What does it mean to be independent? What kinds of actions or activities are essential to do ourselves in order to feel satisfied with our own abilities and without having to rely on others? What would be the functions you would have to do in order to feel like you have the most minimal sense of independence?
Often times, when strangers look at me, they see the wheelchair, they see me unwillingly sitting down amidst a sea of standing humans and they may think, “well that guy can’t walk at this moment, but otherwise he seems to be doing ok.” My friends often tell me something similar, that I don’t look like I’ve suffered a major trauma anymore, that I’ve gotten strong enough to the point where I simply look like a normal dude, who just happens to be sitting in a wheelchair.
One of the more unnoticed aspects of Spinal Cord Injury is the loss of independence. To go from being able to do nearly everything for yourself to suddenly have to rely on others for practically everything is an awful reality of this situation. Many times I’ve heard the belief that there is no such thing as full independence, that we are all dependent on others in some way. This may be true, but to have any of your independence taken away from you is incredibly humiliating, frustrating and devastating.
I absolutely hate the fact that I have to ask for help of any kind from other people, and that it happens so frequently. Before my accident, I was thrilled to be as independent as I was, to the point that one of the main reasons I chose to ride a bike as my primary form of transportation was so I wouldn’t have to rely on the potential complications of a car or the improbable and unreliable nature of public transportation. I wanted to be as self-reliant as possible. If there was anything about my life that I wasn’t satisfied with, it didn’t take me long to take initiative, come up with a plan and make a change. (Granted, I was – and still am – fortunate enough to live in a society and country where so much was available to me and I actually had the opportunities to make significant life changes…I don’t take this for granted).
Nowadays, I find myself frequently prioritizing the actions and situations that I most greatly wish I could do independently. To say that the loss of independence that has come with this injury is a blow to my pride is a massive understatement. It’s one of the things that bothers me multiple times a day, everyday. But at the same time, I’ve been able to appreciate the massive gains I’ve made while remaining focused and motivated to continue to improve.
So I want to end by acknowledging what made me write this post now. A friend, and fellow SCI survivor, recently made a short video emphasizing the next step in her quest for independence and watching it made me think about all of these questions and about how my own thoughts on independence have changed since my injury. So I’d like to encourage you to think about what it would be like if you instantly lost the ability to do most things for yourself, if you had to rely on others for those things that you used to do without any thought or consideration, and what things are most important to you, for your independence.
If you’re interested, here’s the link to the video:
Arash Recovery 
I can really relate to your post. As a C4 quadriplegic myself, the hardest thing to come to terms with, for me, has been the total lack of privacy and independence. For most people, helplessness is humiliating even in a passing crisis. I always tell people to imagine or recall some occasion when they have fallen down or required assistance from strangers. It’s not easy to accept help from others. Lovely blog.
Thank you for reading and for sharing your thoughts. It’s never easy to accept help from others, especially when I was used to doing everything for myself. But that’s the nature of this injury isn’t it? -AB
Hey, Arash! Great post, and I can feel your frustration. I remember once I went to an open air concert in Berlin and there was a broken umbrella being thrown around. I thought to myself “that thing is going to go in someone’s eye” so I tried to catch it, and as I did, one of the spokes went in my eye. To cut a long story short, I had to get stitches on my eyeball then and there, and the next day I stayed at my German friend’s place and I was as blind as a bat. I could open my eyes for literally one milisecond at a time and basically had to rely on my friend for the next couple of days to help me around the place. It was quite awful but at least I could open my eyes and got my sight back very quickly. It was, however, very frustrating to be disabled even for that very short time and have to rely on someone else, so I couldn’t imagine having it multiplied to the extent you are experiencing it.
The youtube clip you shared of Julia is just amazing. I am so inspired by both yourself and her and your never give up attitudes. I truly hope she gets her special car as that would be just an amazing step forward for her. I used to be good friends with a guy who had been in a wheelchair since he was about seventeen (he was fifty when I met him) and he was a farmer. I went out to his property for New Years Eve one year and he drove me round the place in his 4WD, which was a manual car. It still had the clutch on the floor. I couldn’t believe my eyes when he changed gears by depressing the clutch with a broomstick handle (or something similar) and moving the gear stick, all the while still driving and steering.
That guy was amazing! When I got there, his house still had steps, he hadn’t had a chance to build himself a ramp yet. It was an old Queenslander type house (google that) and had a short flight of steps. He would plop out of his wheelchair onto the bottom step, bump his bum up the steps, and then reach down and haul the chair up the steps and lift himself back into it. I asked him if it didn’t piss him off having to do that all the time and his reply was, in a slow, Queensland drawl “ahhh it only takes a few minutes, love”. He was still also driving farm machinery and tending animals etc. When I asked him if there was anything he couldn’t do, he drawled that “changing lightbulbs is a bit difficult”… he really made me laugh. He truly did have his independence. He was an amazing man, and I hope that one day he will open up a Facebook account so I can get back in touch with him again.
Anyway, sorry for the ramble, there. Oh! One more thing – I read a blog post about a girl who has cerebral palsy. One of her recent posts was about accomplishing things she never thought she would be able to achieve. Here is the link, if you want to check it out. Also check out some of her other blog posts as she tackles life head-on! http://viewfromawalkingframe.wordpress.com/2013/09/27/things-i-never-thought-possible/
Your brief encounter with the blinded eye gave you a good perspective of what I’m talking about. What’s different about my situation is that there are certain things that I actually can do all the time, and it’s great that I can do those, but there are other things that I just absolutely cannot do on my own. And I’m too damn stubborn and motivated to get the hell out of this situation than to find an adapted home with adaptive furniture, etc.
I think you told me about this friend of yours in a previous comment as it sounds familiar. The guy definitely seems like he’s at terms with his situation and fully has his independence. Good for him. I think one of the struggles of working so hard towards recovery is that I don’t let myself get too comfortable with my current situation. I could choose to give less time to recovery and fully work on living and dealing with life as it is now but that’s just not my attitude right now. Again, it may be stubborn but that’s what it is for now. Thanks as always for reading and sharing your thoughts. I’ll always read your rambles 😉 -AB
Haha. I wasn’t sure if I’d mentioned farmer John before, but he is just soooo amazing!!!!! Did you check out Nicola Noo’s blog post, too? She is another fantastic person. And yes, you certainly have a point about not becoming complacent with where you are at now. I mean, look how far that lovely girl, Julia, has come! I get the impression that even if she does get that amazing car, she will never stop striving to walk again. What gets me is I’m sure that scientists must be working on something to overcome those sorts of injuries. I mean, I’m sure that I heard years and years ago about research that involved bypassing the break with electrodes, so the message still went from the brain to the spine, past the break. Wouldn’t that be amazing!!!! xo
Yes they are working on solutions albeit much too slowly and with less conviction and resources than I would like to see. Honestly, it’s hard for me to believe that they can find a “cure” for this injury as so many aspects of the body are damaged that even repairing the spinal cord wouldn’t seem to be enough. That said, any improvement that scientists can come up with is something I’ll fully support. I did read Nicola’s blog. Great to read and I’m glad you connected me. Thank you -AB
While I can’t even begin to imagine the scale of your frustration, I too am an extremely independent person and understand the internal struggle that endues when some, any of your self-sufficiency is taken away. But remember, each day that you push yourself toward more independence is a day that you actually gain some small measure of it back. Hang in there Arash!
Thanks for the encouragement. I have gotten a bit of it back over time and I only hope it continues from here on out. -AB
Another very inspiring post & video! There are truly amazing people out there!
Wishing you my best for a speedy recovery 🙂
Thanks as always! -AB
I can only imagine a minuscule portion of your frustration (living on my own & being unable to get out of bed a few times or lying on the floor unconscious due to excruciating pain & a few other situations which are actually too embarrassing to mention).
But I think the worst thing for anyone with an SPI must be…… being unable to do any personal hygiene tasks. I think of all the things I have gone through with chronic illness & pain, that would be the worst (for me).
Everyone is unique.
We never know how much we value our independence, until we lose it. No matter who we are, what our age, what our family/friends, our skills or experience in life, we never really know what life is like for people with limitations (until we experience those limitations ourselves).
But what we can do is accept your life as it is and walk beside you with Compassion & Sensitivity to your feelings. Walk at your pace, not ours. Learning to listen, not speak. Learn to give, without expecting return. Learn to just Be in this Moment with you sharing the simple pleasures & smallest victories (as you find & feel them).
You’re absolutely right that the hygiene is one of the worst aspects of this injury. It really has a way of stripping away your adulthood and exposing you as vulnerable as you can be. Luckily for me, that’s improved and I don’t rely on others anymore for that but it’s still tough to deal with all the other stuff. Yes, you don’t know the value of things until they’re gone. That seems to be the case with so much in life… -AB
Arash, although there is no way I can fully understand what you’re going through, I can relate at least a little because of my accident so many years ago. I remember needing help with *everything* in the beginning. In the hospital, well… I won’t even go there. It took me a *long* time to get back up to speed. All I can say is that you continue to amaze me and — and I’m not sure how to word this, but — really, humiliation is such a harsh word. I understand why you feel that way, but no one else looks at you that way. Awe and respect are all that come to my mind.
That’s very kind of you Jess. You’re right that I don’t feel very awesome or worthy of respect these days, and I’m certainly more embarrassed about my situation and the lack of being where I’d like to be in this recovery process. I just want to improve more and more so the independence that I’ve lost can slowly come back to me. Hope you’re well -AB
What an inspirational post and video. Thank you for sharing. Although my circumstances are different to yours (I’ve had Cerebral Palsy since birth) I still find it hard to ask for the help I need.
When I was 16 I had some surgery on my hips and legs that meant I wasn’t allowed to stand up or walk for six weeks, and then I’d have to build it up slowly after that. During that time it was so strange because there were so many things that’d I’d been used to doing for myself that suddenly I couldn’t Before the operations, it had never occured to me I’d need as much help as a did in that time frame, and it made me realise just how many things I took for granted. For example, I never really thought about the fact that I wouldn’t be able to use a toilet on my own, or wash myself very easily. I actually felt quite sad at the fact that I’d taken all this for granted before, and a bit ashamed that I had, if that makes sense.
Sometimes, I feel guilty asking people to lend me a hand with things, but then I try and look for the postives, that, because I need extra support sometimes, I get to meet lots of nice people, like people who help with rail assistants, supported living workers and various others that I wouldn’t nescessarily get to meet if I didn’t have CP.
Good luck with your recovery.
Nic
Very true Nic. Asking for help is an opportunity to see some of the kindness and generosity of people first hand. I still struggle with it though… You shouldn’t feel ashamed for taking those things for granted before. I don’t believe people know how great something is until they lose it. No matter how hard they try, they just won’t know until it’s gone. That’s why I don’t try to explain paralysis to people. I just tell them that it really sucks and that they don’t want to experience any aspect of it, EVER. Good luck on your blog. -AB
Dear Arash,
I am inspired by your thoughts and the thoughts of others who contribute to this conversation. Julia’s video is inspiring and thought provoking. It certainly will help others to picture something they might be able to do to improve their lives despite their disability. You are quite a good writer, expressing feelings so well. I wonder if you ever thought you would be a writer? I see that you are making progress physically, but I think spiritually you are perhaps a bit slower. There are many ways of making a satisfying and successful life that are available to you that you may have missed before your accident. The perspectives of the other people who communicate with you have been educational and touch my heart, as I am sure they do yours. I would like to see and hear more of what people with your physical disabilites do to enjoy life and strengthen their souls. The soul is just as important as the body, if not more so.
The only personal experience that I have had with any disability occurred in my 50s when I went through a couple of years of extreme foot pain from plantar fascitis that totally changed my life. I previously walked a mile to work, walked my dogs morning and evening, and was able to take the stairs to my second floor bedroom and two flights up to my office at work. I was not an athlete but in very good physical condition and never gave any thought to what might happen if I lost my good health. I had to move my bed to the living room on the first floor and take the elevator at work, and be driven by a friend to work, have someone do my grocery shopping and housework, and I gained about 20 pounds. I was embarrassed to have to wear orthopedic shoes and hobble around with a cane. I should have been profoundly grateful that I could still walk and toilet myself. Also, I later injured my rotator cuff on my dominant right arm and ended up with a frozen shoulder that took nine months of physical therapy to loosen up and make useful again. I had been an avid gardener with a large yard and big flower garden, and had to hire someone to do that work for me. The loss of this exercise added another 10 pounds, to my extreme annoyance. Prior to these injuries, I had always been very physically active and independent, never needing to diet or watch what I ate or drank, and was, according to my friends and lovers, quite physically attractive. What I gained from these experiences was an increased appreciation for my friends and the professional medical people who helped me regain my mobility and get over my profound anger and depression at the change in my physical abilities and physical appearance. I also had much more empathy with the patients with neurological problems such as stroke who I met in my work as an EEG technologist. I met the love of my life, who I previously would never have considered as a life partner, through having to hire a dog walker/gardener. He is quite a bit younger than me and is disabled due to post traumatic stress disorder and having had a brain tumor. Due to the changes in my physical abilities, I gained awareness of the wonderful abilities of him to cheer me up with humor and help me look at the pleasures in life that can be experienced even if I was not able to continue my former life. One of the less pleasant consequences of this increased awareness is that I realized the extent to which I had been at fault for the demise of my two previous marriages! I have mended my ways, I am glad to say.
My life today is quite different from before I had these physical problems, in many ways better due to my increased awareness of things I had never had the occasion or impetus to think about. I have lost my superior attitude that I am embarrassed to admit I had before I suffered these problems. I discovered that it is quite alright to have some weaknesses, as long as I don’t take advantage of others by overplaying them! These weaknesses make me more empathetic and also more approachable by people who would have been reluctant to open themselves up to such a “superior” person as I thought I was. These people who have various types of problems but also many strengths and wonderful talents have enriched my life significantly. It took me a while to change my outlook and relax enough to let myself look around me and see what I had been missing. i now realize that people who are willing to care for me are expressing their love or fondness for me. Over and over, many of my friends have volunteered to take care of me in one way or another. Even most of the doctors and nurses, technicians and clerical staff of the medical facilities I have used are there because they love people and enjoy helping them. I chose my career in health care because it was interesting but also because of the good feeling I got when I could help someone who was ill. Don’t think you are the only one in the caregiver/patient relationship who gets something good out of it. There is not much better feeling than when you alleviate someone’s pain, help them feel better emotionally, or help them do something they need to do but cannot do for themselves.
Because you are so young yet, you naturally want to get as much physical ability back as possible, and I applaud your determination and approach to getting as much encouragement and information from others as possible to help you. You are helping others with your efforts.
Just don’t forget to look around you and enjoy the wonderful things available to you outside of your hard work to regain your physical ability. You need play as well. Enrich your life with the senses that you have. Enjoy art, music, nature, good food, good books, movies, classes in subjects unrelated to your health, new friends. Experiment with activities that you may have never considered doing for a hobby or even to make a living. You obviously are eloquent in writing, perhaps you could do public speaking as well. Live in the moment as well as looking forward to the future. Real life can sometimes pass you by when you are only thinking about the future.
I wish you a wonderful life, full of all the richness I have found so late in my life, mainly due to my injuries forcing me to look around me at other ways to enjoy life than being physically active and gaining my “feel good” from my work. I have many more friends and pleasures than I did before my injuries.
Jacqueline
I greatly appreciate your sage words and your comprehensive response. It means a lot to me that you put so much thought and energy into responding to my blog. Thank you.
Your words are very helpful. I agree completely that letting life pass me by is not something I’d like to do. I am indeed very focused on the future and what I want to do and how much recovery I want to get, but rest assured that I’m doing my best to enjoy the moments in life that are in front of me now. That is something I’ve actually learned a lot about since my accident and I’ve become so much more appreciative of the little things in life than I used to be. I do think I’ll slowly get better at figuring out next steps in my life and part of that for now is the desire to get as much function back in my body as possible. Going back to my previous physical abilities may be difficult or take a very long time, but until I at least get some more function back, it’s hard for me to devote much time or energy to anything else. That’s stubborn of me, but that’s the way I am.
You’re right that people who help those in need also get something out of it. It’s just hard because I was never someone in need. I never wanted anything from anyone else, and wanted to do everything myself, for myself. So this adjustment has been really hard. I’m happy to hear that your experience with the medical industry (both as a patient and as an employee) seems like a positive one. For me, that’s not the case. The doctors and people I’ve encountered in the medical establishment motivate me and inspire me to recover but only because they’re so pessimistic and unwilling to inspire hope. They have done near nothing for me and I have quite a bit of frustration and resentment towards them. But I want to prove them wrong, and I will…
Thank you for your comments. I hope to remain in touch and that you keep reading my blog. Best to you -AB
While I honestly cannot fathom the intense frustration you are experiencing (I also generally find asking for help and relying on other to be a form of mental torture), at the same time there is something good, really good, coming out of it. By allowing others to help and care for you, you are given the rare opportunity to actually see your community around you and how much they truly value you. And having the opportunity to help you gives something to them in return — a sense of purpose, an ability demonstrate their love, and a chance to have a common experience with you. So, while it won’t be easy, try to remember that in those moments where you need help that you are actually doing something positive for the people around you.
That’s a fantastic way to think about it and I will do my best to maintain that perspective when I deal with this in the future. I agree that asking others for help does sometimes feel like mental torture but I have absolutely been able to acknowledge and appreciate my community as a result of asking for and receiving help from others. Thanks for the perspective. -AB