Boston

As I write this, I am back home in comfortable, quiet Connecticut. But my mind is elsewhere.

Recently, I had the opportunity to spend two weeks in Boston, my adopted home for 12 of my 32 years. To say that I was excited to visit the city for an extended period of time is an understatement. I was thrilled.

My years in Boston, from 2004-2016, were the most eventful years of my life. They formed me into who I am today.

Boston was where I went to college, worked for six years, and got my MBA.

It was where I first noticed symptoms of the muscle disease that would take over my life.

It was where I made lifelong friends and lost a dear friend.

It was where I fell many, many times.

It was where I questioned my very existence and the point of this frustrating, maddening hand I was dealt.

Most important, it was where I learned to pick up the pieces of my life and start over again.

Boston is where I grew up.

Continue reading “Boston”

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!

 

 

Paying It Forward

Blogosphere,

I have some exciting news! I am happy to announce that I am raising money for an award at Northeastern University, my alma mater, called the Ralph and Theresa Anselmo Resilience Award, named after my parents. The award – which may end up being two awards when all is said and done – will be given to a sophomore, middler or junior-year student registered with Northeastern’s Disability Resource Center (DRC).

You can find a link to the GoFundMe page here. Any contribution is greatly appreciated! Even if you are unable to donate, sharing the link with your family and friends would mean the world to me.

At this point, you probably have a few questions:

Continue reading “Paying It Forward”

Storyteller

One of the greatest benefits of business school, besides the education of course, has been my evolution as a public speaker. When I started the program almost a year and a half ago, I was terrified to stand in front of an audience. I was fearful that my voice would crack out of nervousness or my mind would go completely blank. It also doesn’t help that I can’t stand for long periods of time anymore. My first presentation in school went about as awful as you’d expect – my mind went blank and I had to read word for word off the slide. It was painful to watch.

Thankfully, for both the audience and for myself, things have changed dramatically. I not only have improved my presentation skills, but I also have caught the speaking bug. Although I still get nervous and would rather not present on business topics, I can hold my own in front of my classmates. Part of my improvement has been due to public speaking classes I’ve taken at school. I’ve learned techniques and tips that have been extremely helpful in structuring my presentation and in controlling my body language.

However, the greatest reason for my success has been outside of the classroom. The opportunities I have had to share my patient story is what has truly gotten me over “the hump”. I am at my most confident when I am sharing my story with others, and talking about my journey, specifically what it’s like to go from ability to disability. After all, who isn’t comfortable talking about themselves?

I mean that jokingly of course. The answer is me. I am not naturally someone who likes to be the center of attention, under a spotlight both literally and figuratively. The first time I spoke about my condition in front of an audience, I thought I was going to have a panic attack and throw up on stage. Now though, I can recite my story almost without thinking. What I realized is that my journey these last eight years is so ingrained in my soul that it is part of who I am. There is no memorization required; I just have to tell it like it is.

Over the last three years I have had wonderful opportunities to speak and share my story in front of various audiences. In April 2013 I was invited to the Jain Foundation conference in Washington D.C., where I talked about my experience with the disease and my participation in the clinical outcome study sponsored by the foundation. Thankfully I didn’t throw up on stage, especially since it was videotaped!

A year and a half later, in November 2014, I told my patient story at a fundraiser I helped organize called Strength, Science and Stories of Inspiration. That night was when I realized I was onto something special. There had to have been 200 people in the audience, including friends and my parents. Although nervous, I had control of the room from the start and it was a great success. More importantly, it made me realize that not only was it not that hard to share my story, but that my story was having an impact on people.

That belief was solidified a few weeks later, when I gave an “Eagle Talk” – the BC MBA program’s version of a TED talk. In front of 50-60 classmates and professors, I gave a 25-minute presentation that was extremely well-received. The talk also had the added benefit of finally putting me at ease with my classmates. I had been looking for a way to tell my friends what it was like to walk in my shoes, since this was the first time I had met a new group of people while disabled. Everyone else I knew – family, friends and coworkers – saw me transition from ability to disability. They knew me when I could run and climb stairs, only to see me weaken before their eyes over the next few years. This talk helped to put my life before business school into context for my new group of friends. I wanted them to know I was not always this way, but that I am also not ashamed of who I am.

I not only find it exhilarating to inspire an audience, I also like being able to tell my story on my own terms. When I speak, there is no editor, no filter between what I want to say and what is actually said. It is not written on paper for people to interpret or misinterpret. My story comes right from the source, and the audience can see the emotion and the vulnerability firsthand.

At the same time I believe, and make clear in my talks, that my story is not any more inspirational than the next person’s. I don’t have a monopoly on inspiration. There are countless people who are dealing with far worse hands and who are inspirations to me every day. Instead, I like to think of my speeches as helping to make others aware that any ordinary person has what it takes to overcome adversity and to fight through setbacks. If I can do it, anyone can. That is where I derive my greatest enjoyment, in helping others to realize this fact. I don’t share my story to have someone come away from it saying “Oh he’s so brave!“, as if it takes a great deal of courage to get up in the morning and try to live a semblance of a normal life despite my condition.

But I digress. Since that two-week stretch in November 2014, I have been looking for more opportunities to speak to a wider audience. I’ve given several presentations in class where I’ve been able to put my newfound confidence to work, but I’ve been yearning to go back to what has gotten me to this point – sharing my story and offering advice. It’s been over a year since I’ve given a talk, and I have to say I miss it a lot.

The speaking bug has also been gnawing at me this year as I search for a job. I keep asking myself, what do I really want to accomplish in my career? I realize now that whatever I do, speaking to crowds has to be a part of my life. Maybe I should be a public speaker – I’ve certainly considered it. It seemed inconceivable two years ago, but now it feels like a real possibility.

Over the past few months, in addition to class work and job hunting, I have been working hard to find opportunities to speak, which is why I am happy to say that more talks are in the works!

Without further ado, here is my schedule these next few months:

February 24th – I am so excited about this – I will be speaking to students at Northwest Catholic High School in my hometown of West Hartford, Connecticut. As part of their leadership curriculum, I will be sharing my story, and time permitting, sharing advice and the wisdom that I’ve accumulated over the last eight years. I’ve always wanted to convert my story into a talk where I can motivate and give others practical advice when dealing with adversity, and this is that opportunity!

February 29th – Five days later, I will speak at the Massachusetts State House for Rare Disease Day 2016. I was supposed to speak last year but the weather thwarted those plans. I am determined to be there this year, even if I have to sleep in the State House to do it. (On second thought, I am a bit of a germophobe so that may not be a good idea.)

March 24th – I will be on a panel at Northeastern, talking to students with disabilities about job hunting and the experience of declaring one’s disability in the job hunting process, something I have struggled with personally. I am hopeful and confident that I will be able to ease their concerns and show them that it can be done successfully, even if it is an added nuisance.

April 3rd – The third annual Strength, Science and Stories of Inspiration event will be held, location TBD. Although I will not be speaking this time (besides a short introduction), it is a great event that I hope you all can attend! More details to come once I know more….

May 29th – Still somewhat tentative, but I have been invited to speak at the Jain Foundation’s patient conference in Dallas. I’ve never been to Texas so this should be a fun time! It will be great to meet other patients with my disease. Any time you are dealing with something like a rare disease, it is imperative to meet others who are going through what you are dealing with on a daily basis. There is a level of unspoken understanding that is a huge comfort. The staff at the foundation are also wonderful people who I’ll be happy to see again!

So that’s it for now – I am open to other opportunities as they come about. As I’ve learned, oftentimes these opportunities pop up out of nowhere. It’s going to be a busy next few months, but at least it will be worthwhile. If any of them get videotaped I’ll be sure to share them!

 

What If?

Someone asked me the other day if I had studied abroad while at Northeastern. I told them I had the opportunity in my junior year but I turned it down. I had no desire to leave Boston or incur extra expenses for my parents, who were paying for my education at the time. I wasn’t much of a traveler; instead I enjoyed hanging out with friends and living in the city.

After that conversation, something began gnawing at me. What if I had known? What if I knew the challenges I would face after college?

I was diagnosed with my disease in high school, but I didn’t grasp its magnitude. I had no symptoms, so I didn’t find it necessary to do any research. I had no inclination that it would manifest so quickly. In retrospect, this casual attitude towards my condition was both a blessing and a curse.

If I knew the struggles I would experience after graduation, would I have traveled more? If that was the only decision I would be faced with, then absolutely. I would have taken the opportunity to travel somewhere – Europe, Australia, maybe even South America. I was fully-able in college, energetic and without limitations. Even though I didn’t have much money at the time, I would have found a way to explore the world while I still could. I would have appreciated that I had a narrow window of opportunity and I would have taken advantage of my mobility. Under these circumstances, I certainly wish I had traveled more.

But I don’t feel regret, mainly because I know that advanced knowledge of my disease would have had far-reaching ramifications. Had I known my condition, had I truly understood that seven years after graduation I would be falling regularly, and that I would have to purchase a scooter to travel long distances, I would have been crushed by the knowledge. It would have been too much for me to deal with while trying to remain a normal, fun-loving college student. College is the last period in your life before the real world takes away your remaining innocence. Life shouldn’t beat you down so soon.

Considering the emotional struggle I encountered when my symptoms manifested, I don’t think I would have handled this foresight very well while still in school. I would have felt like a ticking time bomb, always wondering if an ache or a pain or a feeling of weakness would be the start of my descent into disability. Perhaps I would have been so paranoid and depressed that I wouldn’t have found the enjoyment in traveling abroad.

On the other hand, maybe I would have enjoyed each day even more, and taken the opposite approach. I could have been galvanized by my impending limitations. The truth is I have no idea, and I never will have any idea. I shouldn’t go back and wonder what could have been, because the past is past. I lived the best I could with the information I had available at the time. Could I have done some more research on my disease? Of course, although it probably would have exposed me earlier to the dark reality I would soon face. Being naive isn’t always so bad.

At the end of the day, I take comfort in the knowledge that everything seems to have turned out the way it was supposed to. Had anything in my past occurred differently – earlier understanding of my condition, traveling abroad when I had the opportunity – I don’t think the sequence of events would have taken place that have put me in the situation I am in today. Any change in my mix of frustration, sadness, pain, and ultimately, determination, could have led me to a much different future. Maybe I wouldn’t have been as motivated as I am today, or I might have put myself in a situation where I fell and got hurt. Maybe I wouldn’t be walking right now. Looking in the past is counter-productive. It is trying to change something that cannot, under any circumstances, be changed. I have to be content with how things turned out, and I am.

Besides, the greatest travels are the ones still ahead of me, greater than any semester-long trip across the ocean. I do not know my ultimate destination, but I know that I am on the road less traveled.