Five Years On…

I have a very vivid memory of the first day of school in fourth grade. I remember the begrudging acceptance that summer vacation was over, the yearning for just one more long day spent outside and out of the confines of school, and looking up at the calendar on the wall, next to the teacher’s desk, with SEPTEMBER folded open. I remember thinking to myself that it could literally be an eternity before all those ensuing months would pass, the calendar would flip to June and the liberation of summer would commence anew.

I don’t know about all of you but for the elementary school me, nine months felt like—and turned out to be—a very long time. By the time the following summer came, it seemed like I had been through endless glances at the calendar and a brutally long build up to the end of the school year.

We all know that as we get older, time does indeed move faster since a week, month, or year represents a smaller and smaller fraction of our full lives.

Today marks five years since my life was turned upside down by a spinal cord injury. Five years since everything I knew about my body and how I interacted with the world was broken, shattered, and left to be pieced back together (literally and figuratively).

Five years. 260 weeks. Half a decade. Has it felt like a long time? Or has it gone by fast? The answer, as you can probably imagine, is both.

On the one hand, five years have gone by surprisingly quickly. The weeks and months do seem to pass faster and faster every year. And I can very clearly remember my life before July 8, 2012 and it doesn’t seem like a long time ago at all. Maybe it’s because nearly every night in my dreams I walk, run, play sports and have more control over my body than I do in waking hours. Sometimes, in a lucid dream, I realize what’s happening and I tell myself to savor every second of it, knowing that I will inevitably wake up and go back to a very different reality.

But on the other hand, five years has also felt like a five-term life sentence in prison. To think that I’ve woken up 1825 days and encountered this body is still terrifying. To recognize how many singular moments of struggle, pain and discomfort I’ve experienced is mind-numbing and overwhelming. I can’t even conceptualize how many times I’ve had the wish, prayer and desire to somehow get rid of the impacts of this injury and go back to a day-to-day life that doesn’t need to be planned around managing pain and obsessively analyzing sidewalks, curbs, stairs, ramps and building access. Thousands of times? Millions? Possibly.

When it comes to the time frame of my injury—and especially when I’m approaching an anniversary—people often ask me two related questions:

1. Has living with this injury become easier at all?

2. Have I gotten used to it?

The short answer to both questions is an unequivocal NO.

I’m sorry if that’s not what people want to hear but it’s the truth. I’ve heard other people say, “oh you’ll get used to it” or “it’s not that bad once you figure things out.” In fact, I’ll never forget the hospital worker who told me—just days after my surgery—to look at the bright side: “At least when you go to a baseball game or crowded event you’ll have a comfortable chair to sit in and won’t have to stand in line!” (How or why the hospital employed and allowed that person to speak to people early after their injuries is still beyond me…)

I know of many people who’ve suffered spinal cord injuries who have said that things did get easier after a while, that they did get used to using a wheelchair and while I respect each person’s individual opinion and experience, that approach has not worked for me, and I’m not sure it ever will. I’ve been told I’m hard-headed (true); I’ve been told that my effort to improve my body and work on my recovery is simply delaying the inevitable; and I’ve been told that this injury can’t be beat, so the sooner I “accept my current condition”, the happier I’ll be.

Bullshit.

Yes this recovery hasn’t gone as fast as I would like. Yes I haven’t reached all of my physical or functional goals yet. And yes there is still a long ways to go. But if I had listened to those voices early on, there’s no way I could have stood up and asked Brita to marry me. There’s no way I could have gained enough strength in my abdominals, back and core to train for and complete a five-mile swim. And there’s no way I would have continued to gain physical breakthroughs and new neurological connections in my third, fourth, and fifth years after the injury, long after that two-year window when the doctors said the healing would surely stop.

The truth is that it’s because of, not in spite of, my commitment to my objectives and diligence that some things have gotten easier. But while certain challenges have lessened or been addressed with novel solutions, new challenges have always arisen.

Reducing pain or discomfort in one part of my body has resulted in new pain somewhere else. Because I have sensation all over my body, I am not disconnected from my lower body and know that being in any one position is uncomfortable and unwise. I still have to plan every single day around minimizing physical pain and how much time I spend in the wheelchair.

The psychological burden of dealing with this injury has become more manageable, but by no means would I say that it’s something I’ve become used to. The truth is that it sucked five years ago when I woke up in the hospital, and while many things have changed and improved, it still sucks today. Again, I’m sorry if this isn’t the narrative or story that people want to hear but I’ve only been sincere and genuine in this blog and so I share all of this with the utmost honesty.

One thing I admit I have learned and accepted is how to find joy and embrace moments of happiness despite all of my day-to-day challenges. For the first few years after my injury, I lived with a mindset that I could not and should not allow myself to feel happiness because that would somehow concede and accept defeat. I’ve learned—through the wisdom, love and support of my family, friends and most of all my incredible very-soon-to-be-wife Brita—to allow joy and happiness back into my life.

I no longer push away those experiences. I no longer think of joyful emotions as distractions from my commitment and pursuit of a healthier and stronger body and a more fulfilled life.

So where do all these ramblings leave me right now, on this five year anniversary and moving forward?

I am still working just as hard as ever on improving my condition. I refuse to live a life of perpetual discomfort and pain. I refuse to accept externally imposed limitations and societal and medical customs of what living with a disability should be like. I refuse to abide by a narrative that “it’s all ok now,” that “things aren’t so bad,” that time has healed all the wounds.

I will continue to listen to my body first and foremost. I will work hard and keep striving for new connections and improvements. I will push myself as long as the fire in me burns (and it’s burning as strong as ever now). I will rest when it is needed and beneficial and I will continue to carve out my own path to a better, healthier, more functional, more fulfilling life.

I am still bitter about the prognoses and outdated expectations that the medical establishment set for me. Instead of telling me that all the healing would occur in one year or two max, that after that I wouldn’t get better, I wonder where I would be now if they had provided more encouragement, support and validation for the potential to continue improving for many years to come. Although I never took them for their word or accepted their arbitrary prognostications, I know that those words impacted me profoundly.

In addition to the pursuit of my personal recovery objectives, I will continue to do everything I can to educate, inform, and alter the ubiquitous approach that our medical system still teaches and promotes to people dealing with spinal cord injuries. There is no place for a method that takes away hope and possibility from so many people in their most vulnerable time. This must change.

The human spirit is strong. The will to work towards something seemingly unachievable should not be discouraged or doubted. And our individual and subjective understanding of time, of what days and months and years mean to each of us, and what we each want to do with our limited time on this planet, should be explored and revered.

I never thought I could make it through five years of living with this injury, but I have. And I hope to continue on my path for another five, fifteen or fifty years to come.

22 thoughts on “Five Years On…

  1. The doctors told me, 6 years ago, when my son had a traumatic brain injury, that “he needs a miracle,” & suggested I speak with an “end of life” doctor. Today, my son walks, talks, feeds himself, & is a happy, loving person. He continues to progress all these years later. He has exceeded all expectations. Although I realize doctors need to give realistic expectations, I also think it’s so important that they offer hope. Hope was the very breath that I took. And still do. Things are not what they used to be before his accident. I often grieve a person who is still alive. But there are also many joyous monents. And the belief that there will be many more. Never give up.

    • The importance of hope should not be discounted. I’m happy that your son moved beyond the doctors’ predictions and found so much success. Thanks for sharing. -AB

  2. thanks for keeping it real Arash! follow that fire, I am so proud of your accomplishments. I celebrate your mindset opening up to let the joy in – “you have to sniff out joy, keep your nose to the joy trail”.

  3. Arash-

    I always afford to reading your updates.

    I am C6/C7 “complete” and agree with you in regards to what we’ve been told is bullshit.

    I recently got some leg movement back and spending significant amounts of time trying to get more.

    Have you considered trying HGH?

    Here is a recent study showing very positive results for SCI.

    I have been taking it for weeks now and seen some small benefits in regards to better sleep, better mood but nothing major.

    There are a few things in the article that I asked questions about.

    I would like to see the study or presentation but so far does not seem to be available.

    I have some emails out to the researchers but have not heard back.

    jim radtke

    314 503 4233

    • Thanks for the comment and suggestion Jim. I had not heard of HGH with SCI but I will have to look into that. I didn’t get the link you posted for the article. Could you repost? Or send to me? Thanks! -AB

  4. Thanks Arash to let us known what the reality actually is and not offering a version where your life is only filled with progress and rainbows just because we might feel more comfortable. Since the first post, I’ve always admired your strength, your commitment and the fact that you don’t give up. Hope is like a superpower. Resolving things that can’t be explained. It can beat the odds and help beyond expectations. I’m glad you got that power. In each of your battles, it is right by your side. As you said, hopeless you would have stopped trying and you wouldn’t have been able to stand up in order to propose. Hope and love are two important variables of this very difficult equation you’re trying to solve and I know there’s no better mathematician here than you. Keep hoping, keep believing as we do too. You’re always in my prayers. Sending you a big hug. Audrey L.

    • I don’t know what to say. I’m really touched by your words and continuous support. Thank you for reading everything so thoroughly and commenting so thoughtfully. Like you said, I AM trying to solve that equation, but not sure I’m the best mathematician quite yet… We shall see, I’m just doing my best. Thank you again for everything. Sending you hugs -AB

  5. It is always good to hear that one is not in a battle all by themselves. I joined this battle just over 3 years ago and will never give up. I have great support and am finding moments of enjoyment but 100% agree that there is no room for people trying to put limitations on your efforts to recover because they were told or taught that. Keep dreaming as those dreams are part of the recover.

    • The dreams always come and always inspire me. I love my dreams for that reason. Thanks for sharing. All the best to you on your journey -AB

  6. I know you like to read and write. Read this book, OptionB. by Sheryl Sandberg and Adam Grant. It.s an excellent book. Well written and researched. It will help you on your road to your book.
    Vince

  7. Speechless. Your writing skills never ceases to amaze me. You so perfectly captured the very sentiment Vaughn shares with me when we are alone. My heart breaks for you both. I appreciate your honesty and sharing what it is really like to live with this sentence. You amaze me and I commend you for your tireless efforts to get better. Thinking and praying for you always. Miss you! Denise

    • I miss you guys! Hope you’re both doing ok. You’re in my thoughts. Thank you for reading and for being part of the journey. Best to you both -AB

  8. your the big inspiration to me…..i have completed 4 years i am 21 now…but my leags as gone weaker….but i am walking around with walker…but i like to be more independent as possible….i feel this is it…after seeing ur post i will work as long i get more independent…thank u a big hug from me….

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