Traveling with a disability: Lisa's Train Journey (Part 2) 🇨🇦🚆
In my last blog, I shared the planned version of my trip. Now I will share the real experience. What do they say about plans again? This is a longer blog, but it captures my feelings - good and bad - about the ups and downs of “accessible” traveling.
The journey begins
It was a nice quick ride to my first stop - Toronto. I was given lots of help to get on the train, and I talked with my seat mate for the one hour ride. I chose to wait to go to the washroom until my “layover” in Toronto, pretty sure I'd find a good wheelchair accessible washroom.
Image: Pretty blue water of Lake Ontario alongside the train tracks.
Getting off at the huge main train station in Toronto enabled me to get on my feet for a bit and then into my chair where I could roll for a while, go to Tim Hortons (lunch), access an accessible washroom (much easier and more secure than on the train) and just generally move around a little bit. I had one hour to kill. I probably would have gone batty and been very stiff and uncomfortable if I had to stay on my train for 6 hours!
Hot coffee in my own mug
Tim Hortons was very accommodating. I gave them my Contigo and they poured my refill right into it. I did not have to transfer the coffee from their cup to my Contigo. It would have taken more time, and it might have been a bit dangerous, so I was very grateful for the way they helped me. I had time to spare even after going to Tim Hortons and the washroom.
On the way to Toronto, they adjusted the seating that I had been assigned to on my ticket and that made it much easier for me. I was close to the washroom, and I was in a seat where I had some empty space in front of me and my wheelchair was right in front of me. Didn't need to be folded down. And my backpack was laying on its back on my wheelchair's seat. It was all good.
After switching trains in Toronto, they did the same thing. They adjusted my seating to an area of four seemingly leather seats, and they had nice tables. It said "crew only" in this section. They moved the paper sign, and I sat down in one of the seats (obviously the trains I have been traveling on were not full!). The washroom is quite close to me, but I am a little nervous, and I will use it only if I really must. My wheelchair is in the next car.
I couldn't use the cup holder, my Contigo doesn't fit in it. So my Contigo is in the backpack pocket, which is very easy for me to reach whether I am sitting in my wheelchair or whether my backpack is beside me on an empty seat like now.
The trains have been relatively easy to get on and off. Still a little difficult though. There were grab bars and also there were VIA employees' arms offered the whole time as I needed. And they did not assume that I needed help, but asked if I needed help, and provided it if I needed it. When I got onto the train both times, the staff helped me as needed to get to my seat and totally took care of my wheelchair. And, at least in Toronto, when I got off the train, my wheelchair was waiting for me right where I got off the train car.
I tell you! VIA customer service has been nothing but STELLAR. Whenever I asked anybody for help, they knew what I needed and what I wanted and how to get there. All with a smile.
The snacks that I brought? I have not touched them. Gerry & I always (or I always) pack too much food (or even food at all) when it's not necessary. I mean, I had breakfast at home, I had a bagel and coffee for lunch, and I don't know what's going to be happening for dinner. But all of the things I brought are non-perishable items such as protein bars and the like so they won't spoil.
On the train, while there were not grab bars, I probably would have been okay holding onto the seats going down the aisle. And the tables are completely solid so I was satisfied enough with their solidity to hold onto them as well.
A trip to the washroom
I just made it to and from the washroom across the aisle by myself, holding on to quite a few things that were available to me. There were lots of grab bars IN the washroom. But at the same time, it felt similar to airplane turbulence while I was in the washroom. I made good use of the grab bars! I know that help was available, but I'm a pretty stubborn and prideful person. I have no trouble asking people to get up from the seat that is designated for wheelchair users on the bus, or for directions when I need help or anything like that. No problem. But if it's something that I think I can do myself, or try to convince myself that I could do it myself, I'm all over it by myself. I know, I know.....
Trip notifications - sign up for them when possible!
I got a text message from VIA rail indicating that our train could be 35 minutes late because of a fire near the tracks. They said that if you were currently on that train, which I am, that you will be updated by VIA employees. I haven't heard anything yet. I would really suggest signing up to receive text updates in real time. I never heard any kind of notification from the staff on the train, but when I asked an employee, they confirmed that we were going to be 35 minutes late arriving at our destination. I'm glad I asked, and I'm glad I signed up for text notifications. I was disappointed with not hearing any kind of notification on the train. That's the only time VIA has not totally exceeded my expectations.
I have not used my sleep pillow at all. Only 1h15m left on the train. I see a few foam (or whatever) pieces, though. The pillow may not be coming home with me.
Getting off the train was more challenging than getting on it
And I really do think that was because it was such a long tiring day, and I didn't sleep at all in the afternoon like I usually do. So I think it's a good idea to take into account that time of day and how much sleep you have gotten or effort you have made in terms of how you will be feeling. The train arrived 35 minutes later than scheduled (I had called my friend to let her know so that we'd be on the same page). It was really cool when I got off the train and the person who held out their arm for me was my friend Cindy. It was really nice. But I really do need to remember to take into account how tired I might be and how much effort I need to be making at any given point in the day and especially as the day progresses. I will sleep well tonight!
My friend Cindy and her neighbour, Dave, picked me up from the train station. Dave was so gracious. My hosts Cindy & Mark do not drive.
They had both worked hard (and I know it was very hard on them!) to be thoughtful of my needs. Upstairs - two grab bars installed in the hall between "my" bedroom and the bathroom. A door on its side across the top of the stairs, which was also in the short hall between "my" bedroom and the bathroom to prevent me from falling down the stairs.
Downstairs, I could access the living room, dining room, and kitchen, and another hall to the downstairs bathroom. They had made clear paths for all those rooms. They were not really roomy but I could get through.
Getting in and out of the house was very challenging, two steps, two feet apart and I was always having to THINK about finding secure things to hold on to. But a ramp that they had outside was great.
BUT THEN ....
On my very first night here at 2am, I woke up to go to the washroom and promptly fell trying to figure out getting out of the washroom and back to my bedroom. Again, I was always having to THINK about finding secure things to hold on to. My back got quite hurt when I fell. Now not able to do the stairs, my bed became two mattresses in the corner of the living room. Grateful for a bed, but I miss some privacy.
Nevertheless, it was a great visit! As is usual whenever Cindy and I get together. Lots of chats, lots of talks, some deep, lots of card playing, a little bit of helping in the garden, and lots of naps. That qualifies as a great visit to me, especially with my best friend of 35ish years. It's worth all of it to have a good visit. I'm going to pay for it because I fell, but it's worth it. Honestly, I don't know if I'm going to be able to come back here again for a visit. It's just too dangerous and not safe. That's what I'm thinking right now, and it makes me very sad, but that's not uncommon for travelers, especially disabled travelers.
My back is still pretty bad (six days later). Any time I have to get out of my wheelchair, bed, washroom, in or out of the house...any twisting, bending, or reaching and the like is very painful.
Due to this injury, I called the VIA train station one day before my departure and told them that I would need help from the lift to get into the train. They said that was no problem for all three of the stations that I will be at tomorrow.
Note! If you have any difficulty on steps, you can always ask to use a lift into the train. Didn't need it on the way here, but will need it on the way home. Take advantage of the services that are available!
The trip home is going to be much more difficult than coming here because of my back. I can't apply much or any pressure or movement to my left leg, lots of pain results, and I am a pain wimp! Honestly, it's a bit scary. Mostly because of the fact that I don't really deal with pain with SCA [spinocerebellar ataxia] at all except when I fall like this time. I am excited to get home and to see Gerry again and vice versa. I am so grateful for the lift to get me onto the train, and I really hope they change my seats again to first class where they have hard solid support tables that I can use for support when I go to and from the washroom. I'm going to need help from another person. I have no problem asking people for help at all. But if I can, I will wait until Toronto’s main station and a wheelchair accessible washroom.
Pack for the weather (but also your transportation…)
The weather for my trip back calls for sandals, but neither DARTS nor Para Transpo [accessible transportation services] will take me with sandals. Must be closed toe shoes. I knew the weather was forecast to be hot all week and so that's how I packed. If the weather had been off at all, I would have been very grateful for my jeans and hoodie and jacket. Packing tip: wear your biggest/bulkiest/heaviest clothing (that is appropriate) when you leave home so you don't have to pack it - although this might mean stuffing your bag later.
Note! To a certain extent, everybody who is traveling needs to take different weather into account. Certainly disabled people need to be extra vigilant. Too much clothing - and being too hot - or not enough clothing - and being too cold - can all cause pain and chafing and difficulty. Be comfortable and be prepared.
The train journey back home
Getting to the station
My ride showed up at 9:45AM, and I was driven to Fallowfield train station by Para Transport. I paid $10 because we're a little bit out of the zone. But pay attention! This gentleman did both Para Transport and taxi service. I could see the taxi meter, and the taxi ride would have cost $85! Look into special transport services when you are traveling!
“Don’t let go of that friend!”
Another friend showed up at the train station in Fallowfield to see me off, two hours before my train departed and brought everything except the kitchen sink! She brought snacks and Timbits [which some of you know as donut holes!] and a sandwich from Tim Hortons and water, and PAIN RELIEF GEL, etc, etc. I didn't have room for lunch, but still the water & Timbits & sandwich I'd declined ended up on the train. I HAD to eat them, right!? Although I did not drink the water, because I did not want to have to get up and go to the washroom. One of the train personnel told me, don't let go of that friend!
Image: A water bottle, coffee travel mug, Timbits (donut holes) and a brown bag on a table on the train.
Travel Tips! Bring a first aid kit of things you could need! And if you are traveling by yourself, notify your friends and family of your itinerary and update them as you go, as a safety measure, but also – you never know who's going to show up where you are with Timbits and other goodies
The man at the Fallowfield train station VIA customer service desk was very accommodating, and they changed my seat again to one that is much better for me. Everybody was very helpful getting me on board using the lift and just taking care of me.
Note: Sometimes all you have to do is ask politely and with a smile on your face. People might say no, but in my experience, people have been able to accommodate my wishes and desires almost every time – and definitely my needs.
At first the VIA employees said that my backpack wasn't secure enough behind the seat, but then they put the wheelchair back and seat cushions on top of my backpack; so they will remain until we get to Toronto.
Image: Lisa's wheelchair cushions piled on top of her bag behind a train seat.
Get to know the personnel on board!
The Onboard Service Manager talked at length with me about safety and what I might need in an emergency and was so helpful. She even gave me her phone number, in case I need help! Especially help to go to the washroom, which is just across the aisle from me.
Trying to sleep didn't get too far. The train can be jerky on the tracks, and it really hurts my back. The neck pillow seemed to be okay, but I really can't sleep right now unless I'm on my back.
As you can see, I have filled the - what I now call the "wine bag" for its purpley red color - to its limits. At some point I despaired of being able to close the zippers, but I pulled the sides together and made it work. The pulls on the zippers made it easier, not easy, for me, but easier.
You could say that the pocket on either side of the bag barely (and very snugly) holds a bottle of water. I have mesh pockets on either side of my bigger wheelchair backpack, and I can reach behind me into either of those pockets while I'm sitting in my wheelchair (for my coffee cup or my phone). I *might* be able to pull a bottle of water out of the “wine bag” pocket by reaching behind me like that, but no way would I be able to put it back in if I were seated in my wheelchair and the bag was hanging on the back of my wheelchair.
Images: Left: Lisa's "wine bag" - a purple crossbody bag - filled fully and sitting on a train seat next to her. Right: A close-up of a standard plastic water bottle in the fit snuggly into the side pocket of the purple bag.
I'm now on the train from Toronto to my final destination
After a "layover" in Toronto, I'm back on a full/crowded train. I didn't realize how much I liked the quiet trains. And I am not in the car or seat I was booked for because of the configuration of the final station, which is a relatively small one. I'm ticked off. I had the same seat booked for all four trips!
The Onboard Service Manager on this train isn't as helpful. I'm not inclined to ask for help to go to the washroom, which is just across the aisle but also 1.5 rows behind me. She said, "I put you in a window seat with no one beside you" as if that was an amazing thing she did, but that doesn't help me nearly enough. I don't feel as heard. It's not her fault. Last week I could have sat in my booked seat. But because of the configuration of the train station where I’m getting off and because I fell and hurt my left leg and because it's a short ride with only two staff who can't really help me with a lift all the way and because I can't walk through the train car to get to my booked better seat – here I sit. And because it's a shorter train ride, I'm sure there isn't any drinks service. It’s only a 40 minute trip she says! Sometimes 40 mins is HUGE! This seat is uncomfortable, not much leg room, my leg hurts. [Update: Drink service came by five minutes before my stop 🙁]
Can you help me get down on the lift? The VIA employee customer service person on this train said yes but also, "Just wait for me to come back and get you. I have to do this and do this and do this first." I felt like I was a nuisance. It took me a while to figure it all out with the lift. Fortunately, one of the two VIA employees on the train put my wheelchair together perfectly.
Travel Tip! Be careful about how heavy your things are. Because of my injury, I did not end up carrying all of the weight in my backpack (on my wheelchair) and in my “wine bag” (on my lap) for more than 30 minutes total. But having all that weight and trying to roll would normally be impossible. My wine bag on my lap weighed about 8.5 lbs (not to mention just having bags on your lap makes wheeling very difficult). And those things would strain muscles, for sure. I was going from the same weather to the same weather basically. If you're packing for a trip to different weather like really hot or really cold, then things will be really different and a suitcase is probably in order.
Images: My wheelchair backpack alone weighed about 14.5 pounds and could tip my wheelchair backwards onto its safety wheels (left). The bag was packed full (right).
There is no place like home.
There is nothing like coming home! Of course, there is nothing like leaving home to go somewhere.
But it's always nice to come home, sleep in your own bed, have your grab bars, supports & support people, etc. Using those things in your own home is like muscle memory. You don't have to THINK about where everything is or where you can reach or what will support you. The constant thinking is draining and tiring!
I think that the above statement in bold can be the new "it's nice to be home and sleep in your own bed" version for disabled people!
I find it more and more draining as my condition progresses, to be in a different environment where I actually have to THINK about all those things that I just do (because I know I can, safely) at home.
And I find that sometimes I feel uneasy in somebody else's home, because I am unable to help without all of the above supports – and it's not safe. I don't like that feeling. I always want to be helping and contributing and not just literally sitting there in my wheelchair unable to do much more than talking with the person who's cooking or whatever.
How do you travel alone, when you are not driving, with a suitcase (or more than one suitcase)? Think planes, trains. At what point is it asking too much to rely on the help of service staff? IS there a point where it becomes too much to ask of service staff? IS there a point where you just have to have somebody with you? I would love to hear your thoughts in the comment section.
Thanks for reading my travel blog!
Lisa blogs about her travels and reviews products for Day Undefined. Meet our team.
Here is a list of items that Lisa mentioned in this blog: