The Dreaded White Cane

It had been sitting on a shelf in my house for months now. I would glare at it like an evil uninvited guest. I did not request the cane, but my Helen Keller trainer had brought it. So there it sat. For a long time, I didn’t even venture to touch it. Ewww! The cane seemed to represent defeat and shame. I would be different. Everyone would look at me. How would they understand that I still retained some vision? What if they thought I was faking it? What if people I knew saw me? I was not ready.

My brother (who also has Usher Syndrome) did some training with his cane. He encouraged me to open up and try it. He showed me how to use it in my living room and we had some laughs as I “practiced.” It felt so foreign to hold it- like I wasn’t myself.

However, on Saturday, something shifted. I was running late to go downtown and meet my friends for salsa dancing. I grabbed the cane and threw it into my bag. I felt compelled to take it. In that moment, I feel like I viewed it as a tool and not a horrible reminder of my condition. I thought that perhaps I could skip the line to the club if there was one! When I got to 59th St-Columbus Circle, I pulled the cane out and tried to use it. It was an experiment for myself. I knew I wouldn’t see anyone that I knew. There weren’t that many people walking around at that time. It was a little hard to maneuver the cane over bumps in the sidewalk but I did notice that people moved out of the way. It was easy to put together but it was more difficult for me to pull the cane apart. Those magnets are definitely strong! When I got to the club, there was no line and I walked right in. It was a great night.

I felt a small victory because I decided to try the cane and it was not forced upon me. I want to make my own decisions of how to handle my Usher Syndrome. I know that now I am more comfortable asking for further training with the cane and seeing where that might take me. I don’t feel that I need to use it all the time, but it is a tool that could be helpful sometimes. It’s better to have it available than not. I do value the fact that it would help me retain my independence and safety. I will not be defeated. Catarina- 1. Usher Syndrome- 0.

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9 thoughts on “The Dreaded White Cane

  1. I saw ur post on FFB Facebook page. One word as to why I can’t do it… Vanity. I’m 35 and thankfully the extent of my loss isn’t that bad as of now. I still drive during the day and to b honest… Driving at night is a million times easier than walking at night… I just avoid night driving as much as possible. The cane thing just feels so odd to me because trying to explain that I’m totally fine during the day but not at night… and not that I’m stumbling cause I’m a drunken idiot… That btw is actually an easier explanation that makes for funnier jokes too. I cringe at the idea of using one.. Now.. Someday… Ever really. I just don’t want to be “that” person. Like I said… Probably an over inflated ego and I’ll prob learn the hard way that I need it.

    1. Thanks for sharing your perspective, Tara. I understand where you’re coming from, and you seem really self aware so that is definitely a good thing!

  2. Thanks for the open honesty about this. I work with people in your situation and I think your approach of retaining complete control and decision making of when to use it is great. Well done on seeing it as a tool and aid to independence! Thanks for sharing, I really do appreciate your insight.

  3. Thank you for sharing your story, I have RP and face similar fears about using a cane in public. It has been two years since I began carrying a cane with me at all times. I rarely use it during the day, but it helps in crowded areas like subways. I take every night on a case by case basis, sometimes I’m with friends who I know are comfortable helping me on a dark street and sometimes I need to be an independent part of a group. After all this time and exposure I still feel the shame and self judgement of looking different, but there is no way I’m gonna let that steal my life! My biggest lesson is that I cannot control my emotional reaction, but I have the power to act in a way that reflects my self worth and reinforces my right to enjoy my life by doing the things I want to do. I have a simple method to determine if I should use my cane, I ask myself repeatedly whether I’m causing myself more stress by avoiding using my cane or by feeling the emotions of using it. Take it situation by situation. On a related note, I find that focusing on effective cane usage with all my attention often helps dissipate my worries, this is the mental health practice of mindful awareness in action. Choose your own adventure!

  4. Like you, I have a dreaded white cane. I have autosomal dominant RP which I share with my mother, one brother, and one sister. I also have a brother and a sister not affected. My mother uses her cane constantly. My affected younger sister also uses her cane. My affected brother does not. I recently participated in a treatment trial that had me traveling in airports by myself quite frequently. At the suggestion of my sister I actually went on line and ordered my own cane from Ambutech. I watched several “how to” vids on YouTube about white cane use and techniques. I carried it with me, but wouldn’t use it. My sister laughed and scolded me lightheartedly about refusing to use the cane. See said, let’s practice. We practiced in the hotel room. After a full day of eye tests as part of the study I was glad I had it as my photoreceptors were maxed out to white. I used it to get to the shuttle. I used it that night in the restaurant. She encouraged me to use it as we were checking in at the airport. I noticed people didn’t glare at me when I did not just jump out of their way as they dashed past. I noticed that some people allowed me to go first on escalators without crowding me out. I also had people ask me how I could use it if I could obviously still see. I had to explain about tunnel vision and that it warn others that I might not see them. That it helped me find unexpected stairs and barriers, but that I could still read the signs and didn’t need help. I learned to say that I use it “In strange spaces and dark places” where I need it most. I still hesitate to use it in my home surroundings, because I dislike explaining why I need it sometimes, but have no trouble riding a bicycle. Nowadays, when I am going to be away from my normal surroundings or might be in a “strange place or dark space” I throw it into the bottom of my bag so I can grab it if I need it. I still dread it … but sometimes I am glad I can reach into my bag and whip it out when I feel the need.

  5. Hey – fab story – I thought I woudl shre mine with you that I wrote for a newsletter!

    Here you go xxx

    My Eventful Journey – By Kirstie Thomas

    I have told this story to a few of my colleagues who asked me if I would write this piece for our members to out into this newsletter, so here goes!

    As some of you will be aware, I am registered severely sight impaired and have been now for about 15 years.

    My job as a Volunteer Coordinator with 4SIGHT means I do a lot of travelling around the county, meeting our wonderful volunteers and visiting our clubs.

    Thursday the 3rd of May was no exception. I had arranged to meet a colleague at Three Bridges Station, I planned all the details and printed out the information of the journey and memorised it so I know where I was going. On the morning of the journey is when the panic set in!

    For anyone who travels on public transport, you will know how difficult some journeys are, and this journey from Worthing to Three Bridges was one that always filed me with fear.

    My main concerns, were as follows, the changes that I needed to do at very unfamiliar station, what platform do I go to?, are they going to change the platforms? will there be any announcement to let me know when the train is coming? Will there be any staff on duty? and so on and so forth!

    The journey started fine as usual getting on at Worthing which always has reliable announcements and I knew I had to get off at Haywards Heath to change, and this is where the worrying started!!

    When I was first registered as Blind all those years ago, I was given a white symbol cane ion order to help me get around, and as many of you will empathise, I was not ever going to use this piece of equipment, it would be far too embarrassing!

    I have had this cane in my bag for about a year now and have never once taken it out! It was a huge achievement even to have it in the bag! Anyway, on this journey I decided, after much deliberation to use it! I was concerned, and thought I will use it quickly when I get to Haywards Heath if I need to and then put it away very quickly!

    The hardest part was getting it out of my bag, it took me a full 0 minutes to pluck up the courage and finally removed it as we pulled into the station.

    I was pleasantly surprised with how easy it was to carry it in my hand, it was not fully extended, but it was clearly visible. I was lucky, as I made my way to the next platform my train was announced and I could put the cane back in my bag! Phew!

    As I had already been this brave I decided there was nothing to stop me using it on the way back, so I took it out at Three Bridges station.

    The journey from Three Bridges back to Haywards Heath was a bit scary as there were no announcements on the train itself, I had already worked out from the faint announcement on the platform that I needed to get off at the second stop, but this does not stop you panicking in case they change the service and the announcements are wrong!

    When I got off the train I looked around helplessly for an orange jacket to highlight a member of staff, I spotted one close by who was approaching me, and I asked if the platform next to me was the one I needed for Worthing, he said yes it was, and then proceeded to ask me very kindly if he could help me with anything at all. I said d no thanks and then walked off towards the platform wondering why he had been so kind. As I looked down to my bag to check my journey planner, I realised I was still holding the cane in my hand. A big grin appeared on my face! I continued to hold the stick in my hand for the rest of my journey even though I was on the right train and had no longer need of it, I felt hugely proud of myself, and phoned my husband and Mum to tell them so!

    This journey helped me to realise not to be afraid of the white cane, and certainly not to be embarrassed with it, I got the help when I was scared and this made me feel so much more comfortable and confident about travelling to places I am not used to in the future.

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