Crossroads

I was going to write an end-of-decade wrap-up last week. I was, I swear. Then I kept procrastinating, and procrastinating, and procrastinating, and next thing I know, it’s a new decade.

Oops.

I have to admit, I am not a big fan of contrived wrap-up posts. I tend to write only when inspired, which is on average about once per month. I don’t like to write just to write. But I had to at least acknowledge the conclusion of the 2010s. The decade was only about a third of my life, but for all intents and purposes, it was a lifetime.

At no point in the 2010s was I asymptomatic. It’s hard to wrap my mind around this fact, but I dealt with symptoms of my disease for the entire decade.

I can no longer remember what it was like to have full mobility, with no second thoughts about walking or running or climbing stairs. I don’t remember what it’s like to live spontaneously. So much has changed in just ten years: Continue reading “Crossroads”

Pete’s Legacy

The notification that I had been dreading for five years popped up on my phone Monday afternoon.

Pete Frates, ALS advocate who helped turn the ALS Ice Bucket Challenge into a worldwide phenomenon, had passed away.

This news did not come as a surprise. But regardless of whether or not it was expected, the news pierced my soul. It hurt. I felt like I had lost a good friend, even though I never met him.

I had followed Pete’s story ever since I first learned about the ALS Ice Bucket Challenge in the summer of 2014. Even as his physical condition deteriorated over the years, his spirit remained defiant. His perseverance through hardship was the example I needed during an incredibly difficult time in my life.

Continue reading “Pete’s Legacy”

Unsung Heroes

November was National Family Caregivers month. Which means, of course, that I waited until December to talk about it! But better late than never. It’s an important topic.

The premise of the month is to celebrate those who care for loved ones in need of daily help. The person may be aging, disabled, or some combination of the two.

It is so great that there is a month dedicated to caregivers. They are deserving of the recongition, as caregiving truly is a sacrifice of time, energy, and emotion. When you hear of someone living with a disease or disability, people often think of the person living it. But it has an impact on everyone, including friends and family. Especially family.

Continue reading “Unsung Heroes”

A Sense of Urgency

I reached a personal goal the other day! I finished writing the end of Part One of my memoir. (It will be a two-part book).

Only downside? My goal was to get this far by September….2018. Oops.

I am on schedule, give or take a year. Ok, ok, so it happened a little slower than I had hoped, but I had a perfectly good reason for falling off. I was busy! Busy with my job, attending conferences, going to doctor’s appointments, buying a new wheelchair, fighting insurance, getting my septum un-deviated. Although mostly it was the job. It’s a lot of work, but I enjoy what I am doing so I have no complaints there. It’s just that at the end of the day, I am usually too fried to want to write.

In the last few months, I have maximized my down time on weekends to catch up on writing. This has worked out much better than trying to write at night during the week. I am more productive writing in two days than I would have been if I forced myself to write a few hundred words each day.

Continue reading “A Sense of Urgency”

The 2019 Ralph and Theresa Anselmo Resilience Award

Hi everyone,

Thank you so much to everyone who donated last year to the first-ever Ralph and Theresa Anselmo Resilience Award. The response was overwhelming! I had hoped to fund one award and raised enough to fund two. I am so grateful for everyone’s support. It means so much to my family and I.

If you would like to learn more about last year’s recipients, Hannah and Katherine, Northeastern did a great job sharing their stories:

https://news.northeastern.edu/2018/12/10/heres-what-one-northeastern-graduate-is-doing-to-help-students-handle-their-medical-expenses/
I am happy to announce that the award is coming back for Year 2! Here is a link to the GoFundMe page: https://www.gofundme.com/f/2019-anselmo-family-award

This year my goal is to fund two $1,000 awards for students registered with the Northeastern University Disability Resource Center. Any amount of support would be greatly appreciated, even if it’s just sharing the GoFundMe link.

I ended up raising over $2,800 last year, and the remaining $800 will be allocated towards this year’s awards. If I raise more than my goal, I will allocate it towards next year. Either way, your donation will be put to good use!

With your support, we have already been able to positively impact the lives of two students. I hope to make this an annual award that can help students for years to come!

For those learning about the award for the first time, here is the description:

The Ralph and Theresa Anselmo Resilience Award is an award that I have created at Northeastern University (my alma mater) in honor of my parents, Ralph and Terry.

The goal of this annual award is to provide monetary assistance to a student (or students) registered with Northeastern’s Disability Resource Center  (DRC). Although when I attended Northeastern I did not experience any of the symptoms of the muscle disease that I am living with today, it is a resource I would have used had the timing been different. I have met a handful of students registered with the DRC over the years, and they are some of the kindest, most driven students I have ever met.

As someone living with a progressive disability, I have benefitted from the support of others who have enabled me to achieve my goals and dreams, which included going back to school full-time to get my MBA. Many people have helped me along this journey, none more so than my parents.

My mom and dad have been instrumental in empowering me to succeed, even as my physical condition has deteriorated. They provide me assistance and support without ever asking for anything in return. My resilience today in facing my disease would not be possible without their help.

In the spirit of the example set by my parents, I want to help others achieve their goals and dreams. Specifically, I want to help Northeastern students registered with the DRC. The intent of the award is to provide a little more peace of mind to the recipient, whether it’s helping to purchase a piece of adaptive equipment they may need for the classroom, or putting the award towards books or room and board. How they decide to use the funds is at their discretion.

I am a firm believer that anyone of any ability level can do anything they set their mind to. However, we are only as successful, we are only as strong, as our support system around us.

Without my parents, I wouldn’t be where I am today. It is an honor to name this award after them!

Award Parameters:

It is a one-time award of $1,000 each for two students. Any funds raised above and beyond the goal will go towards future awards. I will keep everyone up to date on how the funds are allocated.

Eligibility:

–          Any Northeastern sophomore, middler or junior year student with a GPA above 2.0.

–          Must be registered with the Disability Resource Center.

–          Student must provide a statement of what they plan to do with the award and why it will help them on their college journey.

How the funds can be used:

–          The award can be used on anything school-related, such as: tuition, an assistive technology device, books or room and board.

I will follow up once the award has been announced. Thank you in advance to everyone for your support!

 

 

Between Then and Now

It’s been a while since my last book update.

I am happy to say that I am still making progress, albeit slowly. Working full-time only affords me limited energy at the end of the day to type coherent sentences, but it is progress nonetheless. In the beginning, I was keeping track of how many pages I had written. Although by now I’ve lost track, I am well over 300 at this point.

Instead of tracking page count, the way I measure my writing progress is by where I am in my story. Right now, I am in late 2012, right on the cusp of the most emotional two months of my life. January and February 2013 was a defining period that changed the trajectory of my life forever. Even now, it still elicits mixed emotions. The pain of loss. The frustration of dealing with a rapidly-weakening body. The nostalgia of living and working in Boston. The satisfaction of realizing just how much I’ve grown since that time. Continue reading “Between Then and Now”

Back to Zero

In the back of my mind is an internal clock, one that tracks the time that has elapsed since my last fall. Well, it doesn’t count the exact days (it’s not that good), but it knows that my last fall was on the Fourth of July 2018, a little more than six months ago. I remember that day vividly. I was in North Carolina visiting my sister, and after watching the fireworks on TV, I retired for the night. As I was about to climb into bed, my right knee bumped into the box spring, causing me to lose my balance and crumple to the floor. I was shaken up but otherwise unhurt.

To go six months without a fall, given my advanced weakness, is a miracle in itself. But I knew my good fortune wouldn’t last, that eventually the clock would reset one of these days, in sudden and violent fashion.

That day was Thursday.

Continue reading “Back to Zero”