From R&B to jazz and pop, trumpet player Kiku Collins has made a name for herself as a powerful and versatile musician. She’s performed alongside icons like Beyoncé and Queen Latifah, as well as for U.S. President Barack Obama, and released two albums: Here with Me (2007) and Red Light (2011).
But beyond the stage lights, Kiku Collins is a survivor in the truest sense of the word. In 2011, she was diagnosed with breast cancer, but as many survivors can attest to, surviving breast cancer, and the treatment that goes along with it, can often result in lingering challenges. In the case of Collins it was lymphedema, a condition that involves mild to severe swelling in the affected limb (often arms or legs).
As Collins works on her latest album, I had the chance to chat with her about coming to terms with lymphedema, becoming one with the trumpet again, and using style to spread awareness. Chaka V.
Chaka V: How do you describe your style sensibility? Are you a casual woman? Are you one who likes to fancy it up?
Kiku Collins: As a performer, I have a variety of looks to suit different settings. I’m comfortable in anything from casual to formal, but I always like a bit of bling somewhere!
CV: How did the sleeve become part of your life? And how long have you been wearing them?
KC: I was diagnosed with breast cancer five years ago. After a year of treatments, which included the removal of several lymph nodes and radiation, my arm started to feel full, heavy, and achy with bouts of neuropathy. I had to do something and can clearly recall the first time I opted to wear a sleeve/gauntlet on a flight. It broke my heart a bit, but at the same time I preferred to be safe than have a severe case of anything! I didn’t start to wear a sleeve full-time for a month or so but when I did, I knew they had to be cute. The ones I started with were from my initial measurements at a medical supply place: bland, scratchy, and definitely medical-looking.
CV: Did you find sleeves easy to merge into your daily life and style or a garment you had to get used to wearing?
KC: I can’t say that I’m used to it now — after years! I wear them all day while out, especially at the gym, but at home I often take them off if the swelling feels under control. However, given the choices of patterns, I am so glad to have the ability to wear something cute and stylish.
I also do a lot of other things for my arm (thank you to Connie Cares for my pump). My husband does manual lymph drainage before bed on the nights we happen to be home together – it’s great before I fall asleep. I also bought a vibrating platform that helps shake the lymph around and I have a custom night garment if I’m feeling puffy when I’m going to sleep. Luckily, I have not had to use that garment in a while, which is wonderful. It immobilized my arm from my armpit to my fingertips and if I happen to move in my sleep, my husband often gets smacked by it. I’m sure that he’s equally happy about the current situation!
CV: Did you try a bunch of sleeves brands before you came across LympheDIVAs?
KC: I tried two brands. They were pretty scratchy, looked like medical bandages and were boring as heck. I was very uncomfortable and extremely aware that they were there. LympheDivas are super soft and comfortable, as well as offering a variety of fashionable patterns. Even my plain black sleeve–I call it my formal one for fancy gigs–has some amazing bling on it. But the fabric itself is so much nicer than other brands I’ve tried or seen other folks wearing.
CV: How did you become one of LympheDIVAs ambassadors?
KC: I reached out to them when I realized I’d be challenged to get through a solid week of rehearsals and filming for two television shows. One of the shows was my second time playing at the White House! I was having a hard time simply holding my instrument up for any length of time and I knew that the coming week would be very taxing. It involved lots of rehearsing and very little sleep. I’d had some adaptive equipment made for my trumpet that allowed me to hold my instrument at a lower angle with my left arm to reduce some of the stress but I didn’t think that would be enough.
CV: What kind of sleeves are you drawn to? Solids? Prints? Bold colours or muted hues?
KC: I love bold patterns. I am not a fan of plain – and I don’t care if they match my outfits! I like that, even though I have to wear these for the rest of my life, I can make a fun and bold fashion statement. Why not? I know I can’t hide my condition and dislike the beige sleeves that attempt to do so. These fun sleeves open up conversations and hopefully, bring more awareness to lymphedema. If I’m stuck with it, I can at least help others by stimulating conversation.
CV: Do you own many sleeves?
KC: I do and don’t! They don’t last long on me, and this is true for every brand. I end up wearing two sets a day – one at the gym, and I work out a lot, so there’s no way I can wear it the rest of the day, plus the sweat breaks the material down like any other material–and one the rest of the day. Sometimes a third if I need to change my pattern for a gig.
CV: Has wearing sleeves affected your performance abilities as a musician?
KC: Honestly, the sleeves help me a lot. Without them, I’m not sure I’d be able to stick with this career that I love. It’s physically taxing, and right before I started wearing sleeves my arm would end up feeling really heavy and I would get nerve pain like crazy. I had many moments where I would hang my left arm and hold my horn with just the right – which is the valve side and not the weight-bearing. It was tough. I questioned how much longer I’d be able to last.
CV: You look so elegant and fierce in images of you performing with Beyoncé and Queen Latifah, and you are wearing the sleeve so beautifully that it does not look at all like a medical garment. Do you find that wearing sleeves invites questions? And do you feel like it spreads awareness?
KC: I do get a lot of questions, although, many people think it’s a fashion accessory! I have many people asking me where they can get one – and I tell them, they don’t want this chronic condition, but if they know someone who does, I always have cards available! Recently, I was in an airport and a woman approached me who works in the medical garment field. It’s a bizarre way to connect, for sure! I do my best to explain the condition quickly and thoroughly, for those who are curious. Many times I’ll give them my LympheDivas ambassador card and tell them to send a message if there’s not enough time and they’d like to continue the conversation.
There is a strange sisterhood – when I see another woman (I have yet to see a man, though I know they’re out there!) in a sleeve, we immediately connect. Usually it’s a warm greeting and short conversation but sometimes it’s simply a smile and a nod, which basically says, “I know what you’re going through, and it sucks.” I had never really heard of or thought about lymphedema before I had developed it. I’d like to see more and more people out there, showing their sleeves, stockings, wraps (I’ve had that done a few times in desperate moments, but many people with advanced lymphedema basically live in them), instead of hiding them. It’s one of those sort-of-silent conditions. I have connected with many lymphedema patients online and in life, and I know it’s sometimes easier to hide than run the risk of being asked questions, or deal with looks at our garments and affected limbs (some have it in their trunk, neck, face…it’s amazing how far it can go!). But, we’re not put on this Earth to hide. As my husband likes to remind me in darker times, “Life is meant to be enjoyed!”
[caption id="attachment_12957" align="aligncenter" width="251"] Photo credit: Steve Kriesel Torpedo Bags[/caption]