I watched a video recently where a guy was instructing people with disabilities applying for Social Security Disability Insurance (SSDI) on how to answer the question of “Tell me what you do in a day” or something like that. He said be detailed and speak of the difficulties and the pain. Let them know of what type of assistance you use or assistance you may require from others. This was actually some good advice to me. I know that if I was asked this question I would be very matter of fact. I got up, took a shower, made coffee, pack my lunch, went to work, returned home, made dinner, wash clothes. Went to bed around 12 am. Not saying I do all of that in a day, but most days can be a variation of this. If I was the person designated to approve me for SSDI, and I had no heart or soul (😆), I would probably deny me too. Of course, I am the type of person that is naive enough to think they would ask follow up questions like, “Did you have any difficulty get in and out of the shower?”, “Did you struggle to make it through your work day and if so, what were your issues?”, “What did you make for dinner?”. I guess that is just me 🤷🏾♀️. Also, when people normally ask that question, no one really wants to know what you did in your day, and we are programmed to give vague responses. The truth on how the day is for someone with a disability is so vastly different than a quick rundown.
I won’t give you my whole day, but we’ll stick with the beginning. This is how I presume I should answer the question. And this may be even a little too pared-down.
Wake up 2 and a half hours before I am due in to work. I need time to rest and recover after each step of getting ready. Take a solid 15 minutes to get out of bed because I have to wait for my legs to join the party. I use my inside walker to make it to the bathroom. Can I make it without it? Yes, but it is slow going and takes more energy to balance and move. I use a shower seat to make my showers easier but I still use a good amount of energy getting in and out of the shower because it is a shower tub combo and I have to get my legs in over the tub. Also, there is parts of bathing that requires me to stand and that takes energy to balance. After shower, sit on the bed for a few minutes getting up the energy for the next steps. Struggling with putting on clothing due to legs not bending or cooperating as a whole. Finally dressed and up. Pack my lunch and make coffee. Constantly having to balance in the kitchen as I take things in and out of the fridge. Lunched pack, bookbag on walker, heading for the door. Hours have now past from the time I woke up and now it is 8:45 am or so. At the door, move my bookbag from inside walker to outside walker. Move lunchbag as well. Take my time stepping down the two steps. Wheel the walker to the car, put in bags, fold up the walker, and lift into my SUV. Make it to the drivers seat. Pause and figure out if my leg is going to lift up to get in or if I will have to do the butt in method. Two or five minutes later depending, I can leave.
I am exhausted just typing that out. Now, I am sure that most people do similar activities to get ready in the mornings. Yet, how many of you actually think about it? You probably operate on autopilot, and most of this can be done in an hour or less. I would still describe my morning as generically as most of you would, but it is a whole ass production. And then these systems that we pay into with each paycheck or dollar earned feels the need to deny us because we didn’t give a detailed answer to a question?!?! It is baffling to me.
With all of this being said, I’m not ready to apply for disability. I feel that I would be limited in my life and experiences if I take their petty offerings. I am determined to live this life to the fullest that I am capable of and that my resources allow. I no longer have good days. I just have days. This day, that day. Stray Kids, this and that, this and that. Seriously though, I get up, I get to it, and I make it happen. I veg out on the weekends to recover from using my physical and mental energy all week. I throw in events with friends and family when I can. I travel when it is affordable and accessible. Honestly, I hope to never have to depend on the system. I have paid into it for over 30 years, yet I can’t imagine the life I would live if I utilize it. I pray God for strength to get out there and do what is necessary to continue living financially and physically independent.
I know I don’t talk much about Multiple Sclerosis (MS). I think people with disabilities don’t want to seem like we are whining or complaining. That we are looking for sympathy or pity. I know that is how I feel at least. This is a life lived. My life lived with MS. No different from your life lived with whatever your struggles are. Yet, I do feel like I underplay (is that a word?) what is really happening in my life. I also don’t want people worrying about me, even though they probably do any damn way. I am okay. It is not easy or glamorous, but it works. I may start speaking on MS more. I realize that I may be the only person that you know with MS and how will you get a better understanding if I don’t talk about it. That is assuming that you want a better understanding. Either way, if you are reading this, I am going to believe that you do. Anyway, be well and whole. Much Love 🧡 💚
