Living with MS as a Solopreneur
Friends I have something exciting to share with you all! On June 10th it will be my 10 year Angio-iversary! And I am sure you are like, ummm yay congrats Michele, but what the heck is that? So let me fill you in!
In 2008 I was diagnosed with Multiple Sclerosis and to bring you into my life at that time, my mom had died of Cancer in 2006 AND I left my first husband to come home to care for her, and to top it off, fell into dating a charming but ultimate jerk (let’s just say the police had to get involved). So how is that for icing on the cake?! So ya, my life was an ultimate shit show, lol, but I am here to tell the story with a smile on my face.
My first MS attack happened while I was in San Francisco at the Love Parade with my dear friend Maya and her husband Brian. As I was so excited about this giant street party that started in Berlin and made a hit in San Fran, I decided to go all out with what I would wear. I was told people really got into it and some even went near naked! I took the opportunity to get decked out in PVC, because why not!
It was in early October and the sun was beaming down on everyone as they danced the day away. There were fun floats everywhere, with electronic music blaring from each one. Early in the morning I started to feel dizzy and as the day went on I could barely see. My friends kept joking that maybe I had lost my ability to party, and I kept wondering if my corset was too tight, it did have metal boning after all!
We had a blast and danced all day, took a break then danced all night! It was so much fun, but I knew in my heart something was up with me, but what?
When I got back, I went to see my eye dr as by now (about a week after the festival) I could barely see out of my left eye. He knew what was up and sent me straight to a specialist and she suggested that it looked like I had Multiple Sclerosis and was experiencing optic neuritis. WHAT THE HECK IS THAT? is all I thought, and with the way life had been going, I was like, ok universe lay it on me, I guess.
Well by December it was confirmed I had Multiple Sclerosis and as I joke, I was now part of the MS Club, which is not as fun as the Mickey Mouse Club, no ears were given at initiation, just a 3 day workshop on how to live with this illness that could eventually kill me. Oi vey!
After treatment, my vision came back and I was now learning to live with MS, but this was a no fun journey to navigate. I wasn’t buying what the neurologists were putting down - hello drug pushers! And so I decided then to not take the disease modifying drugs being presented to me. Honestly, the side effects seemed just as bad as the illness so I left them (and well I never looked back).
Now disclaimer: this is NOT to say I don’t believe in modern medicine, as I do, but for me then and now, I just was not sure meds were the route I wanted to take. I also want to add that my current Neurologist is AMAZING, and after firing two I am so glad to call her my amazing supportive Neurologist, she is Brasilian too, so bonus!
Fast forward to 2010, shortly after a visit from my in-laws who I sadly do not get along well with, I had a big MS relapse and by big I mean I spent that birthday in the hospital and enjoyed a week there with endless testing and attempts to treat my pain. After I was discharged, I left in a wheelchair and was told I may not walk unassisted again. My wheelchair didn’t even fit through our doors in our condo, and for the first time in my life I was feeling co-dependent AF and that drove me bonkers. Don, my husband, used to travel for work, so I was also often alone, which was not easy as I had a dog and a wheelchair that barely fit through our doors. I had extreme brain fog and if you know me, I am a talker. Well I could barely finish a sentence! It was rough but there was one more thing to add. We had set out to marry in 2010 soooo I was also trying to plan my wedding!
In 2009 a Doctor in Italy, Dr. Paolo Zamboni, stopped the MS world in our tracks, sharing that his wife had MS and that he wanted to dig beyond the meds and find a way to help her. He shared about CCSVI treatment, which is essentially angioplasty, which many deeded as being controversial for those living with MS.
Many Canadians (did you know Canada has the highest population of people living with MS!) started to flock to places like India, Mexico and California for this treatment, as did I, shortly after this awful relapse. I had been in physio therapy learning to walk again and learning to live in extreme pain and I was fed up. I was spending time on all the MS groups on Facebook to learn more, to see how I could help myself, and I was determined to try this treatment in California. As we all know though, healthcare in the States is not cheap, but dammit, I was worth it! Don kept wanting to call off our wedding as he thought it would be too stressful for me and thought we should use the money for the treatment, but we had a modest wedding planned and the funds wouldn’t have made much of a dent against how much we needed for the treatment.
I wanted to have it all, treatment and a walk down that damn aisle! A fundraiser was held for me and with enough money raised, we were off to sunny California in hopes of help!
Now to be clear folks this is a treatment, NOT A CURE, and not everyone responded to it, so it was an expensive risk! I like to think of it as jumper cables that helped to restart my engine, and well, it did just that. While in California I met so many Canadians who were all there for the same treatment. The hotel we stayed at, which was near the clinic, basically was like Club Med (pun intended) for people living with MS from Canada. We chatted, we laughed, and we cried a lot together. I made a lovely friend from Montreal, Sandra - (Happy Angio-iversary Sandra!), and we both ended up having the treatment on the same day and exploring the sites together too. Don and my aunty came with me as support and we tried to make the most of being in California despite the anxiety and pain I was in. Let me tell you I was scared and anxious AF but the treatment went well.
When I went for my CCSVI treatment I was still using a walker, and for a few months after, I still had a walker on hard days, but on July 31, 2011, I walked down that damn aisle, yes I freaking did! It’s now been 10 years post treatment, and I have not had another full blown relapse, though MS often comes knocking at my door to pay short visits, forcing me to put down my work and hit the bath and bed for a few days. I have pain, but I have learned to live with it. I have certain weaknesses in my hands (how I held my cameras for long weddings, I do now know!) and my stamina is low for many things, which I am sure, if you know me, you are thinking, ya right Michele you are such HIGH ENERGY!
But here’s the thing, that is a choice and I work on my mindset everyday. When I first started my business 6 years ago this May, (oops I forgot to celebrate that! Happy birthday to me!) many in my life had worries and concerns. Can you handle how physical being a photographer is? You are going to shoot weddings, are you crazy? What about the heat? Carrying gear? The stress of being an entrepreneur? Yup, I had loads of people showing their care through their own fears, and that pissed me off and made me even more determined to make this business thrive.
All the concerns were fair and true, and while I was open with everyone about my MS I didn’t want it to define me. So my secret weapon to building the life I wanted: asking for help became my game plan. I made sure to have assistants, never shoot alone on long days and take breaks when needed, have help with tasks like social media, blogging, and even editing at busier times. Thank you Rebecca, Stephanie, Stacy, and Sam and many others who have been part of my business over the years! Here I am, 6 years later, working a business that has allowed me to be around my son and family, have the life I want, it's won me awards, introduced me to some of the coolest humans I know, and tapped into my creative side which so desperately needed to be flexed!
It was not always easy, but it has all been so worth it. I never gave up, though I did have times where I let the fear of others get to me. I learned to see they were scared for me because they feared what would happen to me. It came from a place of love and care. There was even concern about me sharing so openly about my illness, in worries that potential clients would judge me, but here is what I found: I have always attracted the right kind of compassionate clients who would have understood, had anything ever gone wonky while working together. If someone wants to judge me on my illness that was not my choice to have, then that is their problem and truthfully they are not my kinda client.
A Decade In & Celebrating
10 years later after my Angio-iversary, I still have MS. There are still lesions in my brain, though a recent MRI showed that one has totally disappeared! YAY! I still have pain in my hands and in my spine, I still need more sleep than I allow myself to get, I still can’t walk too far or do a marathon, I get dizzy easily, and I struggle with focus and memory at times, but you know what I can do? I can live the life I wanted for myself that I set out to have when I was 5 years old, which was that I wanted to be an artist! And here I am, being that artist, working with women to help them feel amazing in their bodies. Cause friends, I for one, know what it is like to feel angry at your body for letting you down, for feeling broken, for gaining an insane amount of weight due to medication.
I have been there and while it sucked, I still found the light and now I have committed the rest of my life career to shed light on the lives of those I work with.
So while I celebrate my angio-iversary, I first off want to say thank you again to those who worked hard to help me raise the funds for my treatment! I want to say thank you to those who have stuck with me during these hard times as sadly many friends leave when times get tough, crazy hey! Thank you to all those in my life who are cheerleaders and remind me that I am worthy of my dreams and building my own version of success.
I also want to say thank you for making it to the end of this blog post, for your interest in my story and allowing me to share it with you. I am so very thankful to everyone I have ever photographed over the years and look forward to those I have yet to meet! I am INCREDIBLY thankful to all the mentors I have had, coaches and teachers, and industry friends who have reminded me to value myself and my gift, and to keep on going.
And I want to say, to those of you living with a body that you feel has let you down, I see you and your feelings are valid.
Try if you can, to never give up hope, and I know first hand how hard that can be when everything feels like shit. Try if you can, to take risks, and know that it is ok to keep tootin’ your own horn, cause eventually people will see that YOU CAN and you F’ing WILL!
Life may look different than planned but try if you can to not let your dreams fade. Our bodies are always shifting and changing, but our minds can catch up and they will, with practice.
SO, I leave you with my personal favourite affirmation that I made up myself and encourage you to say this to yourself at least once a week, or heck, daily!
I am F’ing Fabulous, Fierce, Full of Light & Fun! I am worthy of abundance and joy and will spend my days spreading my high vibes to attract all I deserve!
With so much love, from my heart to yours,
ps - if you're curious to learn more about MS, please visit either of these sites:
MS Society of Canada or The Mayo Clinic
Michele Mateus is a Boudoir, Intimate Portrait & Nude Fine Art Photographer located in Coquitlam, BC. Serving Coquitlam, Vancouver, Greater Vancouver and Fraser Valley, BC. Studio, Outdoor and On-location Boudoir Photography.
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