I’ve Had a Stroke…Please Believe in Me

For my last blog about stroke, I’d just like to address in general the importance of care teams keeping a positive attitude about patient progress and prognosis.

For us, your patients, recovery can never happen quickly enough. Getting back to some semblance of life as it was before can’t happen quickly enough. But, as I’ve talked about in other blogs, there are other emotions surrounding that drive that complicate matters:

  • Uncertainty around how much function we’ll regain
  • Fear about what the future is going to look like, and of navigating a world that’s not really designed for people with disabilities. It’s getting better, but accessibility is still a major issue, especially for people in wheelchairs.
  • Anger and sadness over everything that’s changed. People who have gone through a stroke go through a grieving process. They grieve the life that they lost, and dreams that they feel may now be out of reach. If friends stop coming around as much after the stroke, they’ll grieve the loss of those relationships. They may have to grieve the loss of a job. It can be tough to deal with.

Toss the neurochemical challenge of emotional lability into the mix, and it’s very difficult to stay positive about recovery. The care team needs to strike a balance between keeping the patient’s expectations for recovery realistic while at the same time conveying that a return to a meaningful life at any stage of recovery is absolutely possible.

The staff at Penetanguishene General Hospital, where I spent the first three months of stroke rehabilitation, excelled at striking this balance. Right from the start my program taught me the skills that I’d need to live one-handed, as I did exercises to rehabilitate my weak hand. I practiced writing, eating, self-care, and eventually cooking on a small scale. And I learned later that the staff there expected me to recover very, very little use of my left arm and hand.

Sarah Levis But no one ever said that to me while I was there. I was under the impression that I was practicing learning to live one-handed because I needed a way to function during what could potentially be a long recovery journey…but not because there was little hope of ever getting any function back. If I’d heard that, with all the emotions I was already experiencing, I don’t know if I’d have seen much sense in trying to recover. After all, during my first night at PGH, I apparently yelled at a nurse that everyone should just give up on me, because it was obvious that I was never going to walk again. (I don’t remember this, but it had been a terrible day. The transfer from the hospital in Toronto had been difficult, and I’d only stopped throwing up from sheer nerves around dinnertime.)

Should care teams lie to clients about prognosis, then? It’s more about lessening the focus on prognosis. Awareness about the effects of stroke, about disability in general, and about the needs of people with disability becomes more and more widespread with each passing day. The focus for the care team should be on each member using their unique strength and skill set to build the client’s capabilities and capacities as much as possible, always working under the assumption that it’s possible for everybody to have a fulfilling life.

I wanted recovery very badly and I worked very hardly for it, and even then I wasn’t easy for my care team to work with sometimes. I never meant to be difficult. I think that very few people who have had strokes actually mean to be difficult patients.

I know that our needs seem difficult to anticipate. Sometimes we need you to be gentle. Sometimes we need you to push.  We really need you to listen.

But, above all, we need you to believe that there’s a reason for us to do all this work, or to at least pretend that you do. Because if you don’t believe there’s a reason…why should we?

Sarah Levis
Owner/Operator of Running Steps – A Girl With The Cane Enterprise
Twitter: @GirlWithTheCane