Another dose of perspective: handling my hands

Hand diagramWe all take our hands for granted. There. I said it, and I really mean it.

I have written about a lot of my different physical and mental challenges here, but I have yet to dedicate an entire post (or more) to one of the most devastating aspects of my Spinal Cord Injury: my hands. Take a moment and just think of the small, fine movements you use your hands for throughout the day. Examples:

Unscrewing a cap of toothpaste; splashing water on your face, squeezing shampoo into your hands, buttoning your shirt, zipping a jacket, tying your shoelaces, fastening your belt,  unscrewing a jar, peeling open that annoying thin aluminum wrapper that always rips on a small container of yogurt, pouring milk into your coffee, eating with utensils in both hands, grabbing your keys, locking the door, turning on the ignition in your car, pulling a credit card out of your wallet, handling cash, signing a receipt, and on and on and on… 

Every single one of the functions and movements I described above are significantly impaired for me because of weakness in my hands and fingers. Some of the things I listed are still nearly impossible for me (squeezing shampoo), a few have become easier and more routine (signing a receipt, unscrewing toothpaste), and some I can do decently, just more slowly and weakly than normal (tying my shoelaces, buttoning my shirt).

I have become entirely accustomed to not trusting my hands. I am constantly dropping things on the ground. I still can’t hold my laptop or a heavy book with one hand. I am patiently waiting for the day that I can hold a plate of food comfortably without feeling like I’m lifting a 100 pound dumbbell. Opening packaging or a wrapper on everything from a pack of gum to an envelope is still a massive challenge and I’m stuck asking for someone’s help much more frequently than I would ideally like. I have to sleep with a bulky splint on my hand to help my fingers extend and open and feel more limber the next day.

Now I’ve only discussed basic yet necessary tasks and movements for everyday function without even mentioning maybe the most disturbing and frustrating aspect of my injury and its effect on my hands. Put aside for a moment the obvious challenges of someone outdoorsy and active like me who cannot walk or run or hike or do any of the active things I love to do. Let’s accept how excruciating it is for me to be cooped up inside on a nice day when I’d normally be riding my bike or playing soccer in the park. The two “indoor” activities that I enjoy the most, activities that are just as important in defining who I am and what I love to with my time – playing guitar and cooking – have been taken away from me. When I tell people that this is the most humiliating and debilitating injury I can think of because of the number of ways it affects me, THIS is what I mean. Cooking a big dinner for friends or having a lively jam session were fundamental elements of my personality, and now I can’t even do these. This is why it feels like almost my entire identity has been crushed by my Spinal Cord Injury.

I have zero intention of turning my blog into a whinefest to complain to the world about my problems, so I’ll express the entire motivation and reason I’m writing this rant: I am extraordinarily lucky to have the function I have. Even I, in this state of constant frustration and recovery, feel incredibly fortunate for the strength and abilities I DO have in my hands.

Breaking my C5 and C6 vertebrae in my neck would typically mean that I have limited range of movement in my shoulders, weak biceps, floppy wrists with almost no strength to bend or extend them, little to no function in my fingers and hands, and significantly weakened triceps. Nerves to handsMost of the other people I’ve met with my injury have had a much bigger struggle with their hand function. It’s one of the first things other SCI patients quickly recognize when they see me. “Dude, you’re a C5?? Your hands look pretty good…” No one knows exactly why my hands were spared some of the damage and it just continues to prove how mysterious and misunderstood this injury is.

Now if this isn’t amazing perspective, I don’t know what is. Every time I want to complain about not being able to strum my guitar, write music or chop onions as quickly and ably as I used to, I think of how much worse it could be and how lucky I am to at least have the function that I do have in my hands. I admit, I work extremely hard on my hands, at least 2-3 hours a day doing various stretches and exercises (like typing) that have helped me tremendously. To finish on a positive note, I want to recognize a few of the small accomplishments with my hands in the last few months: I can type at almost the same speed I used to, flossing is effortless, I can hold my chef knife and chop much better than before, and I’m trying to fulfill my musical desire by learning the piano. Here’s to continued improvement with my hands, to us all recognizing how amazing our hands are and not to take them for granted.

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40 thoughts on “Another dose of perspective: handling my hands

  1. My father had polio and they took muscles from his hands and put them in his legs, and while it is awesome that he can now walk, it is hard when he struggles to grasp and hold things. Or, because there is nerve damage from the surgery, having to tell him “don’t touch that, it’s hot!” He will burn himself sometimes cause he can’t always feel the heat. Okay. The point: I’m so proud of you for focusing on the progress you’ve made and you are right, most of us do take our hands for granted and it’s good to have you remind us of the blessings that we have. It is great that even though you get discouraged you still continue forward on your progress! Sending good energy your way!

    1. Wow. It would be tough not to have sensation in your hands and I’m happy I at least have that. Thanks for the encouragement, I’m just trying my best to get better in every way possible. Sending that good energy right back to you -AB

  2. I’m humbled by your post. I think of the number of times I complain about petty things and take so many things for granted as well as my hands.You’ve reminded me to take nothing for granted and to not sweat the small things.
    Keep up your courageous and dedicated work.

    1. I am so happy if I had that effect on you. This experience has taught me so much in not taking things for granted and appreciating everything I have. I’m glad it had a bit of an effect on you too. Best to you -AB

  3. I had a small taste of what you are going through, hands-wise, recently. It started out with a sore thumb. Then over a couple of days I realised that my right hand was so sore and weak that I could not even dry myself with a towel. Well, I could rub the towel aimlessly around my body, but to apply any pressure on the towel to actually absorb the water was just useless. I could not write, I had trouble picking things up, buttoning my shirt, turning the tap on or off, pressing the flush button on the toilet, I could not use the mouse on my computer.. the list does go on. Luckily for me I have an electric toothbrush, otherwise that would have been another thing to add to my list of can’t dos!!!

    I went to the doctor who told me I had tendonitis. I then went home. Well, it got worse, and one day at work I was in tears half the day because, at that stage working with a computer, I was in pain all day. I even burst into tears when a colleague asked me how I was doing. I went back to the doc and was prescribed strong pain killers and anti inflamatories. Well, three days after that finally the pain went away and the strength came back. But gee it was debilitating and in the period of a week or so when my hand was so sore and weak, I fearfully imagined this going on for a long time. I couldn’t bear it!

    Luckily for me I am better now. I still made an appointment with a hand physio and went and saw her for one visit, I bought an ergonomic keyboard and mouse for my computer (which I am now used to) and am aware that, being tendonitis, it might come back another time. The doctor also gave me the option of a cortisone injection which would have cost $500 or more, should things not improve. I guess I still take my hand mobility for granted for the most part, but trust me when I say I am glad that I have full range of movement and strength in my hand!

    Keep on keeping on, Arash. In twelve months you will look back and be amazed at the progress you’ve made, even if it’s not apparent on a day by day basis. xo

  4. You are amazing Arash! Wow — an athlete, but also an artist to the core ~ even reflected in musical and cooking talent.

    I know just some of what you describe as my dysfunctional pelvis has led to other areas of my body to compensate — so now I have nerve crush with foraminal stenosis and herniations in the cervical spine _ C3/C4/C5. On lesser scale, i live with all kinds of horrific stuff on the upper (arms shoulders/scapular/neck and hands)… Depending what is being compressed, my symptoms fluctuate, and I’m always working to overcome some crisis, and stay out of trouble. I been avoiding the cervical mris, as I really don’t want to know at this point.

    Yours is a huge challenge. dear friend, and I know you are not one to “whine” but don’t hesitate to vent when you need to here — I think it’s a safe place to lean on folks who care.

    I am so impressed with your resilience — and you, no doubt, will be an awesome pianist! You are also an awesome writer (evidenced by your blog posts)…. so I see some new very cool identities unfolding right here and now! And yes – so happy your injury has not had as great an impact on your arms/shoulder as it could have – can see in your videos you have really great muscle tone in the arms… noticed it right away 🙂 I think the hands will come along with time too… Much Love to you always, RL

  5. Humbling, Arash…just got hooked up with your blog (from Chuck)…glad I did…hit me back sometime, would love to catch up..doing some cool stuff with guitars, will send along at some point down the road…Dan Stewart

  6. So good to hear you’re still working through Arash. When my newborn son was very sick we spent a couple of days in mental lock down but then slowly started to counting every blessing and every slow step in recovery .. wow little babies are tough

  7. Thank you for a great reminder of what we should be thankful for, even when suffering losses. What a great way to turn the tables on our frustrations and/or disappointments.

  8. I’m soooo glad you have some reasonable function in your hands. I don’t know what I’d do without mine as I use them so much (being an artist in the past, & now, photographer).

    Vent all you like – no body is perfect and to be honest, a little venting every now & then is a great way to release some frustration and stress.

    I had extreme elbow, wrist and finger pain alternating with numbness back in 2001 and it wasn’t until I had a second series of acupuncture (after 9 mths of debility) from a different acupuncturist, that it eventually recovered. Taking 5 weeks off work and not being able to sign my own name, unscrew jar lids, do up shirt buttons or tie shoelaces, or cut hard vegetables eg carrots was my biggest hassle. Actually doing up a bra was the worst, but thankfully you don’t have that problem – LOL. I found that squeeze ball exercises and other finger exercises for a few weeks helps every time my right wrist and/or fingers go numb now. Brushing teeth was extremely difficult too, so I have a small inkling of how hard it must be for you.

    But the squeeze ball exercises morning and night helped the most. I could only squeeze the softest ball though.

    The key can be finding the right balance of exercise and plenty of breaks between each session. Too much exercise can be just as crippling as not enough. Stressing out those weak muscles can be bad news too.

    You’re probably an expert at judging what you can, and can’t do, in terms of exercise.

    1. Yeah thanks for the suggestions. I do use a squeeze ball quite a bit as well as different types of putty. Those are probably what I use the most to exercise various fingers and build strength. You’re right that resting is important too so as not to stress out those tired muscles. Glad you don’t mind the venting 🙂 I try not to do it too often but sometimes it comes out. Best to you -AB

    1. Sally! How are you doing? I’m happy you’re still reading my blog and if I inspire you a bit, then that’s wonderful. Hope you’re doing ok and I’m sending positive vibes and love to you from the west coast -AB

  9. I hope that one day you will not only be an amazing pianist, but will have regained the muscle control to coax sweet comforting music from your guitar as well.

    thank you for sharing and for educating us, which reminds most of us to be grateful for our good health.

    1. I hope for that day too! It would be great to become good at piano but I still miss my guitar so much and that’s really my ultimate goal with my hands. Thank you for continuing to read -AB

  10. You are so correct about taking ones hands for granted.

    The braces although probably a bit irritating are a wonderful thing to keep on! I have wore them at night, every night, for 5 or 6 years now so that my hands work! Blood flow is SO VERY IMPORTANT to the hands!

    I have no doubt that you will gain full use of your hands and other arm muscle function! You have too much drive not too!

    1. Yeah I’m going to continue with the brace at night time. It really does make a difference. I look forward to that day when I’ve regained more of my hand function. Thanks as always for your supportive comments -AB

  11. Hey there… We really do need to talk soon! So much of what you say… I feel. I think we are so much alike in that we demand excellence from ourselves. I had a friend comment the other day on my crawling video. She kindly said “You are ripped”! Which I know that I am not. As I know that I can be ripped… and right now… I am not. I will be again, but at this time I am not. I think as a dancer and acrobat losing the use of my legs has shocked me. Literally killed a part of who I was. Reading your connection to guitar and cooking and your hands brought tears to my eyes. I am truly sorry that you are experiencing this pain and frustration. As I read your other replies I notice many people trying to compare other injuries and ailments to a SCI. This is not to belittle any of them as pain is pain and frustration is frustration, but damage to our neurological design is very very very different than any other situation. It’s not a matter of just making muscles stronger (yet that is obvious) it is a matter of retraining the body’s signals and pathways. Repeating a movement over and over again to try an get the body to remember. My injury has cut the signals almost fully from the lower part of my body. From my belly button down. So my work is all about that. It’s funny because I envy you in ways. You have a couple toes that move!! Oh… I want that!! I want to move my toes again sooooo much! I hope to see you this next week. Let’s make time. Keep up what you are doing and know that I’m with you. One small accomplishment at a time.
    Love,
    Tresa

    1. Thanks for the message my friend and yes we do absolutely need to talk. We do share a lot in common and we absolutely demand excellence. I know what you mean about “being ripped” as I hear that too. Friends telling me that I’m ripped and my upper body is stronger than it’s ever been, but I don’t feel strong or ripped psychologically. Until my legs start to move and I have a connection with more of my body, I won’t ever feel ripped or strong.

      I agree that nothing compares to SCI and that’s the whole reason I write this blog. To inform and share this experience so that people can at least have a small snapshot of what this life is like, even though no one knows it unless they go through it, like you and I do. Keep working hard and staying positive and I know that you’ll get more return in your body. So much of what we’re doing is mental and that’s the hardest struggle. I heard of a guy who lost 70% of his spinal cord (removed completely during surgery) and was able to walk and recover a lot. So screw all the ASIA crap and the incomplete/complete crap and just do your thing in your own recovery. We will both get there. -AB

  12. Ohhhh, Arash… I just read Tresa’s message and am brought to tears by both of you. She’s right, of course. There is no comparing a spinal cord injury to any other. The challenges you describe sadden me. The fact that you have the function you do (compared to others) gladdens me. Your positive spirit amazes me. Keep on, my friend. Good things are waiting for you. -jess

  13. Arash, what hand therapy have you been doing? You said you practice typing, but what else? My hand extension returned completely, but my grip is only halfway there. I want my hands back, can understand the awful feeling of not using them!

    1. I use putty more than anything. There are a bunch of exercises that I can do with that and I like the various strengths of putty to match your strength level. Do you have any putty? I also stretch my hands a lot, do some simple but effective range of motion exercises and play with a clip (kinda like a clothespin) to build thumb/forefinger strength. Feel free to email me and we can chat more. abayat491@gmail.com -AB

  14. My deterioration goes from C3 – C7, with the bulk at C5-C6 … typical whiplash damage no breaks, grrr damn spurs belong in an equestrian museum. I don’t have the hands problems that you refer too, just RA in the hands, but aye the shoulders and the weakness are crazy! You inspire me to keep swimming …

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