picture of Ali and mom in bed together :-)

I preface this article by saying first and foremost:

  • I am very Quirky.
  • I find humor even when I’m chained up to a literal hospital bed in China after spinal surgery.
  • I find hope where I didn’t know it existed.
  • I love to help other human beings through incredibly tough times, offer a change in perspective, and find incredible joy in making people smile.

This is not to say that life as a quadriplegic paralyzed from the chest down with paralyzed hands and fully dependent on another human being for my physical survival does not take a toll on my mental psyche at times.  People often comment on my incredible resilience and strength, and while it’s true, I am also human.

I would say I can probably handle more than most people, but I have breaking points as well.

2023 has been one of the best and worst years of my life to date.  Professionally life is taken off in these incredible directions, especially with speaking, and I’ve made some amazing friends along the way.

Ali in wheelchair at ALS conference as keynotespeaker with blue top with white collar and black pants

Personally, things have been rockier than they have been in many years and I don’t really feel that it’s appropriate to comment on too much of the personal because it involves other people.  There are always two sides to a story and I certainly would not want to share just one version here because everyone has their own opinions.

However, I will tell you on the personal side on the care front over the last few months life has fallen apart a bit.  There are a number of reasons for this, but I will tell you that over the last month or two I’ve had some great people step in to help take care of me and pull extra weight, but I’m also in a type of crisis skeleton crew mode with my physical care.

My gorgeous 77-year-old mother has pitched in more than I should ever ask another human being too.  Thank goodness she is healthy and full of beans, but I struggle with feelings of guilt on a daily basis with this.  This is my burden to bear and I just want my mom to be my mom, but she is so much more than that.  For those that know me and my mother – you know exactly what I’m talking about.

picture of Ali and mother dressed up in bright blue colors at ALS conference

The thing about being a quadriplegic and having your life survival physically be dependent on another human being is that things can go so smoothly for years and then all the sudden life comes to an abrupt halt.  I am in that phase at the moment.

I am doing the very best I can with the circumstances presented in front of me and I have had to scale down my life in different areas to compromise because this is life.  Living a life with a significant disability means adapting to the unknown, consistently making a new plan of action, and having plan A-F ready to go at a moment’s notice.  This is no easy feat and it takes, not only a lot of logistical planning, but a type of mental willpower in order to not fall apart.

What’s the Alternative?

What if I do fall apart?  I am only human.  However, if I fall apart and don’t try to organize my care or my life who’s going to do it for me?  Many of us are blessed with family and some of us are not.  However, these are our lives.  Life is clearly not always easy and there are still beautiful moments in between the horrific ones; so, we have to take responsibility for the hand that we have been dealt.

I used to think everything happens for a reason.  I was speaking with my therapist a few weeks ago and she said “I don’t think you necessarily broke your neck for a reason Ali because sometimes bad things happen to good people.  Plain and simple.”

She then went on to say this: “it was just bad luck you broke your neck, but what you have made of your life since and how you have shifted your life to help other people because of what happened to you – now that’s a reason.”

image of Ali from waste up in wheelchair in black-and-white with head tilted back laughing

I’ve really been thinking a lot about that.  There are so many cruel and unusual ways life can be wildly unfair, but it is what we make of it and how we overcome these obstacles afterwards.  As I write this it almost feels cliché because we hear this all the time.  It’s no different than saying let’s make the most of each day because we never know what’s can happen.

Intuitively our intellectual brains know this, but emotionally there’s a disconnect with really making the most of each day.  This requires consistent effort and mental exercises on a daily basis to really walk the walk and not just talk the talk.

Whenever I get up on stage to talk about seemingly insurmountable challenges and overcoming them, I would certainly be a hypocrite if I did not put this practice into my own life.  I am doing that right now even in the midst of care challenges, medical news that would probably make your head spin, and a whole host of other personal issues in my own life.

You know what though?  I believe it.  Just as I create a routine to work out and eat healthy each day, I also create a mental routine of positive self-talk or realistic self-talk as well.  There are some moments or hours or days that I fail because were only human.  However, I believe in consistent growth in my soul and in the fabric of who I am as a human being.

image of Ali and wheelchair at Disneyland with Disney years on in bright neon top and black pants

I know I will get through this challenging time, but, in all honesty, if I didn’t have my beautiful mother with me right now, I’m not sure what I would do.  I know there will come a time in my life when she will not be there to back me up and I know heartbreak will ensue.  I also know that I am a strong independent human and I will somehow figure it out.  I don’t know how you, but I have to believe it.  It’s amazing how when you are faced with the seemingly impossible that the essence of human resilience generally comes through the last moment.

I want to share with you how my beautiful mother has helped me lately because this is really an homage to her being one of my rocks in life.  Here’s a video of her stretching me in an adapted way of how we transfer in bed when we are alone together.  We make it work, we adapt, we overcome, and we thrive together.

Whoever may be reading this, you are stronger than you know, and even when hope seems dismal – it’s always there if you look for it or choose to change your perspective

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