach out to me or contact MSKTC for more info.

Two Decades

After any change in life, there is an adjustment period. It’s how we adapt or become used to the changes that occurred. Without a doubt, experiencing a spinal cord injury is a challenging and new situation. When it happens, adjusting to living with SCI, can be hard; especially when trying to put your life back in order. Everyone has their own way of dealing with it although continuing to alter changes in life can be similar.

Going home is a major step in adjusting to life after SCI. It can be exciting to get back to the comforts of home. It can also be scary if you are unsure of what to expect once you get there. Having to get used to a “new normal” daily routine takes time. In my situation, I had to learn what it’s like to have others take care of me (not having as much independence as before.) 

I often say “it feels like I’m doing things for the first time” as I learn how to do activities differently. That feeling has faded as I worked through problems and figured out the best way to manage my daily routines. Despite experiencing a mix of emotions, I try to keep my mind occupied since I’m no longer able to physically do things.

It’s been two decades since the car accident that forever changed my future took place. I know I’ve written on my blog about positivity and hope, some of the very feelings I needed to thrive. Although at the time, I was very uncertain as to what the future would hold for me. Thankfully, I had friends and family supporting me, helping along the way. 

I chose a life of happiness, not wanting to live my life with immense sadness, anger, or depression. I can’t speak for others who experience traumatic events. Only how my life played out and thereafter. I feel very fortunate to have people by my side, helping me throughout the way. Although, there were moments after in which I had to take time to heal my emotional equilibrium.

I do believe that everything happens for a reason, no matter how challenging or difficult it is. I’ve always felt that there was a reason why I survived. Maybe it was to help people in my situation or open someone’s eyes to what it’s like living with a disability. Sharing my story with others, whether it be using my blog or motivational speaking can be a way to express my feelings. 

Whatever it may be, I’m glad that I did. Life is short, so I try to do the best I can at living it to the fullest. Don’t take things for granted, you never know what can happen.

Jenni

Newest poems:

Living Life

Striking my inner being

like lightning bolts

times of a troublesome past

paralyzed body no longer breathing

trying to heal from the inside out

realizing life is worth living

Stress in Life

Nerves press firmly against my cortex as

boiling blood gushes through my veins

clouding my judgment,

clogging paths to relief

Frontal lobes on fire

my eyes water with fury

twisting and turning thoughts

scrambling my brain leaving it to rot

Struggling to maintain composure

bumps in the road create challenges and obstacles

stress of becoming paralyzed leaves emotional scars

slowly emptying all that’s left within me

Question everything that’s happened

How? Why? What now?

the day is ending

pain explodes beyond measure

Courage finally intervenes

willingness to survive has arrived

despite past feelings of doubt

my mind finally is free

What have I been up to?

Hello everyone!

I have lots to share. The biggest news is that I got my cast off my leg last week. I went in and my orthopedic doctor took my fourth cast off, then I got an x-ray. She said that it’s healed enough that if I was walking, she would recommend me to start bearing weight on it. Hopefully nothing else will happen to it or any other of my bones that would cause setback at ABLE. I’m going back in about a month to get another x-ray to see how it’s healing.

If you’re reading this and are not from Minnesota, the weather here has been cold for October. It’s supposed to be fall, although it was so cold this past week that it snowed. Good thing it only lasted the morning and then warmed up during the middle of the day for it to melt. I wasn’t taking Brody out much because of the weather and the cold, except for today.

I’m still perfecting my poetry writing (thus the reason why I haven’t blogged much lately.) I also haven’t written much for my book. I believe the imagery and metaphors I’m using will help in my book. My mom and I did an interview today for the Morton Cure Paralysis Fund and it will be a YouTube video coming soon. In my last post, I shared their first video. I’ll post the link on my blog when it becomes available.

I’m hoping to write more blog posts about other things than just updates about me. 

Jenni

Here are a few more poems I’ve written:

Hiding Behind the Clouds

Two clouds pass another on a wisp of wind

revealing a ball of fire showcasing its rays

casting shadows on the earth below its plain

Moving swiftly, beautiful, and bright

diverging left then right without a word said

peeking into different lives from far away

Unlocking the key to an ancient mystery

accessing countless times of troubled pasts

sifting through a treasure trove of memories

Holding visions while trusting processes

powered by motivation to seek answers

the two clouds produce inspiration from above

A Scene from Heaven

Numerous colors paint the forests’ floor,

as hummingbirds flutter in the distance

and frogs croak on sunlit lily pads

warm breezes wander between flowers

Wind whizzes around dark tree trunks

shadows appear amongst overhanging limbs

between the kiss of falling leaves

glimpses of patchy sky seen breaks through

The vibrant trees stick to their boundaries

casting show stopping colors on the flowing river

that rumbles through the path it’s created

picking up every evidence of being there

If October never existed

No days so still, so kindly sincere

such reverential quietness in the air

Voices so crisp with integrity

Leaves switch to yellow, orange, and red

Gold in its pocket full of recollections

reminding me of ambient occurrences

Times so pleasant as a fine October

if it never existed, I wouldn’t be alive

as my birthday lands on the 19th

When the light is sweet and heavy

permanence takes its bitter shape

folding amongst natures hugs

SCI Video

"It's here! The Morton Cure Paralysis Fund is happy to present Spinal Cast, Episode 1 featuring Dr. Ann Parr discussing the amazing spinal cord injury research taking place in her lab. Click below to watch it on YouTube or search for Spinal Cast on your favorite podcast platform."

YouTube video

I received this in an email from The Morton Cure Paralysis. It's very interesting how they talk about Spinal Cord Injury patients, research, and implantation of the device. It's about 20 minutes long, but is worth listening to.

Jenni

Another Update

I’m still recovering from my spiral fracture on my right leg. I have gone to the orthopedic doctor three times so far since it happened. The first appointment was an x-ray and to put my cast on, then they wanted me to return in two weeks. The second one they cut my cast off, took an x-ray and said it needed a few more weeks. So, they put another cast on and wanted me to come back in three weeks. When I did, they took my cast off and took another x-ray, and determined it hadn’t healed at all from when I first fractured it. 

They put a cast on again and told me to come back in another 3 ½ weeks. It’s been a little over a week since then, so I’m not sure what to think when the next appointment comes around. Hopefully it’s healed at least some, because the next option is to put pins in to hold it together, so it heals faster. I’m not looking forward to that, if that’s the case. I’ve been modifying ABLE avoiding exercises that use my legs.

I also have been using a lift to get me out and back in my chair instead of manual transfers. When I first started, and they told me they were going to do a manual transfer, I was scared. I’d never transferred that way before I have only used a lift. It was going good until my last two injuries on my legs (bursitis in my right knee, and the spiral fracture I’m still healing from.) Using a lift does take longer than manual transfers, although it’s a safety route.

I’m praying for no more injuries! Other than ABLE, I’ve been getting outside as much as possible. Unfortunately, Brody isn’t feeling all that great. He wasn’t eating well for a few days and wouldn’t let anyone get close to his mouth. He went into the vet to get his teeth looked at. They said he has a lot of tartar, gingivitis, a loose tooth, cracked teeth etc. So, because of his bad teeth. In September going to have surgery and have multiple teeth pulled along with a deep clean. We’ve now been soaking his food in water, and he’s been loving that.

Now when I take him out for walks, he doesn’t like to walk the whole way. When he stops going and just looks at me, I put him on my lap. He lays down and then I go as far as I want! Although, the temperature outside has been quite warm and humid lately. It’s hard to go too far and I try to stick to the shade, so I don’t get to warm. That’s one thing that’s difficult about being a quad; when it’s cold I’m cold and when it’s hot I’m hot. 

Since we are approaching August, usually temperature in Minnesota only gets warmer. My favorite time of year is fall, not just because of the weather being cooler, but the leaf color changes are nice to look at. My sister and niece, Avery have birthdays this month. I always look forward to buying things for other people, especially for holidays.

As I said before, I've been on a binge of writing poems. I write one almost every day, mostly for contests on the site: All Poetry you can check out all the poems I've written by clicking on the link before this. Although others I've just posted for people to read. I thought I would share more of what I've written within the past couple months. 

Feelings of Hope

Letting my emotions flow within my veins, 

like water seeping through cracks in wood.

Enlightening me to share my sense of calm

with others until dawn meets the horizon.

Silence echoes across open land in sight,

while my mind reaches a height of stillness.

Beneath my feet feeling single grains of sand

navigating their way through open valleys.

The wind finally rests as thoughts of healing

begin to enter the realm surrounding my being.

Change

Within a moments time, 

my body changed like a 

caterpillar transforming

into a striking butterfly.

Life throws curveballs

letting me know how much

it can push itself, until

my breaking point. For the

instances that I am lonely

are far too many to count.

There are times in my past

where I felt like giving up,

because it’s easier than dealing

with being paralyzed from the 

neck down, on a ventilator.

Like a puzzle, I just pick up

pieces of my broken body,

slowly putting them back

together. Realizing that my time

here on earth is worth living

to its fullest. Despite my troubles

where I’ve slipped and fell, the 

path to my destination is clear.

My spirit flickers a faint light,

like a candle in a slight wind.

Since my near-death experience,

I now realize that the loneliness

within my mind has dwindled.

Changing pages has given 

me a chance to gain confidence,

preserving a future to survive.

By stepping out from behind the

shadows, I grant myself permission

to share my story with others.

Breathe In

Within two decades of moments lies dangerous

thoughts of reacting to a future unknown

Emotional insides twist with anticipation as feelings

inside my paralyzed body seize on-demand

Affecting my ability to move amongst beings

as every effort beyond has a cause with no feeling

Showing loneliness upon difficult times of struggle

like being on a ship with no lifeboat aboard

In spite unimaginable living in shadows of pain

stricken underneath me like light turning to dark

I now realize my past hatred of a time troubled accident

has dissipated into the air I breathe through my vent

Reminding me of myself despite my tight grasp

binding down at this moment however looking afar

What I’ve now become although whom I will be later

surrounding happiness above distant thunder clouds

Springtime Wonders

Blue sky shows above as the rays of sun shines on my face 

feelings of glow as the wind whispers in my ear ever 

flowing through the trees as the next season appears

all around as soothing scents of lilacs, hyacinths, and daffodils

start to grow in the ground and buds began showing

it is as if the world is telling me to be silent 

while the red cardinals flyby singing to each other 

with their sweet sounds of whistles flow amongst

my shoulders become relaxed as I feel a sense of calm

through the change of seasons while white winter wonderland

begins slowly disappearing as the temperature raises 

melting the snow away beginning to showcase spring 

blades of grass poking through the old crackled dried up

dead brown leaves laying in a bed below from last fall 

all seasons showing their stories right in front of my blue eyes 

the smell of petrichor produced by wet rocks after

raindrops fizzing as they splashed down caring an aroma

fills the air which makes me sneeze because of allergies 

although the light breeze slowly floats through leading it away 

while new spotted white fawns begin to show themselves 

their mothers protecting them when strangers come near 

showing them the ways around how their life is supposed to be 

while dad with pointed racks of antlers watches for predators 

that come near as the snow-covered water frozen from 

low temperatures, starts to melt opening-up as water begins

flowing making space for green mallards and geese finding 

their mates, other animals able to drink swiftly as the sun gets higher 

opening sky as its warming the nature in every corner 

the crickets make their calling, the bees start buzzing 

the black spotted red ladybugs land on my arm tickling me