Writing My Memoir

I’ve always thought about writing a memoir about what happened to me and my journey throughout life, especially since I love to write. It would also create connections and hopefully bring joy along with inspiration to others. I already have many ideas and have even started organizing chapters. I know it takes a lot of time, effort, dedication and skill to write a memoir. Although I have a lot of time, since I’ve been waiting for my knee to heal before going back to ABLE. Also, I have a whole blog full of posts in which I can use for ideas and inspiration.

I’ve been researching online about how to write a book and get it published. I have also been contacting people I know that have written books and memoirs to see how they went through the process. At first, I thought of using a ghostwriter. This entails having someone else write it for me. They would interview me for 3 to 5 hours, gather as much information as they possibly could and then write a first draft. After, I would read it and add or take out anything I didn’t want in.

There are some pros and cons to using a ghostwriter. If I was in the position where I have been wanting to write a book but just haven’t been able to get it done, then I’d consider using a ghostwriter. They can turn my ideas into a publishable draft if I was at the point that writing it on my own was not going to happen. It also saves time, because they can get it written within 4-6 months. 

However, since I’m just beginning the process, I’m not at that point right now. I’ve read that there are some downsides to going this route. I saw that there could be a fair amount of plagiarism. Plus, nobody knows my story like I do. Even if they interview me, the book may come out being something different than I want it to or expected to be.

I’m not sure how long it will take, but I’m hoping that by using my time wisely and slowly working on it, bit by bit that soon enough a first draft will be created. Then with the help of an editor to put it together in a way that makes sense, a final draft will be completed. I’m not sure how many chapters I’m going to write yet. Some people have told me that the shorter the book, the better the read. Others said to just write your story and whatever comes out will be great.

Please feel free to comment if you have any suggestions or ideas for me. Remember, when you make a comment, it’s not going to show up right away. I need to moderate and accept it beforehand. I would appreciate any feedback. Thanks!

Jenni

My Hand

About two weeks ago, my nurse noticed that my left hand was bruised and swollen under and on top of it, along with my ring and pinky finger. We weren’t sure what happened, but I wanted to give it a few days in case the swelling went down. After waiting, the swelling went down a little bit and the bruising started to fade some. Although just to make sure nothing serious was going on, I decided to get an x-ray of my hand.

I ended up going the beginning of last week. I got an x-ray of my left hand and both my knees. My orthopedic surgeon wanted to see how my leg is healing; it’s been about 3 ½ weeks since he told me to rest my legs along with keeping them at a 45° angle or less. The on-call doctor called me later that same day and told me that I have a small nondisplaced fracture at the base of my pinky finger. I made an appointment to see a hand orthopedic surgeon and went yesterday.

When I went today, the hand orthopedic surgeon showed me my x-ray. She told me that it was in place, so I didn’t need surgery. She recommended that I wear a hand splint for at least 6 weeks. It will probably take about 8 weeks because she said my bones are more fragile. When they put it on me this afternoon it started hurting right away, then dissipated after an hour or so. 

After about 3 ½ hours, my arm started jumping and spasming. For me it’s usually an indicator that something is hurting or uncomfortable. My nurse took it off at that point and my arms subsided. I may have to wear it on and off for a day or two so that my hand gets used to it. The orthopedic doctor told me to keep it on most of the time except when I’m washing up.

With non-displaced fractures, the bone typically stays aligned in an acceptable position for healing. The splint will immobilize the injured bone, promote healing, and reduce pain and swelling. She also recommended that I keep it elevated and apply ice to it as often as I can. I will need to just keep using the splint for longer periods of time each use until my hand starts to get used to it. Other than the stress fracture in my left knee and my fractured tibia in my right, I haven't had any other injuries to my body.

Jenni

Changing Seasons

 

“To be interested in the changing seasons is a heavier state of mind than to be hopelessly in love with spring.” -George Santayana

Cold weather helps us appreciate warm weather more-and warm weather helps us appreciate cold-weather. With the change in seasons there are so many things to appreciate. During the course of a year, we watch trees change from bare to green to orange and red and gold to brown and back to bare again. Then there’s the miracle of budding and greening all over again the next year.

“As I enjoy the change of seasons, I can enjoy the changes in my life.” -Anonymous

The above quotes and saying is from a book I have called The Daily Book of Positive Quotations by Linda Picone. As we welcome fall today, September 22, this one is from yesterday’s date about the change of seasons, but also about the changes that we go through throughout life. I found this especially significant to me, as I went through a drastic change in my life: going from an active teenager to paralyzed from the neck down in a single moment.

Throughout everyone’s journey they will experience some sort of change in life, whether big or small. Some examples are puberty, graduation, marriage, the birth of a new child, empty nesting, divorce, new job or retirement, death and more. These events may bring on stress or worry about what comes next or happiness about what the future might hold. One important part about change is how we anticipate it and react to it. Another way to prepare for changes are when we learn to trust ourselves to handle any situation.

Change takes time to get used to, whether in life or business. Don’t worry about what you may lose and start focusing on what you may gain. It’s not always about trying to fix something that’s broken but maybe it’s about starting something over and creating something better. It doesn’t matter what type of change you might be going through or up against, just know that you will learn to cope.

Jenni

Life As a Quad VI: Anything Is Possible

After sustaining a C-1 C-2 spinal cord injury, I have always had a positive outlook on life despite what happened to me. The idiomatic saying "anything is possible" means we cannot predict with any degree of certainty what will happen. Also saying "anything possible" is a way of responding to someone who makes a conjecture about what s/he wants to happen, but which is not a guaranteed outcome. Thus, I think that things happen for a reason and that we have the power to choose how we want to live certain aspects of our life.

Before my accident, I was a typical, active teen teenager living my life to the fullest. I played sports, hung out with friends, and enjoyed going places. I try to uphold a connection on a spiritual and physical level with the things that are achievable, even though not all my physical activities are within reach today. This also means having a good attitude, great expectations and the belief that “anything is possible”.

Even though the road to recovery can be long, it’s important to remember that there are people supporting me along the way and that I can do it if I have the strength to believe it. Life as a quadriplegic paralyzed from the neck down does have its challenges, although I feel like there are no limits to what someone with this injury can do. This is especially true to today’s technology and the improvements that are being made every day.

I have managed to live with my injury despite how challenging, frustrating, and life changing it can be at any given time. It is shown that people with a high-level SCI like mine cannot only interrupt one’s body, but also daily activities, important occupations, and entire lifelong plans. Despite feeling helpless in the beginning, I’m glad to be alive and take every moment for granted. 

Jenni

“When you have an ability to adapt and overcome, clarity about what you want in life, purposeful persistence and a “make it happen” mentality anything is possible.” - Anonymous

MRI Results

I had an MRI of my left knee a week from Thursday. My orthopedic surgeon video called me with the results a couple days ago. He showed me the MRI and explained to me what the results showed, what it implied, and how to move on from here. I also received results through My Chart, a device used to talk with physicians and review test results. 

When I received the results through My Chart, it’s always difficult to interpret unless someone explains it to you. Although this is what I saw on the test results page:

IMPRESSION TECHNIQUE: Routine MRI of the left knee was performed without contrast.

IMPRESSION: 

1. New bone infarct in the proximal mid tibial metaphysis.

2. New mild subchondral marrow edema in the posterior aspect of the medial tibial plateau without subchondral fracture may represent stress reaction or osseous contusion.

3. No MR evidence for acute meniscal or ligament tear.

4. Stable free edge fraying versus partial tearing of the inner third of the posterior horn lateral meniscus extending into the posterior meniscal root.

5. Diffuse acute and chronic denervation changes of the visualized muscles of the lower leg.

The way my doctor described it, was that I have a proximal mid tibial metaphysis. In other words, a stress fracture on the posterior side of my left tibia. My doctor suggested that my leg should stay at a 45° angle or less than, straight being the best and 90° being the worst position. I went to ABLE yesterday and discussed my situation with them in a very lengthy conversation on how to proceed from here.

At the end of the discussion, we decided that it would be more ideal that I take the next 6-7 weeks off from the program (starting this coming week). Since my doctor told me that it would take at least six weeks for the fracture to heal, I found it most ideal to take at least this amount of time off. Also, since my doctor has suggested that I stay at a specific knee angle for the next 6-7 weeks, it would be difficult to transport to and from my appointments. Ultimately because getting in/out of the van I am required to bring my knees in to a 90-degree angle which my doctor has suggested to avoid. 

I felt that it is best to focus on healing for now and plan to return when I am ready, and my fracture is all healed. I did have a few questions for some of the people at ABLE regarding my return. I was wondering when I returned what my schedule would be and if I would still have the same lead person that I was working with. He explained that since I’m technically taking a medical leave, that I wouldn’t lose my spot in the program, and they would most likely keep me placed with the same people.

This was great news to hear! Hopefully I heal fast and have a speedy recovery rate with no to little side effects. I’m sad to have to take time off because I’ve made so much progress. Although even if I lose some of the strength and improvements I’ve gained, I’m positive that I will quickly get it back quickly since I haven’t lost the ability to know which muscles to use in order to move. 

Also, at some point, my doctor wants me to get x-rays of my right leg. A while back while doing ABLE, I felt like I injured my right leg, almost exactly where I injured it before. While lying flat, my leg won’t straighten completely and rotates out words. After I explained it, he thinks that it’s not too big of a deal, but still wants it checked out just to make sure.

Jenni

Spinal Cord Injury Awareness Month

As September comes near, United Spinal Association is getting ready to mark National Spinal Cord Injury Awareness Month.  Each year, they come together to celebrate the SCI community and to educate the general public on the challenges of living with a spinal cord injury. Despite living with SCI, they have confidence in a productive, full, rewarding life is within the grasp of those with the power to believe it and the courage to make it happen.

According to the latest figures from the National Spinal Cord Injury Statistical Center, located at the University of Alabama at Birmingham, “there are approximately 296,000 Americans living with spinal cord injuries.  Approximately 17,900 Americans will experience a spinal cord injury in 2021”. The average age at injury has increased from 29 years in 1970s to 43 years currently. About 78% of new SCI cases are male.

Life after a spinal cord injury (SCI) can be tough.  Having to deal with the change of being able to move and feel everything to not, is the most frustrating, challenging, and difficult part of a SCI.  I’ve learned over the years how to cope with my spinal cord injury and the different abilities that I can do.  I’m lucky to be so positive about my situation; there aren’t always people that.  The reason I choose to be, is because I couldn’t imagine going through life being mad or sad about what happened.  I choose to deal with it the best that I can for my own sanity.

As hard as it is I know that by working through the challenges and overcoming each obstacle that comes my way is another victory towards a better quality of life for me.  If I can keep that momentum going and those thoughts in my mind, I know for fact I can accomplish anything.  My goal is to teach what I’ve learned to others; to share my story so that maybe I can hel also like someone threw neck down. P those in need of a little inspiration in their life to keep going no matter what comes their way.  

One thing that helps me along with others is the different organizations working to improve the quality of life of people with SCI’s.  They also want to help show others what life is like with a SCI so that people can understand a little bit more about what one goes through when they suffer an injury like mine. I’m glad that there are organizations out there working to improve the quality of life of people with spinal cord injuries. United Spinal helps thousands of people overcome the daily challenges of living with an SCI each year. 

You can show your support for their community and mission by raising awareness, as they celebrate SCI Awareness Month. In order to educate the public on issues that affect people with SCI’s, they pull all their resources together. “United Spinal asks their supporters to share throughout September to help educate the general public on spinal cord injury and spread awareness to the community. If you share any of the content below on your social media networks, use hashtags #UnitedSpinal #WeRollUnited #SCIAwareness.”

Jenni

Poems and Quotes

Whether you’re looking for poems about life to celebrate a loved one or for yourself for inspiration, you’ll find that each one is unique and has a different meaning. They may be short, unique, strong and powerful or long, impactful, meaningful and courageous. Narrative poems may tell a story or simply paint a picture. Motivational poems about life encourage us to take on a new perspective. Other poems about life may stop you in your tracks and cause you to think. 

There are also many quotes out there. They may be only a sentence or two, but just as influential as a poem. These are reasons why I like poems and quotes so much, especially after my accident. They have the power to change people’s minds about certain issues and situations in life. 

That brings me back to my favorite quote and what I always say about it: "Life is not measured by the number of breaths we take, but by the moments that take our breath away." This quote has two meanings for me. The first meaning is exactly how it’s stated. The second is a literal and more personal meaning. Life is not measured by the number of breaths I take, which happens to be 14 breathes a minute, but by the moment that took my breath away.

Jenni

Update

Things have been going great at ABLE. After only seven weeks of intense working out twice a week, I now can sit on the side of the mat unassisted and move myself side to side and back-and-forth (almost like a sit up, only not while laying down). Also, if someone pulls my right arm forward on my armrest, I can pull it back by myself. These are all new things that I couldn’t do before ABLE. I’m very excited with my progress along with newly gained strength and can’t wait to see I can do from here on out. I posted some videos below.

Since being in the hospital to try to find the source of my edema, I’ve lost over 20 pounds of fluid. I guess they were right about my seizure medication being the source of my water weight gain. I feel so much better, and people have been noticing a significant difference as well. There is more fluid that I could lose over time, and I believe ABLE will help with that.

At the beginning of this month, I went to the orthopedic surgeon to get both of my legs checked out. Since I injured my left knee in the middle of 2018, it healed up for about a year after wearing a knee brace but has been bothering me for the past year. At the beginning of 2019, I fractured my tibia on my right leg. A couple weeks ago while doing ABLE, I believe I reinjured my right leg somehow. I’m not sure which part is injured I just know that something is not right about it because my leg spasms and was bruised. It also won’t straighten out.

After getting to my appointment, I had to wait 50 minutes to see the doctor. I talked to him for roughly 15 minutes for him to tell me that in order to see what’s wrong, that I would have to get an MRI and x-rays on both legs. Exactly what I thought before going to my appointment. Then I waited 45 more minutes for my transportation driver to come bring me home. I thought it was a waste of time, but then again, he had to check it out in order to make his decision.

The soonest I could get an MRI was 19 August. I have a follow-up video appointment with the orthopedic surgeon the second week of September. I’ll post an update after I get the results and whatever action he wants to take going forward. I also have an appointment with my pulmonologist at the end of this month. It’s just one of the yearly visits I need, just like a checkup. I usually have them for most of my doctors, either yearly or every other year. I have so many doctors for every need that I can’t even count them.

My family has been doing good. My sister’s birthday is August 11 and oldest niece’s birthday is August 16; she will be eight years old. My other niece will be 1 years old in October. Oh, how quickly they age! Other family birthdays will be coming up in October as well, including mine. Also, I have been getting outside and taking Brody for walks as much as possible. Although the temperature these past couple of months have been in the 80s and 90s with high humidity, which makes it a little and comfortable.

Avery and Madilyn beginning of July

That’s all for this month’s updates. I will update more next month as things progress.

Jenni

Disability Awareness

With having a disability, there are many challenges and misconceptions that I’ve come across. Some of the most common are health, accessibility, discrimination, and language usage. Thus, according to the Right of Persons with a Disability act in 2016: “A “person with disability" means a person with long term physical, mental, intellectual or sensory impairments which, in interaction with barriers, hinders his full and effective participation in society equally with others.”

A great number of disabilities are preventable, however there are a lack of affordable access to proper healthcare, aids and appliances. In my situation, I am very susceptible to health issues. Having a high spinal cord injury and being on a ventilator is one of many reasons why I may get sick or have infections more easily. When those with disabilities get sick, there are only so many options when it comes to accessible and affordable healthcare.

Although efforts have been given to ensure accessibility in most buildings, there are still multiple places that are not accessible. This includes transportation, access to services, restaurants, housing etc. The ADA (Americans with Disabilities Act), require all restaurants to be accessible along with Dr. offices, bars, eateries, theaters, hotels, shops, stores, shopping malls, private schools, museums and service establishments. Some people may not even be aware of the difficulties a person with a disability might face from participating in everyday life and common daily activities of getting into or to an area that is not accessible.

Not only do people with disabilities face discrimination in school there are certain public “ideas” about what someone with a disability looks and acts like. There are a limited number of education places that are available and inclusive. Along with this includes trained teachers and educational materials. I know I faced this firsthand when I was going to school and out in the public. It’s difficult to be out in a world that isn’t always accepting of those with disabilities.

Many people commonly use dated wording when speaking about people with disabilities. Mostly because they may have grown up with different terms. Over time, the terminology has changed, and some words can often be offensive. Disrespectful language can make people feel excluded and can be a barrier for participation. It’s important that people are aware of the meaning behind the words they use when referring to, talking to or working with the Disability Community. 

Use the term “disability,” and take the following terms out of your vocabulary when talking about or talking to people with disabilities. Don't use the terms “handicapped,” “differently-abled,” “cripple,” “crippled,” “victim,” “retarded,” “stricken,” “poor,” “unfortunate,” or “special needs.”. It is okay to use phrases or words such as “people with disabilities”, “disabled,” or “disability,”. When in doubt, call a person with a disability by his/her name.

In my own experience, I have been told by others that I’m an inspirational person and have a vast amount of courage to go through what I did after my accident. Just because someone has a disability, it doesn’t mean he/she is courageous, inspirational, brave, superhuman, or special. It is not unusual for someone with a disability to have skills, talents, and abilities. People with disabilities are the same as everyone else. To me, I’m just trying to get by as best I can and live my life as normally as possible.

I believe people with disabilities need to be more integrated into society by overcoming stigma. Thus, why I like to talk to others and share what I have experienced in my life. This is part of the reason why I blog, do public speaking, and show others my abilities despite my disability. Also, I think the scale of disability needs to be better understood by improving the measurement of disability, including all rights.

At some point in our lives, disability will impact all of us. Later in life you may gain a disability, know someone with a disability, or have a family member or child that you care for. Disability is a part of our everyday experiences. Everyone has a part to play in order to ensure that every single person, no matter what the ability, can achieve a type of society that is 100% involved.

Jenni

“The difference between the right word and the almost-right word is the difference between lightning and a lightning-bug”.

-Mark Twain

Life As a Quad V: Questions Answered

This blog post contains my personal answers to five of the most deep, thoughtful and intimate questions regarding being a quadriplegic. If you have any questions or comments, please feel free to leave one in the comment section below. I always look forward to what feedback people have or what questions they may want answered.

1. What life events shaped into who you are today? 

There are many things throughout my lifetime so far that have formed who I am now, along with my opinions and ideas. The first major one is my parents’ divorce when I was nine years old and in third grade. I believe it forced me to grow up faster and rely on myself more. Also, I feel like it caused me to be more independent life. The second, and biggest, was when my accident happened at the age of 16. It changed my thinking, allowing me to live life differently. It’s also challenged my thoughts along with patience towards others’.

2. What advice has stuck with you over time?

The biggest advice I’ve gotten and has stuck with me to this day is never take life for granted, you never know what’s going to happen. Accept without verification what you have and appreciate the things around you. In my situation I don’t have a lot of independence and require the use of others for just about everything. In the past, I never realized that anything could happen at any time; to hold on to the special moments and people that come about.

3. What is the day of a quadriplegic like?

I’ve often been asked what a typical day is for being a quad. While every quad is different, I can confidently generalize that with being paralyzed and fully reliant on others, one spends a minimal of several hours a day dealing with spinal cord injury care. Although I can only attest of my own experience, I can say for myself over the past 18 ½ years that I’ve had to modify the prospects about how much I can get achieved in a single day.

Life as a quad is different than someone who is able bodied. When I’m not dealing with any sort of medical issue like urinary tract infection or respiratory infection, I still have to focus on other daily tasks and how I’m going to get everything done in one day. Then there are those days where I have too much time and can’t seem to fill it up with things to do fast enough. Also, since I’m not working at this point in life, I can easily get bored without enough things to do. On every given day there so many things we need to look out for-it’s incredible.

4. What is the toughest part about being a quad?

The toughest part as mentioned before, is lack of independence. Having someone around constantly, helping me with my every need is a difficult task to handle. I believe it’s complicated for others to imagine an injury that is more emotionally and physically devastating and draining than being a quad. Those who are quadriplegics, face difficult obstacles in all aspects of their life. This includes a lack of privacy within their personal, family and professional lives.

5. What are the top things you’ve learned over the past years?

Despite losing function and breathing from the neck down, I have learned that it is possible to recover after a spinal cord injury. This includes both mentally and physically, although it takes a lot of mental power, determination and will to do. It also depends on the severity of the injury, along with how aggressively recovery is pursued. I believe having a positive outlook on life and staying motivated along with hopeful is key. 

Life as a quad can always vary depending on spinal cord injury challenges. I like to think of myself as a positive, compassionate and understanding person. I have many people to thank for my success of where I am at today, including friends, family and caregivers. Despite surviving as many years as I have with a SCI and continuing to thrive, I have many more accomplishments I’d like to get done. I know that one can only do so much in a lifetime, but I remain hopeful that my footprint will leave a mark in the sand.

Jenni