Making every food count

June 29, 2014 — 4 Comments

I’ve slowly become more and more anal about eating healthy. I’m by no means calorie counting or choosing low fat alternatives. I just try to eat food that is nutritionally substantial.

I recently decided to become a vegetarian. Technically, I’m a pescatarian, as I will occasionally eat fish or other seafoods. However, I generally only eat seafood if I’m out to eat and there are no other vegetarian protein options.

I decided to change my diet after (stereotypically) binging on a bunch of documentaries relating to the food/meat industry, our relationship with animals (and the environment in general), and nutrition. I came to the conclusion after reflecting on my situation:

1). For folks with SMA, animal protein is difficult for the body to convert into energy. We actually function better on a vegan diet, but I really like cheese! I’m not quite prepared to give up dairy, but I am definitely consuming much less animal protein since cutting meat from my diet.

2). I asked myself: “If I had to kill and slaughter my own meat for food, would I?”
I wouldn’t. As a kid, I remember watching my mom prepare burger patties and being pretty icked out. The same goes for any raw meat even now… I can’t touch it, let alone skin it. Also, I could never see myself taking an animal’s life. I accidentally ran over a caterpillar once and it saddened me.

3). The conditions that so many animals must live in in order to provide meat, a food the human body does not require, makes me feel guilty enough to not want it anymore. There’s also the environmental effects…

…It’s simply a personal choice though 🙂 I don’t judge those who eat meat, as I expect meat eaters to not judge me for my diet choices.

Thanks to my generous parents, we now have a Vitamix! It produces the most amazingly smooth smoothies, ice cream (made from bananas!), and soups. I eat A LOT more fruits and veggies now that they can be emulsified into a filling drink. In one smoothie, I can eat 1+ servings of multiple types of fruit, veggies and protein (generally in seed form: flax, chia, hemp, etc.) You can even add nuts or quinoa (both loaded with protein)! I couldn’t consume close to that many raw veggies in a day before this wonderful device! Many fresh veggies are difficult to chew, so in order to consume 2 smoothies worth of raw fruits and veggies, I’d have to eat constantly, all day long. Now I can be sure that I’m getting all of the nutrients I need.

I’ve been trying to snack better too. If I get hungry between meals, I often opt for Naturebox snacks or something that isn’t pure sugar or salt. I figure if I take the time to eat a snack, it should provide some benefit other than purely tasting good.

I love how energized I feel now. Becoming mindful of what I eat has kept my mind and body functioning fantastically and I haven’t been sick at all (no colds, nothing!) for over a year!

Daily Rejection

May 5, 2014 — 2 Comments

Our pets have an interesting dynamic.

Chomp, our sweet, numbskull, scaredy-cat-of-a pit bull will be calmly sitting, minding her own business when Dinkleman, the annoying, jealous, douche-kitty decides he is bored and should probably bust out some quick intimidation tactics.

Dink sits approximately a foot and a half from Chomp. He starts glaring in her general direction as she averts her gaze accordingly with her head down. After about a minute of this ritual, Dink will casually walk over to Chompy, who eagerly starts wagging her tail, trying to contain her excitement.

“Hi Little Friend! Are we going to play?”

*POW POW POW, THWAP!!*
As Dink answers her in a whirlwind of punches to the back of her head.

“Oh, ok then… Maybe later…” As lonesome Chompy slowly walks away with her head down, tail still wagging slowly…

Don’t Write Us Off!

May 1, 2014 — Leave a comment

Image

This meme is part of a collective response to a tragic murder of 3 young children with Spinal Muscular Atrophy (SMA). It is suspected that they were suffocated by their own mother. Many are referring to this horrible act as “euthanasia” and a group of us adults with SMA thought that starting an online campaign to share our success stories may prevent something like this from happening again. #SMAachievers

http://www.standard.co.uk/news/crime/mother-arrested-over-the-deaths-of-her-three-disabled-children-at-their-home-in-new-malden-9276884.html

SMA is not a death sentence. Though babies diagnosed with SMA Type I (the most severe type) are generally given a bleak life expectancy, this doesn’t mean they can’t lead fulfilling lives. I know plenty of Type I adults who are living into their 30s, 40s, and even 50s after being told by doctors that they wouldn’t reach adulthood.

SMA does not cause suffering. Feeling sorry for children and adults with SMA is unnecessary. Spinal Muscular Atrophy effects motor neuron production, causing voluntary muscle loss. Affects caused can include weakened leg and arm muscles, difficulty swallowing and breathing, and decreased head/neck control. I was diagnosed at 14 months of age. I never walked, crawled, or even reached far to grab things. I’ve been like this my whole life and do not know  any different. Kids with SMA tend to adapt to their physical inabilities and are known to be bright, positive and social.

Though we are weak in a physical sense, it does not mean that we cannot be ambitious, independent, productive members of society. With current medical advancements, individuals with SMA have increased length and quality of life. Our weakened breathing muscles can be supported with noninvasive ventilation such as Bi-PAP (what I use at night to breathe for me while I sleep) and more invasive ventilation techniques like a tracheostomy + vent. Nutritional needs can be supplemented by tube feedings via G-tube if chewing and swallowing become difficult. Cough Assist machines help “hack up the crap” when experiencing respiratory illness. Power wheelchairs with amazingly sensitive joysticks and/or other adaptive technologies allow mobility with the slightest of movements.

To think that these three children’s lives were cut short, for no other reason than inconvenience and ignorance, is heartbreaking. Although I do not know the exact circumstances of the situation, the motives of the mother seem clear. This family is wealthy, so there weren’t any overwhelming medical expenses. Hell, they could have paid for home care to handle any inconvenience these children could have possibly cause.

The neighbors even commented on how happy the children were. They didn’t appear to be sickly or suffering. Also, the parents weren’t aware of their genetic predisposition to SMA until the first child was diagnosed. At the time, the mother was also pregnant with twins, who were diagnosed shortly after. They do have one healthy child, who’s life was presumably spared because she is able-bodied.

I can see how three small children, newly diagnosed with a physical disability could overwhelm parents. But there were PLENTY of other viable options without “euthanizing” them. Even using that word for a child is sickening. Children with disabilities, unable to legally make their own decisions, are not comparable to sick pets. Promising futures should not be allowed to be stolen for selfish reasons.

The Internet is very, very great… For me!

April 27, 2014 — Leave a comment

Some blame the technological boom and the Internet for much of society’s decline. Luddites say things like, “In my day, we went outside to play, not wasting time online,” or “We would go to the library and get books, not just look everything up on Google.”

On the other hand, I am incredibly thankful for living in a technologically advanced era. A majority of my life is dependent on technology: My power wheelchair (for mobility), Bi-PAP non-invasive ventilation (to rest my breathing muscles as I sleep), and my computer, allowing me to work.

As my abilities to write and draw decrease, I rely on my computer and smartphone more and more. Even typing this blog entry would take waaay more time than necessary if I weren’t able to type quickly on my phone. Of course, there are other alternatives for typing, like on-screen keyboard that can be quite tedious to click each letter, of every word, even with word prediction. There are also dictation programs that I hear great things about… But I’d rather avoid having to say everything I write out loud unless necessary. My co-workers probably appreciate that too 😉

Various software programs allow me to still create, even if my hands don’t. Using the Adobe Illustrator’s pen tool produces better results than my hand ever could anyways 🙂

Even if my disability weren’t a factor, I enjoy the camaraderie the online community provides to those of us who aren’t especially extroverted. It’s much more assuring to know that you can voice your opinion without someone else interrupting or talking over you.

I have met so many great people online as well. I belong to several online forums specifically for people with neuromuscular diseases. Within these communities, individuals can share unique experiences and discuss solutions to topics that improve the health and well being of one another. The friendships and support that flourishes within these groups are invaluable.

I could go on and on, explaining the benefits of technology and the internet in my life, especially considering it’s contribution to meeting the love of my life, keeping in contact with friends and family, and the endless learning opportunities available… To me, the internet (and thus, computers… Though they have been around for quite awhile) is the best thing to happen to those with physical disabilities since the power wheelchair.

We’re Like Pioneers…

April 27, 2014 — 1 Comment

Today, we farmed! Well, we planted a container veggie and herb garden…

Jerry had originally planned on doing a raised-bed garden or two, but decided on the more portable option. There are many trees around the property and thus, many shadows that will upset the plants requiring full sun.

I’ve never been one to get super excited about gardening, but I’ve also never had a garden before. It was surprisingly fun to pick out the seedlings, then learn about each as you plant them.

I anxiously await the delicious arrival of: spinach, kale, Swiss chard, bib lettuce, cherry tomatoes, sweet peas, bell peppers, dill, basil and rosemary.
Now… Onto flowers!!

The Fire Pit is my New Space Heater

April 26, 2014 — Leave a comment

I’ve never been winter’s biggest fan. It’s cold and requires many layers of clothing. The more layers of clothing, the more constricted my movement. My 2 space heaters are my most beloved cold-weather pals. I have a variable cornucopia of light, fluffy blankets, but a personal space heater allows for weightless warmth!

It’s a tricky thing, having only the finest of motor skills… There are countless nuances that can “throw off your groove.”

One of them being layers. While it is true that layering blankets and/or clothing increases warmth and overall comfort/coziness, they can also be heavy (or a good workout) to someone with limited physical mobility. I have all I can do to lift my hand into my mouse; if you add a 0.25oz blanket to that, it’s exhausting to do repeatedly! Then I have to rest in between movements… Inefficient.

With my precious space heaters, I can quickly warm up my hands after arriving to work, as well as keep warm while watching Merlin (our “winter show”) and farting around on my phone.

Now that it’s finally starting to feel like spring, Jerry and I have spent quite a few evenings enjoying our makeshift fire pit. …In our new yard! We moved into our home in late October, so I didn’t get a chance to spend any time in the yard — too cold. This past winter seemed to drag on for eons, especially when there was a whole ‘nother unexplored realm of our brand new home and… It’s covered in snow, and ice… And encased in unrelenting arctic temperatures. …Ahhh, save me, sweet space heater.

Now, the outdoor fire pit is my space heater… My spring/summer night space heater… I like this one better.

Ask Questions.

April 24, 2014 — 1 Comment

How are you choosing to live your life?

To me, life is meant to be a huge learning experience. Some may argue that your life is lived for God or to grow in success… I can dig that, but I choose to live to learn, fight for causes I believe in, and to do what I can to help others.

In the past few years, my priorities have changed. I genuinely believe that the challenges we encounter in life do in fact change a person… Sometimes for the better, other times, if you aren’t careful, these experiences can drag you down. The trick is, to take the hard times as an opportunity to reflect on your life, yourself and role on this planet.

In 2008, the unexpected loss of my best friend’s life was the catalyst for a life change. For over a year, I lost interest in many things: College, other people (excluding those close to me) and the God that I had been brought up to believe in.

It was very difficult to get over the fact that my damn-near perfect, saint of a friend had been taken from this life in such a shitty way, especially when he had spent so much time and energy developing a closer relationship with God. After graduating with a bachelors degree in a promising career field, he chose to devote his life to bringing those within the disabled community closer to Christ.

He never got that chance. He was hit by a car while crossing the street near our shared apartment… On his way to a Christian campus organization event.

This sort of tragedy crumbles the foundation of your life. A God and worldview that kept you safe feels like a sham… A betrayal. No matter how many “God works in mysterious ways” or “He went to Heaven for reasons beyond our capabilities of understanding” explanations I would hear… It still didn’t make sense.

I held onto my religion for awhile as a safety net, but I had already lost much of my previous faith. At first, it wasn’t a conscious decision. I was just angry. Angry at God for allowing this to happen; angry at the campus organization that lured him into their community and thus, the event he died trying to attend.

I continued to lie to myself and others, pretending to still believe in something that was expected by those around me. I held on to the teensiest bit of faith, because a). I was afraid of going to hell, and b). I didn’t want anyone feeling sorry for my fading faith.

Around this time, I had confided in a good friend regarding my faith, sadness, etc. We had similar life experiences and could relate to growing up in Christian, Conservative households in a small town. Abstract thinking was frowned upon and even after attending a few years of college, we had both just been introduced to hardships that made us question everything. We were tired of following arbitrary rules; tired of altering ourselves to please others and conform.

Years later, I am still learning and so is she. We have both found our perfect life partners, who have taught us what it means to live for and with another person. For me, Jerry has opened my eyes to ideas and ways of thinking that were very new to me. He encouraged me to challenge my usual ways of thinking, to research all possible viewpoints, and to CHOOSE what to believe in, as opposed to just following what others tell you and what you’re used to.

Finding your true self is an interesting thing: to transform. I am still the same person I was when it comes to interests, personality, etc. I just see things differently. Instead of focusing on what my given religion and societal norms say, I focus my energy on improving the human experience and the well being of myself and others.

I don’t need to follow a book to tell me how to make proper judgements. The world would be a much better place if the health, happiness and well being of others was prioritized.

Treat others in a kind matter and take care of yourself. Learn. Question everything. Respect other’s opinions and choices. Stand up for what you feel is right. Make informed decisions.

I think the goal is to have passion for your life and everything you do. I want to leave this world knowing that I made a difference in someone’s life, that I improved the world in some small way. I want to do what I love, while also benefiting others (check!)
I want to enjoy life with positive, uplifting people who share the same values and can appreciate each other’s quirks and differences (check!)
I want to soak up every piece of information I can. I want to continuously improve myself. (In progress!)

I can honestly say that I am the happiest I have ever been, because I feel true to myself. I am confident with my life choices and am perfectly content (but not stagnant) with my life. I am proud of who I am… Isn’t that the whole point?

Springtime is Here and Creativity is in Bloom!

April 18, 2014 — Leave a comment

In continuation of my previous post (6 months later…)

I read an article recently that suggested creativity was something that could be practiced and improved upon with anyone… I’ve been trying to make a conscious effort to tap into my creativity by perusing artwork online. I know it’s there! It just seems to manifest into things like stupid daydreams and stewing over useless thought scenarios.

I’ve decide to direct more effort toward completing a portfolio site and “image” for my freelance endeavor. I’m a graphic designer who makes websites and I have neither a logo nor site of my own. Better get on that…

A Master of Disguise!

September 27, 2013 — Leave a comment

Since being a Freshman in college, I’ve been deceiving everyone… I’m not creative.

As a kid, I always enjoyed drawing and coloring, molding Play-Doh, painting with watercolors… Typical artsy stuff. But I also loved Barbies, My Little Ponies and Littlest Pet Shops. Art was always very casual, in between spurts of other interests. I never obsessed over it or really pushed myself to improve. Although, I did see a huge improvement while taking a required drawing class in college.

A lot of my classmates within the Multimedia Digital Art/Graphic Design major were really good, and they were the ones who could draw. I had to work to learn how to be a satisfactory illustrator; through practice and studying logistics. It certainly didn’t come natural.

There were also classmates who were really bad. I didn’t want to be one: one of “those kids.” To hear crickets when it becomes your turn in critique, because your piece is so haphazard and pathetic… No way. So I researched and studied a decent amount more than I’m sure anyone else did. I started projects early, allowing ample time for my trial-and-error approach.

This was the only way for me to really “create” anything aesthetically pleasing, but It worked. I would just mix ‘n match different ideas and elements until the piece looked good. If you study what “looks good” frequently enough, you can easily fake creativity or natural skill in Design.

I did!

“You guys are a f*cking tripod, man!”

September 12, 2013 — 3 Comments

To elaborate a bit on my previous post, I thought I’d further describe two important relationships in my life: My best friends Mike and Matt.

We were together since Freshman year of college. The three of us had attended MDA Summer Camp together since we were kids, but had never really become acquainted until our first week at UW-Whitewater. Mike and I lived in the same dorm building and Matt (along with his adorable service dog, Max) soon moved from his dorm to join us. We were about as tight as any three friends could be. They were among the few, close friends with disabilities that I had. We talked about anything and everything, including topics that were rarely discussed within my able-bodied circles. It was a nice release to have like-minded (and bodied!) friends to talk with about related experiences and challenges.

Mike and I both have Spinal Muscular Atrophy (SMA), a genetic disorder that ultimately results in weakening of the body’s voluntary muscles. Though everyone with SMA progresses differently, there are many commonalities between us. We both developed pneumonia easily, so it was fun to exchange tips on things like, “How to cough most effectively” or “What to drink to help loosen secretions.”

Matt’s disease is in a similar category to SMA, but there are few huge differences. Duchenne Muscular Dystrophy (DMD) progresses much faster and affects the heart muscle. Despite today’s technology, it isn’t uncommon for a young man in his 20s with DMD to die of sudden heart failure.

We were together all of the time. Although we each had our own separate interests and activities to participate in, our free time was generally spent together. Each of us even had remote access to each other’s rooms. I would often return from class to sit and watch TV in Mike’s room while he was away at class or work.

Our Senior year, the three of us decided to get an apartment together. This presented a unique set of challenges, especially in a town whose university touts its superior accessibility for those with disabilities. Finding an apartment suitable for three power wheelchairs, a dog and with the capability to accommodate our special needs proved to be more of a challenge than we had anticipated.

Once we had decided which apartment was the best fit for us, we ended up having to fight the property management on not one, but two issues. Since the majority of apartments near campus were specifically for student housing, it was a common practice to not allow tenants to have dogs. Because Max is a certified service dog, we explained that the “no dog policy” didn’t apply to our living situation. They fought us on the issue; we won. They also challenged our need for automatic doors. Since none of us were physically capable of opening most standard doors, it was important that we had these to enter and exit our apartment and the complex remotely, allowing us to independently attend class. Once again… they fought us, but we won. Mike’s DVR thankfully paid for the two automatic doors and the installation.

The two year period that we spent in that apartment together was one of the greatest times in my life. For the first time in our lives, we were truly independent. No more dorm rules, summers with the parents, or having to call a taxi to transport us to Walmart… We were free. Living within the same walls proved to strengthen our relationship even more. We were no longer merely best friends, we cared for each other (and fought) like we were siblings.

On August 26th, 2008, everything changed.

The beginning of the fall semester was approaching and Mike, being the busy-body he was, was off to attend a picnic welcoming incoming Freshman. Matt was visiting his parents, so I was preparing for a quiet evening at home by myself.

Minutes after Mike’s departure, I heard an extended car horn, tires squealing, and then a crash. Knowing that he had just left, I called his cell phone to find out what the commotion was about.

No answer. I called again… Then again. After the third unanswered call, I heard sirens.

Now that I’m becoming increasingly alarmed, I decided to call our friend Heather, who conveniently lived a block away. At the time, I was “stuck” on my computer in my bedroom. In order to properly use a computer mouse, my wheelchair’s joystick must be swung away from my reach, rendering me immobile until someone moves it back into “driving position.”

Once Heather arrived, she explained that Main Street was blocked off and that the area was riddled with emergency vehicles and police. We both took a deep breath, prepared ourselves, and made our way to the street outside. She wasn’t exaggerating. Within the 10 minutes since the crash, it seemed as though every area police officer and EMT were out on the street. My eyes darted around the chaotic area until they fixed on Mike’s upside down wheelchair in the crosswalk. My heart sank into my stomach as we approached the curb. I’m not exactly sure what went on up until I was speaking with a police officer, explaining that I was his roommate. He explained that Mike was awake and simply complaining of arm pain. Thank God.

After removing his chair from the middle of the street, calling his parents, and evading journalists from our campus paper, The Royal Purple, we followed Mike to the hospital. A few of Mike’s friends, along with his parents, met us there and we waited for hours to hear the news: Mike had several broken bones, but was okay. They were going to Med Flight him to Madison for surgery to repair his broken hip, but we could visit him the next day. We were all allowed to visit him quick before his flight. I teased him, saying “I think from now on I’ll be going first when crossing the street together…”

He would never let me go first when crossing the street. His claim was that because I’m from a small town and he grew up near Milwaukee, he had (literally) more street smarts. Pfft…

His groggy reply in the ER that day was, “I’m going to push you off of a bridge.” Classic.

Heather and I left the hospital in good spirits that night. We were excited to see him again the next day.

The next morning however, Mike’s mom called to inform us that we shouldn’t come visit quite yet. His blood pressure had become abnormal the previous night, so they had to put him in a medically-induced coma. His oxygen levels also dipped for several minutes…

We visited when we could. We would take turns reading the posts people wrote on his Facebook group page. He was never conscious, but I think we just hoped he could hear or even feel us. As one week turned to two, he was showing slight progress. At one point, I remember a celebration for him developing the hiccups. I guess it had something to do with brain function…

September 9th, I awoke from a dream that Mike had passed away. I was so relieved once I realized it was all a dream. I told my friend Sarah about it and we chuckled over it after I replied to Sarah’s notification of a voicemail from Mike’s mom, “Oh no! What if my dream came true!”

I listened to the voicemail… “Hi Lauren. It’s Julie. Call me when you get a chance.”

At this point I was mildly alarmed. I called her back. “Is someone there with you?” was all I heard before the walls crumbled and I started gasping for air…

He had suffered massive brain swelling, and eventually bleeding. He was gone. After two whole weeks of improvements, that was it.

Matt and I finished out the school year, then moved onto a newer, nicer place with Sarah, my current best friend and former aide. Over the next year, we each developed relationships: Sarah met her now-husband, Dave; Matt met his now-wife, Lindsay; and I met my husband, Jerry.

Once our lease ended, we all went our separate ways. Matt and I would chat online often, keeping each other updated on our lives. I had moved 30 miles away with a friend to be closer to Jerry and find work. He and his wife were living in a small town 40 miles away.

On March 23rd, 2011, Matt died at home. Lindsay was there with him… Her last words to him being, “I love you.”

Like many other guys with Duchenne before him, Matt had suffered sudden heart failure. He was 27 years old and left behind a 2-month-old, beautiful son, Landon.

We displayed a photo of Mike and Matt on a memory table at our wedding reception, along with Jerry’s brother, dad, and my grandma. Both of the boys’ parents were in attendance, along with Lindsay and Landon.