Help Gilda live her truth

Live your truth….. This is something I hear people say a lot lately and it’s a beautiful concept. To live as your best self sounds empowering, especially if your personal truth was freeing in some way. Something you had to mature into, to feel brave enough to embrace and let loose. I envy these people that are able to let go and live their truth. I, personally, have not been able to do this for a very long time. I’ve been scared and embarrassed to be completely transparent with my community. I’ve been angry and so unbelievably sad of my truth, and because of this I’ve kept it a secret, hidden from most of my friends and family for years. I’ve gone back and forth and back and forth trying to decide if I’m actually brave enough to do this, and I’m still not sure I am, but I’m going to keep typing and hope I don’t chicken out.

If you know me, there’s a good chance it's been through dance. I’ve either been your teacher, your child’s teacher, we’ve been staff members together at a studio or we used to shake our derrieres together out on a Friday night. Dance has been the center of my universe for the past thirty years and I loved my life. I’ve had the privilege to teach for some of the best studios on the east coast, and then opened my own studio in two separate states where I trained children I fell in love with and befriended dance parents who treated me like family. I’ve never regretted this life path. On the contrary, I’m one of the lucky ones that got to live their dream out loud. Not everyone can say that, can they? I had a dream and succeeded in bringing it to life. I was lucky, until I wasn’t……

Twenty three years ago I was diagnosed with Multiple Sclerosis. In the beginning my symptoms were so mild I was able to continue to dance and no one was the wiser. With great medical care and keeping active I was able to maintain a level of health with no negative change for seventeen years. That’s unheard of in the MS community. Although no one knows exactly what causes MS I’m confident that dance and a happy state of mind contributed to my ability to stay healthy for so long without a relapse.

It wasn’t until after my family left the East Coast that I experienced my second relapse. Where my first MS attack left me with minimal lasting symptoms, my 2nd relapse affected my whole lower half of my body and seemed to stick around. Both of my feet and both of my legs were now tingly with intense nerve pain.

I was able to recover some, (That’s the way MS usually works. You have an attack and your symptoms subside some, not completely going away, but leaving you with a “new normal” to adjust to.) and with an adjustment of meds and physical therapy, I was able to start to teach dance again. This time I couldn’t hide the state of my new normal completely, so I would lie. When going up and down stairs I would need to hold on with two hands and I used to blame it on my “old lady dance knees” or if I tripped, (something I did a lot) I would joke about being only graceful on the dance floor. No one in my new dance community had ever known me physically any other way so they took my awkward body movements as my truth. I lived my dream again for three more years until my family relocated to another new state where I had my third relapse and the worst one to date.

The body I live in today can not physically dance anymore. I no longer have the ability to turn, skip, jump, leap, releve, plie, kick, TAP DANCE (my most unique dance ability) or balance in any way. I have foot drop and can not walk without either holding on to the wall or using a walker. I often fall. I’m always covered in bruises from tripping into the furniture and I take an ongoing immunosuppressant medication that’s like a chemotherapy treatment. Immunosuppressant medications make life exposed to germs scary even in a non-pandemic world.

That’s me. I am a shell of the woman I once was. One day I was living my dream and when I blinked it was all gone. Here’s the kicker: My MS doesn’t affect my mind at all. I just live in a body that has betrayed me.

When this happens to you, you have to go through all the stages of grief. I had to mourn the loss of my old life, because no matter what happens from this point on, that version of me is gone. I cried and felt sorry for myself for about a year. I was embarrassed to be seen by anyone that knew me “before” as an energetic bundle of dance energy. Now I walk like a zombie dragging a foot while holding on to a walker and have to rest after performing mundane tasks, like going to the grocery store. It took some time but I eventually got myself into therapy where I slowly learned that my life was not over and I was behaving like my own worst enemy. I started to fight for what physicality I had left.

I go to physical therapy every week and I see a specialist for MS that keeps me up to date on all medication that helps me manage throughout the day. I take pilates every day and found an amazing support system in both the staff and other students in the studio. I learned to be my own advocate for a better quality of life. I have joined MS support groups online that have helped educate me with more options for a better quality of life. This is where you come in.

My biggest struggle is with walking. I still cannot walk any distance without a walking device and because of my dropped foot that device is a walker. The walker makes it so I’m able to maintain balance if my weaker foot drags on the ground and throws me off balance. In one of my online MS groups I read an article about a device called a WalkAide. The WalkAide is a bluetooth box you strap to your knee that has sensors that attach to the nerve responsible for lifting your toes. The device is designed to keep track of your average gait and give you an electric jolt every time you step. (not as painful as it sounds) With the electric shock hitting the correct nerve, your toes automatically lift when you take a step. I found a prosthetic company in my city that also fits people with the WalkAide device. And it worked for me! With this device I can WALK!! This is technology at its best. Can you imagine that?!? A bluetooth box that only requires a AA battery can help me walk safely! But of course this type of device is not covered by insurance. Less than a year ago I had a very sick fur baby that drained my family's savings or I wouldn’t need to ask for help.

That’s my truth. I still feel scared about coming clean to so many people about living with a disease that has left me with a body that has a “new normal.” I know I’ve hidden this from so many that love me out of my own irrational fear. I don’t want to be seen as a victim or “less” than the person I was before this terrible disease changed my life path.

I’m hoping to produce something positive out of this experience. I’m hoping to soon be healthy enough to start an all inclusive dance program for children with mobility challenges. Children who might not have had the opportunity to participate in a dance class and that might be inspired by an instructor who moves just like them. With your help and the WalkAide, I might just be able to WALK through that door!