- What type of health condition or disability do you have and when were you diagnosed? Briefly describe how your condition affects you.
I was born with a rare condition that occurs in about 1 in 3000 births called Arthrogryposis Multiplex Congenita. I was diagnosed at the age of 2 and since then I have undergone numerous broken bones as a result of falls and surgeries, with years of physical and occupational therapy to obtain more range of motion (ROM) when I was little and now to maintain ROM. My condition causes joint contractures, reduced bone strength and degenerative arthritis. Joints affected by AMC may include the jaw, spine, shoulders, elbows, wrists, fingers, hips, knees, ankles, feet and toes — virtually any and all joints. Mine affects everything but my jaw. It can be lethal in some forms and if it is, it usually results in about 50% of patients passing away in the first year of life. Thankfully that was not the version I have!
- What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
I was born with this so, unfortunately, the news was broken to my parents regarding my diagnosis when I was a baby. But I have to say that I have always admired the enormous strength of those who have had conditions that arise when they are old enough to know what the implications are and what it means to them. I was never able to run up a flight of steps or jump or walk without pain so it’s something that was ingrained as a part of who I am from the time I can remember. Over time, I have come to realize that everyone has something they struggle with on a daily basis, be it physical or mental, or a family situation or financial; mine just happens to be physical!
- Is your condition progressive or is your health stable? If it is progressive, any comments on how you deal with and adapt to the changes?
Recently, I was diagnosed with 5 bulging disks in my spine, scoliosis, and torn rotator cuffs in each shoulder and was advised that it was time to transition from walking to an electric wheelchair. I was very upset at first and felt almost that I had failed. My mom worked tirelessly to make sure that I was mobile and walking and to end up having to use an electric wheelchair at the end felt like I had let her down in some way.
But once I got my chair, I realized I had never known there were flowers planted outside my workplace, and I have worked there for 8 years! It was such a struggle to walk and my focus had to be on the ground and my surroundings to ensure I didn’t fall. Now the wheelchair has saved me so much energy and pain that I don’t know how I got along without it! I thank God that there are so many adaptable items out there for the disabled community to help out with the big and little things, it’s a great time to be alive!
- How did your parents treat your disability growing up? Did they expect the same out of you as your siblings, if you have any? How did they help you overcome thoughts or worries, if any, about limitations?
I have two brothers who are 7 years older than I am, and they are twins. My parents never treated me any differently than they did them. Growing up, my mom and dad always taught me that the word “can’t” is not allowed in my vocabulary. I can do anything anyone else can do, I just maybe have to go at it a different way.
- How did your condition impact your personal relationships through the years? (childhood, teen years, adulthood, etc).
I have always walked with a very noticeable limp and I was around 4 when I stopped noticing that I walked with one. It would take me a second or two to realize why someone may be staring at me or whispering. As a teenager, I had a difficult time since everything is so magnified at that age. It was hard for me to find relationships with people who wouldn’t be scared or embarrassed to walk next to me. I learned that people are usually scared of things they can’t explain or understand. If I could ask them if they had any questions about disability or wanted to share their thoughts, it seemed to break the ice. I met my husband when I was 25 years of age in a neighborhood bar, when I least expected it. The best friendships and relationships have always come when I least expected it and when I was the most open and receptive to those around me.
- Please share some of your interests/hobbies or occupation, if applicable.
I love to travel and see new places. I like crafts and knitting. I used to play the drums in my high school orchestra after 5 years of lessons in grade school, but I haven’t had the time to play since!
I work at a life insurance brokerage in the sales and marketing department running life insurance quotes and assisting agents with marketing and product issues. I guess you can say that I am a professional student as well, since I always have seemed to be in school! My first attempt at a bachelor’s degree was at Neumann College where I did 3 years in biology. I realized that it really wasn’t interesting to me and that was not what I wanted to do with my life, so I went to Immaculata University instead. I graduated Cum Laude with a B.A. in Psychology and am now in the Doctor of Clinical Psychology program (Psy.D.) hoping to graduate and achieve a Certificate of Advanced Proficiency in Neuropsychological Assessment.
- Who has been the biggest influence in your life and why?
My mom has been the biggest influence in my life. I can only hope to have half as much such grace and strength as she has shown in her life.
- Did you ever have a time in your life where your disability caused you to become very ill? How did that time affect you emotionally and describe how it might have strengthened you.
Thanks to God I have been lucky that I have never been seriously ill.
- If you were speaking to a young person today with a disability, what advice would you like to give them? What would you like to tell them about reaching for goals and achieving dreams?
I would tell any young person to never allow themselves or anyone else to determine how far they can make it in this world. They are each the captains of their own ship and if they set the course to their goals, they will make it! It’s amazing how the power of words can work for you. I have found that if you say something out loud and believe in it wholeheartedly, it will come to fruition. Make your dreams your mantra and spend time thinking of yourself achieving that goal or dream. It will become a part of your daily routine unconsciously and you will achieve it eventually!
- How did your disability inspire you to greater heights or motivate you to work harder?
Being a woman with a disability, I have found that I have to work twice as hard as the next person to prove myself and my capabilities in our society. But the more I have been able to achieve, the more I want to try and achieve more! I have found if you break things down into smaller sections, then larger goals don’t seem as looming and overwhelming. I would like to help others who have disabilities see that there are no boundaries when it comes to their future!
- What is the most important factor that has helped you overcome challenges?
My determination would be what keeps me going every day. I am stubborn and find that my biggest competitor is usually myself! I enjoy challenges and feel good about myself when I am able to rise to the occasion. If you look at a problem and say to yourself “there is a solution to this,” you will always find the answer!
- Do you live by a certain “motto” (saying)?
Go big or go home!
- Is there anything else you would like you share about yourself?
I am a firm believer in living life as if it was your last day on earth. You will always regret the things you didn’t get a chance to do or were afraid to try in case you would fail, but you never regret the things you have done!