My fight for more home care is a fight for a lifetime of freedom

This First Person article is the experience of Alex Lytwyn, who lives with cerebral palsy and is an ambassador for Manitoba Possible (formerly the Society for Manitobans with Disabilities), a non-profit that provides services to Manitobans with disabilities. For more information about CBC's First Person stories, please see the FAQ.

Every day I fight to be myself. It may be different than the way society likes to portray a person with a physical disability, but it is my way.

This means that while I need help with most aspects of life, I do tasks as independently as I can. It's an extremely rewarding experience. That includes things as simple (yet personal) as using the washroom — even though it always takes a tremendous amount of effort. 

And that's exactly what I was doing on a recent Sunday afternoon, when my life changed in an instant.

I lost my balance and fell out of my wheelchair. Hurtling toward the floor, the thought of "I am going to feel this one" ran through my mind.  

My helper heard that I was in distress. She ran in to grab me, but it was too late. Just by the edge of her fingertips, she missed me. My head bounced off the floor and my eyeglasses broke into a thousand pieces. More scar tissue to add to the collection.  

Little did we know, though, that the situation was a lot more intense. 

All my body weight had been put on both legs, while both of my feet were still strapped to the power chair's foot pedals. Pain was now pulsating through my entire body. 

I then waited an excruciating hour for the ambulance to arrive. Once at the medical centre, X-rays revealed that both my legs were broken. 

The next day, I was flown to another medical centre for surgery. Like with any medical procedure, I was given basic tests to check my vital signs. All involved were shocked to learn my blood pressure was dangerously high. 

To help me achieve these life improvements, I need more home care staffing hours. And I can't get them.- Alex Lytwyn

Once this was discovered, more tests were done. It was then that my very rapid heartbeat was uncovered as well. This, sadly, was not my only issue. Two blood clots were also found in my lungs. 

I talked to a lot of different doctors. During this time, both my mental and physical health were falling apart. My anxiety was extremely high. Lying in my hospital bed with two IVs in my arms, taking all kinds of new medication, I could not help but wonder if my life's fight was falling out of the light. It felt like complete darkness was surrounding me. 

Discovering 'new self'

Surgery took place days later. After 11 days in hospital (and two ambulance rides) I am now home and beginning to discover my new self.

Wearing walking boots, in extra pain and discomfort, has given me a lot of time to process life. It has become clear to me that I need to make some big changes. I need to exercise more, lose weight, get more rest, eat a healthier diet and work on my mental health. 

And so I know now that 10 hours per day of care (which I currently receive) is not enough —  never mind trying to rehab from two broken legs, two blood clots and everything else that accompanies cerebral palsy.

But the more I think about it, the more I realize that I am truly between a rock and a hard place. Because no matter what, it comes back to one major sticking point: to help me achieve these life improvements, I need more home care staffing hours. And I can't get them.

I have met with my health authority department heads and my MLA, had my situation covered in the news, spoken with disability organizations, talked with my MP and spoken to the Manitoba Health appeal board, and I have been denied — twice — for any hour increase.  

All answers have been, "We feel for your situation, but there's nothing we can do for you."

All the talk is about inclusion and equality. But it's incredibly difficult for me to live life to the fullest.- Alex Lytwyn

I have no more options to explore. All doors have been closed. I am tired. 

Nowadays, all the talk is about inclusion and equality. But it's incredibly difficult for me to live life to the fullest without 24-hour home care. 

My life will continue to be an everyday nightmare. And it will not be mine. Rather, it will be controlled by those who cannot see my soul's needs.

But this will not stop me from standing up (even with two broken legs) and showing the world that life is for all. This will not stop me from doing my best to prove my life's worthiness.  

All I asked for was an equal chance to achieve my goal of living as free as possible.

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