Leveling Up in the Disability Game

Like many people who suffer from a chronic illness, I require the use of mobility aids. I had a very hard time admitting this to myself. I was admitting defeat. I couldn’t function like everyone else anymore. I had to accept a new term to describe myself; DISABLED. It hurt! I couldn’t accept it. I wouldn’t! All the denial only made my life harder since I had to push so hard through each day. I eventually had to give in and move to the next step of my illness.

The first obvious change that would bring attention to my physical limitations was about 4 years ago when I got my handicap parking tag. This was really the first evidence that I was different. It actually took a lot of convincing on my part to admit that I needed such a thing. Even after I got it I fought using it. I felt embarrassed and awkward using it. I felt like everyone was watching me and judging. I felt like an imposter or an attention seeker. Although, it was a huge relief to get better parking and not have to strain to walk across a huge parking lot wasting precious energy. After enough time, I eventually got over it and now I’m thankful and happy to have my parking tag. I breath a sigh of relief when I get the closest parking spot. I’m thankful that I was brave enough to take the steps to help myself in this way.

The next big change for me, which I still fight sometimes is when I bought a cane 3 years ago. It was my first mobility aid and I fought it real hard. Admitting to myself that I needed a cane was excruciating. I was in denial for a long time and tried very hard to convince myself that I didn’t need it. I had to convince myself that it was ok to have one. Was I sick enough to need a cane? Am I being dramatic? Do I look like I’m seeking attention? I was always strong and proud. Would using a mobility aid now make me look weak and pathetic? Would I lose people’s respect because I wasn’t physically strong enough anymore? I desperately don’t want to be the “sick” person who is always looked at with pity. After realizing that I was avoiding walking and going places because it was too hard, I decided it was time. I went online and found the prettiest cane I could find. I was not going to get an ugly gray cane from the drug store. I wanted something with style that I could be proud of. Anything to NOT look sick, old, frumpy, pathetic. I found the perfect one and completed my purchase. I waited anxiously for my new companion to come in the mail. I was actually excited!

That first step was done, now I just had to actually be brave enough to use it in public. Again, I fought my need for it. I stalled and tried to talk myself out of it. First, I was embarrassed to admit to my husband that I needed one and that I actually bought one. Would he think I was being dramatic? Would he be embarrassed to be seen with me? It was already here, so I had to keep moving forward. I actually didn’t let him see me with it for over a month. It was hardest to show him this new version of me. I didn’t want him to be ashamed of me or see me as weak.

The first time I used my new cane in public was very hard. I was going to my kids’ elementary school to pick them up, as I did every day. I’d see the same faces I’ve seen every day for the last 4 years. Now all of a sudden I’d have to answer for why I needed a cane when I appeared perfectly healthy all this time. I got myself properly dressed, did my hair and makeup to build up my confidence. I grabbed my new cane and headed out the door. My heart was pounding, my face was burning with embarrassment and anxiety, and I was sweating. It took everything in me to get out of my car, cane in tow. I breathed deeply and used every ounce of effort to appear cool and confident. I know if I was appeared embarrassed, it would make others feel awkward which makes the whole situation worse. As people noticed me and looked at me with concern, I started to get nervous. I realized there were gonna be questions and I had to come up with a simple answer for this change. Some of the people I knew better knew that I had health problems, but didn’t understand the extent of it. Some asked if I hurt my foot. The explanation I came to was that my legs get tired and I lose my balance. “It’s no big deal” I’d insist. Some left it at that. Others wanted more details. Even then, some people still looked at me with confusion. That’s when I’d just move the conversation on to something else. I hated this feeling. I’m not one who enjoys too much attention or fuss. I don’t like all eyes on me, and that’s what I felt. I tried very hard to ignore the feeling and play it cool. Day after day I went through these feelings. Eventually it got easier and I stopped caring. I even started getting compliments about how pretty my cane was. It started to feel like a cool fashion accessory. I started calling it my “pimp stick”. People got a kick out of that. Laughter always helps. I eventually bought another cane. This one has a different look and is foldable for travel. I choose which to use based on my mood and outfit for the day, just like shoes or a hat.

There are times when I’m ok and I don’t need a cane for weeks or months at a time. I enjoy these times, but slightly miss my accessory. When the time comes to need it again, I hesitate, but only for a minute. I remind myself that its gonna be ok. No one really cares. No one is staring at me, judging. I truly need this aid and it makes my life easier. I grab my cane, walk out the door, and get on with life.

My next big step in mobility aid use crushed me. It was the use of an ECV (powered mobility scooter). I’d considered using one in a store for a while, but always talked myself out of it. On this day, we were in Disney World on a family vacation. It was a particularly hot day and my body was not cooperating at all. I could barely walk and I felt like I was going to pass out. I fought it and kept going. My body screamed at me to sit down, but I resisted. After a few hours, I eventually had to stop torturing myself. I couldn’t do it anymore. I was completely out of energy and unable to take another step. With tears in my eyes and sweat pouring off of me, I told my husband that I needed to get a scooter. He agreed and took me to the spot and we started the process. It took only a few minutes, but it was done. After the girl explained how to use it, I reluctantly sat down and immediately cried. I cried like a baby because I was so ashamed. I was embarrassed and disappointed. I’d officially sunk to a new low. More than anything, I was embarrassed for my husband and kids. I was so afraid they’d be ashamed and embarrassed by me. I couldn’t even look at them at first. I wanted to crawl into a hole and die right there. I didn’t have a choice though. This was the only way to not ruin everyone’s vacation. I collected myself and wiped my tears away, then got on with it. Learning to drive the thing was a bit of a learning curve, which added to the embarrassment and awkwardness. I tried my best to navigate this monstrosity through the crowded park with my husband and 4 kids surrounding me. My kids sensed my anxiety and embarrassment and helped me by having some fun with it. They called it my Mario Kart and joked about throwing turtle shells at people in my way. They are so cute. I cried about it a few more times here and there, but eventually I got over it and was able to enjoy the rest of my vacation.

When I was finally home again and had to use an ECV in the store, the feelings of embarrassment came back. I had to go grocery shopping, which I mostly avoided doing. I had no choice though. Life determined that I had to go. The whole drive there I tried to psyche myself up. I had to talk myself into using the store provided scooter. I walked into the store and just stared at the thing in the entrance. I looked around to see if anyone was nearby, watching. I took a deep breath and forced myself to sit down and start driving. This was harder because I was in my own neighborhood. What if I saw someone familiar?! How would they react? What would I say? Again, I didn’t have a choice. I had to do it, so I did. I put in my earbuds and played Radiohead, which is calming for me. It took me somewhere else and I could pretend to be invisible. I made sure to not make eye contact with anyone. I got my groceries as quickly as I could and headed to the cashier. Now I had to face someone directly. Again, the fear of judgement came over me. Would this person think I’m being ridiculous or dramatic? I put my stuff on the belt, paid the bill and left as quickly as I could. Again, I was covered in sweat and my face was red with embarrassment. I drove to my car with my purchases, which seemed to take forever. The scooters don’t go very fast and its very apparent when outside in a giant parking lot. Luckily I didn’t have far to go since I was in a handicap spot. I got in my car and was done. I did it! I was proud of my accomplishment. It was excruciating, but necessary and now I was done. I went home and was relieved it was over.

Now I use my canes and store provided scooters regularly. I still hesitate to use wheels each time but I’m more accepting of it most times. Although, I still do resist at times and quickly regret wasting my precious energy because of foolish pride. I’ve considered getting my own scooter so I can go on outings with my family but I haven’t gotten that far yet. I miss going to the zoo, aquarium or even just neighborhood walk with my family. We used to do these things all the time, but its been years at this point and I miss it terribly. I’m still trying to convince myself to get my own scooter. I’m still embarrassed for myself and my family. But I want to live life again! My kids aren’t getting any younger and I’m missing precious time with them. We’ll see how much longer I can hold out. I think I’m close though.

All these mobility aids were very hard to accept. I questioned my need for a long time, often beating myself up over it. One day, I did a search to see at what point I actually qualified to need a mobility aid. I was trying to convince myself that it was truly ok for me to use these things. I came across an article that said “If you question whether or not you need a mobility aid, then you already need it”. That was the magic sentence I was looking for. Something snapped in my mind that said “it’s ok. I qualify”. I am now more accepting… most of the time. I’m hoping I can continue to be brave and talk myself into allowing these aids to give me back the freedom I’ve lost. I’m still working to control the monsters called shame and embarrassment, but I am working on it. I’m looking forward to enjoying life outside of my home when I can.

Published by Meredith Gallie

My name is Meredith. I’m a mother of 4 boys living in NY on Long Island. I suffer from a chronic illness called Sjogren’s Syndrome. It is a debilitating autoimmune disease which has wreaked havoc on my body, causing me to become disabled and mostly housebound. Each day for me is about survival and caring for my children. My older boys are twins, one of which has autism. These are challenges that I must try to overcome each day, but I am thankful for my family. I’m thankful to have a loving husband who is able to help and provide a comfortable life for us. We are thankful for his hard work and dedication. I’m not a writer by any means, but I wanted to make this blog as an outlet for all the noise in my head, as well as something to focus on to keep my brain from melting into a pile of mush. I also hope my thoughts and experiences will help others out there with similar struggles. Some of my posts will be like a public diary, some will be advice and inspiration. Some posts will be dark and sad, some will be uplifting and inspiring. I’m just going to write according to whatever mood I’m feeling at the time. It’s a bumpy ride, but hopefully you find it helpful or entertaining. Enjoy!

6 thoughts on “Leveling Up in the Disability Game

  1. You’re amazing. When I was first put on oxygen I was so embarrassed. It was a daily struggle how do I explain that in 40 n need something like this.. how do I explain to my son that I’m not like everyone else.. I look up to you .. thank you for sharing.. I look forward to reading more

    Liked by 1 person

  2. I love watching your youtube videos. And now I am happy to visit your blog. I don’t know if I have sjogrens or not, but I can sure relate to you. I am not sure if you have a lot of pain or not, but I am not only exhausted by small things, I also feel like I have run a marathon. And my lungs are really messed up too. I have had dry eyes, mouth, nose my entire life. I used to be super skinny too. And can remember all those horrible comments people would make. Or the ugly stares, and eye rolling, and comments under their breath about my weight. And assume I had an eating disorder.

    I had seven children, so I learned how to eat through all the digestive difficulties. So my weight is no longer an issue. And that is about the only thing that isn’t an issue with my body. I started using a cane again. I tried to use one years ago, but my pride got the better of me. Now I have little choice, so it is a part of my life. I haven’t gotten brave enough to use the scooters in the store. Oh how I want to though. For me, it is just like you describe. I suffer such anxiety, that i have not been able to push past the extra added fears.

    I know all about isolation. The sicker I got, the more that I let go of. My husband didn’t want a sick wife, and I could no longer get up and “do my chores” as he put it. So we divorced. And he took my children from me. So I had to struggle with the anxiety, depression of being sick, and then the added of my entire life changing. It was so hard, and I got so sick, I couldn’t even sleep in a bed, because I couldn’t get back out of it. Also, I went from never in my life being alone, to being all alone. And that has been the last 10 years of my life.

    Anyway, I just wanted to say thank you for being you. You have been a real inspiration.

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      1. Oh I don’t need anyone to feel sorry. I just re-read what I posted. And I can see why anyone would think that. It was late and I was having a bad night and feeling sorry for myself. Most days I can push through and not whine. I have died three times in my life. And so if what I have seen on the other side is any indication of why people go through such things. It’s no big deal. I know you stated in a video that you are an athiest, I think, and I can not relate to that, because of my experiences with life and death. But I can certainly respect your beliefs, and see how anyone could come to such a conclusion. But I can relate to much of your trials. For instance, you said in a recent blog post, you were starting to lose your teeth. I lost mine when I was a teenager. By the time I was fourteen, I had nothing but rotted teeth.Even my wisdom teeth came in early and had to be cut out. I thought it was just hereditary. Well it is I suppose. My mother lost her teeth the same way. She also had all the same illnesses I have now. And she died very young, at the age of 60. I will be lucky to get to that age, I am fifty-two, and most days look like a walking dead person. lol My older sister died at the age of thirty-five, of cancer. So I consider myself fortunate. Even with all the sick days. And even though I am alone and often struggle with the isolation. I think I would be in real trouble if it didn’t bother me.

        I never complained to my family. I read in one of your blog posts that you try not to burden them or allow them to suffer your pain and suffering. Yeah I can certainly relate to that. No one in my famliy even knew I was sick most of the time. They never knew I had a life long phobia of being sick. They never once saw me have a panic attack. I hid it all from them. I pushed on through the pain and suffering. Cooking, cleaning, mowing the grass, doing endless laundry. Taking care of my dying sister, and dying parents. But after losing them, I lost my support system. And when my illness progressed, I could no longer hide it, and unable to do all the things I once did. Thankfully most of my children were grown, and living on their own, or married and starting their own families, and I only had three younger children left at home, they were eighteen, fifteen, and twelve. So they didn’t think they needed me much anyway. I was the one that missed their presence dearly. I love my children, and they were my life.

        As far as my husband, well what goes around comes around, and I leave his treatment of me in the hands of his Creator. It is not for me to judge.

        I can even relate to your hysterectomy story. Not your nearly dying due to it, or the pain and weakness it caused you, but the need for one. I was scheduled for one, and chickened out. I finally decided I made it this long, and surely I had not much more time to suffer with the pain, severe anemia for years and all that came with it. And I decided that I was born with it, and so I will die with it. And thankfully I was right. After two and a half decades of suffering it was over. But only another year from the time that I chickened out of the surgery. It took the doctor twenty-six years to convince me of the surgery, and a nurse, five minutes to talk me out of it.

        My isolation is not only due to my physical illness. I also was diagnosed as autistic at the age of fourteen. Back then, it was not common to get a diagnosis. At least in the small rural midwestern area I live in. And any help with it, was unheard of. I was always the oddball that walked to the beat of my own drum. While others have a problem with me at times, or look at me in sadness, due to my less than perfect demeanor at times, I love me. I am always striving to do better, but I don’t hate myself for being me.

        Anway, I am just happy to have found someone who writes and does videos on their life. One who sufferes so many of the same physical trials that I do. I have learned a lot from your acceptance not always being able to do the things you desire. And the way you discover ways around your difficulties.

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