Fridays with Phil

No man is an island.  In one form or another, we all need help.  Isolation, as tempting as it can be, will not achieve the purpose for which you have been created.

Your life: the good, the bad, the ugly, can help someone else in their journey.

I wonder what your journey could teach me?  I hope I will always stay open to that.

I wanted to write today’s blog to help you.  It’s also written to help me and people like me.

You see, when I was first diagnosed with Motor Neurone Disease (MND) or ALS, I was not familiar with disability.  I knew of it, I had touched it, but I hadn’t been immersed in it.

Four years on, I wouldn’t say I am an expert but I would say there are things I know now, I didn’t know then.

Those in my world would know I have started using a powered wheelchair (PWC) more often than not.

My leg muscles have progressively weakened over the past four years, but at a slow rate for which I am thankful.  My neurologist reminds me rather bluntly, “you should be dead.”   Well, I am not dead and I am very happy about that.

I have maintained by upper body strength, but in this part of my journey, it is difficult to walk, to balance, and there is a high risk of falling.  One friend in Queensland with MND at a similar stage as me, expected to live at least another year and a half, fell, hit his head and tragically passed away.

That I have started using a wheelchair may come as a surprise to many.  Especially those who haven’t seen me for a while and when they do I look physically ok.  I’ve had someone say, “You don’t even look like you need a wheelchair!”

There is no way I would be using one if I didn’t need it.

If for no other reason than I love fast cars and these things don’t fit inside those.  I rely on my family to help load and unload me and my chair.  That aside, it’s the right thing to do.

Using my wheelchair is not giving up.  It is actually the opposite.  I use it to fight on, to stay connected, to have independence and to live life to the full.

Do I wish I could walk like everyone else? Yes.

Do I wish I did not have to use a wheelchair? Absolutely.

Am I giving up? No. I am trying to stay alive!

Can I walk? Yes, for short distances.

Should I walk? No, not often.

I can walk short distances but I am safer in public to use my wheelchair.  Muscle fatigue can cause me to be off-balance and at risk of falling.

My wheelchair has thousands of dollars worth of support and cushioning to support my core and backside so I’m more energy efficient and comfortable in the chair when out and about.  By using the chair, I’m able to conserve energy for the more private necessary walking, personal care and even driving every now and then.

Recently I was travelling by plane with my wife Lenore.  While waiting for the gate to open, a flight attendant came towards us.  She glanced at me in my chair and then proceeded to ask Lenore, “Will he need assistance to get on the plane?”

Their conversation about me went on while I was sitting there.

My wife is now an expert at this situation, and is helping direct the person speaking back to me when I am the topic of conversation.

Just because a person is in a wheelchair doesn’t mean they don’t exist, cannot comprehend, speak for themselves or make wise choices.

On the other hand, I was in a store, Universal Store in Charlestown, and the young shop assistant walked confidently up to me and asked, if she could help move anything around to make it easier for me, to please let her know.  I was so impressed.  She got it.

In brief, some of the things I found helpful in navigating this new part of the journey and hopefully has made me more aware of others in chairs too:

1. Speak directly to the person.
2. If you are in a moving crowd, be aware the person will need to stop the chair before they can shake your hand.
3. Treat the chair as an extension of the person. Touch it as you would someone you were speaking to, but don’t lean on it, hang things on it or take over the controls without checking first.
4. Focus on the person, not the disability.
5. Always ask if the person would like assistance and accept their answer.
6. Express yourself naturally.  It’s ok to say “let’s go for a walk” or “let’s walk to the café” even if the person can’t “walk” – just be yourself!
7. Keep your feet safe and clear.  Chairs are heavy and the tyres are solid. The person driving it can’t see behind them and doesn’t want to hurt you.
8. View the chair as a means of freedom to move independently.
9. It’s ok for children to notice and ask questions. Adults discouraging a child from talking can be more confronting.
10. If talking for an extended time, and the person isn’t able to raise their chair to eye level, find a seat so as to be at eye level with them.
11. I hate the idea of blocking someone else’s view due to the size of the chair.  From my experience, people in chairs are more than ok with being asked to move if they are in the way.
12. If you want a person in a chair to move forwards, backwards, or out of the way, just ask as you would an able-bodied person.
13. Don’t think you can outrun me, I can go 10km/h for 70km 🙂

Thanks so much for reading this. Means a lot.

Love,
Phil