My own little island

Let my absence from my blog end! I’ll explain later why I haven’t kept up for a while but for now, it’s time for another update.

I’ve recently come to the conclusion that to continue my effective recovery from Spinal Cord Injury (SCI), I have to remain isolated on my own little island.

I’ve probably mentioned in the past that recovery from SCI is all over the place, to say the least. Depending on a variety of factors (many of which are not well understood, no matter what the medical community says) one’s ability to regain function, get stronger and recover is largely unpredictable. I’ve also explained how one’s initial functional capabilities following the injury is largely dependent on where the injury occurred on the spinal cord (higher up towards your neck and head or lower down towards your tailbone). But here’s where the ambiguity of this injury (and its recovery) becomes prominent.

People who are injured in the same exact location on their spinal cord can have drastically different capabilities and recoveries. For example, I’ve met a few dozen other people who broke the exact same vertebra in their neck as I did, C5 and C6 in the lower neck. Each and every one of these people’s situations is different, as is their respective recovery.

Unlike more common and less severe injuries (i.e. a torn ACL, broken bone, strained muscle), there is no standard protocol for how to pursue recovery following a SCI, even for each specific level of injury. Some are left with little function in their hands while others have an iron grip; some with zero core control, others with boxer’s abs; some can wiggle a toe or lift up a leg and some can’t even feel where their lower body is in space (proprioception). As a result, the timetable for recovery is all over the place.

I bring this all up now because the desire to compare one’s injury to others’ progress and recovery is, I think, inevitable and only natural. I hear of another person with a C5/C6 injury who was able to move something or regain function at a certain time after their injury and I immediately start to compare to myself.

“Can I do that yet? What does it mean if I can or can’t?”

“I wasn’t able to do this certain thing that someone else did at a specific point after the injury, so am I doomed?”

“Well, if I wasn’t able to do this function at this time then I may never be able to.” 

“If this one specific aspect of recovery was going to happen (like it did for someone else) then it should have happened by now.” 

These are the thoughts that run through my head when I talk to anyone else with a SCI. While it’s inspiring and motivating to hear that someone was able to perform a specific task or function, it also messes with my head and threatens to endanger my confidence and resolve. That’s why I believe that comparing one’s SCI to someone else, no matter how similar they may seem, is a zero sum game.

I don’t want to stop these conversations with others about their recoveries, so what I’ve had to do is place myself on my own little island of recovery, and force myself to remain there, all by myself. It’s difficult because I want solidarity with others. I want to hear someone tell me that it’s going to happen to me because it happened to them. I want to think that my recovery is linked to others, that I can use their timetables to structure my own and manage my expectations, but that’s just not the way it’s going to be.

This recovery is a solitary one. Comparing doesn’t get me anywhere, which is why I’ll stay on my own little island, and keep working towards my goal.

***

I’ve been away from the blog for a bit because I’ve had my hands full following up on my survey and garnering momentum for a petition I started to change the way SCI is approached and dealt with. My goal is to get the word out, get as many signatures as possible to my petition so that I can get it out to multiple forms of media. If you’re interested in signing my petition, check it out below. If you have any connections to media (journalists, websites, news sources….anything at all) and you want to share them with me, I’m grateful in advance.

http://www.change.org/petitions/healthcare-providers-medical-insurance-companies-provide-the-minimum-care-to-paralyzed-individuals

28 thoughts on “My own little island

  1. I know exactly what you means when you write about comparisons & I think we all do that, each one in their respective case, it just messes up with our minds & is counterproductive. It is natural & human to do so but we learn from the results we get…
    I have always thought that socializing is a good thing but we need to choose with whom we do so… for each & everyone has a certain energy & if we want to get anywhere we need to be around positivists 🙂
    Wishing you the best of luck in the goals you desire.

    • I totally agree. You’re right that this doesn’t just apply to my situation or injury but to socializing in general. It is important to recognize who we want to surround ourselves with. The challenge for me is that I like talking to people and sharing stories but it’s hard not to compare once I’ve heard their story. Best to you too -AB

  2. Good to hear an update.

    But I certainly agree about how hard it is to compare (or not compare) your progress with similar SCIs. I think it can happen to us all in times of stress and frustration.

    HOPE is the one thing that keeps us going in times of tragedy. HOPE is something that I encourage all patients of any chronic illness (or tragic accident) to get a grip on (and never let go).

    You need to gain Strength of Mind and Will yourself to continue (in the face of adversity). You need to try to separate insensitive statements and uneducated predictions from your Reality. YOUR Reality is different to every single person on this planet. You can have a 100 or 1000 people in the same situation and have different treatments and outcomes for each and every one.

    Why do some people recover or heal? Sometimes it seems like a miracle (and I certainly believe in miracles these days). Why do some people fade or wither away, and die?

    Put 20 people in a floundering lifeboat in the middle of the Pacific after their ship has capsized. Why do some people survive 6o or 90 days (assuming they can catch some rain water to drink) and why do some die within days?

    Tell a person they will die in 7 days without food and they probably will. Tell them, man can survive up to 90 days without food (as long as they have some water) and they often DO.

    Having said that, I think it IS important to talk or interact with patients with similar injuries, because they understand where you’re coming from and how your mind plays tricks or runs around in circles. No one understands serious chronic pain (unless they’re a chronic pain sufferer).

    No one understands the frustration and swirling emotions of your situation, unless they have gone, or are going through similar things. I must admit I sometimes get fed up with people telling me what I can and can’t do. Even kindness itself can have some frustrations. You’ve got to have an object ‘sounding board’ too. You need someone who makes no judgement, predicts no course, or restricts your Hope.

    I believe we all need someone to ‘walk’ along side of us, in the depths of tragedy. We need compassion and understanding, but not necessarily guidance and direction. Given the right conditions and resources, most people eventually find their own path.

    • What a wonderful message you posted here. Your wisdom and beliefs are comforting to say the least. I completely agree with you that how we frame a situation has so much impact on what we can achieve as human beings. It makes us (humans) seem rather fragile and vulnerable though doesn’t it? Just framing something one way vs another and you get such different results. I think this just reveals our vulnerability so clearly, yet also proves how resolve and tenacity and resilience can help one achieve their goals.

      I absolutely will continue to interact with other SCI survivors, there’s no doubt about that. But my point is that I have to be so careful about how I apply what I hear from them to my own situation.

      At the end of the day, no one can tell us what we’re capable of, that I completely agree with you. This has been proven over and over again. But I would say that miracles may just be the finest examples of strength and diligence and will. I think they can be replicable. I think the human spirit has that ability.

      I’ll stop there before I ramble too much more. Thanks as always for your thoughtful comments. -AB

  3. Wonderful to read your blog again!! You rock my dear Arash. You will turn this injury into a major social impact.

  4. dear arash,

    i am glad you are on your own little island. i think it is the best place for you to be now. i was most struck with what you said about how people offer comparisons and how that can make you feel that somehow you must be off the track. You are right; every injury is different and each person has a unique response. You cannot be compared or put in a box. Your most important task is to focus on your goal and how you can get there. By being bombarded by well-meaning advisors, etc. only sets you back. It can be and is overwhelming. I have a great visual of you on this island.

    I am reading a book called overwhelmed work, love, and play when no one has the time by brigid schulte. i heard her on fresh air and also on npr a few weeks ago. she is a journalist for the wall street journal. what she has to say is i believe applicable to all of us today. she talks about “contaminated time”, that is time that is supposed to be free or relaxing or leisure but is actually not so because you are thinking of too many other things. in your recovery, a lot of advise and examples are contaminating your thoughts and not letting you focus on what you want to be working on.

    i hope we can get together again sooner rather than later. i am going to japan in may with my youngest sister and am excited about this trip marking my 70th birthday! yikes, how did i get to be 70?

    anyhow, thank you for sharing your blog.

    much love, linda

    On Mon, Apr 7, 2014 at 6:23 PM, Arash Recovery

    • Thank YOU for reading and commenting Linda. Great words of wisdom you share. I actually heard Brigid speak on NPR and Fresh Air too. It was interesting to hear her thoughts and approach to managing time. Yes hearing words of wisdom and other people’s stories is helpful but as you said, it can throw me off track. The challenge is that it’s lonely on this island sometimes! It’s tough to always remain motivated when you’re on your own. I think of the movie Castaway and how he had nothing but that volleyball out there with him. He maintained the will to live all those years but he also went to a dark, desperate place. I battle with that all the time.

      For now though, I have no choice but to remain on my island. If I venture off for a bit to meet others, it’s crucial that I always come back. Much love you -AB

  5. Hi Arash, I signed the petition. I am involved in advocating similarly for the brain injured. And I totally understand your sentiments. I can only relate it to brain injury because that is my current experience, with my traumatically brain injured son. In our case, I have learned that each brain injury is different. There is often no rhyme or reason as to why one individual with a brain MRI that looks like scrambled eggs may function higher than an individual with a brain MRI with only a visually slight abnormality. Realizing the importance of being involved in a support group for parents of brain injured children, I use that group primarily to vent to others who I know “get it”, to provide support to them as they navigate their journey, & as a method of sharing ideas, education, & research. I quickly stop myself when I start questioning, for example, why another parent’s child may be taking college classes or driving, when my son has not yet reached those achievements. I also am among parents whose children have been in a vegetative state for years & are still total care. Still a few others have suffered the incomprehensible tragedy of not only having one brain injured child, but two, or having one brain injured child while they grieve the loss of another child who didn’t make it. That usually snaps me back into appreciating the numerous gains my son has made thus far & continuing to provide the best treatment that I possibly can to enable him to reach his own highest potential. SCI is your own journey & your own challenge. However, being part of a community of like minded individuals to advocate for change, as you are doing, & as a way to have support as you continue your healing, is indispensable. It’s a delicate balance, a tailor-made recipe, & one that you seem to be figuring out for yourself. I think of one of my favorite poems, a copy of which hung on my bedroom wall growing up, & another framed copy on my bedroom wall today. The poem is Desiderata. The words that come to mind are “If you compare yourself with others, you may become vain or bitter, for always there will be greater and lesser persons than yourself…”
    Onward……

    • Wonderful words from that poem. I realized as I wrote that post that the notion of comparing obviously doesn’t just apply to an injury like SCI or TBI. Too many of us are constantly comparing ourselves to our peers and others in terms of status, wealth, professional success, material acquisitions, and more. And that’s the deeper message of my post. It’s not just about this injury but it’s about life in general. If we get so caught up with what the next person accomplishes, how does that help us achieve our own goals? Maybe there’s some admiration of someone else that can inspire motivation or action, but for the most part, I do think it’s a zero sum game.

      Thank you for sharing your thoughts and reading the blog. Please stay in touch -AB

    • Thanks for signing my petition and for your comments. I realize my response to your comments hadn’t gone through. I do think it’s essential to connect with other people whose situation is similar to yours in order to gain support and perspective on your challenges. It’s good that those interactions are snapping you into an understanding of what your son is capable of and you’re right that it’s essential to remember that we are all on our own respective journeys.

      I like the words from your poem a lot and I appreciate you sharing your sentiments with me. Thanks for reading and good luck. I send you and your son many healing wishes -AB

  6. Arash, would there be any interest on your part to contribute to a larger longform article on spinal cord injury, detailing everything from statistics of occurrence to treatment needs? It would be an inspiration to have your contribution on there, and I would of course include a link to this website to let sufferers know they are not alone. I would welcome the opportunity to explain more via email if this sounds of interest. Thanks buddy.

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