I am a girly girl. Always have been. What can I say? Sparkly jewelry, fancy dresses, high heels...all of it has always been a source of delight. So, what happens when the entire experience of dressing up is suddenly tainted with a big ugly wheelchair? Not to mention, I depend on many other ugly accessories to live. Since my spinal cord injury, getting dressed now involves hiding a catheter and urine bag, a tracheostomy strap replaces the prime location for a necklace, and some clothes just lose their effect when sitting down.
Well, there are two options: the first, cease to get dressed up; the second, do not let it stop you.
For those of you who are frequent readers of my blogs — or perhaps even if you are new to it — you must have already guessed that I opted for the latter and not the former. In fact, my strategy is to massively overcompensate. If you are not going to go home, you might as well go big!
In 2018, I had the opportunity to attend a black tie formal fundraising event, the Team Gleason Game Changer Gala. In typical Loa-style, I went all out. I suspect I may have been the only one of my colleagues who squealed with delight at the prospect of "having" to get dressed up. I will admit that an actual squeal was involved.
I will not allow my spinal cord injury to stop me from doing things that I used to love. Even if I have to do it differently, I will always say “yes” to overly dramatic evening gowns. At the event, people were more curious about my shoes and dress than my diagnosis and wheelchair. It could have been so easy to accept that the wheelchair and ventilator were just too ugly to accompany a fancy dress. Instead, I took this opportunity to indulge my love of fashion with a fabulous dress. It is not that I mind sharing, or talking about my injury, but, when people think about me, I want them to think about who I am as a person, rather than as a victim. I made a statement that evening with my dress: I am not going to let a spinal cord injury and wheelchair stop me from enjoying an opportunity to get full on dressed up.
Whether it is getting dressed up, going to a sporting event, taking a hike, or whatever else you love to do, I encourage you to figure out a way to still enjoy it. Never let your diagnosis hold you back. I have not allowed my accident to do so, and I certainly do not regret choosing to embrace life to its fullest. Steve Gleason did not allow his diagnosis to hold him back from living life to the fullest. He has opened up to share with the world the ugly parts of his circumstances that I like to keep hidden away. I have incredible respect for his bravery and appreciate how he is not only living his life big, but is also fighting to improve the quality of life for others suffering from ALS.
The Team Gleason House for Innovative Living is a residential facility in New Orleans that empowers residents to live with continued purpose through the use of leading-edge technology like VOCSN. Team Gleason House is proof that people diagnosed with ALS can not only continue to live productively, but can also thrive. See how integrated respiratory care and the advantages of the everyday mobility of VOCSN Multi-Function Ventilators support the Team Gleason House residents.
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The views expressed by Loa are not necessarily the view of the Ventec Life Systems, its members or the clinical board. These blog posts are the personal experiences of Loa. The blog posts are not intended to provide clinical advice or training related to VOCSN. Always consult a physician or trained clinician prior to using VOCSN. Please refer to the VOCSN Clinical and Technical Manual for detailed instructions, including indications and contraindications for use. VOCSN is available by prescription only.