The road to independence

Posted by Elizabeth Forst in Life After Paralysis on August 25, 2016

Many people have asked me how I independently create this blog, use my laptop computer, answer phone calls or send text messages. As a quadriplegic, I cannot use my arms or hands to type on a computer, push buttons on my phone or in my apartment to turn on lights, TV etc. The things that are often take for granted as an able-bodied person. However, the beauty of today's technological advances make it easier for the disability community to still enjoy such activities that can prove to be a challenge, especially that of the quadriplegic with physical limitations. I still have interests on the Internet as you might, and I still need to communicate with the outside world. So how does one do this with limited use of your arms?

Enter my saving grace – Jill Baldessari, head of the technology department at Craig Hospital. Jill and her team's main focus is to expose those living with paralysis to various technologies as they reenter their life after rehabbing at Craig with a greater sense of independence, especially from the new digs of a wheelchair. One such crucial device is a mouthpiece sip -n- puff box called the QuadJoy, controlled with various pressure gradients of my own air. It is a 4" x 4" box that is attached to a metal arm clamped on a table sitting next to my computer. The box has a plastic movable straw like apparatus that rotates up down and left right, moved by either my mouth or chin. At the end of the straw, there is a hollow space in which I can sip and puff air, creating commands as if you were tapping or pushing a button on your keyboard with your hand. It is a high-tech device that allows me to use my computer seamlessly, efficiently and quickly.

Wrapped around the rod iron arm is a microphone dictation system that connects with Dragon Dictate software installed on my Mac laptop. Upon hearing the words "wake up", the Dragon software activates on my computer allowing me to verbally dictate various commands, whether it is writing this blog, sending a text message through my computer, speaking emails and or perusing the various websites such as Facebook, Twitter, Amazon, YouTube or whatever fancies my interest at the moment. When I am done with the activity described above, I simply say "go to sleep" and the software system automatically turns off. I can open my iTunes and play music, create beautiful iBooks with photographs and taglines and also control all components of a Mac laptop. I can pay bills online, approve caregiver hours, create my daily schedule and also answer incoming phone calls. Further, not only does it provide access to the outside world but also a major part of my safety as if I ever needed to contact someone, i.e. 911, a local family member or neighbor.

Another essential component of living an independent lifestyle is the ability to control my television. Again with the advancement of technology on my sip and puff wheelchair, I have been trained on how to sip and puff a command on my wheelchair utilizing my driving straw to turn my television on/ off, scroll through channels and even order movies on demand. With the assistance from the technology department at Craig Hospital and the representatives from quantum – my wheelchair company – these tasks allow me to independently manage my in-home televisions. It is quite easy and truly amazing to not depend on others for such basic in-home tasks.

Lastly, I am a lover of music and as before my accident, appreciate the sound of music within my household while hanging in my apartment alone, socializing with friends and family or even hosting a dinner party.Amazon's Echo and respective Alexa speaker dictation program allows me to not only listen to my personal music and playlists via a verbal dictation system, but also allows me to hear the news, weather, create shopping lists and even here jokes if I am so inclined. Alexa' s technology allows me to ask questions about current events, entertainment news and even basic things like mathematical calculations, curious questions and a whole slew of other pertinent information. Most importantly and of recent, Alexa, in combination with Phillips Hue or the Insteon automated lighting controls, I can verbally dictate turning lights on in any room of my apartment. All she requires is a simple verbal command saying "Alexa", she immediately comes alive and facilitates whatever it might be I am interested at the moment providing one step closer to my life of independence.

One of the most debilitating aspects of losing your entire physical body is the inability to live an independent lifestyle. It is probably the most crushing aspect of living the life of a quadriplegic. For me, independence is and still remains everything. So it is with these amazing advancements in technology that have brought back major aspects of my independence allowing me to create, control and live freely without asking for others assistance as I do on a daily basis for almost everything else. I'm ever so grateful to Craig Hospital's technology department, and various representatives from Quantum that has provided me with such freedom. I encourage those in this community to search out similar opportunistic individuals and research advanced technology so that we may all regain a sense of independence as much as possible.

Keep on keeping on,

Elizabeth/EB Forst

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.