Everyone needs support.
When I first got diagnosed I had an amazing friend with me the whole time, who let me lean on his shoulder and cry and then laugh and look at each other stunned… he shared lots of emotions with me that day. I could not be more grateful to have such wonderful friends in my life.
After some time had passed and the initial shock turned into grief and anxiety about how my life was going to look and feel, I decided to go online and find a support group. My doctors had mentioned to me several times that depression and fear were common in newly diagnosed patients, and that MS support groups were out there and ready for me with welcome arms.
A couple of weeks later, I made my way to a local library to introduce myself to a whole new community of people just like me.
I parked and immediately noticed an older man with a walker slowly making his way to the front door. Walking up to the entrance I noticed the sign displaying directions to the MS Group Meeting – just inside and to the left. I don’t know why, but I decided to peak my nose over the barred windows on the left-hand side of the building instead. Just to get a glimpse as my nerves were building. Inside I saw a long folding table which seated approximately 7 people; 5 of them were in wheelchairs.
I slowly walked back to my car and began to cry.
I cried because I thought that I had seen a certain and concrete future I wasn’t prepared for. I cried because I didn’t feel like these people were going through what I was at the time, and I felt even more isolated in my new experience. And I never walked in and I never went back.
There was nothing at all wrong with that group and I have felt guilt over not participating, but it just wasn’t the support I was looking for. And I have been imagining, this whole time… that there have to be more people just like me out there.
Now over a year later, I am proud to say that I have been approved by a national MS association to start my own support group here in my community. This will be the first ever MS support group in Southern California that will focus on mindfulness, meditation and wellbeing as its mission; an all-inclusive space where the only tying themes are that we all have Multiple Sclerosis and we all want to feel better.
I want to meet all of those people sitting in that library. I want to hear their stories and I want to feel their emotions and I want to tell them about me. But first I want to find my own group, my own tribe. And since it isn’t out there, I’m creating it.
Thank you MS, for showing me I can.