Spurts and plateaus or a slow and steady climb?

How do you measure progress? How do you know how much better something is than it was one day before? There are many things that can be measured and captured quantitatively but when it comes to matters of health or the body, how do you know if you improved more this month or two months ago?

I’m constantly being asked:  “How are you doing? You noticing any improvements? What’s new with the recovery Arash?” These reasonable and seemingly straightforward questions can be nearly impossible for me to answer. On a basic level, I would assume I’m doing better that day than the previous day, but on a deeper level it’s sometimes really difficult to understand if and how much I’m improving. This is one of the most frustrating elements of dealing with such a devastating injury that has damaged me in so many ways.

One of the earliest posts I wrote on this blog was about being on A Crowded Battlefield and how overwhelming it can feel to deal with so many parts of my body being damaged and the challenges of focusing on one thing and being presented with another challenge. In the same way, when I get asked those questions, I have to do a quick analysis of about 37 different body parts and functions and assess if and how much each of those has improved and if that’s more of an improvement than the last time I checked (probably just a few hours before).

In my head, it may go something like this: “How am I doing? Well, let’s start with the obvious: still can’t move my legs. My feet dangle as limp as they have since I began the hospital adventure seven months ago. I still can’t use a fork and knife because I don’t have enough strength in my core to sit up and use both of my hands freely. Speaking of hands, funny you should ask… yes I can type and hold a glass of water and push myself around in my wheelchair (have I mentioned how much I hate my wheelchair??!!) but I can barely squeeze the shampoo out of the bottle and forget about unscrewing an unopened jar or holding anything heavier than a book in my hand. Ahh but the toe, yes alas I can still wiggle my pinky toe. But wait wasn’t that a while ago that I started to wiggle my toe and thought that it was going to snowball into other major improvements, and oh yeah, that hasn’t happened quite yet…” It goes on and on but you get the picture.

All of this brings me back to my original motivation behind this post, how do I measure progress in this post-injury/still unfamiliar body of mine? Maybe the hardest question for me to answer is whether my recovery goes in spurts and plateaus or if it’s a painfully slow and incremental process. There are moments (like today and a majority of the last couple weeks) where I do feel like I’ve undoubtedly plateaued. Some of the exercises I did today don’t feel much stronger than they did last week, or even last month. My hands are so incredibly slow to improve and there’s little I can do to expedite their growth. Standing and walking on my own seem as far away as they ever have been.

But just when it seems like I’m unimaginably stuck on this plateau, I think about one thing: my body is constantly changing. Whether I feel stronger today than I did yesterday is hard to determine but I might feel ever so slightly different than I did previously. And maybe that’s the answer, maybe improvement isn’t always obvious or clear to me, but maybe I have to accept that change is the substitute for progress. After all, if my body was actually stuck and didn’t want to get any better, why would there be so many changes, so many tingles and burns and spasms and unfamiliar sensations and sore muscles? In that case, then maybe my recovery is more of an incremental climb, a barely upward sloped line glacially moving towards the top and signifying a very slow but consistent progressive process. I suppose I still can’t make up my mind on how to measure or explain my progress so just bear with me if I stumble or mumble a bit the next time you ask me how I’m doing.

29 thoughts on “Spurts and plateaus or a slow and steady climb?

  1. Hey Arash,
    Great post. As someone with a chronic illness I can relate to some of what you are talking about here. I think accepting changes as progress is a brilliant way to measure change. I often give people more feedback on how I feel and how I feel I’m doing instead of trying to figure out how different I feel from one day to the next. Though of course with doctors and medical types that didn’t work quite so well. Anyways, I think your blog is fantastic. So honest and well written. It sounds like even though things can be discouraging you are doing a great job of caring for yourself. Wishing you all the best on your healing journey.

    • Thank you for the kind wishes. I’m trying my best to care for myself, as I hope you are too. I’m glad that my post could have an effect on you and your situation too. Happy you’re reading. Best to you -AB

  2. Hello Arash,
    This morning I have got the update again from WordPress.
    Your story grabt my directly, and as it allways do! Because you telling it from the heart, no excuses , no detours, if you know what I mean. Just straight.

    I completly understand what you mean ,how do you measure progress,feelings,improvements of your body?
    Bu such questions you just must have quick scan in your brains for How do I answer this now as good and honest as possible?
    I tell you a bit about me. Just in a short way. In 2007 I lost my husband to a bad disease. He was 48 years Young. We have together three Young kids. By that time 8 and 11 years old.
    After a while people ask me , how are you? I always thought in my mind, stupid question, what do you think? But polite enough I had to reply. And after a longer while people said to me , hé Hello all things a bit on trail now? How long ago is it now since…….
    I try to avoid those questions and the people who ask those.
    This summer it will be 6 years later now.nd it’s still difficult to answer. Arash this is totally not comparable to yours.
    But in a way sometimes these reasonable,straightforward questions can’nt be answered for you. Like they are not for me as well.
    Some times I think ever, could people just take over for 24 hours or a little more to feel and have what you have now and experience it. Your life stopped seven months ago, it is completly changed,and you fighting your way back. And I understand how difficult it is for you to tell us how you deal with such a devastating injury that has damaged you in so many ways.
    And I think with me a lot of other people as well. We want to hear about you, because we are really interested.
    So keep on fighting and writing!! And again, nothing of your experience from questions of other people is comparable with mine. But in a polite manner they should ask us. And like you say Spurts and plateaus or a slow and steady climb? In a few months or maybe more , who can say? You can tell there is a difference, slow , steady , or even a little climb. Improvements isn’t allways obvious to you like you said. But there are changes, but difficult to tell and explane and even to write down.
    And we followers on WordPress want to her from you again.
    Lots of love and Greetings of me Nelly. from the Netherlands

    • I’m honored that you chose to share your experience with me Nelly. I’m sorry to hear of the loss of your husband. I know our situations are not the same but I recognize the challenges you face and I admire your insight in how you’ve deal with your situation. You’re absolutely right that people need to stop and appreciate what they have in this very moment. I wish I had done that more before my accident. It’s one of the reasons I want to try so hard to get better, because I want to be able to use this experience to help me appreciate my life even more.

      I’m curious though, how do you answer the “how are you doing?” question now, after 6 years? Have you been able to move forward as well as possible?

      I’m truly grateful for your kind words and for continuing to read my blog. I greatly appreciate your comments so thank you and please stay in touch. -AB

  3. Oh honey. Sending you so much love right now. There will indeed be moments when you are doubtful, but keep fighting ! You have it in you. I believe. We ALL believe.
    Big hugs and bisous XXXX
    C

  4. All I can suggest is, slow down mentally. Instead of looking for improvement, just look (& think) about change. Change is a vital component in these early stages since your accident. You’re probably still thinking the way a healthy fit normal person thinks (to some degree). Your whole concept of physical existence has been changed. I know its been 7 months now, but in the whole scheme of things and the severe damage done to your spinal cord, it’s probably still called ‘early’ stage.

    Besides what is improvement? It’s a word with 11 letters.

    ‘Change’ only has 6 letters and therefore is far easier to accomplish (mentally and physically). Instead of thinking about moving forward, think about moving sideways.

    Have you been able to solve ‘why’ this one pinky moves? Had you sub-consciously been doing some sort of mental exercise that had a physical result? Or is there a connection between your little toe and some part of your spine?

    I vaguely (memory problems now) remember using minute drops of black pepper essential oil in a massage oil when I was studying Aromatherapy and massage some 20+ years ago. It had the most unexpected (& very funny) stimulating effect. Perhaps some of your other senses need some fine-tuning or stimulating.

    The Mind/Body connection is far more powerful than most people think and when stimulating the olfactory senses in the right way, some previously unthought of results can occur. I’m not suggesting Aromatherapy will have a positive effect on your nerve/spinal cord damage, I’m suggesting that you might like to do some more research on some alternative therapies and the mind/body connection and how some of these alternative therapies work (if you haven’t already done so).

    • Absolutely wonderful suggestions! You’re right that change is the more applicable thing to seek right now. It is indeed vital and as I’m coming to realize, it’s incredibly helpful to focus on change instead of constantly seeking improvement. I haven’t solved the mystery of the pinky toe but I do know that side of my body is more active so I’m guess that’s why it’s moved. I completely agree with you on the importance of the mind/body connection, in fact that belief is what I’m banking my entire recovery on! I will look into more alternative therapies as they have greatly helped me thus far. Thanks for the insightful comments. Best to you -AB

  5. Beautiful and heart-wrenching post Arash. Yes – that is hard to measure.
    You are absolutely right: “There is only one law in the Universe that never changes: that all things change and that all things are impermanent.” (Tibetan Book of Living and Dying)
    Love to you, Ciara.

  6. I wish people would ask about your spirit as often as they did your body. Cause your spirit is beautiful and you are doing a great job of just taking it one exercise at a time, one new burn/tingle/sensation at a time. Sending good energy your way!

  7. I read this blog right before doing an amputation on a little dogs leg that had a non healing fracture and the owner could not afford more extensive treatment to try and repair the leg. The dog has not used the affected limb since he broke it almost 2 months ago and the muscles were very atrophied and the blood circulation was poor. Even when I cut through the brachial artery there was not the expected spurting of blood but rather a slow oozing of it. It makes me wonder if you were able to increase circulation to your hands and your core and your feet if you might be able to speed the healing of the nerves and damaged tissues?

    One of the biggest reasons for this little dogs non healing fracture is because the blood supply gets damaged and it cant build an adequate callus. One of the biggest new areas in veterinary medicine is laser therapy. It is supposed to increase circulation to damaged areas thereby promoting increased healing. So since you are unable to move your muscles, the muscle atrophies as does the vascular supply which continues to slow any progress and leads to continued weakness.

    All this rambling to get the thought out that maybe if you can increase your circulation to your hands and arms then you might be able to speed the return of the muscle and function. I know that 20 years ago the big thing for improved circulation was magnets. There was also the use of ultrasonic waves and now laser and sound waves. Surely there has to be some way to have gloves or something made that will draw the vasculature out? There are also supplements that are out there to increase circulation. I would think that anything that causes the vessels to work more would be beneficial to cause muscle improvement and therefore increase recovery.

    Sorry for the long rambling post. 🙂 Have a most fantastic day!

    • Thanks for sharing your thoughts and suggestion. Yes I think circulation is quite important and it’s something I work on quite a bit with acupuncture, massage and other things. I think it’s very helpful to improve my circulation and I’ll keep your thoughts in mind as I move forward. -AB

  8. i know in my heart that you will walk again and even run with wind if you set your mind to it. never lose hope, not for an instant. never give up because the next moment may bring the biggest breakthrough ever. i am highly spiritual in all my convictions but nothing changes when i deal with so-called real world. think of your dreams. why have you become consciously aware while dreaming? because of your injury you have by the force of your own will taken charge while in the dream state. doesn’t this make the possibilities seem as real as the limitations that stare you in the face daily? that is definitely a mark of progress. one day the feeling in the dreams will outweigh what you feel in this physical world. on that day you will have already the battle.

    almost everyday someone asks me if i’m ok. it must be the faraway look on my face or whatever. i am ok because i know that i can recover all that i have ever lost. i know this because i won’t give up. no matter what. stick to your guns. you have all the power to do whatever you set your mind to. know it with every fiber of your being. refuse to accept anything less. the light of god never fails and that light beats your heart. it even wiggles your pinky toe. by the way, it responds to the command of gratitude. i know you already understand gratitude for you have written about it. i was impressed. in my darkest hours i have used this little trick. it actually works. the trick is to use it constantly. everyday. i’m still working on that. you are more motivated than i. i bet you could move mountains in no time. anyway, never hurts to try. i’m going to try a lot harder. everyday. just like you. have a wonderful day. zor’ra

    • What a thoughtful and uplifting message Zor’ra. Your words had a profound impact on me especially what you said about the next breakthrough being right around the corner. I think that’s so important to keep in mind for me because that’s what happened with my pinky toe. It was a sudden thing, one morning I noticed it was there. Your words are motivating and inspirational and I will try to think of them the next time I’m in a dark place. Thanks for your continued faith and support of me. I will try harder too… -AB

  9. I know Arash – so hard to have to evaluate and process… the simple well-meaning question, “How are you?” over and over. First — it may be emotionally difficult for you to even try to answer — i know it has been for me — after 20 years and 11 surgeries that were all promised to be “the cure” ~

    At one point I did work with a very good energy/medicine life coach/healer type person – and she freed me up by suggesting I don’t answer this question with any specifics… so instead I would say — “doing my best” — or ” it is what it is, but I’m so much more than my pain/illness – injury” … Also “this body is just the shell of my soul” …. so this may be a strategy for you now if you are not wanting to “go there” to assess how you are physically at this very ‘red hot moment’. Another helpful tool for me has been to say to myself – “this is only temporary” ~ and see if I can accept that I’m on a path, and it will be small steps of progress… also to accept myself that many (even those who love me ) will not be able to begin to comprehend what my path entails… I am sure you can also relate to these feelings…

    Your spirit and you personal will and determination will be key for you… do everything you can to be where you are now without resistance… acceptance is very hard when we are in a place of suffering… but it is the work … I do think every little change is a sign that there will be more changes…more progress… incremental – and also spurts and plateaus. It will be all over the place for a while – and that is perfectly ok… You are always evolving toward something more… For you I would say – keep your focus on what you want to see – your dreams – your imagery — your bicycle!!

    I am so sorry if I got on soapbox a little here… just know how earlier on I needed ways to frame my thoughts about the very topic you raise here… and it was helpful to me to have these mantras and tools that seemed to empower me. Find more of your own – share them… Keep writing and reaching out — feel connected and loved ~ it is all really good stuff for you … and me — Strength and Love to you ~ Robyn

  10. Arash, you are so inspirational. I can’t imagine the challenges you face every day… The things we take for granted, eh? A few years ago I knew a young man who was diagnosed with brain cancer. He fought it hard for several years. Got married to his high school sweetheart and tried to live a normal life. But it came back. He got the most expensive treatments available, and, still, at the age of 25, it took his life. He had a blog at the end. It talked about the crazy diet he was on and how smells and chemicals affected him and gave him head aches far beyond that of a migraine. He lived in Colorado and would just go outside, bundled up, for hours at a time. Fresh air… He had seizures and would vomit. He had to be cared for 24/7. Through it all, however, he was so positive. He believed in God and, though he wanted desperately to live, towards the end he gradually came to accept the fact that he would not, and he knew he was going to a better place…

    I am praying for you, friend. Praying that, someday soon, you will know better how to answer people when they ask you, “How you doin’?” None of us can know what it’s like to be in your shoes unless we’ve been there, too. I don’t know what else to say. But keep your chin up.

  11. Hi, Arash,
    I am one of those people who have asked you how you are doing. I think that when people ask how you are doing or how you are progressing, they are doing so because they care, not because they want a blow-by-blow description of how you feel today vs how you felt on Thursday, specifically. I guess we can’t imagine how suckful it must be for you to be in this situation and asking how you are or if there are any improvements is our way of showing that we care. The answer need not be that involved – “I’m doing okay” is a fine answer, as is “I’m a bit wonky emotionally today”. Or “well, so far it’s just that one damned toe that is moving”…

    We are all gunning for you and wish you a speedy and thorough recovery. Of course, the way you are going, neither seems imminent. Don’t give up hope. Don’t give up. Never give up. You never know what might be just around the corner.
    xo

    • And, by the way, here is an amazing blog by another person who is battling a different type of debilitating situation. Mightwar is amazing, too. Please check out her blog. This link is for a very specific post that outlines what is wrong with her (please watch the video, too). Make sure you click on some of her other posts because she is a fantastic blogger. xo http://mightwar.com/2012/11/25/spastic-and-sht/

    • Thank you for the reminder not to give up. I completely understand your point about people asking me that because they care and I so appreciate that. I’m fortunate to have people to ask me that and care so much but as you said, it’s coming up with the answer which is a challenge. I like to be honest and I guess sometimes I may want to give more information than necessary but it also depends on who it is, how long it’s been since I’ve seen them, etc. I suppose I want to give people as honest an answer as I’m willing to give at that moment. I will keep working hard, for the desire to see what’s around that next corner. -AB

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s