Today I’m excited to host a guest post by my friend Elizabeth Stinson. Elizabeth is an amazing young woman, currently doing her grad work in microbiology at the University of Pittsburgh.
“No, I can do it ALL. BY. MY. SELF! I do not need your help.” How many times have you thought this or heard your child say it, whether you/they have a limb difference or not? I think it is completely normal to want to be self-reliant and not ask for help. When I was growing up, though, it went beyond that for me. I felt I needed to prove something not only to myself, but to the world.
First, let me introduce myself. My name is Elizabeth and I am twenty-two years old.
I was born with a left radial clubbed hand (my wrist was bent so my hand looked like an ‘L’) and I do not have a thumb on my left hand. I also have an incomplete wrist, elbow, shoulder, and clavicle. I had seven surgeries between the ages of ten and fourteen to straighten my wrist and lengthen my forearm to increase function through the use of an external fixator.
I no longer view myself as being deficient in any way, but that is not how many people saw me when I was younger and it affected how I viewed myself for a long time. In elementary school we had those faucets were you had to press down HARD to turn it on and as soon as you let go the water turned off. While I am sure this was quite economical, it was especially difficult for me. I could wash my left hand, but I did not have enough strength to push down and wash my right. The teachers quickly found out and from then on someone always had to go to the bathroom with me. While they had good intentions and were only trying to help, that was not how it felt to me. I was the only one that had to have a bathroom buddy and I felt singled out, so I tried not to go to the bathroom at school.
In fourth grade we were taught how to type ‘correctly’ in computer class. I could not (and still cannot) place my hands on the keyboard ‘properly’: thumbs on the space bar and fingers on the middle row of keys, so my teacher decided I should be put in a special group. In the special group it did not matter how fast I typed, if I memorized the placement of the keys, or how accurately I typed; I used a different program and was the only one in this ‘special’ group. While I am sure she had good intentions she chose not to challenge me because I could not do things the ‘correct’ way.
These are just a couple examples of adults who I am sure only wanted to help but ended up making me feel different, unworthy, isolated, deficient, incapable, inadequate, weak, helpless, frail, lesser than, and alone. These well-meaning adults made me view receiving ‘help’ as something that made me weak and stand out. (I am not saying that offering help to a limb different child will cause such negative emotions; it was the way the ‘help’ was ‘offered’ to me that evoked such emotions.) The school could have installed new faucets or placed hand sanitizer in the bathroom. The computer teacher could have allowed me to type my way and realized that I typed just as fast and accurate as the other students; I just did it my way. As I was growing up there were multiple situations like this and the negative feelings compounded. I would snap at anyone who offered to help me because I thought they saw me as weak or unable, not that they had a good heart, and I almost never asked for help, even from my parents. When adults would see me struggling they would call me stubborn for not asking and refusing help, which only made me that much more determined NOT to ask for help. I felt I needed to prove to the world that I could do what any ‘normal’ person could do, and more; I needed to do it better, faster, etc.
This slowly started to change around the time I started the surgeries because I was the one making decisions about my body and having an external fixator drilled into your arm kind of forces you to ask for help on a daily basis. While I hated asking for help, I started to realize I was not a super hero, I did not need to prove anything to anyone, and that asking for help can make you a stronger person.
I still have my days where I get frustrated that I cannot do a push up ‘correctly’ or that it takes me five trips to the car to get all the groceries when it is cold because my left arm is not strong enough to carry most things. I still do not like asking for help in a buffet line or opening a spaghetti jar because those are the things ‘normal’ people can do, but I put aside my pride and ask for help anyway (most of the time). I think having a limb difference makes you keenly aware of what your limitations are and when you need to ask for help. And while this may seem like a burden, I think it makes us stronger and more humble people because one of the hardest things in life is learning when to ask for help.
And then accepting it.
Awesome post Elizabeth! I’m almost twice your age and I’m still working on being comfortable asking for/ accepting help. One thing I try to remember is that it isn’t always about me. People feel good when they are able to help. Remembering this gets me to accept it more often.
Thank you for sharing your story. My baby is 3 months old and missing her radius, 4 fingers, and part of her hand. Stories like yours give me strength. She is going to be fine. I can’t always open the spaghetti sauce either. And I avoid buffets just because! 😉
We have similar babies! My son is 4 months,is missing a radius & thumb. His ulna is extremely short & his hand is turned inwards.
Elizabeth: Beautifully written. I also have a limb difference, and have noticed that, in my adult years, many people will ask me if I “need a hand” (god, I love how ironic that question is) when they see that I’m about to do something… or ESPECIALLY when they see me attempting something my own way and that way is awkward looking.
My answer for a long time has been, “Thanks. I probably don’t need help, but I’ll let you know if I do.” That does TWO things: First, it allows me to doggedly try my very best at opening that silly bag of chips or carrying x, y, and z up the stairs or what have you… and THEN if I find that I’ve gotten myself in a situation that is really making me struggle to the point that going and fetching whatever tool I need to get the job done is more difficult than asking the person next to me, I have that option open. “You know, I WILL use your help with this actually. Thank you.” Everyone’s self-esteem is intact, and the other person feels nice for doing their good deed for the day.
One last thing: I try to be very sensitive of this with other people (especially kids, since I’m a teacher myself) and like to offer help IF it is needed. “Let me know IF you need my help. I’m here.”
Loved your post, Elizabeth. Honest and thought-provoking. 🙂
You mention your a teacher how do you deal with the kids and the nasty words an names I am 13 and have one hand so are going through the stage were its getting tougher to cope I know there only young and don’t understand but you must get the days when you can’t be bothered
I can identify with your comments but my issues were limited.
I grew up in a small town and just grew up with just about everyone who went on to be in my class.
Strangely the only boy who called me by a nickname (One Armed Bandit) went on to be just lovely to me in later years.
Although I gave him The Look whenever he used the term he continued to make the remark for some time.
Ironically I think it eventually made me more resilient.
Maybe try a little selective deafness.
Angie: Exactly 🙂
Melanie: If you ever have any questions about how I dealt with bullying, how I tie my shoes, dating, riding a bike, ect I am more than happy to answer them. My email is firstname.lastname@example.org And you are absolutely right, your daughter will be fine, in fact she will be more than fine. She will thrive and become a beautiful, strong, independent, confident young woman, your attitude is very important so keep up the good work!
Kristy: I love your answer and how you approach it, it definitely provides the best of both worlds and how you offer help to kids is even better! That is the PERFECT way to approach it and I am glad you enjoyed my post 🙂
Elizabeth, if you wrote a book on the things you mentioned, I would totally buy it! My little 4 month old has nearly the same challenges! I’m so glad to know that he will be fine! Thanks for the courage.
I have a daughter with a completely paralyzed left arm and hand from a ski injury. She is now 17 and I found your post so insightful. I understand her “stubbornness” more now.
Elly: I am glad I could help 🙂
Ellly: I am glad I could help 🙂
Very well said Elizabeth! Your observations about accepting help, apply to all of us at some time or another. I’m seeing this attitude in my aging parents who need help but don’t want to ask for it. Asking for help not makes us stronger but allows others to serve in a way they wouldn’t be able to otherwise. It’s a win win. I appreciate your perspective on how offering to help can make others feel deficient and will be putting that in my character building files for use. Thanks for sharing!
Sentence correction: Asking for help not “only” makes us strong….
Suzanne: You’re welcome!
I can identify with so many aspects of Elizabeth’s post and the ensuing comments.
I am without most of my right forearm from birth as a result of amniotic banding (constriction).
I used to automatically say ‘No thank you’ to EVERY offer of help.
My Dad didn’t challenge me on it.He understood me.
I even used to refuse help where a person with 3 hands would have been challenged!
Then a friend kindly pointed out to me when I was about 19 ‘You know, you don’t always have to say ‘No’.
That made me stop and think. From then on I have been more likely to accept help but am still rather pig headed much of the time.
I am so proud to know you Elizabeth. If Julia turns out half as well as you have I will consider my job a job well done. (((hugs)))
Aww thanks Melissa! I know she will you are a great mom and you have three amazing kids 🙂
Just a few comments about ways I have been able to help myself.
I am without most of my right forearm as a result of amniotic banding (constriction).
My affected arm would have been my primary limb. I do not use a prosthesis.
– For many years I held myself to a higher level of expectation than most people would hold for themselves. I have been able to wean myself off that expectation over the last few years.
– I try to use my incomplete arm (below elbow) whenever possible to carry the greater burden e.g. the heavier shopping bag. This gives that arm some exercise it does not normally get and gives my intact arm a break.
– I have bought myself a jar opener (I am sure jars are getting harder to open). The one I have is Kitchen C.C. and I understand there are other brands available.
– I have bought a robotic vacuum cleaner.
– I have fitted a leather steering wheel cover on my car. I believe they are a necessity for anyone with hand issues.
– By far the most helpful move I have made is to buy myself a ‘hand shake’ style upright mouse. Brilliant! Stress levels in my intact hand and arm were measurably lower within weeks.
I hope this has been helpful to others similarly affected.
Hi, I have a 4 month old baby boy who was born with a missing radius & thumb, very short ulna on his right hand. Your story is so encouraging! I was just pondering the other day how to teach him to tie his shoes. For now, we are just starting physical therapy because he is having trouble with tummy time & pushing himself up like the beginning of a crawl.
Dana, I am glad you enjoyed the post. If you ever want a video on how I tie my shoes juts let me know, I have made one for other parents 🙂 And my version of crawling was scooting on my butt so don’t let any physical therapist try to tell you what’s normal, your son will figure it out all on his own 🙂
Thank you so much! I would love a tie your shoes video. I have another question. The physical therapists are pushing info on doctors that can “fix” his hand. (Fix is kinda a word that is annoying to me, i don’t think it needs “fixing”) It’s turned in at a 45 degree angle, missing a thumb. He is doing wonderful the way it is. His forearm is missing the radius – the ulna is very short. I think it being short will make it less prone to breaking. I really hope they don’t push us to do surgeries that are unnecessary. I wanted to ask about your surgeries; do you have both bones in your forearm or one like my son? Here’s my email: email@example.com. Thanks so much for sharing your story!
I agree Elizabeth. Dana’s son will figure out how to get around for himself. I was able to teach myself to tie my shoelaces one handed but needed to wait until I developed enough strength in the fingers on my intact hand.
Some of my memories: my Dad did not ever make excuses for me, he included me in whatever the family was doing (including riding horses), he quietly facilitated things for me when he saw a need (rotary pencil sharpener fixed to a sheet of light aluminium, horse with a soft mouth, school bag delivered and left it under the Peppercorn tree!, etc).
Later on when it was time to learn to drive I was able to have a great deal of time to master physical control of a vehicle as we had an off road area available to us. That meant the on road learning time was less stressful.