Surviving As Mom

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.