Lisa

Hello! I’m Lisa and I was born with bilateral above elbow limb differences (BAE).  I do have an elbow joint in my left arm; however, it is fused. The fusion was from birth rather than being a surgical one.  I also have bilateral proximal femoral focal deficiency (PFFD) resulting in a GIGANTIC height of 3 feet, 10 inches. (Hopefully, you can infer that I have a VERY DRY AND WARPED sense of humor.)

I have been an I-CAN mentor almost from the beginning.  I first met Bill and Joyce when I was living and working in Galveston, TX.  We met over the phone, and shortly after that meeting, they drove to Galveston for a weekend.  Not only was that our first face to face meeting, but Bill made a video of me doing things like brushing my teeth, applying make-up, making the bed, driving, etc.  He and Joyce used the video to share with parents, kids, medical professionals, etc. that a person with limb differences could live independently, hold down a full time job, etc. with and without the use of prosthetics.

When Bill started I-CAN, he asked me if I wanted to be a mentor.  I readily agreed!  I didn’t have a computer at home then.  Bill sent me the digest version to my computer at work.  I would read the posts that interested me and responded to those that contained questions or dealt with an issue about which I had strong feelings.  I would come to work early, stay late, or eat lunch at my desk so I could send responses without interfering with my work.  I FINALLY got a computer at home so I now receive all the I-CAN posts and try to respond to as many as possible.  I also served as host of the first I-CAN meeting in Birmingham, AL back in 1997.

I wanted to be a mentor because I wanted parents and kids to be able to ask questions, express true feelings e. g. anger, bewilderment, etc. to people who had “been there, done that.”  My parents and I had little to no experience with other parents and kids with limb differences EXCEPT when we traveled to the Shriner’s Hospital in Greenville, South Carolina. I was a patient there from the time I was a few months old until I was 18 years old.

Growing up, my parents treated me just like my brother (who has no disability).  I had chores to do, had to do all my homework at the same time my classmates did, etc.  My parents ALWAYS ALLOWED me to do ALL that I was capable of doing.  I’m sure that this was hard on them at times especially when I encountered difficulty, fell down, etc.  I’m also sure that they were afraid for me ESPECIALLY when I told them I was going to California to do an internship, moving to New Orleans for my first job, etc.  They NEVER let me see their fear, however, and ALWAYS supported me in my goals, and gave me TONS of love, encouragement, and support!  For that unconditional love and support, I will ALWAYS be ETERNALLY GRATEFUL!

When I was young, the name of the game was “make the kid look as normal as possible” regardless of how well you did or did not function!  I was fitted with my first arm at 18 months old.  I was given a functional hook from the very beginning.  I got my second arm just prior to entering first grade.  I wore my arms EVERYWHERE AND MOST OF THE TIME back then.  The doctors even got the wild idea of making me taller, using artificial legs.  It was not a fun experience trying to walk with artificial arms and legs.  They were hot, heavy, and seriously limited my mobility and ability to feel things when wearing them.  I think I MUST have resembled some version of Frankenstein’s bride!  I opted NOT to be tall after a few too many falls with arms going one way, legs going another way, and me going a third separate direction.

At about 25 years old, I decided to stop wearing my arms (known as Harold and Irma) ALL the time.  I use them to do what they help me do like shaving my legs, putting on make-up, putting on knee high hose, etc.  I now wear them about 15 to 30 minutes at most each day depending on what I need to do.  I now use a universal quad cuff for writing and eating.  I also use my toes (mostly at home because of my height) for writing, embroidery, opening mail, picking up stuff from the floor, etc.  I MUCH PREFER the “au naturale” look vs. wearing prostheses ALL the time.

Using a prosthesis is a VERY INDIVIDUAL decision!  I think people should be taught how to perform tasks both with and without the use of a prosthesis. I also think that if a prosthesis is introduced to a child, the child needs to feel that he/she is 100 % OKAY in appearance whether the prosthesis is used or not!  Once this has been accomplished, the child has to decide what he/she feels is BEST! I do NOT FAVOR fitting infants even with a passive prosthesis. Infants DO NOT have the cognitive development to use the hands/fingers they were born with; therefore, I feel that it is LUDICROUS to put a prosthesis on an infant – even a passive one.  Please understand that this is MY PERSONAL opinion based upon my life experiences.  Other mentors – with arm and leg differences – have differing opinions based upon their experiences.  Herein, however, lies the beauty of the I-CAN list – different strokes for different folks as well as a WIDE range of opinions and experiences that I-CAN kids and parents can draw from in order to make WELL-INFORMED CHOICES!

Please feel free to contact to contact me via e-mail with questions, concerns, etc. that you may have.  I’D LOVE TO HEAR FROM YOU!