Each morning I wake up at the crack of dawn, work with my caregiver for several hours to get ready for my day, and then pump out work for around 10 to 12 hours each day, continue to work my caregiver for afternoon activities, then rest, repeat, and start again in the morning.
At the ripe young age of 10 years old I attended Catholic boarding school in London, England. I’ve been conditioned to work harder, smarter, more efficiently, and just keep going. Don’t get me wrong, I have my fair share of fun, but hard work has been ingrained in me as long as I can remember.
My definition of work has changed over the years and now encompasses spending my day working professionally, advocating for those who can’t advocate for themselves, working on trying to build a large social media following in order to affect greater change, and find some kind of balance in my personal life. I’m not always brilliant at it and I know there are so many other people in life trying to juggle balance too.
Balance is hard for me. If I’m not working harder I have a tendency to beat myself up for not doing better. Of course it’s not an entirely healthy mental outlook to have in life and many who know me just think I am this bubbly fun-loving person, but my inner demons come out to haunt me too, and I know I am not alone.
The challenge I often run into is that after breaking my neck nearly a decade ago my body is just not as efficient as my mind would like. My body, oftentimes broken and in pain, decides on another course of action when she finds that I am working too hard. I spent the first six years of my accident in and out of hospitals and dealing with medical disasters. So, when life started to stabilize for my body four years ago I decided to double down on working. I strongly believe hard work, passion, and determination are keys to success, but when the limitations of the physical body get in the way – life can come to an undesirable crashing halt. This then causes me to take a step back and re-introduce myself to humility with respect to being appreciative of what I am still capable of doing despite being paralyzed on 80% of my body.
Over the last several months after winning multiple insurance battles, building advocacy campaigns, stepping up social media, and working with individuals on their own personal battles – my spinal cord injured body has gone into complete revolt despite my best efforts. To be fair, I’ve ignored her and her needs. I’ve been selfish with my time with respect to pushing harder and faster while neglecting my body who has been screaming at me to – STOP & SMELL THE ROSES.
I’ve been genetically blessed in regards to never having suffered from procrastination. I can literally sit in front of the computer screen or have meetings for 12 hours a day because mentally I have a unique ability to just keep on going. This served me quite well prior to my accident, but when you break your neck you deal with a whole host of secondary complications that make walking seem like an afterthought.
For example, debilitating burning pins and needles on 80% of my body, urinary tract infections, inconsistent bowel challenges, pressure sores, lack of sleep, etc. If you suffer from any kind of mental or physical disability in life, I’m sure you can relate because everything can be working so smoothly one minute, and come to an abrupt halt the next.
This is me right now. Several months ago I made the decision to switch life careers to advocacy, trying to find a way to make money with that; and whenever switching to something new in life it requires 10,000 hours of practice, blood sweat and tears, and unrelenting determination. I love this and I’m committed to this mission with a big warning sign on the bottom – “Don’t Abuse your Body Ali.”
When I wake up in the morning I tell myself there are so many folks out there who have so much less than I do, need more help than I do, and it’s my responsibility to find a way to help them. This is great and I will continue to do this until my last breath, but it’s so important to take care of yourself, no matter who you are.
I eat healthy, work out every morning, meditate, and then get to work. I recently noticed my hours of sleep are deteriorating, quality of sleep is suffering, and I just can’t seem to get everything on my “To do” list done every day. Unfortunately, I end up beating myself up for this. I know I’m not alone because so many of us suffer from this philosophy that we have to work harder in order to enjoy our lives later. This is so backwards because in so many in other parts of the world where I have lived have a completely opposite philosophy.
In America we seem to “live to work” and in Europe their attitude is “work to live.” A much better philosophy in my opinion. Recently my bowel and bladder issues have been all over the place, pain levels have been off the charts, energy levels have been at an all-time low, and what do I do? I just keep working harder because I think pushing through the pain is going to make it go away through distraction. I know better in my mind, but I have this little robot in my head that seems to ignore all logical advice to myself.
Why do we do this? What are we trying to accomplish?
In My Life? – More! But why? Is it an ego issue? Am I a glutton for self-punishment? Do I love pain?
Of course not, but I still push. Of course I think this is a project for therapist, which I am trying to find a great one at the moment, but this is not just a spinal cord injury or disabled challenge – many of us do with this on a daily basis. I’m not going to remember on my deathbed how hard I worked, but likely reflect back on the people who love me, people whose lives I’ve affected, etc.
When I think about it critically I suppose it’s an issue of self-worth. Do we feel more worthy of love and respect because we are working harder? Are people going look at us differently because we decided to live our lives instead of work harder?
I hope not, but these are such deep seated challenges we all mentally face on a daily basis. The best answer I can come up with is the human condition. We are capable of such incredible things and yet such self-destructive ones at the same time.
I have a very firm philosophy on treating people with kindness, helping others, and being respectful towards people even if they do wrong towards me.
Why can I not do the same for myself?
I beat up this already disabled body and all she needs is a little bit more TLC from me. How come I can’t seem to give this to her? I’m not talking about physical love such as making sure I don’t get pressure sores, working out, eating healthy, but more from a mental love perspective.
I’ve been thinking a lot about this over the last few weeks as I course correct my life; and these are topics so many of us don’t talk about while having a casual latte at the coffee shop just as we don’t bring up sex or bathroom functions. I think these topics need to be talked about because they are just as important for our mental health as well as physical.
I try to be an open book and I really am an insanely positive person, but when I am stuck in bed for days it gives me pause for thought to stop and re-learn how to respect the physical challenges I deal with on a daily basis.
There are days when I just think I am not good enough because my body is not performing as I think she should. I have to remind myself that for the last four years I have been medically stable for the most part, and should be extremely grateful for all that my paralyzed body offers me.
As I’ve been stuck inside for the last several days dealing with spinal cord injury challenges because my body is just shutting down right now, it’s almost like my brain forgot all that she went through for years on end being stuck in bed. I know it’s probably my minds coping mechanism to get me through each day, but my body has recently forced me into a humility mode.
What do I mean by forced humility?
Well, in recent months I’ve taken for granted my medical stability by working more and more. I have generally always found a good balance between my mental ability and physical limitations, but recently I completely ignored my physical body. In the last 72 hours my brain opened a locked compartment within itself to remind me just how bad things can get if I don’t pay attention to her. Well, I’ve written a little apology note to my body:
Without you I would not be here. I have ignored you, and for that I send my sincerest apologies. My intention has never been to take you for granted, but when you offered me the most heartfelt gift of working so seamlessly with me over the last few years, I fear I have taken you for granted. This is my fault and you have abruptly let me know this. I know your intention is not to hurt me, but I ignored small signs and signals of you telling me to take a breath, coddle you, and pay attention to you.
I got the message. You may have stopped me in my tracks, but I know you will offer me the opportunity to make it up to you through gently taking care of you again. I have been derelict in my duties while you have let me have free reign in the town.
We are a unit and a team. My mind will not function without you and so I will work to find a symbiotic balance between the two of us. I know I am not invincible because without you there would be no me. I will be as kind to you as I am to other people, and when I forget this please let me know in a gentle manner.
With Tender Loving Care,
Your Other Half”
This may seem like a silly letter to write, but for those of you suffering from any physical or mental ailments you may be able to appreciate that you would not be you without a fully functioning body. While I may only have a partially functioning body, it’s important to take a step back and appreciate the fact that you can breathe on your own, move your fingers, roll out of bed, hug your loved one in the morning, and simply dance around because you feel like it.
I’ve been thinking about this a lot lately because the many people who have been hit with Covid-19 during the pandemic have gotten a small dose of the fragility of life. Life is this incredible gift and whether you believe in God, the universe, etc. it can be easily forgotten and taken for granted the fact that we are at the mercy of our biological bodies.
Take a moment to think about one thing you do on a regular basis and how that would be affected if it was taken away from you tomorrow. Of course we are going to continue to take things for granted in life, we are human after all, but what makes humanity fascinating to me is the fact that we can continue to stumble, and come back even stronger from it.