🚶#SpoonieSeren: In A Stick-y Situation🚶
Updated: Jul 31, 2019
Living with a rare and life-long illness is tough - no doubt about it. If you have vasculitis, you know as well as I do that you can wake up one day and have 14 different issues popping off around your body. Luckily, there are aids available to people like me if they're needed, such as: medication, counselling, and physical aids such as walking sticks and mobility scooters.
Of course, this statement comes from a place of privilege - I have money, access to free healthcare and have a great support system, so when I say 'people like me', I really wish I did mean everyone.
About two months ago, I decided to start using a walking stick. Winter is really tough for me, and so I got to the point where couldn’t deal with how challenging it felt to walk short distances without support. I get tired and achey quickly, so my stick (named Gertrude) entered into my life one rainy Saturday afternoon.
Now, I'm incredibly lucky to have access to Gertrude - she is really useful to me when I'm fatigued and hurting, and I'm really grateful for the accessibility I have with her. However, disabilities and aids are always complicated, so I thought I’d sum up all of the various conflicting feelings I’ve had about her presence in my life, and share some experiences, too!
1. Initial embarrassment - IS EVERYONE JUDGING ME!?
I can’t speak for everyone, but a large reason why I didn’t get a walking stick at first is because I was embarrassed to illustrate my illness. I don’t know why. I’ve never judged any walking stick user for needing help, so why did I judge myself?
In all honesty, because a lot of people don’t understand invisible illness, I thought that people would think I’m making a huge deal out of nothing. I feared being judged, and having what I deemed to be a vulnerability on display.
Now, just the other day I had a taxi driver make some really rude comments about my disability. I was walking to the car with a rucksack, a laptop bag, a travel mug, and Gertrude. He told me, from the inside of his car, to "be quicker, because it's cold." I explained that I couldn't physically be quicker when negotiating everything with a stick. He said, "well you'll have to be quicker when you get out, it's far too cold." When I didn't respond, he asked "did you hurt your ankle or something?" I responded, "I have a disability." Really, I didn't need to get into it. To top it all off, he said "oh, I hoped it would be something cool, like base jumping off a skyscraper or falling over when drunk."
Like, wow, I'm sorry that my disability isn't cool enough for you. Clearly you're confused at how a 21-year-old can have a disability, but we're in the same boat for thinking what I have isn't cool. It actually SUCKS. (Everyone I told about this was INFURIATED. Which was reassuring!)
On a whole, getting a stick was a big obstacle I had to overcome, but it felt incredible when I did. I do get stupid comments like the above, but I'm able to rise above them. Learning to ask for help is something to be really proud of, and having my stick has really helped me this winter time.
2. Subsequent relief - PHEW, it’s all good.
The first few days of using my stick, I could feel everyone looking at me. It was humiliating. ‘Why is she using that?’ I could feel them wonder.
In actual fact, I couldn’t accurately tell you how much of that was harmless curiosity, my own insecurities projected onto others, or actual judgement. Realistically, I really think it was a split between the first two. Because a stick feels like such a permanent thing, in comparison to the temporary excitement of a crutch or a plaster cast, it felt like I was making a dramatic statement. I wasn’t, but it’s natural to feel paranoid in those instances.
The loveliest thing about it was that those who I interact with on a daily basis were lovely to me. They complimented Gertrude and wanted to learn more about her. ‘Where did you get it?’ ‘I love the pattern, it’s so pretty’ ‘it’s so cool!’
3. Rude people in crowds are the worst. REALLY.
As much as I am lucky to be around such wonderful and supportive people, strangers can be less understanding. In busy crowds or supermarkets, I’ve had people push and shove and nearly bulldoze me over. It’s rude, thoughtless, and it can genuinely a bit humiliating. Please give people like me space if you're guilty of this!
4. Laces will tie you up in knots.
Need to tie your laces up while using a stick? Forget about it. Sticks, for the majority of the time, do not like leaning against things like walls. I wish Gertrude would cooperate, but she really doesn’t like the attention being away from her. She will fall and clatter and smack against the floor, basically throw a tantrum, and everyone will look. It's not even like I can use her as a crutch when tying my laces, so it’s all a bit awkward and annoying at times. Top tip: make sure you're sitting down!
5. Getting out of a car = ANNOYING.
I really need to practice the art of this.
Getting out of a car is so awkward. You need to get the stick ready, your body in a position to get out of the car, and often with limited space. The amount of times my stick has fallen straight out of the car and onto the floor is mind-bendingly frustrating. Practice does make perfect, though!
6. Doors aren't always opening for you.
Opening a door and walking through it with a stick is more difficult than you’d anticipate. One hand is relying on a stick for stability, whilst the other is exerting pressure and trying to handle getting through the door logistically. It's hard to explain, but you can trust me when I say it's awkward.
7. Staircases? Oh lawd.
Now, staircases are REALLY hard when you have mobility issues. If I was in a position where I needed my stick constantly, all-year round, I don't think I'd be able to use them. However, I'm in a lucky situation that I can face them if I pace myself, take it very slowly, and breathe deeply.
Now, with a stick, it's a lot easier. I'm able to distribute weight evenly between the bannister and Gertrude, so at least that's a plus.
8. People will understand. Really.
Back to my initial point - people really will try and understand. By making the invisible visible, you’re showing everyone that you do have a disability and that you aren’t fully abled. Obviously some people will be judgemental, but those closest to you are far more likely to open a dialogue with you and appreciate that you don’t have the same capabilities as others. It’s really nice when other people are politely inquisitive, as it shows they care and want to learn more about your disability. I genuinely don’t find it rude when people ask me about it - inquisitiveness is natural and I’m more than happy to speak about it. Of course, that doesn’t mean everyone is, though, so approach this at your discretion!
9. I can express myself.
These days, you can get all sorts of designs and colours. Gertrude is black, collapsible and covered in flowers, with a really accessible ergonomic handle. It's nice to have something which kind of reflects you.
10. I’m still disabled when I don’t use my stick - I promise.
Now, I’m not faking at being disabled just because I don’t use Gertrude 24/7. Sometimes I feel strong enough to navigate the world without her, and will instead collapse her into my bag or even on my braver days leave her at home. It doesn’t make me fake, it just means that some days are better than others and I try to be as independently mobile as I can.
11. I’m not too young to use a stick.
Disability affects everyone differently. I am not too young to be disabled and my disability is still invalid despite it being ‘invisible’. I’m actually a lot faster with my stick than without, and people tend to get confused at how I can be so fast when I’m using it. It’s a great pacemaker for me and let’s me have that extra support when cruising ahead of everyone else!
Now, before I end this, it's really important to note that different people have different levels of ability. Because I've used a stick this winter, it doesn't mean I'll be using it every day for the rest of my life. Sometimes I have good days, and sometimes I have bad days. Seasons definitely affect me in different ways. You may see me use it less in summer, but that doesn't mean I'm faking my issues. I think that there's a culture of calling out disabled people for being 'fraudulent', and so I hope my writing helps to try and dispel this.
Here's a video I saw recently which conveyed this really well - Ellen is great for portraying this so succinctly!
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