A humorous insight to a single woman’s daily journey living with MS, through the years of progression.
I want to start by saying this was not intentional to write a story. It goes against the essence of my personality to openly talk about myself with strangers. I am by nature a private person who is very selective with those I share my life with.
But this past year has been one filled with hard truths, increased challenges with my mobility and ultimately bizarre, often comical if not so tragic encounters I find myself in on a daily basis.
The often missed humor in moments that others may find worrisome is in part keeping my sanity.
I have been blessed with the privilege of meeting some wonderful people in my life. And the major component of those special life long relationships has been our shared humor which has led to hours of laughter and has lifted me through some of my darkest moments.
It is this inherent ability to find humor without trying that makes those moments pure magic.
The other morning as I was pondering this seasons dilemma of daily rain all day, and blasting take your breathe away heat & humidity. I started to jot down a few thoughts as an outline for this.
Because this year the physical challenges are mounting and by far, I am working harder than ever to maintain my independence.
Heat & Humidity are my enemy. My limbs feel like I have glue on them, my feet feel like they are stuck to the floor, and at times just bending forward to stand is like I am strapped in the chair and trying to get up.
So add to that picture some of the daily tasks I encounter such as, the car.
Now driving to me is as much a part of me as breathing. When I noticed problems 2 years ago now that my foot was not lifting on command, I quickly went about learning and getting Hand Controls installed in my car. I should mention that I also have an outside lift on the car to transport my mobility scooter.
This is where things are getting difficult.
Although the lift is a great thing, so you can transport the scooter. It is not without flaws.
First I have to lower the platform (thank God that is power driven), drive the scooter onto the platform and then get off, raise it and here is where it gets tricky, bend down and secure a strap that holds it on the platform. Not so easy when balance and strength are your issues.
Now once I have done all that I can inch my way along the side of the car to get in. Once inside situated I am good to go. And have to do the entire process again at my destination. WHEW!
And you think I am not physically active?
I have been blessed with angels who come to assist me every day. I acknowledge that the Dear Lord has sent them and give thanks every evening. But in addition to the physical help they offer, often times those moments are filled with humor. Yes God has sent me Angels with a sense of humor! I love that!
It is these moments that I feel are worth sharing. For they offer a twist of thinking and an opportunity to laugh at myself.
I hope you see your angels each day.
Now this was a moment where in another part of my life was an opportunity to flirt and hopefully get to know this man.
I was pulling up to the dentist, parking across from a row of small store fronts. As I was inching my way to the back of the car, a voice was calling behind me asking can I assist you? As I turned I saw a rather nice looking older man, well groomed, nice trim physique. I immediately replied I would love that. As I showed him how to release the strap on the scooter, he observed this was a little difficult, so I piped in saying, what I need is a handicap van, but they are very expensive, he seemed to know as he nodded in agreement but then went on to say, yes and it might come with a personal driver as well!
And my response to that was, I love a Man who thinks Big! We both chuckled and off I went smiling and thinking to myself, in another situation we might have dated…
Only in Florida
I still find myself grinning when I think about this moment. I had just finished what I now refer to as” hitching up the horse to the wagon”, as I cant help but think this is what it must have be like living in the olden days when the pioneer woman went to town. They had to do all that first before going anywhere. Now that was hard work! Just like what I now find I am doing getting the scooter loaded on the lift. Anyway I had just gotten into the car when a very pregnant woman came up to the car and was inquiring if I was looking for an AIDE! Yes she was soliciting me for a job. She explained she was due in 2 weeks and she is a certified healthcare aide.
And so this is what I have come to, healthcare workers soliciting me for work. Things have really changed!
As I am out and about during the day I find myself in places with young mothers or women who are well into their senior years. So I notice similarities that we share. For instance. The new strollers that these women have are as big as my scooter. And I imagine close to it in weight. I watch them pull up in their SUV’s pop open the back, pull this thing out. Set it up, go into the car and get the baby, the baby seat, and finally take off in just under 15 mins FLAT! While I am still lagging behind, getting myself going takes me about 18-20 mins. On a good day!!
I have been approached by countless angels offering assistance, but a large number of them are pushing 90, and I just cannot accept their assistance. What if they got hurt helping me I would never forgive myself? But you have to admire their chutzpah. But somewhere inside me I feel a bit annoyed by this. I can’t help it. And then it came to me the other day why I was feeling this way.
OKAY, this is getting bad now; the 90 year olds are offering to assist me! I am only 57!
Now I have been a woman living single for just a little longer than living with MS. they sort of happened at the same time. I was getting divorced and ended up in the hospital where the Drs immediately started talking about MS as a diagnosis. I still continued to work for 10 years and have owned 2 homes. My life experiences are just as diverse and valuable as any of my married friends. The playing field for woman living single and managing a home, car, kids has always been difficult. But I now see a new resurgence of some old acquaintances, the “opportunity seekers” lining up to cash in at my expense. I have noticed when talking about a service or a purchase that people are treating me as if I just arrived on this planet today. We all have been in a situation where we see a sales talk. And we talk about elderly and how they are taken advantage of. But I am still the same old gal I have always been and don’t like when people try to take advantage. So it is with this new awareness that I have devised a simple strategy for dealing with the wise guys.
I AM MARRIED! I refer all conversations now to my “husband” to review, yes if I need a price for anything now that is how I handle it. I simply say I have to give it to the “boss” to review. I have even put some men’s items around my house, strategically placed tie on a doorknob and a pair of men’s shoes at the door! Hey this is combat if a service worker comes to the house for a repair set the stage. No need to broadcast my singlehood to anyone.
Anyone that has had to deal with a loss of mobility quickly learns how to be creative. I am sure that I am not the only one who uses a variety of tools in very different ways than what they were intended. You start to look at things differently. I have been known to use my cane for pushing a door open or pulling a public ladies room stall door shut behind me. I use it to close my car door I just hook the handle on the door handle and pull the door shut. I also use my cane for pulling bath tissue down off the shelf in a supermarket because they stack them to the ceiling! I will knock soft goods off a shelf into my basket (great for pasta), now these are things I never would have thought of doing before. I try not to think how I must look to a passerby; people always offer to assist when they see this. And one older woman told me I was VERY RESOURCEFUL! I am not promoting that we wreck the store, but if you shop alone and don’t have help, well you just have to be creative!
Getting your monies worth
If you have ever had a hospital stay you are familiar with just how frustrating that environment is. And in this world of billable items hospitals make sure they get every dime they can from you. A few years back I had a 2 week stay due to multiple fractures, my arm & foot. The day before the discharge physical therapy came to my room to order equipment needed to go home with. I thought well that is very thorough of them, making sure I will be safe at home. A few hours later the delivery arrived, a walker, a 3in1 commode, a wheelchair and a grabber. WOW, this is a lot of stuff. I really did not think about it until my friend arrived to take me home. He had brought my car which was a little better. He had a mustang coup.
The nurse arrived to wheel me down and we had to ask them for a luggage cart to drag all this stuff. When we got to the car my friend was starting to try and get the things into the car, he fought with dropping down the seats and loaded the trunk, but he could not get the commode in. As he was sweating he said it is not going to fit, and with that the nurse pushed forward and said in a very stern voice “Oh Its Gonna Fit” and she proceeded to direct him how to turn it so it will get in. Finally everything was loaded up including me. And my dear friend wiped the sweat off his brow turned the A/C up full blast and off we went. Almost immediately we both started laughing uncontrollably, I said I felt like she was going to strap that commode to the roof of the car if she had to. I felt like the Beverly Hillbillies driving down the highway. My car was loaded to the top with medical equipment! We laughed all the way home just playing that scene over.
Becoming a regular
Having been in the hospitality business for almost 20 years the phrase “A Regular” is one given to our exclusive repeat customers. The ones that spend money come often and never cause a problem. In short our best customers. So as I have lived in my home now for 10 years I have graced the halls of some of South Florida’s best healthcare facilities. With the economic downturn it has led to the downsizing in this industry as well and displaced top nurses and healthcare workers. One such hospital closed and the wonderful nurses and healthcare workers were left to find new employment. I had a short 5 day hospital stay last week at a local hospital. On my 3rd night I was getting comfy on my state of the art bed that has more controls on it than Apollo 7. I had just elevated my legs, slightly elevated my head for optimum TV viewing. The lights dim and volume low. And thanks to all the medication I was in that very mellow zone. When a healthcare worker came in to check on me, as I looked up it was a familiar face. He recognized me as well. We met 5 years ago when I was his patient at the now closed hospital. We quickly caught up as he tended to my needs and we shared the same banter once again. As he fluffed my pillow and said good night I felt safe and secure that Cas was on the night shift. And I drifted off to sleep knowing someone knows who I am. Not so bad to be a “regular”.
Cigars, Cigarettes, Tiparillo’s
Another staple in hospitals these days is the role that Registered Nurses play. There was a time when they were next to the Dr. in medical care. But with the development of all the new medications, more often than not your stay is primarily all about administering medication. And so the change in role. All the registered nurse is responsible for is doling out those meds. She has a fancy cart with a computer on board that she swings through the hallways as she is checking her screen to see what she can offer you. It is not just the medication to treat what ails you, but a wide variety of secondary meds. That you might need as well. Let’s not forget the bottom line. Meds are the #1 money makers in the hospitals. So when she arrived in my room, offering me everything from narcotic pain meds to blood thinners I could not help but see her as a 20th century Cigarette Girl. You know the ones who used to work in the Fancy Supper Clubs. They had a tray strapped around their neck with Cigars, Cigarettes and Tiparillo’s in it. I don’t know why that image popped into my head, maybe it has something to do with the little buzz I have from all the meds. Anyway that is my take on it.
In the Navy
In our supermarkets here in South Florida you will often see older retiree’s as bag boys. My local store has a very older man who is one of them. It seems he is determined to expire helping people out to their cars with grocery bags. I try to avoid him as my situation calls for strong able bodied assistance. And he scares me. So as luck would have it the other day I was on the check out line when he appeared. As he loaded my bags he said he would help me to the car. So off we went. After he put the bags into the car, it was my turn to get in. But as I tried to get up off the shopping scooter I could not get up. He then offered to help me up by putting his arm under mine. As I stood up I said to him I don’t want you to hurt yourself helping me. And he responded with telling me he was in the Navy and was used to doing this. Immediately my mind raced to “when was that” as he looked well into his late 80’s maybe 90,s. So we’re talking minimum 40 yrs ago. Time does stand still for some folks.
Join the circus
I started swimming shortly after my diagnoses almost 23 yrs. Ago. I moved to this community in part because we have a lovely aquatic center.I approached them with mixed feelings 6 months ago, to explore making a handicap access into the pool. It has been a struggle but they finally unveiled the lift this week. So on my inaugural first ride I found inner strength to overcome my self image issues by my dear friend humor.
I was instructed by the lifeguard that seemed very unsure of just how this thing worked, so with much trepidation I climbed aboard the chair, upon which I was handed the remote in a plastic bag (cannot get wet), that did not seem right. I was VERY apprehensive about doing this myself, the lifeguards were instructed not to assist. So as I hit the button, the chair swung out over the water. As I was sitting, feet dangling over the water, all eyes on me, I visualized in that moment. A carnival game were you throw balls and dunk the person sitting in the chair.
So as I descended into the water my mind switched to that image, my twist, DUNK THE DOLL.
I told it to the few men that were there and they all laughed, And I got past the fact it is a handicap chair. And so it goes.