HOW DID I GET HERE?

In the midst of trying to understand why my socials have seen no growth in over a year and the self doubt and imposter feelings it has created I thought back to why I ended up here in the first place.

I once was a super active person. I did yoga and the gym regularly. I finally got to that headstand pose and was making great progress in my practice. I would go hiking in the Angeles Crest Forest helped by those ever important leg days at the gym. I loved being in the sun. I’d walk everywhere.

I became an expert in document creation and enhanced my skills in MS Office by learning how to do HTML, Director, Flash, Illustrator, PhotoShop. It helped be advance and do more. I was the one taking work home and being up late working and I loved it.

I found my hubby. We had an amazing boy and things were looking up.

Then all hell broke loose and my future was ripped away from me. I was diagnosed with MS. My legs no longer listened to me. They hurt, buzzed so bad I couldn’t feel them, didn’t understand my commands to run to catch an elevator or climb those stairs I used to every day. I was suddenly weaker. I dropped things constantly where my steady hands could do delicate things but were now shaking. I almost lost my vision and was terrified of where this new thing was taking me.

I tried so very hard to continue to work. I just couldn’t do it and became permanently disabled. Now I could take care or our son but what else did MS have in store for me?

I lost connections with friends. Many promised to make time for me but nothing ever panned out. I felt abandoned, and cursed. For years I had no direction then, my head exploded and I faced a new set of challenges.

A fairly large arterial aneurysm sitting at the base of my brain ruptured. The pain was so intense, I luckily have no memory of it, but sadly my son and husband do. They were in the ER discussing with doctors what was going to happen to me whilst they could hear my constant screams of pain in the background.

It took a team of doctors to fill the aneurysm with platinum coils and stop the bleeding. They nearly had to open my skull and put in a shunt to deal with the increasing pressure, but it abated and I dodged that bullet. The pressure from the blood was so great though, my eyes bled and I was blinded by it.

I spent weeks in the hospital recovering, whilst my father was in another hospital recovering from a heart attack. You see, his problem hit the day before mine. I was supposed to be on the road alone but thankfully it happened when I was at home and with my awake hubby. Dad wasn’t told about me until he got home, before I did.

Two eye surgeries later and my vision was restored. But I wasn’t out of the woods yet. I had a schedule of interventional radiology appointments at 3 months and 6 months to make sure the coils held and there were no new aneurysms. Then I was on a 1 year, 3 year, 5 year watch with only MRA scans with contrast to monitor me.

My surgeon told me I was very lucky. Most ruptured aneurysms kill before the person hits the ground, then they kill before they reach the hospital, then they kill whilst in surgery. I survived all of that. I was special. But the full depth of the damage I received wasn’t yet known.

I permanently lost memories. My MS lesions were touched by the escaping blood and reactivated in an enormously painful way. My vision received a permanent hit with a blind spot in my right eye. I was given the gift of vertigo and dizziness. But I survived with more than most. I didn’t need to relearn how to do anything. I could walk, talk, feed myself, care for myself…I was indeed one of the lucky ones.

But this, more than the MS damaged my sense of safety. I no longer wanted to be alone. I was terrified I would have another rupture whilst driving alone, with the boy in his child seat. I had terrible nightmares. I was so very afraid of being alone, something I never was before. I did everything alone from hiking in the mountains to deciding to go to Universal Studios because I was bored. Took me years to get over that new fear.

Then, three years later, sitting on the couch watching videos as the boys played Super Mario Galaxy..I started to watch a video of the Main Street Electrical Parade from the 70s, my childhood. I was filmed from right in front of the Opera House…I could feel myself as that little girl sitting on the curb anxious for the parade. The lights went down, the announcement began, and I had to stifle a cry. I watched it then immediately turned to hubby and said we have to go to Disneyland.

He and the boy had never been. I was afraid to go. The pain and inability to do things made the idea of going to a place with mostly walking and standing in place daunting. But we had to, I had to.

It was this trip that awakened the Disney love in me again. I joined Disney FB groups. I went to their meet ups. I got more and more involved. I took over an information post from a member of one group that grew into sharing it with up to 20 groups in about a year. I transitioned from simple text posts to creating Power Points for the information, something I used to do in my former life. I created a FB page to manage the posts and turned my simple Instagram into a link to it. Suddenly I had purpose again and I forgot about all the trauma.

Disney saved me from my scared hermit life.

Of course as the years have passed my MS and aneurysm are still with me. I continue to decline and get worse. But I keep going. Helping others has filled my soul in ways I never knew could be.

Now, 8 years on, I’m no longer as active as I was in the beginning. My body has decided to slow that down and perhaps that is why I’m no longer growing. I have doubt filled days. Imposter feelings. Days where I’m afraid of what to do without this. I don’t want to go back to being that frightened hermit again.

But Disney has decided to change their DAS program. The impact on the disabled community is severe. I feel survivor guilt as I was recently reapproved for the service. Something I absolutely need to even consider going on the 5 attractions I can go on now. My heart is crushed every day as people recount how they were treated. So many are walking away from Disney because of it. But as it stands, with the way they are treating the disabled, Disney obviously doesn’t care one bit.

Where do I go from here? I decided I would stay. I do help a small group of people and their support has bolstered my decision to stay. I’ll keep speaking out though.

My grandmother was a riveter during WWII. I am named after her and I proudly wear that badge every day. She may not have been THE Rosie the Riveter, but she was MINE. I have had family members tell me that I am so much like her, a spitfire. So it is in her honor I hold up my end of the inherited genes and stay a spitfire. So This might be why I am no longer growing. My disability activism. Perhaps it is all for the best because I’m known for my honesty and my steadfast adherence to the truth and that is helping me get the word out about the DAS.

Maybe with all that I went through to get here, this is exactly where I am supposed to be. Not at the top of Mt. Baldy, but here yelling my heart out for those who can’t.