Feelings from a lonely soul
By Louise Sertsis
All of my girlfriends have become mothers and are busy nurturing their children. I now have phone friends, since most of them have moved far away. I’ve been on long-term disability for 11 years now, and meeting new people and socializing are foreign territories to me. I have felt so horrible with the devastating effects of multiple sclerosis (MS) that I haven’t wanted to leave the house, but I currently feel better than I have in years. Emotionally, however, I feel like the new kid in school—the one with zero social skills, but who desperately wants to fit in
This is a turning point in my life, as I need and desire interactions with new people and I want to work. I should be amazed at how far I’ve come, especially considering where I’ve been. About five years ago my words were very muffled and pretty inaudible. I spoke very slowly, and it was frustrating for those who were obligated to listen to me. I basically couldn’t carry on a conversation, so I lived like a hermit in silence. I was tired of being asked to repeat myself—not talking seemed like a better option, or I gave one-word answers that were guaranteed not to require more explanation. It felt like I was a prisoner in my own mind, speaking occasionally to select friends, family and my husband. I understand that I was stubborn, and it’s a wonder that the remaining people didn’t give up on me. As the saying goes, you find out who your true friends are when going through the toughest times.
Now I’m finally feeling better, I need and want to revamp my social life and start over. It’s going to be hard to leave the comfort zone of my home, but I’m tired of the same daily routine. Change is seldom wanted, but in this case it’s required. It’s time for me to start living again—I’m just not sure where to begin. Trial and error will be my new normal until I can feel comfortable in my own skin.
This is challenging
Being 40, I realize that everything is different to when I was younger. I never understood people with MS who said “I have MS, but MS doesn’t have me.” In my case, MS has had me for the past 11 years or so. In all honesty, I feel that MS has definitely changed me. I can’t say for certain if it’s a good or bad thing, just different. I can say that I have experienced true pain and impossible situations, but I’m stronger for them! My life is very different to the way I had envisioned it, but I really believe that it’s how you handle negative situations that will make or break you.
Yes, I would had loved to have had kids and been a mother. Realistically, however, MS has stolen that opportunity. Adoption is the only way, as the bone marrow transplant I had to halt the progression of MS has put my own biological child is out of the question. I guess I can’t blame MS for my inability to have a child; in hindsight, I should have protected my eggs for future use. And while I’m very grateful for having had the transplant, I am sad that I will never have any biological children of my own. I think this contributes to the loneliness that I’m now experiencing, and am slowly dealing with.
I never anticipated being in a wheelchair at such a young age. The reality is, few people want to associate or socialize with a person who uses a wheelchair, let alone be true friends. At least, that’s been my experience. I don’t understand how those many friends, who I held for years, could gradually exit my life as my MS progressed.
Now, the first thing I must change is my perception of who I am. I must try to focus on the future, rather than being stuck in the past. Only in facing my truth and acknowledging my faults will things change. I will not accept MS as being my fault—it’s only my reactions to my unique circumstances that are my “fault.” MS will always be a part of me. I will stop apologizing for my health and things I can’t change. I will choose to say “I can” and “I will,” and I will set new goals starting today. I will not sweat the small things and I will be grateful for what I have. I will learn to laugh again, and feel comfortable around others. I will stop thinking that others are judging me. Some might, but I will not care. I can embrace the future with MS as my sidekick, rather than MS defining me as a person.
I am not perfect by any means. I’ll have bad days (like everyone), but I will make it my mission to make every day count. I will choose to be happy, resourceful and independent. For many years I lived like a hermit, but those days are gone. I am truly living, creating and inventing, and aim to design products with a positive impact on the world, specifically for persons with disabilities. In essence, because others won’t hire me, I have hired myself. Yes, life has altered my initial plans, but I’m creating new ones.
Swimming in style and comfort
Swimming is my absolute favourite activity. As my MS progressed, however, I realized that swimsuits were definitely not designed to be worn by those with all abilities. I’ve had bladder issues from the onset of MS, and have found that the typical one-piece swimsuit is just not practical! Particularly when the swimsuit is wet, using the washroom becomes an almost impossible task—and because I go to the washroom frequently, one-piece swimsuits are just not an option. A bikini is the obvious choice but, for many women, coverage of the mid-section is a top priority. Shouldn’t there be an accessible one-piece that provides coverage, while accommodating washroom visits?
To tackle this issue, I’ve invented a “one-piece, two-piece swimsuit” called Advanced Freedom. It’s a beautiful, functional, one-piece swimsuit that is actually two! The top and bottom portions are held together by magnetic buttons on each side of the waist. The magnets are waterproof so their strength is unaffected by chlorinated or salt water. Women of all abilities, sizes and ages can now find their one-piece transformed into the new, more convenient two-piece. And unlike regular tankinis, the swimsuit will not ride upwards in the water.
Tankinis can also stay tankinis, with the magnets going down the back/side of the upper portion of the top. This solves two problems: It keeps the tankini in position when in the water, and it makes the swimsuit more accessible for people who cannot raise their arms over their head. It also adds an extra element of style.
My working life now is all about trying to keep busy, and providing something that will help others. Others won’t hire me, so I have hired myself.
If you are interested in learning more about the Advanced Freedom swimsuit, you can find me on Google+ under my name Louise Sertsis.
Louise Sertsis has been living with MS for 19 years. She has a degree in psychology and a minor in human kinetics. Louise is also interested in holistic medicine and making swimsuits accessible for all women.