So its dangerously close to 7:00am, and no surprise here, I haven’t gotten any sleep and to be honest I’m a bit of a wreck. Last night Nate and I went to the mall to do a bit of shopping, I am going to my cousin’s bridal shower this weekend so I wanted to treat myself with a new outfit for the occasion. I thought maybe a cute new outfit would make me feel more comfortable, and special for the occasion because honestly I am very self-conscious when I go out using my cane, and even more so if I am in need of using my wheelchair. It is still very difficult for me to cope with these changes, with the diagnosis of CRPS (complex regional pain syndrome), the pain, the depression, everything. I spend a lot of my time grieving over the things I haven’t been able to do and the things I may never be able to do. Anyway, I’ve been in extreme pain through out the past 3 day’s so I needed to use my wheelchair for our shopping trip. This was the first time since February that I have gone out shopping to somewhere other than Smith’s for groceries. In the past, I have had to use my wheelchair but the need for it has increased quite a bit recently, I have never really had that many problems or and have never gone through negative experiences while using my wheelchair, until now.
Our shopping trip was an absolute nightmare. Within less than 5 minutes of being in the mall I had began to notice the multiple people not only starting at me but even pointing and making dirty looks. For the first store we went to, it was one of my favorite stores to shop at, and I mean was because I may never shop there again. It is possible I will place a complaint. However, being that I haven’t been to the mall in a very long time I wasn’t aware we had a location of this store there so I was ecstatic. The staff in the store was extremely rude, they did not greet us when we entered but proceeded to follow us around the store, peeking in on us when they can’t but never really offering to help but every other person who entered got greeted and offered help. To make things worse, I had the unfortunate opportunity of overhearing two women talk about how I am fat, then insinuate I probably don’t need the wheelchair, that I am just too lazy to walk. Then another few girls where whispering, while one proceeds to point towards me and they both giggle. The second store we went was also another one of my favorites. I am aware that this is already a packed store with out it is set up. I was met with disappointment when I could barely go 3 feet into the store before my wheelchair hit the rack, one of the employees looked at me and simply rolled her eyes and looked away, while most of the other people stare at me, some with even worse dirty looks so I immediately leave. Now, keep in mind I have just a basic wheelchair and every store should and is required by law to be ADA accessible. It was extremely difficult to not only experience not being able to actually shop at a store because I am in a wheelchair but I was also stunned by the fact that the staff didn’t even acknowledge our existence yet alone apologize for the lack of room, attempt to make accommodations or anything else.
I know I have shared before that I struggle dealing with Major Depression, Anxiety and PTSD. By the time we left the second store, I was crushed, I had been triggered, before I knew it my tunnel vision starts kicking in and I am starting to break down. My hands start shaking and its like I have just been punched in the gut, feeling as though the wind has just been knocked out of me. At this point, panic is rising with inside me, and you can see the embarrassment written all over my face. Finally for our third store we were actually acknowledged, in the store and recieved amazing service. My automatic reaction to the kindness of the employee’s, and right then I broke down I tears. I went on explaining to her how for the past hour we recieved the worst customer service that I have ever experienced in my whole life. I was so impressed with the kindness and outstanding customer service we recieved there. Despite the experience in the 3rd store, I lay here in bed unable to sleep, my heart is weighing heavily and my eye’s are raw, and puffy from the tears I can’t seem to stop. For me, being that I suffer from PTSD and Depression, last nights events just leaves another piece of shrapnel causing an emotional wound I’ll need to heal.
Like I said, I am still having difficulties accepting the fact that I have CRPS, that my symptoms are so bad at times that I am getting home health care, that I have to use a wheelchair and more. On top of that accepting that I need to use a wheelchair a lot of the time to live a normal life makes it even more difficult to cope with. I lay here frustrated, angry, bitter, and covered in tears; because my body is betraying me. Lately, a lot of the conversations I’ve had are regarding topics that I shouldn’t need to do for another 50 years. I spend a lot of time researching CRPS, this always ends in frustration for me because inevitably no matter what I’ve read, I am reminded that there is no cure for CRPS. As much as I say, I am willing to do anything; which I am. Despite the conviction I have to fight this disease, to do whatever it I need to get some what of a resemblance of a normal life, there is a part of me that always ends up disappointed. I meet with my doctor next week to go over the process for Ketamine Infusions, there is a chance that the infusion will be successful, I could get anywhere from a from 0-100% that last for a couple of week’s, month’s or even a few year’s. Of course, if it is successful and can give me months or even years or pain relieve, I would take that opportunity in a heartbeat, at this point to alleviate even just some of this pain. However its still so completely difficult to accept the fact that no matter what I do, I may never have any alleviation from the pain, and even if I do, this treatment wont be the only one, this can possibly put me in remission but I will relapse. The longest this treatment could last is 2-3 years which is wonderful, and despite the fact that I am so excited for the fact that I could be pain free possibly for 3 years; there is a part of me that morns over the fact that this pain wont be gone forever, it can come back at any point in time. I try my best to keep my head held high and stay positive yet I can’t seem to do it all of the time.
Day’s like today make it the worst. I left the mall feeling completely ostracized, invisible, self-conscious, embarrassed, a burden, worthless, unworthy, plus many other things. I am so angry by my experience and how I was treated. There is parts of me that wishes I could go back and have a full blown temper tantrum, screaming in the store, complain in person about the unprofessional environment, for not accommodating disabled people and honestly for discrimination. As someone, who is new to using a wheelchair I haven’t even used it for a year, and truthfully I don’t have to use it all of the time, only when I need to be on my feet for more than 10 minutes. I am already having a difficult time being out in public requiring a wheelchair then dealing with all of that makes it 10x’s worse. I am so angry, just because I’m in a wheelchair doesn’t mean I need clothes, being in a wheelchair isn’t contagious, the wheelchair doesn’t make my money a lesser currency, and most importantly being in a wheelchair doesn’t mean I am not worthy of going into a store. We all have things that we deal with, some insecurities are bigger than others, but it never ceases to surprise me at the lack of empathy people have for each other. Don’t get me wrong, I am not writing this from a pedestal, Lord knows I am no were near perfect, but I do always do my best to be kind to everyone, treat those how I would like to be treated. I’ve always been very cynical and realistic about the world. I don’t think that everyone’s made of rainbow’s, sparkles and sunshine. However, this transition in my life has shown me now more than ever how cruel the world really is.