Fiercely Independent Pam

Tag: truth

  • The Honest Truth of Where I am… the Good and the Bad!

    The Honest Truth of Where I am… the Good and the Bad!

    So, I’ve been pumping out blog posts and making sure they match the highest SEO, which means I have to write with a specific pattern. I feel like I’m not able to simply write anymore and I don’t like that. I want to connect with my audience and the truth.

    Here is the honest truth. I feel like a squirrel having to use the transfer board to go from chair to wheelchair to bed to wheelchair and all over again. It is less than fun. It’s a lot of work to line up the transfer and then make sure all is set to go. Luckily I’m getting good at it, but It truly is not fun.

    Second truth, I am unable to use the toilet. It is super low and I am not strong enough to lift myself off of the toilet. This is going to take the most time and I really miss using a toilet. The OT helped me order a 5 inch lift so when the time comes that will be helpful.

    I desperately want things to go back to normal, or even better than normal when I use my Zeen. It’s hard to fight the urge to create timelines in my head for when everything will happen. The more I do that, the harder it is to meet those goals.

    Until then, I will do everything I need to to get in exercise, rest my bottom, and dream of days of taking my service dog out for a walk with my Zeen- This is the image I need to focus on!

  • 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.

  • Financial Woes: Being Disabled is Expensive

    Having a small “pity party” for myself. I’ll get over it before I even publish this post, but like anything else, I know the best thing I can do is get these feelings out. A year ago, I was faced smack in the face with one of the biggest surprises of my life. I was being “tossed out” of my community. On paper this was due to my medical needs being more than they could meet, however I was not asking them to meet them. The actuality was that I was too aware of their missteps and failures for myself and other residents. In hindsight, the move to my current community was the best thing that could have ever happened to me! The process of moving and settling in was quick and somewhat painless, but it came at a cost- a financial cost that I never quite recovered from.

    Fast forward to today and I continue to struggle to stretch my social security payment as much as possible. I do not qualify for any extra help, because ironically I worked so much, my social security payment is just over the poverty line to be able to qualify for additional services. I never thought I would be here and after all, I have a Master’s degree in a needed field and loved working. I worked hard to pay off my student loans that were minimal because I made good choices about tuition and earned amazing scholarships.I am a good example for anyone who believes you just have to try harder and if you are struggling financially, it ,must be your fault. This is simply not true.

    I am confident that through my hustles and creativity, I will find solutions. after all that’s what it means to be fiercely independent! The medical bills, caregiver support, transportation, and unexpected expenses pile up quickly. This doesn’t even include the financial burdens of “wish list” items like mobility devices or other products not covered by insurance.

    I am not here to beg for money or anything like that, just to bring awareness that services for our vulnerable populations needs to be protected. I am not making a political statement at all, just remember that the disabled population is the only group that anyone can join at any time in their life. You never know what curve balls life will throw at you. We are all one accident, one healthcare scare, or aging into becoming disabled. Disability brings a whole new financial challenges I was not prepared for in the least.

    So, what is the solution? For me, it’s a matter of keep hustling. I am determined to meet my financial needs through lots of means. Sponsors, bartering, and even begging are not beneath me at this point. I realize I am lucky, I have a lot of skills to bring to the table and most of the time, I am able to muster up the energy to use them. There are far many more disabled people who aren’t able to do this to the same extent. We all have to rely on our “tribe” the friends and family who meet us where we are despite our difficulties.