Upside Down Turtle On Wheels

The past month has been a whirlwind of activity at our home. The end of the school year performances and parties, my wonderful family members purchasing paint & actually doing the labor of painting various areas of our house as an early birthday gift, and preparing for HeroesCon have all combined to keep me from overthinking things too much. While I haven’t necessarily accepted that my legs do not function like they should, I have realized that it is quite ridiculous to be unprepared for the times I can’t ignore the issues. Less than two years after being diagnosed with MS, I took the advice of my adaptive tech rep & my boss and agreed to discuss getting a power chair with my neurologist.

I’m still stubbornly disagreeing with my neurologist about what qualifies as a true fall, but I do admit to a few people that I stumble a lot. I don’t consider it to be a fall if I catch myself with the wall or a piece of furniture, but my doctors disagree and the conversation quickly changed from discussing a power chair as an option to a conversation about it no longer being a choice. An appointment was made with physical therapy and a rep from Numotion I had met previously through my adaptive tech rep and, even though I surprised them with my muscle strength, my short walk through the hallway must not have been nearly as impressive because there was no hesitation in their decision that I qualified.

The next few months were spent fretting over how to finance the chair because what the insurance didn’t cover was still quite a bit of money for our household. Vocational rehab said they would likely pay for some, but not all. Fast forward to the last week of school and, as we’re pulling into the parking lot to watch Turtle Mae perform in the talent show, I get a phone call from my caseworker saying they are paying everything that my insurance would not. Woohoo!

Although there have been a few hiccups along the way, my power chair has arrived. There are so many mixed emotions that come with the realization that I will be using one of these machines to make my way around in the world. I am glad that my hubby’s back will no longer suffer from hours of pushing my butt around when we go places. I’m embarrassed to openly admit that I am not as fine as I tell everyone I am and try to pretend to be (and yes, I know that’s silly). I’m both saddened and angered when I think about how much MS has taken from me in such a short time. I’m happy that I will be able to safely wander off on my own while shopping or at a comicon. I’m worried about what others will think about the healthy looking mom lazily using an electric wheelchair (even though it’s none of their business). I am incredibly nervous that I will knock over displays while working. I’m excited about the possibilities that come with this newfound mobility.

My sister is taking me out and about for a practice run before I take it to work and while I have several reservations about using the darn thing, I am sure I will be incredibly grateful that I have it on days when I am exhausted or my legs refuse to work. It will also be nice to have during those times when my legs are only a bit wobbly, but my hands are unable to use the rollator to keep me safe from falls. Be warned though, I was not the best driver in the world, so I’m sure I can’t be trusted with an electric chair either! If you see an upside down turtle riding around during these first few weeks, be sure to keep a safe distance!

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Truly Blessed

For the past year or so, the stairs leading up to the second floor of our home have been my enemy. I have stood near the bottom with legs wobbling, staring upward, and trying to find the ability to keep placing one foot in front of the other to get to my destination while my hubby stood behind me with the theme song from "Rocky" blaring on his phone. I’ve crawled on my hands and knees to make my way slowly to the top, used the “army crawl” on days when my hands were too painful or useless to help, and on really bad days I’ve been carried by my hubby. Turtle Monroe and I would have “butt bounce” races down the stairs in an effort to keep laughing at the situation.

We spoke with adaptive tech, vocational rehab, and independent living reps in the hopes of finding financial assistance for a stair lift but were turned down each time. Our stairs have a landing with a turn leading to a couple more steps and this extra twist would add to the expense which was definitely beyond our price range. After a while, crawling became my new normal and as long as no one was watching, I no longer recognized it as odd. Lately though, even this was getting increasingly difficult and I once again contacted different organizations  in an effort to find a discount of some sort to make a stair lift affordable.

Turtle Mae was allowed one ride to test it out

After a few more rejections, I remembered that the National MS Society works with various companies and organizations and decided to give them a call to see if they knew who would be good to contact. There are several companies in my area who install lifts and I had no idea which was the most reputable, cheapest, and offered the best financing options. When the MS Society said they only had one listing for my area I was surprised. The woman said she would be sending them an email and I would be receiving a call sometime soon. She also said that the organization she was contacting was a group of volunteers who may ask us to pay the cost of materials, but nothing more. I was floored, thanked her, and started to think that maybe we could make this happen after all.

This was heavy and turned out to be a bit of a challenge to install

I had never heard of Hickory Grove Baptist or Hearts & Hammers until I received a phone call within the week from a gentleman who said he had been told that I needed some equipment installed. I explained that I needed a stair lift and also would be interested in a quote for a threshold ramp as well and we set a time for him to come out the next morning. Once he arrived with another guy, he again asked what exactly I might need and they immediately began measuring. They handed me an application to fill out which was just a single page stating what I needed and why. Easy enough. While I filled it out they discussed options with each other.

The ramp installation was super quick!

The first gentleman sat down beside me and asked how exactly I had heard of their organization and gotten in contact with them. That was a short and simple story, but after I told it he shook his head in wonder. The National MS Society rep I had spoken to was in Colorado and my request had been sent through three offices in two states before reaching him the day before and it had all taken less than a week. He then told me that they would definitely be able to help me with the installations and I asked how much it would come to. He looked at me and held up his fingers to form a “0”. I'm fairly certain my eyes were wide and my jaw had dropped open before I asked him if he was sure. Within that very week, a stair lift had been donated which would work for my home (except the last two steps, but they had received donations of grab bars and we decided that would work for me to get to the chair on the landing well enough). Also, they had purchased a threshold ramp for another install that ended up not fitting, but my threshold measurements showed it would fit our home perfectly. What are the odds?

Two weeks later, a crew showed up and installed the threshold ramp, grab bars, and stair lift at no cost to my family.  MS has certainly brought it’s challenges, but it has also brought me several reminders that God truly does take care of us! This isn’t the first time we’ve been blessed by others and I continue to be amazed by the generosity of this world when times seem to be tough!

Making some final adjustments

If you want to check out Hearts & Hammers, they are an amazing organization that handles bathroom remodels, ramps, stair lifts, widens doorways, etc. They are one of the many mission groups of Hickory Grove Baptist and are helping churches in other states start their own Hearts & Hammers programs. Donate, spread the word about the fantastic work that they’re doing, or volunteer to help out with one of their local groups (this particular one handles 300 jobs per year on average). The guys that came out were some of the nicest you’ll ever meet and I can’t thank them enough for the great job they did!

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The MonSter Speaks

Usually I am able to stay fairly positive and convince myself that things really aren’t that bad, but sometimes at the end of the day the MonSter starts whispering and it’s difficult to ignore the fear. Three years ago I was able to walk without thinking about it, drive anywhere I wanted, and make plans for the future without any idea that they would be drastically altered. Two years ago I was still walking and, other than a headache and occasional slurred words, wasn’t terribly concerned about what was going on thinking it was probably all related to my migraines and easily fixed by the right doctor. Now I am staring at a stair lift and power chair wondering what will be taken away next.

I’ve had moments in these last two years during which I couldn’t speak, struggled to use my hands to feed myself, and my legs were just dead weight. Clearly this indicates damage to the nerve pathways controlling these actions which will most likely worsen over time. How much time? Tomorrow? Twenty years from now? Never? I have no way of knowing and it’s terrifying to think about. Most of the time I can silence the tiny voice inciting panic, but today it is screaming and its words are overwhelming. By tomorrow morning it will once again be back to just a whisper and I will go about my day telling everyone, including myself, that I am fine and there is nothing to worry about. Tonight though…..Tonight I will allow myself to grieve the parts of me that have been destroyed by this thing called MS, let my thoughts wander through the worries of tomorrows, and indulge in sobs until the tears have washed the voice to the far corners of my mind once more.

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