Fiercely Independent Pam

Tag: My Tribe

  • Accessibility Rocks: Being a Tourist in Your Own Town!

    I’m catching up after an amazing weekend with a friend from out of town. There is nothing that can do as much good as spending time with a friend- genuine, quality time listening to each other, sharing stories over coffee and yummy food. This is true soul food. The only thing that is better than friend time, is baking in the glory of the sun at the ocean. And when you combine the friendship and ocean, something magical happens- especially if accessibility needs are met.

    One of my favorite things to do is to play tourist in my own town. Living in a tourist destination makes this super easy to do. Myrtle Beach is pretty accessible, but it can still be difficult to navigate in a wheelchair at times. This past weekend, we cruised around town and took in the sites of old Myrtle Beach as well as enjoying some quality meals. We rode the giant SkyWheel, took the tourist pictures (and bought them), and even did some surf shop shopping. The greatest accomplishment of this past weekend, was making it to the ocean. Not just looking at the incredible views that the Atlantic Ocean gives us, but getting down on the firm sand and feeling the warm of the sun-kissed sand in between my toes.

    This feat was accomplished because we were able to “rent” a beach wheelchair at the awesome state park. The beach wheelchair has giant balloon tires that allow it to move smoothly over the dunes and sand. The park also rents power beach wheelchairs during the season. These rentals are free but on a first come, first serve basis. I look forward to trying out the power beach wheelchair come Spring.

    Accessibility is about making things fair for everyone. Universal design helps everyone. The Mobi mat that covered the sand over the dunes- parents with wagons or strollers benefit using these too. The ramp to get to the beach access without steps helps the senior citizens who want to see the ocean as well.

    It’s beyond time to make universal design the norm. Accessibility should not be the outlier in a park. Why can’t all dune cross-overs have a mobi mat and not stairs? It’s not a budget issue, as building stairs is an expensive process too. Accessibility shouldn’t cost anything extra for the user who requires it. That is, in this example, the beach wheelchairs are free for use and included in the admission/parking cost. Being disabled is expensive enough and lonely enough, we shouldn’t have to pay extra or put our loved ones out to be able to access places.

    Whenever I have someone in town or helping me navigate the world through my disability, I realize it’s an opportunity to demonstrate the world from my view. That is, for example, what it feels like to have to use the ramp in the back of the building instead of the front door. Or to have someone talk to you without making eye contact or to be stared at. It’s a chance to see how people do not move out of the way when you are traveling in a wheelchair or how the stupid end-cap displays in a store are a giant nuisance. It’s a lightbulb moment that is otherwise lost.

  • My Love Affair with a Hospital: Adventures at MUSC

    Well it’s been a hot minute since I’ve added a new post. I have been busy with health stuff including making a transfer of sorts from a local hospital in Myrtle Beach to MUSC in Charleston. I love MUSC; I love the team centered approach, the willingness to think outside the box, and most importantly that they put patients ahead of profit. I went from needing another brain surgery to “just” needing a tune up of meds. Such a relief.

    So, I said my transfer was unique. I decided that I needed to make a change in care as I was simply spinning wheels at the local hospital. They were making calls and shot and hoping they would work. So, I decided to take a giant leap of faith and discharge from the local hospital and find a way to MUSC.

    Luckily, I have an amazing tribe (See here for a post dedicated to them). My dear friend answered the tribe “bat call” and agreed to bring me on Monday. It was a leap of faith for sure because there was no guarantee that I would be admitted, but I was and here I am! I cannot stress enough the importance of having a tribe- and do not be afraid of adding new people, sometimes they just need to be asked.

    Beyond the excellent care and better food, I love having a team of med students- attendings guiding my care. I hope my case teaches them something too. They all treat with care and understanding instead of the bare minimum just to check off a box. MUSC truly is a special place.

    Now comes my biggest hurdle, transportation. I no longer drive and rely solely on others to get around. Usually for any local trips, I am able to rely on the bus at my community. I also got a text message from a new local company that I recently tried that just purchased a wheelchair accessible van! Of course there is a fee, but I feel like that has opened some doors for me. Never stop looking for solutions.

    Until tomorrow, I am safe, pain is being managed, and transportation will work itself out somehow. It’s much easier to “keep the faith” when you are at a place like MUSC.

  • My Life as a Plant…

    My biggest hurdle in dealing with my medical issues, is not the pain, constant appointments, or missing answers, but rather the unbelief of others. Whether it is doctors, nurses, friends, family members, or even strangers, it’s so hard to deal with people who believe that there is no way I could have so much wrong with me. It eats me to my core. I know I have to deal with these feelings and I need to let people have their own feelings, but it’s not easy. Much like a plant, I can weather a storm, but still need some TLC at times.

    I can handle the medical procedures, medications, and pain. I boost myself up and put on a smile along with my crazy curls and deal with what has been handed to me. I believe that it is not to hurt me, but rather teach me and help me be stronger for myself and others. I shut down and wilt like a plant when others don’t believe or think they can solve all my issues.

    Lately, my wilting and shut downs do not portray my best-self. I get upset, cry, and become very anxious. This cycle just keeps me in a place that I do not enjoy, nor does anyone around me. I will continue to work on this but it’s so important and easy to be believed. To the medical world, do your homework, my issues, while mostly invisible, are still very much real. Things like shunts, surgeries, and medications do not happen without having proven needs that are not arbitrary, but reality for myself and thousands of others.

    To my friends and family, it sucks that I am not reliable anymore and that I need help. Please always tell me if I am asking too much or you are not able to help. I promise it will not change our relationship. Ghosting me or not explaining the distance, hurts and will impact our relationship, which I hope neither of us wants. To strangers that feel they need to comment, I will simply let you believe what you want, your comments sting, but frankly, I don’t have the energy to fight for a non-existent relationship.

    All of this might seem a little cold or not like me, but it’s self-preservation at this point. I’ve chosen to subscribe to the “Let Them Theory”, in which I recognize that I cannot force or make anyone do anything, only people can change if they want to. It has been a freeing practice, and has helped me not to stress about relationships.

    For now, I will recognize that my body does not look like a temple, but that doesn’t mean I don’t want to treat it that way. I really am the lost plant on clearance begging for a little water, sun, and love. I will push through the ugly soil, but just need to believed that it is possible. My scars and experiences tell a story that I am proud of.